Keeping you all informed of what you might expect from a chronic pain disorder, post decompression ACM and trying to cope with a life that refuses to stop so we can get out bearings was one of the big goals of this project when I decided to start writing online again. Well, the truth is that this was an overly ambitious goal to say the least. I live in what I'm choosing to call a perpetual state of astonishment where I keep suffering surprises. I began this journey with certain complaints that were always wirh me. I had a headache all the time which managed to be painful all the time even though the pain increased and decreased in intensity.
Other symptoms rotated in and out like linemen that a football coach is trying to keep fresh and ready for the fourth quarter of a tough game. There was the dizziness that didn't seem related to other symptoms as well as dizziness secondary to sudden bursts of pain or to sensory overload. There were seasonal changes that left me trying to look forward to summer with its more intense bursts of pain mixed with relatively long periods of what you might call relief. I was able to go out and do things in summer. With summer's long reach around here causing heatwaves as late as October, the adjustment from summer to winter symptoms is the most difficult.
This brings along the mountain of doubt that I feel each year as winter sinks into my muscles and bones. Is it worse this year or is it possibly better? Am I going to experience one of those much lauded Christmas miracles or could this be the year that my poor habits kill me? This is when I realize that I am just going through another one of those Fall transitions. Lo and behold! I have a headache. It's the same headache I've had since I was 25 but it's a real surprise over and over. Every year, it's a surprise and I fret about it being a surprise. Am I suffering some sort of bizarre early onset form of dementia? No! Of course not.
Once again, I am going through impostor syndrome where I doubt my own value in any currency. I do have a tremendous amount of personal experience that crosses many lines to combine things that do not go together in many lives. For example, Melissa and I have the extensive experience in choosing a restaurant or a table at a restaurant based on how the choice will affect my symptoms. I maintain the fervent hope that you might benefit from my experience preferably before you join me in my scars.
I will continue to muddle on, of course. My beloved wifey and life coach will continue to help me decide what the best option for dealing with each obstacle. Is a particular pain flare something that got through my best defenses of layered medications or did I forget something? Is my duragesic pain patch in place or did it fall off? Did I get distracted while changing the previous patch and only remove the old without putting the new one on? Did I forget one of my oral medications? Usually, it isn't quite so dramatic. Usually, a weather front is on its way and my early warning radar decides to announce the fact long before the news would be useful. Combine that with a lack of sleep and doomsday approaches.
Please bear with me, folks. I'm looking for the reset button.
Monday, December 7, 2015
Sunday, November 22, 2015
Stupid Nightmares
It was a version of the same nightmare I've had since the fourth grade yet it was brutal in its own way. I can barely function here at home by myself and I'm by myself at least half the time. I sit very still so that no one will know that I'm home. I don't even wait for an actual knock on the door before I fret these days. In the idiom of Pearl Jam's "Rearviewmirror," the shades are never raised. Neither parent made an appearance in this dream which might be the worst part. They sent a representative whom I met outside my front door. She had a terrible Asian accent that my damaged brain simply will not comprehend very well and she listed a series of demands from them that were horribly impractical for someone in my state.
The threat attached to the demands was the same it has always been in my nightmares about the parents with an extra twist. When I informed this representative that I would not answer the door and would call the cops at the first sign of either parent, she presented me with a document. It was simply an official demand that they leave me the hell alone. The threat of it being "in writing" was the same threat that I try to deal with by writing about this trauma here so often. I would be exposed as someone too easily hurt because everyone knows what wonderful people they are. In short, I'd be wearing a "Scarlet TS" for Terrible Son. I've been dealing with those consequences for the better part of a decade. I got rid of the poisonous relationships that left me wanting to die and, in the process, they took the rest of the family with them.
No matter what the settings may be, the dreams are always the same. I get to face their disapproval and condemnation with the added feeling that they never asked for much where a healthy person is concerned. Therefore, all the mostly healthy members of my family and their adult friends "know" that I could just try harder. After all, the current situation is unacceptable and unreasonable and I couldn't agree more. There's also no one damned thing that I can do about it. I live each day amid a collection of rocks and hard places while making the best of it.
The good news is that I don't have to beat down fantasies of killing myself anymore. As I suspected and, more than anything, hoped, removing myself from a bad situation was the closest I could find to a cure. As miserable as I feel mentally and physically, it's just a shadow of what they did to me on a regular basis. I will hurt, probably yell out in agony, sit absolutely still so that my grey kitty won't choose to abandon me. Instead, this little 10-12 pound cat will try to beat her dinner out of me. I'm only 41 and I'm frail enough to feel it.
Maybe that cup of coffee will help.
The threat attached to the demands was the same it has always been in my nightmares about the parents with an extra twist. When I informed this representative that I would not answer the door and would call the cops at the first sign of either parent, she presented me with a document. It was simply an official demand that they leave me the hell alone. The threat of it being "in writing" was the same threat that I try to deal with by writing about this trauma here so often. I would be exposed as someone too easily hurt because everyone knows what wonderful people they are. In short, I'd be wearing a "Scarlet TS" for Terrible Son. I've been dealing with those consequences for the better part of a decade. I got rid of the poisonous relationships that left me wanting to die and, in the process, they took the rest of the family with them.
No matter what the settings may be, the dreams are always the same. I get to face their disapproval and condemnation with the added feeling that they never asked for much where a healthy person is concerned. Therefore, all the mostly healthy members of my family and their adult friends "know" that I could just try harder. After all, the current situation is unacceptable and unreasonable and I couldn't agree more. There's also no one damned thing that I can do about it. I live each day amid a collection of rocks and hard places while making the best of it.
The good news is that I don't have to beat down fantasies of killing myself anymore. As I suspected and, more than anything, hoped, removing myself from a bad situation was the closest I could find to a cure. As miserable as I feel mentally and physically, it's just a shadow of what they did to me on a regular basis. I will hurt, probably yell out in agony, sit absolutely still so that my grey kitty won't choose to abandon me. Instead, this little 10-12 pound cat will try to beat her dinner out of me. I'm only 41 and I'm frail enough to feel it.
Maybe that cup of coffee will help.
Thursday, November 12, 2015
Different Types of Pain
I'm not going to bother being superstitious here and avoid mentioning a small break in my tooth pain. It will be back soon enough most likely as soon as I crack or break another tooth. Before my dental disasters, I was able to divide pain into two categories. Summer pain was sharp, concentrated in the back of my head and involved a jump from maybe a six on the pain scale to a ten plus if a storm came within half a continent of me. Thankfully, tea or beer and medicine was enough to help me deal with it and it would pass within a couple of hours of the storm's end. Call it short but sour.
Winter pain was arthritis and this other burning, aching pain that made no sense. Also, I had this lactic acid burn in my arms where I felt like I had flapped them to travel hundreds of miles. It was less intense than summer pain but I just didn't get a break from it. Over time, I went on medication to deal with the arthritis which is only a problem now when my hands are borderline suffering from frostbite if you could get that in the house. My burning ache that I feared was some sort of bone cancer originally turned out to be fibromyalgia and it has responded pretty well to medicine. The lactic acid burn in my arms was what I half jokingly call RAS which means Restless Leg Syndrome in the arms or Restless Arm Syndrome which I prefer. The medicine for that works best if I feel my arms swaddled in nice long sleeve flannel style shirts
As much as it seems otherwise, I don't just sit around complaining about my symptoms. Through trial and error or finding similarities, I find treatments for my symptoms. The teeth are different because they can keep me at a ten plus on the scale for days at a time. I would not be able to wish this on my metaphorical worst enemy and I've made up with all of my worst enemies from school days. I would forgive you for believing that any day without the worst of the tooth pain is heavenly by comparison. After all, that's the way it should be.
Overnight into this morning, my arms felt like someone was giving me electric shocks except not just short bursts of it. The electric pain is constant though it's dulled by this nice shirt that makes me sweat like (insert something funny) and probably smells less than funny. It just goes to show you that there are all sorts of pain, the pain you're in is always the worst pain
Some sleep would probably help me gain more ground.
Winter pain was arthritis and this other burning, aching pain that made no sense. Also, I had this lactic acid burn in my arms where I felt like I had flapped them to travel hundreds of miles. It was less intense than summer pain but I just didn't get a break from it. Over time, I went on medication to deal with the arthritis which is only a problem now when my hands are borderline suffering from frostbite if you could get that in the house. My burning ache that I feared was some sort of bone cancer originally turned out to be fibromyalgia and it has responded pretty well to medicine. The lactic acid burn in my arms was what I half jokingly call RAS which means Restless Leg Syndrome in the arms or Restless Arm Syndrome which I prefer. The medicine for that works best if I feel my arms swaddled in nice long sleeve flannel style shirts
As much as it seems otherwise, I don't just sit around complaining about my symptoms. Through trial and error or finding similarities, I find treatments for my symptoms. The teeth are different because they can keep me at a ten plus on the scale for days at a time. I would not be able to wish this on my metaphorical worst enemy and I've made up with all of my worst enemies from school days. I would forgive you for believing that any day without the worst of the tooth pain is heavenly by comparison. After all, that's the way it should be.
Overnight into this morning, my arms felt like someone was giving me electric shocks except not just short bursts of it. The electric pain is constant though it's dulled by this nice shirt that makes me sweat like (insert something funny) and probably smells less than funny. It just goes to show you that there are all sorts of pain, the pain you're in is always the worst pain
Some sleep would probably help me gain more ground.
Tuesday, November 3, 2015
Fall of the (Ability to Make Bad Puns)
I wanteed to start this post off with a bad pun about Fall in the title but my ironic sense of humor would jinx me if I made a pun about falling. Physical humor isn't my strongest suit right now and I'd rather not have to check off that box about falls with injuries at the pain doc. (Have you over the past year suffered one or more falls with injury? 2 or more falls without injury?) That's not the right quote but I always got the odd impression that they cared more about falls without injury than those with. It's either some highly advanced diagnostic tool or a typo that no one has caught yet.
If I were to make a typical bad joke, I'd have to say that Autumn fell on me with the usual ton of bricks. You would think that all the tooth pain would numb me to the more typical fibromyalgia/Chiari pain but it doesn't work that way. It's a different sort of pain (Thank God!) so practice coping with one does not assist against the other. I learned this in the latest installment of "John decides he's doing something terrible." Narcotic pain medication does not affect tooth pain at all. There is a biological/chemical reason for this that the experts understand and I know from experience. In fact, alcohol doesn't do much of a job against it either. Therefore, my only defense against tooth pain that has spiralled out of control is to sleep.
At one point, I confused one (or possibly several) of my doctors when I explained how pain helped me sleep. It's a rather indirect relationship but pain forced me to learn to relax my body and mind. Narcotics require a willing mind to get the job done even with the things they handle well. You can't fight to stay alert and get proper pain relief at the same time. Fighting to stay alert is something I learned too long ago to set aside easily but, when I manage to set it aside, I drop off to sleep way too easily. I go from insomniac to a layman's narcoleptic with the flip of a switch. It doesn't matter what I'm doing. I've fallen asleep eating way too many times and I'm glad I quit smoking going on 20 years ago. Has anyone else fallen asleep completely upright without falling over? I'm not even talking about sleepwalking. Ironically, the main instance of this that I can remember involved standing at a light switch that I had just flipped.
Learning to manage pain helped me learn to sleep so I've never had to check the box about pain depriving me of sleep. Well, this month's paperwork will be a first. I decided that I was drinking way too much and losing my pain tolerance. (Try growing up hearing that you're wimpy for not having any pain tolerance and then having to report chronic pain to a physician. The constant self examination wears me down.) I had asked for some beer for my birthday since I like the taste of it so much and my beloved bought me a 4-pack of really good and potent German beer. Since I was having a nice little vacation from the intense tooth pain, I decided that I didn't require whiskey for pain at all. Some beer would do nicely.
Well, a weather front of one variety or another came rushing through and that beer went fast. I was in screaming/howling agony overnight as Melissa sat up with me for quite a while trying to keep me calm or, at least, not frothing from the mouth. At one point, I could tell she was just as upset as I was when she joined me in wishing a liquor store could just open up. Well, we survived the night and I got my bottle. It lasted a couple of days at most because I was interested in being semi-conscious at most.
As with any total loss of pain control that I've had, there were a few days of what you might call aftershocks. At the same time, I was suffering from the usual muscle cramps, spasms, twitching, headaches, neck pain and that really big guy who was pummeling me with the kitchen sink. That's when I remembered the whole Fall thing. Changes in temperature are bad for me. The aftershocks may be over but I've learned a new rule. Running out of money and whiskey at the same time while in extreme pain is a bad thing. I should be able to get whiskey on my prescription drug plan and, yes, I'm happy with generic mixed with tap water. Well, I guess satisfied is more appropriate than happy.
Must remember to act early. Pain is easier to stop the lower it is on the pain scale. Also, must remember to rest this afternoon.
If I were to make a typical bad joke, I'd have to say that Autumn fell on me with the usual ton of bricks. You would think that all the tooth pain would numb me to the more typical fibromyalgia/Chiari pain but it doesn't work that way. It's a different sort of pain (Thank God!) so practice coping with one does not assist against the other. I learned this in the latest installment of "John decides he's doing something terrible." Narcotic pain medication does not affect tooth pain at all. There is a biological/chemical reason for this that the experts understand and I know from experience. In fact, alcohol doesn't do much of a job against it either. Therefore, my only defense against tooth pain that has spiralled out of control is to sleep.
At one point, I confused one (or possibly several) of my doctors when I explained how pain helped me sleep. It's a rather indirect relationship but pain forced me to learn to relax my body and mind. Narcotics require a willing mind to get the job done even with the things they handle well. You can't fight to stay alert and get proper pain relief at the same time. Fighting to stay alert is something I learned too long ago to set aside easily but, when I manage to set it aside, I drop off to sleep way too easily. I go from insomniac to a layman's narcoleptic with the flip of a switch. It doesn't matter what I'm doing. I've fallen asleep eating way too many times and I'm glad I quit smoking going on 20 years ago. Has anyone else fallen asleep completely upright without falling over? I'm not even talking about sleepwalking. Ironically, the main instance of this that I can remember involved standing at a light switch that I had just flipped.
Learning to manage pain helped me learn to sleep so I've never had to check the box about pain depriving me of sleep. Well, this month's paperwork will be a first. I decided that I was drinking way too much and losing my pain tolerance. (Try growing up hearing that you're wimpy for not having any pain tolerance and then having to report chronic pain to a physician. The constant self examination wears me down.) I had asked for some beer for my birthday since I like the taste of it so much and my beloved bought me a 4-pack of really good and potent German beer. Since I was having a nice little vacation from the intense tooth pain, I decided that I didn't require whiskey for pain at all. Some beer would do nicely.
Well, a weather front of one variety or another came rushing through and that beer went fast. I was in screaming/howling agony overnight as Melissa sat up with me for quite a while trying to keep me calm or, at least, not frothing from the mouth. At one point, I could tell she was just as upset as I was when she joined me in wishing a liquor store could just open up. Well, we survived the night and I got my bottle. It lasted a couple of days at most because I was interested in being semi-conscious at most.
As with any total loss of pain control that I've had, there were a few days of what you might call aftershocks. At the same time, I was suffering from the usual muscle cramps, spasms, twitching, headaches, neck pain and that really big guy who was pummeling me with the kitchen sink. That's when I remembered the whole Fall thing. Changes in temperature are bad for me. The aftershocks may be over but I've learned a new rule. Running out of money and whiskey at the same time while in extreme pain is a bad thing. I should be able to get whiskey on my prescription drug plan and, yes, I'm happy with generic mixed with tap water. Well, I guess satisfied is more appropriate than happy.
Must remember to act early. Pain is easier to stop the lower it is on the pain scale. Also, must remember to rest this afternoon.
Thursday, October 1, 2015
Defending Against Despair (Pain, Fear, Doughnuts and Coffee)
Life continues to spiral out of control to the point being closer to an amusement park ride than something with me behind the wheel. The wheel is mostly there for decoration and there are no brakes. I don't expect this condition of helplessness to last forever but, while it does, I need to enjoy what I can. After all, amusement park rides are fun for those of you without reconstructed skulls and necks. I have been in a productive writing period trying to describe what life in constant pain is like. For the longest time, I was afraid that I might answer the question of how I survive by downplaying the pain. I had a terror of someone saying that I was some con artist playing the system and living an ideal life no matter how unqualified they might be.
My parents made such accusations but hardly ever explicitly. A pair of losers once wrote me emails explaining in great detail how I was wrong about everything important and so I should kill myself. With my history, that's the last thing I needed but that wasn't going to keep me from writing. Worst of all, thinking about anything other than pain and suffering results in a nice sucker punch to the gut from guilt. I'm not supposed to be enjoying this!
Chances are that I will die in agony sooner than I would like and there's nothing that I can do to change that. That is a terrifying prospect but accepting it does not bring despair. The perception of guilt is what provides me with despair and I focus a lot of effort on fighting off that corrosive guilt. It's been a few years since I promised myself that I would make some changes. I was going to stop feeling guilty about being sick. The second part was going to be tougher but I was going to stop feeling guilty over Melissa caring for me. We both take our wedding vows seriously and I do what I can for her. In order to be easier to care for, I was going to make coping with my symptoms and their complex effects my number one daily priority. I came to the realization that dealing with chronic pain that's this bad is a full time job with hours that no one would accept by choice.
For those of you who wish to tell me how self serving this concept is, I have nothing but agreement. That's the point of it. I'd like to take a bit of the burden off Melissa but it's more self serving than that. I have two general approaches that I could take to all but knowing that I'll die in agony someday. (It's not a diagnosis but I'm living in agony so it's not much of a stretch.) One is deciding to hurry things along and we're tossing that one out the proverbial window. The other is to concentrate on the things that I enjoy the most while trying to keep things from spinning out of control. Once things are spinning this badly, I refuse to yell at any helpless son who may be in the room so my choices are to enjoy the ride or to projectile vomit. Thankfully, I have a strong stomach.
The alternative to holding on to those aspects of life I cherish is self destruction. Once upon a time, that was my default position. I'm not going sit by and watch while the wolves come smashing down my door and destroy everything. When the time comes, and it should be a matter of a week or two now, I'll fight my best fight. Chances are that I will face quite a few setbacks but my goal is to avoid kicking myself for failing to avoid them. Let's make it a given that setbacks will be the direct result of some poor decision making. It's also a given that I would have made different decisions if I weren't bombarded by pain.
I will learn from these mistakes, I will attempt to make positive changes based on what I learned but I will not accept ultimate blame for them anymore. If I weren't in absurd amounts of pain, I wouldn't be making these mistakes. I'd make other, more entertaining mistakes.
All of that said, I'm enjoying some things about my life right now. I have some tremendous games on my Android tablet right now. "Star Wars: Uprising" is getting better and better as I learn to play it. It's a role playing game, which means something a little different in computer games than it does in the paper and dice games I miss. Instead of engaging with other people on the level of imagination, you do similar things with the graphics right in front of you. The greatest strength of paper and dice RPGs is the unlimited imagination potential involved. If I want to make the bad guy truly terrifying, I might borrow a few real crimes committed by historical serial killers or I could go the other route and invent a cereal killer. (He's...ummm... "crazy" about Cocoa Pops.) A computer RPG will tend to pull back on anything graphic (pun intended) and have you kill endless numbers of nameless stormtroopers.
Computer RPGs depend on a player's willingness to perform tasks usually called "grinding." (Other times, it's called "farming.") In order to be powerful enough to sneak aboard the Star Destroyer, you have to battle stormtroopers in skirmishes a few hundred times. Grinding isn't all that bad if the game is balanced right. For every x number of hours spent grinding, you get y number of cool new abilities. Just when I was getting bored with how badly the troopers outgunned me, I acquired a new weapon that put out a greater volume of fire.
I am getting tired and I'd love to write about more of the better things in life (without embarrassing Melissa who is the best part of life - Oops!) but I learned long ago that begrudging myself naptime is an idea bad enough to be trademarked. Just remember that nothing has changed except what I'm showing you. There's pain, fear, doughnuts and coffee.
My parents made such accusations but hardly ever explicitly. A pair of losers once wrote me emails explaining in great detail how I was wrong about everything important and so I should kill myself. With my history, that's the last thing I needed but that wasn't going to keep me from writing. Worst of all, thinking about anything other than pain and suffering results in a nice sucker punch to the gut from guilt. I'm not supposed to be enjoying this!
Chances are that I will die in agony sooner than I would like and there's nothing that I can do to change that. That is a terrifying prospect but accepting it does not bring despair. The perception of guilt is what provides me with despair and I focus a lot of effort on fighting off that corrosive guilt. It's been a few years since I promised myself that I would make some changes. I was going to stop feeling guilty about being sick. The second part was going to be tougher but I was going to stop feeling guilty over Melissa caring for me. We both take our wedding vows seriously and I do what I can for her. In order to be easier to care for, I was going to make coping with my symptoms and their complex effects my number one daily priority. I came to the realization that dealing with chronic pain that's this bad is a full time job with hours that no one would accept by choice.
For those of you who wish to tell me how self serving this concept is, I have nothing but agreement. That's the point of it. I'd like to take a bit of the burden off Melissa but it's more self serving than that. I have two general approaches that I could take to all but knowing that I'll die in agony someday. (It's not a diagnosis but I'm living in agony so it's not much of a stretch.) One is deciding to hurry things along and we're tossing that one out the proverbial window. The other is to concentrate on the things that I enjoy the most while trying to keep things from spinning out of control. Once things are spinning this badly, I refuse to yell at any helpless son who may be in the room so my choices are to enjoy the ride or to projectile vomit. Thankfully, I have a strong stomach.
The alternative to holding on to those aspects of life I cherish is self destruction. Once upon a time, that was my default position. I'm not going sit by and watch while the wolves come smashing down my door and destroy everything. When the time comes, and it should be a matter of a week or two now, I'll fight my best fight. Chances are that I will face quite a few setbacks but my goal is to avoid kicking myself for failing to avoid them. Let's make it a given that setbacks will be the direct result of some poor decision making. It's also a given that I would have made different decisions if I weren't bombarded by pain.
I will learn from these mistakes, I will attempt to make positive changes based on what I learned but I will not accept ultimate blame for them anymore. If I weren't in absurd amounts of pain, I wouldn't be making these mistakes. I'd make other, more entertaining mistakes.
All of that said, I'm enjoying some things about my life right now. I have some tremendous games on my Android tablet right now. "Star Wars: Uprising" is getting better and better as I learn to play it. It's a role playing game, which means something a little different in computer games than it does in the paper and dice games I miss. Instead of engaging with other people on the level of imagination, you do similar things with the graphics right in front of you. The greatest strength of paper and dice RPGs is the unlimited imagination potential involved. If I want to make the bad guy truly terrifying, I might borrow a few real crimes committed by historical serial killers or I could go the other route and invent a cereal killer. (He's...ummm... "crazy" about Cocoa Pops.) A computer RPG will tend to pull back on anything graphic (pun intended) and have you kill endless numbers of nameless stormtroopers.
Computer RPGs depend on a player's willingness to perform tasks usually called "grinding." (Other times, it's called "farming.") In order to be powerful enough to sneak aboard the Star Destroyer, you have to battle stormtroopers in skirmishes a few hundred times. Grinding isn't all that bad if the game is balanced right. For every x number of hours spent grinding, you get y number of cool new abilities. Just when I was getting bored with how badly the troopers outgunned me, I acquired a new weapon that put out a greater volume of fire.
I am getting tired and I'd love to write about more of the better things in life (without embarrassing Melissa who is the best part of life - Oops!) but I learned long ago that begrudging myself naptime is an idea bad enough to be trademarked. Just remember that nothing has changed except what I'm showing you. There's pain, fear, doughnuts and coffee.
Tuesday, September 29, 2015
The Tears Won't Fall
I keep finding myself wanting to cry but I can't. Each time thar I lose something life affirming, it feels as though the bottom of the pit must be closer. Normally, that wouldn't bother me because I have a fondness for trampolines. Now, I'm like the player who has survived a game of Russian Roulette that has gone on for dozens of rounds. Getting back to my original metaphor, I know that one of these pits has gigantic poisoned metal spikes in the bottom instead of something to get me out of the pit. Depending on how you look at it, life should either have to stop demanding things of me until I'm feeling better or I should get an extended break from the pain and stress to deal with those facts of life.
One problem is that I can just hear my feather's criticism echoing from the past. "John, you're already getting an unreasonable amount of help. It doesn't matter that your health keeps getting worse. I've decided that you can deal with everything because it must be done. It must be done so you do it or get your wife to do it." Forget that it is impossible to do certain things and just do them. It's a great movie plot but it's more like being up shit creek without a paddle in real life. Getting my wife to do it is my favorite line. She has her limits, too. Somehow, she exceeds them every day functioning while at least as frustrated as I am.
A good friend wrote me and told me that her nightmares about her father still bother her 30 years after his death. It doesn't surprise me since my father has been as good as dead to me for a couple of years which is a huge improvement but the nightmares didn't stop. Death doesn't fix the issues you have with someone in life. All it does is make it impossible to gain closure. Then again, another friend advised me of the cold hard truth a long time ago: I will never gain my parents' approval. It wasn't cruelty in its proper context. My suicidal ideation was based on frustration about being about to win their love and approval. Taking away the impossible goal helped me be more realistic about my own expectations.
Life is not all bad even on my hellishly painful days. On my very good days, I can spend a number of hours here at my desk being productive. These days are rare but one can help me get more out of the reasonably good and average days. We're talking a couple of hours at my computer where I might salvage one productive hour of work by combining all I wrote. There are two generally unproductive modes for me to be in and they both involve me being downstairs. If I have some energy, I can use the Playstation which requires me to sit upright to do well. Finally, I can use the tablet well into a state of collapse. My tablet might be the best gift from Melissa since she married me.
Recently, I've installed some new games on the tablet. One is "Cooking Fever" which Melissa enjoys as well and the other is "Star Wars: Uprising." Uprising is unbelievably good so it's a shame that it doesn't run on the old (Melissa's) tablet and she's filled her phone with games. Even on the worst of days, I can divert myself without adding to the wear and tear which is a good thing. Keeping with the "logic" of life back when I was living with my parents, anything I enjoy has to be taken away or, at least, threatened. After all, there is an inverse relationship between the amount of frustration in my life and my grades. (Near flashblack there. I wouldn't be able to write during a true flashback but I want anyone going through similar things to understand. Damage done early on is the worst and most difficult to fix.)
Anyway, I've been having trouble keeping my tablet charged. Sometimes, one of the connections comes loose usually out of my sight. Other times, it just doesn't seem to be taking in much of a charge. I know the battery is the whole point and I'm supposed to hate wires but I'd very much like a cord that plugs directly into a wall that carries more charge than my favorite games use second to second.
This post started when I couldn't keep enough charge in the tablet to check my email and learned that the charger was unplugged at the wall. It was a simple fix but I wanted to do my evening writing. One thing led to another and I found myself ready to detonate in pain and frustration. I never did manage to shed a tear just like I've never been able to mourn the years that have passed since I was 25. On the other hand, I'm guaranteed major pain today/tomorrow because I haven't been sleeping right. I predict screaming, hollering, yelling at a cat who scratched up a Pearl Jam CD in an attempt to be fed ever earlier. I wonder if Maddie sabotaged my tablet.
One problem is that I can just hear my feather's criticism echoing from the past. "John, you're already getting an unreasonable amount of help. It doesn't matter that your health keeps getting worse. I've decided that you can deal with everything because it must be done. It must be done so you do it or get your wife to do it." Forget that it is impossible to do certain things and just do them. It's a great movie plot but it's more like being up shit creek without a paddle in real life. Getting my wife to do it is my favorite line. She has her limits, too. Somehow, she exceeds them every day functioning while at least as frustrated as I am.
A good friend wrote me and told me that her nightmares about her father still bother her 30 years after his death. It doesn't surprise me since my father has been as good as dead to me for a couple of years which is a huge improvement but the nightmares didn't stop. Death doesn't fix the issues you have with someone in life. All it does is make it impossible to gain closure. Then again, another friend advised me of the cold hard truth a long time ago: I will never gain my parents' approval. It wasn't cruelty in its proper context. My suicidal ideation was based on frustration about being about to win their love and approval. Taking away the impossible goal helped me be more realistic about my own expectations.
Life is not all bad even on my hellishly painful days. On my very good days, I can spend a number of hours here at my desk being productive. These days are rare but one can help me get more out of the reasonably good and average days. We're talking a couple of hours at my computer where I might salvage one productive hour of work by combining all I wrote. There are two generally unproductive modes for me to be in and they both involve me being downstairs. If I have some energy, I can use the Playstation which requires me to sit upright to do well. Finally, I can use the tablet well into a state of collapse. My tablet might be the best gift from Melissa since she married me.
Recently, I've installed some new games on the tablet. One is "Cooking Fever" which Melissa enjoys as well and the other is "Star Wars: Uprising." Uprising is unbelievably good so it's a shame that it doesn't run on the old (Melissa's) tablet and she's filled her phone with games. Even on the worst of days, I can divert myself without adding to the wear and tear which is a good thing. Keeping with the "logic" of life back when I was living with my parents, anything I enjoy has to be taken away or, at least, threatened. After all, there is an inverse relationship between the amount of frustration in my life and my grades. (Near flashblack there. I wouldn't be able to write during a true flashback but I want anyone going through similar things to understand. Damage done early on is the worst and most difficult to fix.)
Anyway, I've been having trouble keeping my tablet charged. Sometimes, one of the connections comes loose usually out of my sight. Other times, it just doesn't seem to be taking in much of a charge. I know the battery is the whole point and I'm supposed to hate wires but I'd very much like a cord that plugs directly into a wall that carries more charge than my favorite games use second to second.
This post started when I couldn't keep enough charge in the tablet to check my email and learned that the charger was unplugged at the wall. It was a simple fix but I wanted to do my evening writing. One thing led to another and I found myself ready to detonate in pain and frustration. I never did manage to shed a tear just like I've never been able to mourn the years that have passed since I was 25. On the other hand, I'm guaranteed major pain today/tomorrow because I haven't been sleeping right. I predict screaming, hollering, yelling at a cat who scratched up a Pearl Jam CD in an attempt to be fed ever earlier. I wonder if Maddie sabotaged my tablet.
Monday, September 28, 2015
Open Warfare in My Head
In a bold move unanticipated by everyone involved, my Fall symptoms exploded a bomb in the back of my head covering the entire surgical area. That area is defined by the surgical scar that starts down between the very top of my shoulder blades and continues all the way up to the top of my head where a local doctor found a staple while treating me for some completely unrelated thing. It was removed two years late but everyone is confident that it had nothing to do with my surgery's unsuccessful outcome. Simultaneously, my shattered teeth secreted some sort of acid that made my whole mouth hurt. Finally, another bomb exploded in my jaw connecting the pain in the front of my head to the pain in the back and in the neck.
All I could do was cover the entire inside of my mouth with one of those Orajel style products, take my medicines on time and recline with a cold pack wrapped around as much of my face as it could cover. The key was to remain calm and hold on because one of the medicines was going to work or someone was going to bring me home some medicinal reinforcement. (It's formal name is whiskey but I don't drink it for the taste.) I'll explain later why I didn't have any on hand but I knew that I would make it eventually. Time passes including both the good and bad aspects of life.
As I made it to that meditative state that leads to sleep when I'm physically exhausted. We call those days that end in "y." As soon as the pain was on the separate side of my mind from where I was living, the cat signal went off. (I have trouble describing meditation adequately because I learned so much of it from reading science fiction and fantasy novels.) Maddie insisted that 2 PM was actually 5 PM and so her dinner was about to be late. Normally, I meditate to the sound of my own breathing but a yowling cat makes regular breathing difficult so I played a favorite Pearl Jam CD. It's the bootleg from the night Melissa and I attended. (It's a legal bootleg produced and sold by the band in case you're wondering. I'm not hypocritical about intellectual property rights.)
Madeline (the evil bitch cat from hell or my sweet baby girl depending on the circumstances) jumped up on my CD player and popped out the CD while it was playing. She scratched it up pretty good in the process but I'm hoping to work these scratches out like the ones resulting from being stored badly for months at a time. Unfortunately, Maddie decided that she didn't want me to relax and feel better. She wanted to be fed and didn't care who had to crawl across the broken glass and glowing charcoal floor to do it. (It's my blog. I'll exaggerate when I want to.) She did take several more flying leaps at me and I am touch sensitive all over my body during winter symptoms. Eventually, I hid myself behind a closed door in the office and tried to work while my neighbor the car detailer sent metal spikes through my head. He was cleaning a van and his customer was shouting a conversation over that noise.
Chilly Weekend and Rough Passage are coming along pretty well. I tend to write late at night when the office is most useable to me. One thing slowing the work down is having to listen to my body. Every so often, I can keep one of my symptoms from dialing itself up to 11 by giving my body what it needs. Usually, that's rest or sleep that I need but I'm troubled by nightmares that don't sound so scary to me while fully awake. If I hear an angry or just loud male voice, I dream that my father is in my home. He's decided to keep his distance the way I keep mine for both of our sakes unless I've missed my guess but dreaming his voice leaves me awake and shaking for hours That's the other thing the whiskey does well. If I'm shaking from my PTSD, it helps me stop.
As a day sleeper, this leads to some funny looking journal mentions of having a drink at 7 AM but I assure you that I've been awake anywhere from 12 to 30 hours at that point. It's always five o'clock in that burning war zone I call a nervous system. I had a full morning of work planned but I'm just going to have to try some rest.
All I could do was cover the entire inside of my mouth with one of those Orajel style products, take my medicines on time and recline with a cold pack wrapped around as much of my face as it could cover. The key was to remain calm and hold on because one of the medicines was going to work or someone was going to bring me home some medicinal reinforcement. (It's formal name is whiskey but I don't drink it for the taste.) I'll explain later why I didn't have any on hand but I knew that I would make it eventually. Time passes including both the good and bad aspects of life.
As I made it to that meditative state that leads to sleep when I'm physically exhausted. We call those days that end in "y." As soon as the pain was on the separate side of my mind from where I was living, the cat signal went off. (I have trouble describing meditation adequately because I learned so much of it from reading science fiction and fantasy novels.) Maddie insisted that 2 PM was actually 5 PM and so her dinner was about to be late. Normally, I meditate to the sound of my own breathing but a yowling cat makes regular breathing difficult so I played a favorite Pearl Jam CD. It's the bootleg from the night Melissa and I attended. (It's a legal bootleg produced and sold by the band in case you're wondering. I'm not hypocritical about intellectual property rights.)
Madeline (the evil bitch cat from hell or my sweet baby girl depending on the circumstances) jumped up on my CD player and popped out the CD while it was playing. She scratched it up pretty good in the process but I'm hoping to work these scratches out like the ones resulting from being stored badly for months at a time. Unfortunately, Maddie decided that she didn't want me to relax and feel better. She wanted to be fed and didn't care who had to crawl across the broken glass and glowing charcoal floor to do it. (It's my blog. I'll exaggerate when I want to.) She did take several more flying leaps at me and I am touch sensitive all over my body during winter symptoms. Eventually, I hid myself behind a closed door in the office and tried to work while my neighbor the car detailer sent metal spikes through my head. He was cleaning a van and his customer was shouting a conversation over that noise.
Chilly Weekend and Rough Passage are coming along pretty well. I tend to write late at night when the office is most useable to me. One thing slowing the work down is having to listen to my body. Every so often, I can keep one of my symptoms from dialing itself up to 11 by giving my body what it needs. Usually, that's rest or sleep that I need but I'm troubled by nightmares that don't sound so scary to me while fully awake. If I hear an angry or just loud male voice, I dream that my father is in my home. He's decided to keep his distance the way I keep mine for both of our sakes unless I've missed my guess but dreaming his voice leaves me awake and shaking for hours That's the other thing the whiskey does well. If I'm shaking from my PTSD, it helps me stop.
As a day sleeper, this leads to some funny looking journal mentions of having a drink at 7 AM but I assure you that I've been awake anywhere from 12 to 30 hours at that point. It's always five o'clock in that burning war zone I call a nervous system. I had a full morning of work planned but I'm just going to have to try some rest.
Wednesday, September 16, 2015
Running Out of Things
As long as the weather is right and I don't run out of things, my symptoms are sorta under control. I can only write that with a straight face because of the pain. Yesterday, I got my hands on a new supply of the drug prescribed for Restless Leg Syndrome. As regular readers know, I have Restless Arm Syndrome instead but my innovative pain management specialist decided that I was right about my symptoms just being a weird variation on RLS. Therefore, he prescribed the RLS medication for me as well as the fibromyalgia medicine since I realized some of my symptoms were dead on for that lovely problem. So long as I take the two together along with my arthritis medication, the anti-depressant prescribed for pain control and my two kinds of narcotics, my symptoms are under control. That means I only have a couple hours of severe pain each day.
I have one day's worth of all my medicines together in order to try getting things under control. The key to not freaking out is to remember that it takes a few days for all of my medicines to get their acts together and to make me feel a little better. Some improvement is better than no improvement. Right? Therefore, I am trying to ignore the fact that my arms feel like I just flew in from Europe or Northwest Canada. We've had some wet weather along with a sudden shortage (only a few days ago) of purely medicinal whiskey that numbs the tooth pain so I'm on fire. Admittedly, I've felt worse but that doesn't count for much when you've had brain and spine surgery.
It turns out that September is Chiari Awareness Month though I'm not sure how many outside the community are aware of this. It won't truly count for me until I get to present what I know on the subject and do so professionally. I find it difficult to write about certain things like incontinence even when I'm frustrated. Depends are one of those things that I came very close to running out of this past week. The only reason that I didn't was that I put myself through conservation measures that may have caused me more or less permanent injury. I suppose some outpatient surgery and other humiliation could bring me back to some sort of base level of illness where the skin deterioration would stop for a while.
Maybe it's easier to write about these things when I'm frustrated. Frustration is easier to handle than despair which is where I've been off and on for a while now. This is when I need to remember my lessons from Stephen R. Donaldson. I can't remember the exact quote but there's one about not giving up because wonders may redeem you. There have been times when I have fought on through impossible circumstances and found some sort of unexpected rescue at the end of the tunnel. Of course, I have to remind you that these were impossible looking circumstances for people like me and not anything that would call for Army Rangers or Delta Force. I do what I can while trying to avoid comparing my best to what a healthy person brought up to trust himself might be able to do. After all, it's not my fault if I fail to exceed myself.
I have one day's worth of all my medicines together in order to try getting things under control. The key to not freaking out is to remember that it takes a few days for all of my medicines to get their acts together and to make me feel a little better. Some improvement is better than no improvement. Right? Therefore, I am trying to ignore the fact that my arms feel like I just flew in from Europe or Northwest Canada. We've had some wet weather along with a sudden shortage (only a few days ago) of purely medicinal whiskey that numbs the tooth pain so I'm on fire. Admittedly, I've felt worse but that doesn't count for much when you've had brain and spine surgery.
It turns out that September is Chiari Awareness Month though I'm not sure how many outside the community are aware of this. It won't truly count for me until I get to present what I know on the subject and do so professionally. I find it difficult to write about certain things like incontinence even when I'm frustrated. Depends are one of those things that I came very close to running out of this past week. The only reason that I didn't was that I put myself through conservation measures that may have caused me more or less permanent injury. I suppose some outpatient surgery and other humiliation could bring me back to some sort of base level of illness where the skin deterioration would stop for a while.
Maybe it's easier to write about these things when I'm frustrated. Frustration is easier to handle than despair which is where I've been off and on for a while now. This is when I need to remember my lessons from Stephen R. Donaldson. I can't remember the exact quote but there's one about not giving up because wonders may redeem you. There have been times when I have fought on through impossible circumstances and found some sort of unexpected rescue at the end of the tunnel. Of course, I have to remind you that these were impossible looking circumstances for people like me and not anything that would call for Army Rangers or Delta Force. I do what I can while trying to avoid comparing my best to what a healthy person brought up to trust himself might be able to do. After all, it's not my fault if I fail to exceed myself.
Thursday, September 10, 2015
A Little Bit Courageous
The title of this post is taken from the REO Speedwagon song, "Keep Pushin' On." It's a song about overcoming heartbreak which does not apply to my current life but I believe that most of it is universal. Despite the vertigo calling to me from the chasm of my doubts, I want to set an example and declare that, "Sometimes, I think I was a little bit courageous." Why? Because I thought about the breaks I took from this project and that project that piled up until I could have left each one for dead. Instead, I move ahead and think no further than this next step embodied in this post.
This is one of those moments, accounting for the nature and scale of my fears, where the building is burning down and I need to face smoke and flame to save it. It may come to pass that I may have to abandon it to save the people who are more important. That's just a metaphor and an exaggeration but it helps in its own way. Compared to the scale of my fears, the matter is colossal. Compared to the most important things in life, the matter (as if it were just one) is trivial. Paying a few fines would be unpleasant but it's something that can be done. Dealing with the extra agony from money that can't be spent on coping will be far worse.
I need to be a little bit more courageous and deal with events before they overwhelm me. Right now, I'm looking at the immediate problems of not having any money until the middle of next week in case something comes up. If I do run out of something crucial, there are people to call upon. The specific problems are: an aggressive automated collections program got me to agree to pay a certain amount of money exactly one day before we will have it. It caught me sleepy and cooperative as if I were on something illegal that I've never tried. The closest I've come involved the first few days on a new pain medication prescribed partially because pain was depriving me of sleep. The result was two or three days of bliss like a faint echo of twilight sedation. Since I took the medicine as prescribed, I came out of it after a few pleasant days with a reduction in pain. In any case, I made arrangements to make that payment and I'm sure that a human would be understanding of the one day.
My electric bill (including all forms of power except people power) is the other concern. I seem to have writhed in agony through an entire month but then my system prevented that bill from falling through the cracks. I paid that month's bill in full as if I had found an old copy of the bill and paid that. Therefore, I would be current on the next due date if not for my screwup from some home repair related disaster. They deferred and divided a balance for me concerning that but my August mistake invalidated the agreement. I'm not up to dealing with a big negotiation but I've taken action to get them enough money to be bargaining from a position of less weakness.
I haven't managed my way though the property tax debacle yet but that's next on the list. Most recently, I emerged from two full days of enforced "rest" to surface and write this. The first day was pure agony. Every time I woke, I was in such horrible pain that I sought escape in sleep or getting as close as I could through meditation. I couldn't eat anything because freaking Jello hurt my teeth. Then I spent yesterday more or less asleep but without the greatest of extremes in pain so also without the greatest extremes of pain control. When I emerged from that state, it was somewhere between four and five AM and I was filled with writing ideas. I believe old "Blahthings" might return in a slightly different form and under a different name.
The urge to write about public policy has returned but not so much about politics. There's a line from "The West Wing" that comes close to summing me up. "[He] doesn't like running for office because it takes too much time away from doing the job." I had to do the brackets around he because the character Josh was talking about the character named CJ who was a woman. I had to wrangle the language a bit to put it into place. I'd rather write about how I'd prefer to see the nation work than why I'm going to vote for the Democratic candidate as you all know that I will.
Of course, Melissa is a lot more courageous than I will ever be. I can't tell you about her journey (even the parts that I know) except to say that it starts with a form of anxiety disorder and continues through her working with the public every day now. Somehow, both of us (quoting Kevin Cronin of REO Speedwagon singing) will "Keep Pushin' On."
This is one of those moments, accounting for the nature and scale of my fears, where the building is burning down and I need to face smoke and flame to save it. It may come to pass that I may have to abandon it to save the people who are more important. That's just a metaphor and an exaggeration but it helps in its own way. Compared to the scale of my fears, the matter is colossal. Compared to the most important things in life, the matter (as if it were just one) is trivial. Paying a few fines would be unpleasant but it's something that can be done. Dealing with the extra agony from money that can't be spent on coping will be far worse.
I need to be a little bit more courageous and deal with events before they overwhelm me. Right now, I'm looking at the immediate problems of not having any money until the middle of next week in case something comes up. If I do run out of something crucial, there are people to call upon. The specific problems are: an aggressive automated collections program got me to agree to pay a certain amount of money exactly one day before we will have it. It caught me sleepy and cooperative as if I were on something illegal that I've never tried. The closest I've come involved the first few days on a new pain medication prescribed partially because pain was depriving me of sleep. The result was two or three days of bliss like a faint echo of twilight sedation. Since I took the medicine as prescribed, I came out of it after a few pleasant days with a reduction in pain. In any case, I made arrangements to make that payment and I'm sure that a human would be understanding of the one day.
My electric bill (including all forms of power except people power) is the other concern. I seem to have writhed in agony through an entire month but then my system prevented that bill from falling through the cracks. I paid that month's bill in full as if I had found an old copy of the bill and paid that. Therefore, I would be current on the next due date if not for my screwup from some home repair related disaster. They deferred and divided a balance for me concerning that but my August mistake invalidated the agreement. I'm not up to dealing with a big negotiation but I've taken action to get them enough money to be bargaining from a position of less weakness.
I haven't managed my way though the property tax debacle yet but that's next on the list. Most recently, I emerged from two full days of enforced "rest" to surface and write this. The first day was pure agony. Every time I woke, I was in such horrible pain that I sought escape in sleep or getting as close as I could through meditation. I couldn't eat anything because freaking Jello hurt my teeth. Then I spent yesterday more or less asleep but without the greatest of extremes in pain so also without the greatest extremes of pain control. When I emerged from that state, it was somewhere between four and five AM and I was filled with writing ideas. I believe old "Blahthings" might return in a slightly different form and under a different name.
The urge to write about public policy has returned but not so much about politics. There's a line from "The West Wing" that comes close to summing me up. "[He] doesn't like running for office because it takes too much time away from doing the job." I had to do the brackets around he because the character Josh was talking about the character named CJ who was a woman. I had to wrangle the language a bit to put it into place. I'd rather write about how I'd prefer to see the nation work than why I'm going to vote for the Democratic candidate as you all know that I will.
Of course, Melissa is a lot more courageous than I will ever be. I can't tell you about her journey (even the parts that I know) except to say that it starts with a form of anxiety disorder and continues through her working with the public every day now. Somehow, both of us (quoting Kevin Cronin of REO Speedwagon singing) will "Keep Pushin' On."
Wednesday, July 29, 2015
The Nightmare Fizzled (Harry Potter story lines involved)
There I was sitting in what seemed like a college course on the verge of failing yet again. It was some sort of critical writing course and I was behind in some unspecified way. The teacher seemed to shift between two of the teachers I've admired most in my life so I wasn't just failing. I was failing them personally which counts for more in the honor system I adopted over the years. It replaced pleasing my parents as the measuring stick when pleasing them became impossible. As these admired teachers did on occasion, the class incorporated both the conventional and the contemporary. We were given a final assignment involving a paper on the Harry Potter books from a scholarly perspective and we were expected to incorporate elements of the movie about the last book. (Obviously, my brain decided to overlook the fact that the final book was divided in two for movie purposes.) In typical nightmarish fashion, the entire paper was due the next day despite the fact that it required scoring tickets to a midnight showing of the movie.
Normally, this is when dream me starts squealing like a pig, considering suicide as a top option and dreading my parents above all else. Oddly enough, my brain just went into overdrive this time. I found myself comparing the original "Star Wars" trilogy with the Harry Potter books and found the compare/contrast topic that I wanted to use. Along with the scholarly materials I wouldn't have had time to find, this would have been my college strategy for writing a paper. I have thought of the original "Star Wars" trilogy as "The Redemption of Anakin Skywalker" for years. Make that decades. The Harry Potter books could have been seen as "The Redemption of Severus Snape" in a fairly similar way. We have our compare and contrast topic.
There is a scene in the next to last book where Rowling does an expert job of both setting the hook to convince us that Snape has been nothing more than a traitor yet leaves herself plenty of room to write her way out of it. Harry catches up to the retreating Death Eaters who have just killed Dumbledore and Snape lags behind to deal with him personally. At that moment, Snape does a masterful job of defending himself yet avoids killing (for good reason) or capturing Harry. In fact, Snape seems to be delivering his final lesson in the subject of how it is all but impossible to fight someone who can anticipate your every move flawlessly.
You can compare that to the Luke/Vader duel in "The Empire Strikes Back." Vader is so superior with the lightsaber and general use of the Force that he might have killed Luke at any moment. Director Spielberg does a great job of making sure that, each time Vader withholds a blow, it seems to serve the ultimate purpose of the Dark Side. Even Vader's declaration of twisted fatherly love seems more likely to serve a Dark Side plot. Then Vader withholds the death blow even after delivering this final ultimatum and having it refused.
Similarly, the seemingly cruel Dumbledore/Snape strategy of withholding crucial information from Harry Potter makes perfect sense in the world where Voldemort can read the mind of all but the most talented, bravest and most experienced wizards. In the end of Half Blood Prince, Snape holds himself back from killing Harry because it's the one action that serves both masters (Dumbledore and Voldemort) equally. Harry must be able to do something completely unexpected against Voldemort without knowing exactly how it will help him reach ultimate victory.
The paper was nearly written in my head before the class and dream ended. Of course, this isn't a literary blog so I am coming to a point though not without the help of one Stephen Reeder Donaldson. Donaldson's best known character, Thomas Covenant, escapes the fate of being god-like Lord Foul's tool in destroying the universe by "do[ing] something unexpected." Like me but to an exponentially greater degree, Covenant finds himself caught in traps woven largely from the consequences of his own sins. I find myself paralyzed by the urge to give up and let the world come down on my head at the precise moments when decisive actions could get me out of all trouble. Covenant is goaded by the frustration of being mocked by the nearly god-like Foul whereas I face the memories of mockery from my merely mortal father. Covenant is motivated by his loves for the Land and, later, Linden Avery.
I've been trying to fight off the feeling that my father is right about me being hopeless at dealing with the "real world" for weeks now. This nightmare is part of the healing process. In the past, I would awaken thinking about how I deserved to die. This time, I woke angry that I keep facing these dreams and repeated a mantra in my head. I graduated. I know I graduated. I could go look at my degree certificate if I chose. I received that certificate by some sort of signature required mail delivery in very early 2002. After looking at it for a moment, I called some important University office and asked/begged/demanded that the person who answered the phone look up my records for me. I needed reassurance that the ordeal was in the past and that they couldn't take it back. I was given that reassurance but I was feeling like a failure within 24 hours for needing a decade in and out of school to finish.
More than a decade has passed since that miserable night. At 28, a decade seemed like a shameful eternity that would never allow me to take pride in my work. At 40 and looking at a lifetime of pain, a decade is something far less. I can only compare it to the school year as a child. Each school year seemed impossibly long while adults tried to console me that only so many months remained. Each of those years was a significant portion of my entire time on the Earth. Now, a year can only be compared to my current lifetime by using fractions and decimal points. After I graduated, one of the most admirable role models in my life confessed to me that he or she took a decade to graduate.
So, I wrote a Facebook post about my property tax situation that might have read an awful lot like giving up. It's actually part of my survival strategy. Let's take the worst case scenario and look it in the eye. I don't mean the eventual worst case that includes failing tests I haven't even seen yet. I examine the worst case scenario until I can say that I have a practical plan for dealing with it. While I am doing that, I don't look as closely at solutions to avoid the worst case. I used to surround myself with people who had extensive experience intervening in the problems of others and they knew that my first answer is always some form of no. I have to remember that those old veterans of previous struggles have moved on. Like me, they took too many wounds or even saw their efforts make someone else's problems worse. I'm retired from being an unsolicited helper.
Two people (so far), have offered me practical solutions that I rejected like whoever the most dominant center in today's NBA might be. I have yet to thank them and note that their suggestions will be part of the eventual plan. Since I'd like to carry it out in the next 24/48 hours, it's time to move past rejecting solutions entirely and mentioning specific flaws. As usual, those specific flaws are all found within me. There is the damage from a lifetime of being told that I fail to apply myself to anything that matters. There are the specifics of my disability and my knowledge of what it is that stresses my team the most. I hate to ask people to help do things that will cause them stress.
Tempus Fugit. The attempt can be made. Extreme pain can be endured as so many of us know. I'm still recovering from a pain doc appointment with unexpected complications so there's no dodging the pain. I can't make myself numb before speaking to government officials so... Well, tempus effing fugit. (In case my translation skills are worse than I thought, I'm using it in the colloquial sense that time is passing and running out.)
Late addition: Some of you may have seen or heard me compare my father to Darth Vader over the years. The metaphor holds as he grabbed his metaphorical Imperial side and jumped into the shaft for me. My feelings are difficult to express. I feel thankful for the ultimate gesture of stepping out of my life for good. He made the right decision. It doesn't make up for a lifetime of poisoning my mind but he did do the right thing. He had backed me into a situation that I couldn't escape on my own and then went away taking the danger with him. It was the one time in my adult life when I looked at the worst case scenario and saw no way out. He both created and relieved my ultimate nightmare.
Normally, this is when dream me starts squealing like a pig, considering suicide as a top option and dreading my parents above all else. Oddly enough, my brain just went into overdrive this time. I found myself comparing the original "Star Wars" trilogy with the Harry Potter books and found the compare/contrast topic that I wanted to use. Along with the scholarly materials I wouldn't have had time to find, this would have been my college strategy for writing a paper. I have thought of the original "Star Wars" trilogy as "The Redemption of Anakin Skywalker" for years. Make that decades. The Harry Potter books could have been seen as "The Redemption of Severus Snape" in a fairly similar way. We have our compare and contrast topic.
There is a scene in the next to last book where Rowling does an expert job of both setting the hook to convince us that Snape has been nothing more than a traitor yet leaves herself plenty of room to write her way out of it. Harry catches up to the retreating Death Eaters who have just killed Dumbledore and Snape lags behind to deal with him personally. At that moment, Snape does a masterful job of defending himself yet avoids killing (for good reason) or capturing Harry. In fact, Snape seems to be delivering his final lesson in the subject of how it is all but impossible to fight someone who can anticipate your every move flawlessly.
You can compare that to the Luke/Vader duel in "The Empire Strikes Back." Vader is so superior with the lightsaber and general use of the Force that he might have killed Luke at any moment. Director Spielberg does a great job of making sure that, each time Vader withholds a blow, it seems to serve the ultimate purpose of the Dark Side. Even Vader's declaration of twisted fatherly love seems more likely to serve a Dark Side plot. Then Vader withholds the death blow even after delivering this final ultimatum and having it refused.
Similarly, the seemingly cruel Dumbledore/Snape strategy of withholding crucial information from Harry Potter makes perfect sense in the world where Voldemort can read the mind of all but the most talented, bravest and most experienced wizards. In the end of Half Blood Prince, Snape holds himself back from killing Harry because it's the one action that serves both masters (Dumbledore and Voldemort) equally. Harry must be able to do something completely unexpected against Voldemort without knowing exactly how it will help him reach ultimate victory.
The paper was nearly written in my head before the class and dream ended. Of course, this isn't a literary blog so I am coming to a point though not without the help of one Stephen Reeder Donaldson. Donaldson's best known character, Thomas Covenant, escapes the fate of being god-like Lord Foul's tool in destroying the universe by "do[ing] something unexpected." Like me but to an exponentially greater degree, Covenant finds himself caught in traps woven largely from the consequences of his own sins. I find myself paralyzed by the urge to give up and let the world come down on my head at the precise moments when decisive actions could get me out of all trouble. Covenant is goaded by the frustration of being mocked by the nearly god-like Foul whereas I face the memories of mockery from my merely mortal father. Covenant is motivated by his loves for the Land and, later, Linden Avery.
I've been trying to fight off the feeling that my father is right about me being hopeless at dealing with the "real world" for weeks now. This nightmare is part of the healing process. In the past, I would awaken thinking about how I deserved to die. This time, I woke angry that I keep facing these dreams and repeated a mantra in my head. I graduated. I know I graduated. I could go look at my degree certificate if I chose. I received that certificate by some sort of signature required mail delivery in very early 2002. After looking at it for a moment, I called some important University office and asked/begged/demanded that the person who answered the phone look up my records for me. I needed reassurance that the ordeal was in the past and that they couldn't take it back. I was given that reassurance but I was feeling like a failure within 24 hours for needing a decade in and out of school to finish.
More than a decade has passed since that miserable night. At 28, a decade seemed like a shameful eternity that would never allow me to take pride in my work. At 40 and looking at a lifetime of pain, a decade is something far less. I can only compare it to the school year as a child. Each school year seemed impossibly long while adults tried to console me that only so many months remained. Each of those years was a significant portion of my entire time on the Earth. Now, a year can only be compared to my current lifetime by using fractions and decimal points. After I graduated, one of the most admirable role models in my life confessed to me that he or she took a decade to graduate.
So, I wrote a Facebook post about my property tax situation that might have read an awful lot like giving up. It's actually part of my survival strategy. Let's take the worst case scenario and look it in the eye. I don't mean the eventual worst case that includes failing tests I haven't even seen yet. I examine the worst case scenario until I can say that I have a practical plan for dealing with it. While I am doing that, I don't look as closely at solutions to avoid the worst case. I used to surround myself with people who had extensive experience intervening in the problems of others and they knew that my first answer is always some form of no. I have to remember that those old veterans of previous struggles have moved on. Like me, they took too many wounds or even saw their efforts make someone else's problems worse. I'm retired from being an unsolicited helper.
Two people (so far), have offered me practical solutions that I rejected like whoever the most dominant center in today's NBA might be. I have yet to thank them and note that their suggestions will be part of the eventual plan. Since I'd like to carry it out in the next 24/48 hours, it's time to move past rejecting solutions entirely and mentioning specific flaws. As usual, those specific flaws are all found within me. There is the damage from a lifetime of being told that I fail to apply myself to anything that matters. There are the specifics of my disability and my knowledge of what it is that stresses my team the most. I hate to ask people to help do things that will cause them stress.
Tempus Fugit. The attempt can be made. Extreme pain can be endured as so many of us know. I'm still recovering from a pain doc appointment with unexpected complications so there's no dodging the pain. I can't make myself numb before speaking to government officials so... Well, tempus effing fugit. (In case my translation skills are worse than I thought, I'm using it in the colloquial sense that time is passing and running out.)
Late addition: Some of you may have seen or heard me compare my father to Darth Vader over the years. The metaphor holds as he grabbed his metaphorical Imperial side and jumped into the shaft for me. My feelings are difficult to express. I feel thankful for the ultimate gesture of stepping out of my life for good. He made the right decision. It doesn't make up for a lifetime of poisoning my mind but he did do the right thing. He had backed me into a situation that I couldn't escape on my own and then went away taking the danger with him. It was the one time in my adult life when I looked at the worst case scenario and saw no way out. He both created and relieved my ultimate nightmare.
Thursday, July 16, 2015
The Reset Button
It is my fervent hope that this excerpt will be published in similar form someday as part of a much larger work. Therefore, I might have to yank this post away for legal reasons someday. However, I cannot hold back everything I think of just in case it might snow in Hell or some savvy publisher might make my dreams come true.
This is another
one of those concepts that might seem funny until you need it. It’s a metaphor
for dealing with the cumulative effect of stress on the body and mind. Since
you’re bound to feel intense guilt for many irrational reasons, you’re going to
overreact from time to time. You might even have a classic “John Stapleford is
sorry for living” moment. Just think stereotypical teenage girl and you come
close.
You’re going to
feel all of the classic emotions that help us all get into trouble but I
started with guilt because it feels like a cleaner emotion to me. I’m supposed
to feel guilty, after all. That downward spiral was interrupted by my use of
the reset button in my head. I’m not going to explain how or why I tend to feel
that guilt is cleaner somehow because that could be a multi-page tangent. Yeah.
I could have deleted the whole thing but this is what they call a teachable
moment.
Instead, I’m going
to move on as if nothing happened. When dealing with close friends and family,
healthy people run up emotional debts all the time. When you have chronic pain
and face isolation among other things, you’re going to have the urge to fall on
your knees and beg forgiveness at least once a week. Oddly enough, I’ve
discovered that this irritates a lot of people along with the predictable knee
issues.
Those people who
stick with you over the years are going to expect outbursts and roll with it or
else they would not have made it this far. The best thing to do after an
outburst is to do what you must to end it. I’m not the creative sort but kids
learning to cope with disability while being taught to respect elders might
benefit from having a sign to raise with something like “Sorry…running off the
rails” written on it to hold up. Both children and adults can benefit from
having a timeout. For me, it’s a quiet and dimly lit room and a cold pack or
damp towel.
Upon returning
from your timeout, don’t mention the reason why you left. As I mentioned
before, people who know you and have stuck with you don’t need an explanation.
They might actually appreciate you not interrupting some pleasant activity with
another overly emotional apology. Other times, you need to depend on your life
coach to explain the chronic pain or other symptom to relative newcomers. If
you get yourself in real trouble with someone in law enforcement for example,
you might want to print something small like a business card stating that you
suffer from something that makes
overly emotional responses more likely. Especially in a law enforcement
setting, you should also include the number to your doctor’s office presuming
that your doctor has agreed to this and will back you up.
Obviously, you
should try to behave yourself in the first place. Every outburst is a potential
breaking point in your relationships. Those who refrain from following you off the
rails are the sort of treasures you should value over worldly goods and so on.
If someone follows you off the rails, you should offer them the same
consideration that they offer you. Press that reset button and move on.
Sometimes, this
will not work or it has been done too many times. Not every relationship is
going to make it and that’s a hard lesson whether you are healthy or not.
Sunday, July 12, 2015
The Most Important Resource for a Disabled Person: Friends
When I broke down far enough to admit that I was struggling, a number of people jumped to my aid. They couldn't offer aid in paying my tax bill or in paying off doctors but this isn't about what they can do. These people offered me their faith in me, their belief that my pain in all of its forms is real and their acceptance that disabled is a part of my identity. This isn't something that shall pass like a little nagging case of pneumonia. (Just throw in any serious and miserable acute illness that could kill under the wrong circumstances and you can see my point.) Unlike what my mother once believed, this isn't some illness that the right medicine or surgery will cure. I'm disabled and I will never get, as I like to say "Big B Better." There will be improvements and setbacks along the way but I will remain disabled.
There is a bias in this nation against anyone who can't slap a Band-Aid on whatever the problem is and get right back to work. Thanks to my friends, I've been forced to accept that I have a certain intrinsic value from just being a fellow human being. Those friends forced me to accept that I can be pleasant to be around and that a number of people choose to be around me. Some people recognize my work as a disability advocate and a fiction writer as doing something worthwhile. I don't have to make something of myself because I'm there already. Yes, I have further to go but I'm in the trenches right now trying to make it happen.
I wonder if you can imagine the pushback in my own mind against these positive thoughts. Obviously, the rest of the world can't be wrong so there must be some way to recover from this fully. My doctors must be wrong or I must have misunderstood them hundreds of times. Melissa must have misunderstood them the same way and the laws of reality must be off kilter because not getting better has to be the result of me being lazy as always. It helps to make fun of these irrational feelings but they don't go away. I was taught my strengths and weaknesses while I was young so being sick is a moral failure somehow.
Then again, people I consider to be exceptionally strong have told me that I have surpassed them somehow. Thank you, guys. I doubt that I have surpassed you but I'm proud to be considered in your neighborhood. Those of you I believe should be eligible for sainthood regardless of your specific religious beliefs think I'm a good person? You don't just say that so you can move on to my flaws in the same sentence?
Some of my victories are difficult to dispute even for me. "I'm still alive!" When the wolves seem to gather at the door every day as the vultures circle overhead, it reminds me that it didn't have to end up this way. I will try to continue to take pride in surviving until the day when I don't. Until then, I hope to continue having such good friends. Thanks to our histories, I can believe that the clicking of a thumbs up button actually means something.
There is a bias in this nation against anyone who can't slap a Band-Aid on whatever the problem is and get right back to work. Thanks to my friends, I've been forced to accept that I have a certain intrinsic value from just being a fellow human being. Those friends forced me to accept that I can be pleasant to be around and that a number of people choose to be around me. Some people recognize my work as a disability advocate and a fiction writer as doing something worthwhile. I don't have to make something of myself because I'm there already. Yes, I have further to go but I'm in the trenches right now trying to make it happen.
I wonder if you can imagine the pushback in my own mind against these positive thoughts. Obviously, the rest of the world can't be wrong so there must be some way to recover from this fully. My doctors must be wrong or I must have misunderstood them hundreds of times. Melissa must have misunderstood them the same way and the laws of reality must be off kilter because not getting better has to be the result of me being lazy as always. It helps to make fun of these irrational feelings but they don't go away. I was taught my strengths and weaknesses while I was young so being sick is a moral failure somehow.
Then again, people I consider to be exceptionally strong have told me that I have surpassed them somehow. Thank you, guys. I doubt that I have surpassed you but I'm proud to be considered in your neighborhood. Those of you I believe should be eligible for sainthood regardless of your specific religious beliefs think I'm a good person? You don't just say that so you can move on to my flaws in the same sentence?
Some of my victories are difficult to dispute even for me. "I'm still alive!" When the wolves seem to gather at the door every day as the vultures circle overhead, it reminds me that it didn't have to end up this way. I will try to continue to take pride in surviving until the day when I don't. Until then, I hope to continue having such good friends. Thanks to our histories, I can believe that the clicking of a thumbs up button actually means something.
Tuesday, July 7, 2015
Despair and a Strange Hope
I am very sorry, guys. I've been trying to improve myself while in pain that words cannot describe. I fell back on drinking anything considered safe for humans to dull the pain but I kept needing more. While I threw all of my energy into coping, the rest of life crashed in on me. I have failed so many people and tasks in so many ways because the pain trapped me in a place where time seemed to stop. I wanted to make it through that night or day and not worry about the rest of it.
No matter how much I rail at the circumstances that put me into a sweet deal that I was never healthy enough to handle, I am the one who is failing and flailing. Melissa has been promoted at work and I trap her between a rock and a hard place regularly. I am in hideous pain, she can see it plain as day and she does what she can to help me numb myself. It isn't even the pain that will force the next crisis. I failed to hold on to money needed to pay for homeowners' association fees and property taxes. I'm not even sure that I paid the sewer bill this year no matter how much I thought I did.
For the longest time, I was able to concentrate well enough to keep the lights and other utilities on. When I started to fail at that, I did my best at idiot proofing the process having bills sent directly to my tablet where I could pay them, make a personal record of payment and then keep copies of their acknowledgements. The things I'm failing at now are intermittent costs. Doctors have to submit their bills to Medicare and then I get billed a portion of what's left. Simple enough for someone who is watching the mail perhaps but I do poorly enough just around the house.
Maybe as recently as a year ago, I would have told you that I could handle this just fine. Negotiating favorable terms in good faith is something I was able to do very well. That's before I got this sick. No matter what wonderful plans I make to pay back every cent, the pain will hit me and I will buckle. I will take a large bottle of whiskey, water it heavily and suck it down until I'm numb enough to relax and get the rest that the pain keeps from me. The longer I try to hold out at the start, the more I need to suck down to take the edge off so other methods might work. I don't even get to enjoy being intoxicated because I'm so tired that relief brings sleep.
At some point, someone will have to take a stand about me owing them money though I don't know exactly how that will work. I'm sure it will be fast and painful in the literal sense for me. The bigger problem is how hard whatever will happen will be on Melissa. She's going to stand by me and try to shield me. Every plan we have to cope under extreme circumstances has severe problems. Our escape route to New York has been cut off by circumstances beyond the control of our New York family. They have their own problems and the once inviting idea of getting rid of this house and finding some way to live up there was never very practical. Yes, Melissa's employer has stores up there but they are not linked closely enough to the Delaware stores for favors earned here to matter. Someone might start her at the bottom if we got lucky. The only reason why my regular symptoms don't crush me even without the tooth and other bone pain is the fact that I am on very heavy doses of powerful and dangerous medications. No other doctor would be able to start me off so far up the scale. My treatment here is threatened by the claws of the law.
Originally, I had this dream where Melissa and I could move to New York living close to our New York family and help them out. They have their own problems that I wanted to help them solve or, at least, hold out longer. They are the ultimate survivors up there long since putting me to shame so I don't intend to start a calamity watch (That's just meant to be a slightly less overly dramatic way of talking about a figurative death watch.) for no reason and jinx somebody. They should never have to be exposed to my failures in life right now.
If you glanced at any room in my house, you would think I'm some sort of hoarder but that's not the case. I am threatened on all sides by piles of things that need to be thrown away but I have no problem seeing the trash as such. My problem comes from the walk out to the dumpster. With walking from my chair to the kitchen being too much effort most days, there is almost never a time when I could walk bags of trash out to the dumpster. This has led to me neglecting my poor kitties in ways I'm too squeamish to discuss at the moment.
Somehow, I've wedged myself into a situation where I'm too sick to handle my current situation yet also too sick to do anything about it. I'm between a rock and a hard place yet no one has to worry about me killing myself. In a metaphorical sense, I would take too many people with me. (One is too many but it's more than one person.) I try my best to leave a positive footprint on the world so yanking that away would be wrong. Of course, I'm losing the argument about not using a permanent solution for a temporary problem. I will keep getting worse and nothing can be done about that. At best, I will be a worsening burden on the lives of others.
I've come to the end of this little essay for sure because I'm twitching too hard to type well. Things seem even more hopeless than usual. The next step will involve reclining and feeling the startling hard gut twitches of an anxiety attack. It would be easier to handle with a glass of something flammable but it's not in the cards. Don't feel sorry for me. Resent me because it's all my fault yet I complain anyway.
Oops. I forgot the strange hope. Some of it was practical but I was able to think of ways doctors and the Association could bring the pain. All that it left is this feeling that I've been through worse. I'm not sure if my experience will help at all anyway.
No matter how much I rail at the circumstances that put me into a sweet deal that I was never healthy enough to handle, I am the one who is failing and flailing. Melissa has been promoted at work and I trap her between a rock and a hard place regularly. I am in hideous pain, she can see it plain as day and she does what she can to help me numb myself. It isn't even the pain that will force the next crisis. I failed to hold on to money needed to pay for homeowners' association fees and property taxes. I'm not even sure that I paid the sewer bill this year no matter how much I thought I did.
For the longest time, I was able to concentrate well enough to keep the lights and other utilities on. When I started to fail at that, I did my best at idiot proofing the process having bills sent directly to my tablet where I could pay them, make a personal record of payment and then keep copies of their acknowledgements. The things I'm failing at now are intermittent costs. Doctors have to submit their bills to Medicare and then I get billed a portion of what's left. Simple enough for someone who is watching the mail perhaps but I do poorly enough just around the house.
Maybe as recently as a year ago, I would have told you that I could handle this just fine. Negotiating favorable terms in good faith is something I was able to do very well. That's before I got this sick. No matter what wonderful plans I make to pay back every cent, the pain will hit me and I will buckle. I will take a large bottle of whiskey, water it heavily and suck it down until I'm numb enough to relax and get the rest that the pain keeps from me. The longer I try to hold out at the start, the more I need to suck down to take the edge off so other methods might work. I don't even get to enjoy being intoxicated because I'm so tired that relief brings sleep.
At some point, someone will have to take a stand about me owing them money though I don't know exactly how that will work. I'm sure it will be fast and painful in the literal sense for me. The bigger problem is how hard whatever will happen will be on Melissa. She's going to stand by me and try to shield me. Every plan we have to cope under extreme circumstances has severe problems. Our escape route to New York has been cut off by circumstances beyond the control of our New York family. They have their own problems and the once inviting idea of getting rid of this house and finding some way to live up there was never very practical. Yes, Melissa's employer has stores up there but they are not linked closely enough to the Delaware stores for favors earned here to matter. Someone might start her at the bottom if we got lucky. The only reason why my regular symptoms don't crush me even without the tooth and other bone pain is the fact that I am on very heavy doses of powerful and dangerous medications. No other doctor would be able to start me off so far up the scale. My treatment here is threatened by the claws of the law.
Originally, I had this dream where Melissa and I could move to New York living close to our New York family and help them out. They have their own problems that I wanted to help them solve or, at least, hold out longer. They are the ultimate survivors up there long since putting me to shame so I don't intend to start a calamity watch (That's just meant to be a slightly less overly dramatic way of talking about a figurative death watch.) for no reason and jinx somebody. They should never have to be exposed to my failures in life right now.
If you glanced at any room in my house, you would think I'm some sort of hoarder but that's not the case. I am threatened on all sides by piles of things that need to be thrown away but I have no problem seeing the trash as such. My problem comes from the walk out to the dumpster. With walking from my chair to the kitchen being too much effort most days, there is almost never a time when I could walk bags of trash out to the dumpster. This has led to me neglecting my poor kitties in ways I'm too squeamish to discuss at the moment.
Somehow, I've wedged myself into a situation where I'm too sick to handle my current situation yet also too sick to do anything about it. I'm between a rock and a hard place yet no one has to worry about me killing myself. In a metaphorical sense, I would take too many people with me. (One is too many but it's more than one person.) I try my best to leave a positive footprint on the world so yanking that away would be wrong. Of course, I'm losing the argument about not using a permanent solution for a temporary problem. I will keep getting worse and nothing can be done about that. At best, I will be a worsening burden on the lives of others.
I've come to the end of this little essay for sure because I'm twitching too hard to type well. Things seem even more hopeless than usual. The next step will involve reclining and feeling the startling hard gut twitches of an anxiety attack. It would be easier to handle with a glass of something flammable but it's not in the cards. Don't feel sorry for me. Resent me because it's all my fault yet I complain anyway.
Oops. I forgot the strange hope. Some of it was practical but I was able to think of ways doctors and the Association could bring the pain. All that it left is this feeling that I've been through worse. I'm not sure if my experience will help at all anyway.
Saturday, June 13, 2015
From Grief to Growth Pt. III
Aging sure is a weird thing! I was thinking about a particular event that I remember as if it happened yesterday and realized that it happened much closer to 30 years ago than 20. When did I become the person things happened to 30 years ago? In any case, it was a minor thing only memorable because I walked past two of my very best friends that year without saying a word because I was in a snit. I happened to be 14 at the time so it was a good snit. In any case, some poor innocent (the other good friend) was sent as a messenger who caught up with me late that day.
The poor messenger asked me (in his own words) if something had been wrong that day because I hadn't spoken to a certain someone. I probably sounded a bit sarcastic but it was out of legitimate surprise when I expressed my surprise that she had noticed. He put about a paragraph of emphasis into three words, "Yeah. She noticed."
Since the entire snit had been over feeling invisible, my bit of self righteous anger collapsed in on itself. I assured my poor messenger friend that I'd been upset about something but not anymore. Before you think that this is me being self congratulatory, I assure you that I was quite upset that I had inflicted whatever tiny amount of damage that I'd done. My intention was to avoid being my usual self and I found it easy to see myself as a boot licking puppy in those days. Yes, I was - and I am - a few years younger but that did not make me a subordinate just for being nice to someone.
I bring this up because it happened to me again within the last couple of days but in a much lower pressure situation. I saw a picture of someone I'd known online for something like a decade and I complimented her as had many others. That's when the figurative voice in the back of my head told me that I wrote something that made me appear to be some drooling teenage pervert so I added a weak joke on the end. Feeling slightly better, I decided to post the comment instead of deleting it all as I had considered. A back and forth insued and I felt like a complete fool but it ended with her replying that she would have simply believed that the other person would accept a simple compliment but that it might not have been my experience. Ding ding ding! And the winner gets this back handed apology. Is it a left handed apology that I mean? One is actually something nasty disguised as an apology but I mean the one where the apology is real but all covered in a disguise of humor.
Let's skip back to a time so long ago that it was only about a year before I met Melissa as Melissa. I was in a big argument with my girlfriend at the time and she was one who liked to defend herself by appearing all cold and impossible to affect. In fact, I made frequent remarks that I kept in the privacy of my own head that I would rather be with someone like Melissa. (That last part was self congratulatory, of course.) I lobbed insult after insult over the apparently unaffected castle walls to no apparent effect. This all took place online in the Internet's younger days so I was unsurprised when she lost her connection. I took the opportunity to disappear as well before she could return and continue to kick my butt.
Now I'm confused. I think this argument might have taken place after the breakup and after Melissa and I had gotten together. That would make it actually 20 years ago. The ex and I tried to be friends a few times but we kept on running into the same problem. I would hurt her feelings, she would pretend like I was nothing more than a two year old and so I would try harder. Unfortunately, as she confessed to me during one of those times of friendship, I was hurting her feelings and she was just hiding it to try and deny me satisfaction.
The moral of this story is that 2+2=4 no matter how much it looks like 17. If you are being nice to someone, chances are that they do not resent it and think of you as an annoying puppy who won't go away. If you say something hurtful, the target of the insult will probably be hurt. You are probably telling yourself that you're of above average intelligence so you don't need to hear this but I'm of above average intelligence and I could have used the advice within the last couple of days.
I know the impulse that makes you think that you should lash out and I know it well. There have been many years of my life when I've felt invisible to everything but trouble. Trouble can find anyone at any time. I need to work on not being the trouble. The woman who inspired these last few entries is three years older than I am with more kids than I can imagine having. It is far more important from an objective perspective that she spends her attention on those children and her current life than on someone who thought that she was a hero 30 years ago. The ex and I were never serious and we weren't particularly well matched. Then again, we were each other's best option for a brief time more than 20 years ago and I have some fond memories. I'm quite sorry that our very last conversation involved her hitting me with a legitimate complaint that I didn't understand because I confused it with something else. Much later, I had a real metaphorical head slapping moment when I realized that I should have apologized because I had done what she said I'd done though inadvertantly. As for the person I might have insulted in the last couple of days, I think that was the first time I actually saw a picture of her. The picture was pretty and that's a simple objective fact.
Finally, I need to stop thinking of all the bad things I've done in my life now that I'm almost 41. I'm entering my fifth decade of accumulating mistakes and misdeeds. While I do need to learn from them, I must remember the Chiarian motto and "Be gentle with myself."
Today was supposed to be about active listening so I suppose that's next. I think I need to study up or something.
The poor messenger asked me (in his own words) if something had been wrong that day because I hadn't spoken to a certain someone. I probably sounded a bit sarcastic but it was out of legitimate surprise when I expressed my surprise that she had noticed. He put about a paragraph of emphasis into three words, "Yeah. She noticed."
Since the entire snit had been over feeling invisible, my bit of self righteous anger collapsed in on itself. I assured my poor messenger friend that I'd been upset about something but not anymore. Before you think that this is me being self congratulatory, I assure you that I was quite upset that I had inflicted whatever tiny amount of damage that I'd done. My intention was to avoid being my usual self and I found it easy to see myself as a boot licking puppy in those days. Yes, I was - and I am - a few years younger but that did not make me a subordinate just for being nice to someone.
I bring this up because it happened to me again within the last couple of days but in a much lower pressure situation. I saw a picture of someone I'd known online for something like a decade and I complimented her as had many others. That's when the figurative voice in the back of my head told me that I wrote something that made me appear to be some drooling teenage pervert so I added a weak joke on the end. Feeling slightly better, I decided to post the comment instead of deleting it all as I had considered. A back and forth insued and I felt like a complete fool but it ended with her replying that she would have simply believed that the other person would accept a simple compliment but that it might not have been my experience. Ding ding ding! And the winner gets this back handed apology. Is it a left handed apology that I mean? One is actually something nasty disguised as an apology but I mean the one where the apology is real but all covered in a disguise of humor.
Let's skip back to a time so long ago that it was only about a year before I met Melissa as Melissa. I was in a big argument with my girlfriend at the time and she was one who liked to defend herself by appearing all cold and impossible to affect. In fact, I made frequent remarks that I kept in the privacy of my own head that I would rather be with someone like Melissa. (That last part was self congratulatory, of course.) I lobbed insult after insult over the apparently unaffected castle walls to no apparent effect. This all took place online in the Internet's younger days so I was unsurprised when she lost her connection. I took the opportunity to disappear as well before she could return and continue to kick my butt.
Now I'm confused. I think this argument might have taken place after the breakup and after Melissa and I had gotten together. That would make it actually 20 years ago. The ex and I tried to be friends a few times but we kept on running into the same problem. I would hurt her feelings, she would pretend like I was nothing more than a two year old and so I would try harder. Unfortunately, as she confessed to me during one of those times of friendship, I was hurting her feelings and she was just hiding it to try and deny me satisfaction.
The moral of this story is that 2+2=4 no matter how much it looks like 17. If you are being nice to someone, chances are that they do not resent it and think of you as an annoying puppy who won't go away. If you say something hurtful, the target of the insult will probably be hurt. You are probably telling yourself that you're of above average intelligence so you don't need to hear this but I'm of above average intelligence and I could have used the advice within the last couple of days.
I know the impulse that makes you think that you should lash out and I know it well. There have been many years of my life when I've felt invisible to everything but trouble. Trouble can find anyone at any time. I need to work on not being the trouble. The woman who inspired these last few entries is three years older than I am with more kids than I can imagine having. It is far more important from an objective perspective that she spends her attention on those children and her current life than on someone who thought that she was a hero 30 years ago. The ex and I were never serious and we weren't particularly well matched. Then again, we were each other's best option for a brief time more than 20 years ago and I have some fond memories. I'm quite sorry that our very last conversation involved her hitting me with a legitimate complaint that I didn't understand because I confused it with something else. Much later, I had a real metaphorical head slapping moment when I realized that I should have apologized because I had done what she said I'd done though inadvertantly. As for the person I might have insulted in the last couple of days, I think that was the first time I actually saw a picture of her. The picture was pretty and that's a simple objective fact.
Finally, I need to stop thinking of all the bad things I've done in my life now that I'm almost 41. I'm entering my fifth decade of accumulating mistakes and misdeeds. While I do need to learn from them, I must remember the Chiarian motto and "Be gentle with myself."
Today was supposed to be about active listening so I suppose that's next. I think I need to study up or something.
Monday, June 8, 2015
From Grief to Growth Pt. 2
First of all, I'd like to mention that another friend of mine who is very much still part of my life had her first child recently. I'm not sure how old the information was when my Facebook account started working again miraculously but I wouldn't give you a child's personal information anyway. Congratulations, old friend and to her hubby as well! Congratulations and thank you for staying in my life.
Now, I'd like to continue honoring the help I received from that old friend about 20 years ago. So far, I've covered what we might call conversational posture. With a few simple even when not easy skills, you can help improve someone's self esteem drastically. Continuing along those lines, there is so much you can do to help someone using the power of touch. One of my current favorite writers, Jim Butcher, gets deeply into the power of touch with his professional wizard, Harry Dresden. At one point, a very unhappy Dresden notes that no one had touched him in months except to deliver the occasional beating. Therefore, a pleasant touch from someone is impossibly pleasing despite the lack of any sexual context.
When I was 14, I became aware of the fact that no one touched me other than family members. In fact, there was a zone extending approximately six inches from my skin where no one was willing to go. I started looking forward to things like crowded hallways where I might get jostled just for the human contact. This friend of mine actually touched my shoulder or arm during a conversation and I'm sure I flinched away the first time.
Unfortunately, this is one of those arguably manipulative things. I joke that I can use my powers for good or evil but there's an element of truth to it. When horses are "broken," the process starts with a light touch and ends with the horse wearing bit, bridle and saddle. I have seen the results of this sort of gentle approach applied to humans and the victim's life gets shattered. Don't use touch as the means to an end. Just don't. I've never had it done to me or even had anyone try. I'm very lucky that the awkward 14 year old me met someone so nice and safe to be around.
I don't really want to get into technique where touching is concerned because so much is involved. Everyone is different so there are few hard and fast rules. Since I think it would be obvious, I am sure that someone will think otherwise. Don't try touching a shy person anywhere you'd be in trouble for touching a minor in front of some high moral authority. Don't grab hold of anyone. Even if the shy and/or awkward person finds you attractive and turns out to be your spouse years down the road, start very slowly. Pats on the back or arm are good when you're dealing with someone who is unused to being touched.
If you find success so that both of you are comfortaable, repeat and repeat often. If your new friend is someone like I was, you are overcoming years of physical isolation and worse.
Touching is a very tense subject for me to this day. I crave contact with other human beings but simple touches can be painful to an extent that is vastly out of proportion with the intent of the touch. A pat on the shoulder can be horribly painful these days so I shy away from touching. Melissa is one of the very few people who know how touching me can hurt me yet understands that I still need it. Even she can get nervous about it all when my symptoms are firing away. Some doctors understand extremely well. I still remember one giving me a shot with a needle that appeared too long to be used by someone in the same room with me. I took in a sharp breath, muttered some variant on ow and then realized it hadn't actually hurt. Out of respect for the doctor, I admitted that it had been a premature ow because I thought it would hurt.
Melissa's late Aunt Lois suffered from severe pain from both cancer and heart troubles and we're not sure which killed her. I used to look forward New York trips just for her hugs. She understood me and I don't recall her hurting me even once. We were fighting the same battle and I miss her for many things but the hugs alone would have been enough.
Touch is a powerful tool and it must be used carefully. Keep your new friend's reactions in mind and don't push them too hard or too fast. The simplest touches can end up meaning the most. I can remember my old friend helping me with the top clasp on the neck of my band uniform. My fingers were too pudgy and I was nervous because everyone was watching me struggle. (Few people were watching but it always feels like everyone when you are struggling.) She just walked up to me, hooked the dratted thing and I was filled with intensely warm feelings of friendship. I misunderstood how I felt but the 40 year old me understands that you can feel a roaring blaze of friendship especially when touch is involved.
Never underestimate friendship. The word alone has great power that we've diluted sadly in our society with terms like "just friends." Many of us live in tight quarters with millions of people if we live in cities. It is possible to show enough politeness to each of those people to brighten their days but few will rise to the level of friend.
Now, I'd like to continue honoring the help I received from that old friend about 20 years ago. So far, I've covered what we might call conversational posture. With a few simple even when not easy skills, you can help improve someone's self esteem drastically. Continuing along those lines, there is so much you can do to help someone using the power of touch. One of my current favorite writers, Jim Butcher, gets deeply into the power of touch with his professional wizard, Harry Dresden. At one point, a very unhappy Dresden notes that no one had touched him in months except to deliver the occasional beating. Therefore, a pleasant touch from someone is impossibly pleasing despite the lack of any sexual context.
When I was 14, I became aware of the fact that no one touched me other than family members. In fact, there was a zone extending approximately six inches from my skin where no one was willing to go. I started looking forward to things like crowded hallways where I might get jostled just for the human contact. This friend of mine actually touched my shoulder or arm during a conversation and I'm sure I flinched away the first time.
Unfortunately, this is one of those arguably manipulative things. I joke that I can use my powers for good or evil but there's an element of truth to it. When horses are "broken," the process starts with a light touch and ends with the horse wearing bit, bridle and saddle. I have seen the results of this sort of gentle approach applied to humans and the victim's life gets shattered. Don't use touch as the means to an end. Just don't. I've never had it done to me or even had anyone try. I'm very lucky that the awkward 14 year old me met someone so nice and safe to be around.
I don't really want to get into technique where touching is concerned because so much is involved. Everyone is different so there are few hard and fast rules. Since I think it would be obvious, I am sure that someone will think otherwise. Don't try touching a shy person anywhere you'd be in trouble for touching a minor in front of some high moral authority. Don't grab hold of anyone. Even if the shy and/or awkward person finds you attractive and turns out to be your spouse years down the road, start very slowly. Pats on the back or arm are good when you're dealing with someone who is unused to being touched.
If you find success so that both of you are comfortaable, repeat and repeat often. If your new friend is someone like I was, you are overcoming years of physical isolation and worse.
Touching is a very tense subject for me to this day. I crave contact with other human beings but simple touches can be painful to an extent that is vastly out of proportion with the intent of the touch. A pat on the shoulder can be horribly painful these days so I shy away from touching. Melissa is one of the very few people who know how touching me can hurt me yet understands that I still need it. Even she can get nervous about it all when my symptoms are firing away. Some doctors understand extremely well. I still remember one giving me a shot with a needle that appeared too long to be used by someone in the same room with me. I took in a sharp breath, muttered some variant on ow and then realized it hadn't actually hurt. Out of respect for the doctor, I admitted that it had been a premature ow because I thought it would hurt.
Melissa's late Aunt Lois suffered from severe pain from both cancer and heart troubles and we're not sure which killed her. I used to look forward New York trips just for her hugs. She understood me and I don't recall her hurting me even once. We were fighting the same battle and I miss her for many things but the hugs alone would have been enough.
Touch is a powerful tool and it must be used carefully. Keep your new friend's reactions in mind and don't push them too hard or too fast. The simplest touches can end up meaning the most. I can remember my old friend helping me with the top clasp on the neck of my band uniform. My fingers were too pudgy and I was nervous because everyone was watching me struggle. (Few people were watching but it always feels like everyone when you are struggling.) She just walked up to me, hooked the dratted thing and I was filled with intensely warm feelings of friendship. I misunderstood how I felt but the 40 year old me understands that you can feel a roaring blaze of friendship especially when touch is involved.
Never underestimate friendship. The word alone has great power that we've diluted sadly in our society with terms like "just friends." Many of us live in tight quarters with millions of people if we live in cities. It is possible to show enough politeness to each of those people to brighten their days but few will rise to the level of friend.
Friday, June 5, 2015
From Grief to Growth
The first thing I need to do for this post is to specify that no one has died recently in my various circles and networks. I am mourning the loss of an old friend who simply broke off contact with no explanation or notice whatsoever. First, I denied it to myself and then I tried to bargain but that's difficult when someone won't contact me and so on. I was actually angry at this old friend for a while and you can fit the number of times I've been truly angry with her on one hand. Finally, I wallowed for a bit and I've decided to move on as inspired by the post of someone who lost her husband to cancer. She lost her husband who had been in her life physically in recent times and not some online connection that might be far less important to someone who isn't me.
Cheryl Goldberg lost her husband to cancer and she has decided to move on with her life as best she can by helping people. For better or worse, she's a brilliant speaker and writer with a huge following while I am who I am. I've lost someone who was once very important to me but had been of far less importance for around 20 years to be honest. I've decided to honor her memory by sharing what she did that taught me how to feel like a valuable human being whether she meant to teach me or not. In memory of my anonymous friend, I am going to try to flesh out one or two things that gave her such influence over me. She did all this just by being herself so any accusations of manipulativeness will result in a metaphorical punch in the nose. Manipulation is something done as a means to an end. These things that lead to knowing people better for who they are. That is the end for me.
So, what's the first thing that you can do for someone to help them learn their own value? When you are speaking to them, invest that time in them completely even if it is just a few seconds. Make eye contact when you speak. This is a skill that may be more difficult to learn for some than for others. If you cannot manage eye contact, try focusing on some part of their face. If possible, turn your body square to your new friend and face them straight on while speaking. If you can find that spot on their face you feel comfortable looking into, hold your eyes there as best you can. If you keep trying to make direct eye contact and are forced to look away, you may appear distracted.
The entire process is important. Taking the time to shift your posture so that it is oriented on them establishes the fact that you are paying attention. Making and holding what you might want to think of as eye posture if you cannot manage eye contact makes the person feel as if they are the only other person in the room.
This is intense stuff especially for someone unused to enjoying the full attention of others. As the subject of such attention, I remember feeling fixed to the spot yet eager to escape only to crave more attention later. You can depend on this to make your escape so to speak. At the point when this becomes too uncomfortable for one of you, feel free to make honest excuses to get on with your day. A person in need of your help will remember that you stopped and took time out of your busy day to speak with them. The key is being honest. If you need to go and it isn't because you are busy, don't offer any fake details. Just tell the person that you need to go and take the time to say goodbye, see you later or whatever seems appropriate to the situation.
With that, I bid you good day until I'm up to writing here again.
Cheryl Goldberg lost her husband to cancer and she has decided to move on with her life as best she can by helping people. For better or worse, she's a brilliant speaker and writer with a huge following while I am who I am. I've lost someone who was once very important to me but had been of far less importance for around 20 years to be honest. I've decided to honor her memory by sharing what she did that taught me how to feel like a valuable human being whether she meant to teach me or not. In memory of my anonymous friend, I am going to try to flesh out one or two things that gave her such influence over me. She did all this just by being herself so any accusations of manipulativeness will result in a metaphorical punch in the nose. Manipulation is something done as a means to an end. These things that lead to knowing people better for who they are. That is the end for me.
So, what's the first thing that you can do for someone to help them learn their own value? When you are speaking to them, invest that time in them completely even if it is just a few seconds. Make eye contact when you speak. This is a skill that may be more difficult to learn for some than for others. If you cannot manage eye contact, try focusing on some part of their face. If possible, turn your body square to your new friend and face them straight on while speaking. If you can find that spot on their face you feel comfortable looking into, hold your eyes there as best you can. If you keep trying to make direct eye contact and are forced to look away, you may appear distracted.
The entire process is important. Taking the time to shift your posture so that it is oriented on them establishes the fact that you are paying attention. Making and holding what you might want to think of as eye posture if you cannot manage eye contact makes the person feel as if they are the only other person in the room.
This is intense stuff especially for someone unused to enjoying the full attention of others. As the subject of such attention, I remember feeling fixed to the spot yet eager to escape only to crave more attention later. You can depend on this to make your escape so to speak. At the point when this becomes too uncomfortable for one of you, feel free to make honest excuses to get on with your day. A person in need of your help will remember that you stopped and took time out of your busy day to speak with them. The key is being honest. If you need to go and it isn't because you are busy, don't offer any fake details. Just tell the person that you need to go and take the time to say goodbye, see you later or whatever seems appropriate to the situation.
With that, I bid you good day until I'm up to writing here again.
Wednesday, May 27, 2015
Those Glorious Refreshing Showers
I hear it all over the place. Showers are the cure for all that's wrong with you. On a hot day, there's nothing like a hot shower to get all that sweat off you. On a cold day, a nearly scaldingly hot shower will take the ache right out of those bones. I never got the "hot shower" thing since I've always been sensitive to heat but the shower was a great place to solve problems in my head. Unless my father was timing me in order to teach me how to be more efficient or something, I did learn to enjoy a good shower. My father seemed to believe that adding time pressure to any task would help me somehow unless he just enjoyed making me freak out.
So, you might think that this is going to be about how my father ruined showers for the rest of my life but you'd be mistaken. As I started to experience arm pain and my restless arm syndrome, showers stopped being pleasant. After a shower, I have more trouble than usual using my arms as more than counter balancing weights somehow involved in walking. No, really! I'm just talking about swinging my arms. I can do that. Bringing my hands up to a typing position will be miserable
It's not just a matter of pain. I'm worn out compared to how I've been feel normally which isn't exactly fresh.
So, you might think that this is going to be about how my father ruined showers for the rest of my life but you'd be mistaken. As I started to experience arm pain and my restless arm syndrome, showers stopped being pleasant. After a shower, I have more trouble than usual using my arms as more than counter balancing weights somehow involved in walking. No, really! I'm just talking about swinging my arms. I can do that. Bringing my hands up to a typing position will be miserable
It's not just a matter of pain. I'm worn out compared to how I've been feel normally which isn't exactly fresh.
Sunday, May 24, 2015
Overdoing It
You would think I'd learn my lesson one of these days and I might. It's been 15 years of my lovely Chiari experience and I have yet to have this lesson stick. It doesn't matter that there might only been ten cool and breezy days of sunny Spring/Fall weather each year. Yes, they are glorious. It's enough to make me want to stay in the office all day writing and interacting with others as best I can. Unfortunately, I have limits and they aren't limits that anyone would ever find reasonable. Even on the nicest day of the year, I have to spend most of the day sitting in my recliner doing very little.
If that sounds wonderful, you're right because it's great for the first week. There is so much that I would like to do but overdoing it is one of those things you don't forget. If I don't forget the penalty, why do I slip up and overdo things so often? For one thing, the line between doing just enough to satisfy my need to meet goals for the day is invisible and it moves. It seems that all it takes is one foot over the invisible line that moves and I'm in for a rough few days. Therefore, Melissa tries to remind me to avoid doing too much despite the fact that I have to leave more for her to do than she can handle.
I suppose I could get my team together and figure out a way to avoid overdoing it but I don't think I'd like the results. When you get right down to it, there's some small part of me that isn't open to all this compromise. I have resisted authority for as long as I can remember and my disability is the highest de facto authority in my life. Therefore, I need sleep but I can't deal with the anxiety attacks that hit when I try to sleep. The best thing I can do to thumb my nose at this Chiari dictatorship is to overdo it once in a while.
What's that you say? I'm not actually thumbing my nose at the pain and twitching that will come? I'm actually giving in to my fear of sleep at great cost to myself? You could say it that way but I prefer my way of putting it. Learning to take some of the sting out of bad situations by reframing them as advantages is one of my most important coping skills. When I do succumb to exhaustion and sleep for 3-4 hours and have my nightmares, I'll awaken feeling just as badly. Is that a defeat? You don't listen well. No! It's a chance to drink whiskey with club soda while telling myself it's actually 20 year old Scotch and not something rejected as paint thinner.
In truth, it doesn't taste half bad and it helps dull the pain. Best of all, it calms the nerves. My doctor just reminds me to avoid overdoing it. Oops.
If that sounds wonderful, you're right because it's great for the first week. There is so much that I would like to do but overdoing it is one of those things you don't forget. If I don't forget the penalty, why do I slip up and overdo things so often? For one thing, the line between doing just enough to satisfy my need to meet goals for the day is invisible and it moves. It seems that all it takes is one foot over the invisible line that moves and I'm in for a rough few days. Therefore, Melissa tries to remind me to avoid doing too much despite the fact that I have to leave more for her to do than she can handle.
I suppose I could get my team together and figure out a way to avoid overdoing it but I don't think I'd like the results. When you get right down to it, there's some small part of me that isn't open to all this compromise. I have resisted authority for as long as I can remember and my disability is the highest de facto authority in my life. Therefore, I need sleep but I can't deal with the anxiety attacks that hit when I try to sleep. The best thing I can do to thumb my nose at this Chiari dictatorship is to overdo it once in a while.
What's that you say? I'm not actually thumbing my nose at the pain and twitching that will come? I'm actually giving in to my fear of sleep at great cost to myself? You could say it that way but I prefer my way of putting it. Learning to take some of the sting out of bad situations by reframing them as advantages is one of my most important coping skills. When I do succumb to exhaustion and sleep for 3-4 hours and have my nightmares, I'll awaken feeling just as badly. Is that a defeat? You don't listen well. No! It's a chance to drink whiskey with club soda while telling myself it's actually 20 year old Scotch and not something rejected as paint thinner.
In truth, it doesn't taste half bad and it helps dull the pain. Best of all, it calms the nerves. My doctor just reminds me to avoid overdoing it. Oops.
Wednesday, May 20, 2015
Summer Is Coming
Other than a tongue in cheek reference to the "winter is coming" theme of George R. R. Martin's now famous books, this title is a twist on that theme. Turning it on its head, summer is coming and it will bring a time of great hope and struggle with it. Winter has made all of my aches and pains work. After the long winter, I am exhausted and all but crushed but I seem to have survived. One of the great lessons in pain management is to survive now and deal with everything else later. Life doesn't like to cooperate and gives me crises with short term deadlines but the details don't matter right now. I survived and summer is coming.
Over the course of the next month, we'll get into A/C weather which sucks the humidity out of the air along with the heat. My energy will improve along with my overall mood. The heat is just as hard on my body as the cold but I can counter it better. Maybe it isn't so much a matter of dealing with the bad things in my life so much better. I know that I am doing better about getting excited about the good things. Facebook games and Playstation games interest me again. "FIFA '11" is the PS3 soccer game and I've started to see the poetry of the game again. My attacking midfielder cuts through groups of defenders. My defenders make long passes behind the opposing defense and the forwards manage to stay onside once in a while. When they do, it can be glorious. My favorite is when they occupy all the opponent's defenders leaving me wife open in front of the net.
On Facebook, I have good friends who play Galaxy Online II with me. I'm such a nerd but I'm surrounded by fellow nerds. I'm replacing older obsolete missile frigates wuth updated versions. At the same time, I'm gathering resources for the next big technolol leap forward. It's exciting even when it's frustrating. In real life, the coffee is very good though it's a risk of extreme tooth pain. There's always some sort of tradeoff but that's just life.
Yes, there are problems and issues all the time but there is also good in the world. I must remember to see the good even more than most people. I'm surviving and summer is coming.
Over the course of the next month, we'll get into A/C weather which sucks the humidity out of the air along with the heat. My energy will improve along with my overall mood. The heat is just as hard on my body as the cold but I can counter it better. Maybe it isn't so much a matter of dealing with the bad things in my life so much better. I know that I am doing better about getting excited about the good things. Facebook games and Playstation games interest me again. "FIFA '11" is the PS3 soccer game and I've started to see the poetry of the game again. My attacking midfielder cuts through groups of defenders. My defenders make long passes behind the opposing defense and the forwards manage to stay onside once in a while. When they do, it can be glorious. My favorite is when they occupy all the opponent's defenders leaving me wife open in front of the net.
On Facebook, I have good friends who play Galaxy Online II with me. I'm such a nerd but I'm surrounded by fellow nerds. I'm replacing older obsolete missile frigates wuth updated versions. At the same time, I'm gathering resources for the next big technolol leap forward. It's exciting even when it's frustrating. In real life, the coffee is very good though it's a risk of extreme tooth pain. There's always some sort of tradeoff but that's just life.
Yes, there are problems and issues all the time but there is also good in the world. I must remember to see the good even more than most people. I'm surviving and summer is coming.
Thursday, February 19, 2015
Another Reason to Be Alive
There was a TV show or a movie or maybe even a book on recently that gave me some new thoughts about the math of being alive. That's right! It was an episode of "Criminal Minds" that, oddly enough, ended in a suicide. The dying character kept citing one of my old motives for wanting to die: she wanted to go out on her own terms instead of waiting until she was too sick to make her own decisions. She came to this conclusion after nearly a year and a half of suffering through ALS or Lou Gehring's disease. ALS is one of the most painful, frightening and humbling ways that you can die so she decided to die while she was still herself.
My initial reaction to this was sympathy. I don't know how many times I tried to kill myself or seriously considered doing so but the reason was almost exactly the same. I feared a loss of freedom, choice and the loss of everything I'd struggled to gain. This fictional Caroline wanted to go out before she had suffered beyond a certain point and I thought about Chiari. I took a step back and saw who I was, when I got sick and how things changed after that. Now that I have a history to examine, I can look back and see specific benchmarks and apply my question to them. Where was my high point where I could have left on my own terms?
When could I have left at the top? My first thought was that I could have left at the top at Christmas of 1999. I was a newlywed and ecstatic about it. I was on an emotional high that I don't expect to match. The next landmark along the road was diagnosis and surgery. Looking back, I know that the first surgery made me sicker after an additional wait. I should have known that I was 70% likely to keep symptoms but I was still a newlywed and good times remained. The hope of the second surgery came next. My second surgeon knew what had gone wrong the first time and he would fix it all.
If you want to solve the formula for y instead of x this time, there was a moment before the second surgery when I couldn't take it anymore. There was absolutely nothing that could motivate me to survive a third year of this awfulness. I kept faith that I would find a way to get better and, well, there was some improvement and even more decline but I survived into my 15th year. On one hand, there was no one willing to accept my surrender and then care for me. The war would go on even if I tried to give up but I would stop enjoying my small victories here and there.
The point of all this pseudo-math is that depressed people make poor logical assumptions. I'm in awful pain every day but that does not preclude fun. My long time best friend named Dave and I have these esoteric conversations sometimes and he's the only person who enjoys having them with me. We discovered the existence of a law of supply and demand that applies to fun, free time and other good things in life. We never quantified anything but then we suspected that the specifics are different for each person.
Life is all the more precious when you suspect that you are dying without planning to do so. I'm done hiding what the precious things in my life have been. Time spent with Melissa is number one with time spent with non-romantic loved ones coming in a close second. That includes time spent with those feline babies. Why don't I force Madeline to move sooner when she's forcing me into an uncomfortable position? It's simple. I may want to do something that doesn't involve Maddie, Pippi and Meeks but I still dislike the fact that the moving around requires them to leave me alone for a while. I'm also very food and drink oriented despite all the years I was taught to be ashamed of this. I'd love to take a couple of years deciding whether I prefer Scottish ale, Belgian ale or 12 year old Scotch the most. Before I die, I'd like to enjoy some 20 year old single malt. What about Irish whiskey? I've never had the pleasure of trying it and hope to do that as well.
Of course, a day like today gives me second thoughts. I spent the day in hideous pain with my meds giving next to no relief. Melissa went in to work an opening shift after we got paid but before any stores opened. For about the third day in a row, she cooked dinner which was a good thing but she didn't understand that I wanted something that required no work at all in order to eat. The pain is bad enough that I don't want to try working my jaw. When she figured out that something was wrong, she made me chicken nuggets which were good enough.
What I really wanted was liquid anesthetic (strong alcohol) to make it through the boredom.and through this god awful constant pain. As Thomas Paine once wrote, "These are the times that try men's souls." I've tried many times to tell her that I'd much rather drink my dinner in times like these. I'm so sick of the pain that I want to be unconscious or barely conscious so that I can listen to music while I'm mostly asleep. Maybe that would kill me sooner than the pain would but I don't care very much. I'm pledged to resist the urge to kill myself. That doesn't mean that I look forward to a subjectively long experience with pain.
I'll play the hand I was dealt but that means I intend to play it for every bit of relief that I can get. It's all I can do now on a bad day like this. Obviously, I'm not going to make any major decisions right now because I know I'm depressed but it is no fun to use up a whole day's worth of medication and have the day not be over yet. I won't overdose even a little because I don't want to hurry tolerance along any more than I am now.
My initial reaction to this was sympathy. I don't know how many times I tried to kill myself or seriously considered doing so but the reason was almost exactly the same. I feared a loss of freedom, choice and the loss of everything I'd struggled to gain. This fictional Caroline wanted to go out before she had suffered beyond a certain point and I thought about Chiari. I took a step back and saw who I was, when I got sick and how things changed after that. Now that I have a history to examine, I can look back and see specific benchmarks and apply my question to them. Where was my high point where I could have left on my own terms?
When could I have left at the top? My first thought was that I could have left at the top at Christmas of 1999. I was a newlywed and ecstatic about it. I was on an emotional high that I don't expect to match. The next landmark along the road was diagnosis and surgery. Looking back, I know that the first surgery made me sicker after an additional wait. I should have known that I was 70% likely to keep symptoms but I was still a newlywed and good times remained. The hope of the second surgery came next. My second surgeon knew what had gone wrong the first time and he would fix it all.
If you want to solve the formula for y instead of x this time, there was a moment before the second surgery when I couldn't take it anymore. There was absolutely nothing that could motivate me to survive a third year of this awfulness. I kept faith that I would find a way to get better and, well, there was some improvement and even more decline but I survived into my 15th year. On one hand, there was no one willing to accept my surrender and then care for me. The war would go on even if I tried to give up but I would stop enjoying my small victories here and there.
The point of all this pseudo-math is that depressed people make poor logical assumptions. I'm in awful pain every day but that does not preclude fun. My long time best friend named Dave and I have these esoteric conversations sometimes and he's the only person who enjoys having them with me. We discovered the existence of a law of supply and demand that applies to fun, free time and other good things in life. We never quantified anything but then we suspected that the specifics are different for each person.
Life is all the more precious when you suspect that you are dying without planning to do so. I'm done hiding what the precious things in my life have been. Time spent with Melissa is number one with time spent with non-romantic loved ones coming in a close second. That includes time spent with those feline babies. Why don't I force Madeline to move sooner when she's forcing me into an uncomfortable position? It's simple. I may want to do something that doesn't involve Maddie, Pippi and Meeks but I still dislike the fact that the moving around requires them to leave me alone for a while. I'm also very food and drink oriented despite all the years I was taught to be ashamed of this. I'd love to take a couple of years deciding whether I prefer Scottish ale, Belgian ale or 12 year old Scotch the most. Before I die, I'd like to enjoy some 20 year old single malt. What about Irish whiskey? I've never had the pleasure of trying it and hope to do that as well.
Of course, a day like today gives me second thoughts. I spent the day in hideous pain with my meds giving next to no relief. Melissa went in to work an opening shift after we got paid but before any stores opened. For about the third day in a row, she cooked dinner which was a good thing but she didn't understand that I wanted something that required no work at all in order to eat. The pain is bad enough that I don't want to try working my jaw. When she figured out that something was wrong, she made me chicken nuggets which were good enough.
What I really wanted was liquid anesthetic (strong alcohol) to make it through the boredom.and through this god awful constant pain. As Thomas Paine once wrote, "These are the times that try men's souls." I've tried many times to tell her that I'd much rather drink my dinner in times like these. I'm so sick of the pain that I want to be unconscious or barely conscious so that I can listen to music while I'm mostly asleep. Maybe that would kill me sooner than the pain would but I don't care very much. I'm pledged to resist the urge to kill myself. That doesn't mean that I look forward to a subjectively long experience with pain.
I'll play the hand I was dealt but that means I intend to play it for every bit of relief that I can get. It's all I can do now on a bad day like this. Obviously, I'm not going to make any major decisions right now because I know I'm depressed but it is no fun to use up a whole day's worth of medication and have the day not be over yet. I won't overdose even a little because I don't want to hurry tolerance along any more than I am now.
Monday, January 26, 2015
The 24 Hour Loneliness and Pain Cycle
We live in the age of the 24 hour news cycle. With 24 hour news networks and faux news networks, there is something newsworthy to report 24 hours a day 7 days a week or so we're led to believe. I live a concept similar to the 24 hour news cycle. Since pain deprives me of sleep so often yet it doesn't do quite the same to others, I live days that are objectively twice as long as those lived around me. Subjectively, the ratio feels a lot worse than 2-1. The boredom is almost as bad as the pain sometimes.
My strategy is to live intensively instead of extensively. Well, I have to do both in order to avoid the boredom/agony issue but I like to cram as much writing and/or gaming into an hour or two. After that, I get to be awake for the next 20 hours without the ability to do much. When I saw unable to do "much," please keep in mind that TV watching can be exhausting. A day when I can complete a game of "Madden Football" is rare and exciting. Blog posts are few and far between because I lack sustained energy. The struggle to avoid boredom over a 24 hour day and the constant exhaustion it causes are the yin and yang of my life.
I was bitterly frustrated that an old friend has had no time for me after all. It had seemed as if we had both expended too much effort to give up. As usual, I am judging her too harshly. There was a time when I believed she could do no wrong. As long ago as that time was, I find myself clinging to fragments of that belief. Of course she'll have time for me. What sort of person works full time, cares for four children and doesn't have blocks of time to set aside for someone she hasn't seen in 20 years? If you had your sarcasm meter running, you would realize that no one is like that. I started to use words like dedicated but I realized that she is dedicated to the people who are part of her life today.
It's different for me. I find myself awake at 4 AM contacting people on a whim while neglecting others. The list of people whom I neglect on a high energy day like this is astounding. The frustrating thing is that I cannot learn from this and do differently. The vicious cycle of pain and boredom has reduced me to someone I recognize as a mere caricature of me. I am needy 24 hours a day and seven days a week.
The urge to write has been all but drained from me. This is where I draw the line. Writing is a big part of who I am. If I lose the use of my hands somehow, I'll invest in voice recognition software but I refuse to stop writing. My problem isn't so much physical at the moment. I have not had the urge to write in some time. It's something I want to do well and so my current lack of confidence isn't helping. The biggest obstacle right now may be the PC. After I get the energy to come upstairs and write something, I have to deal with memory issues by rebooting and making sure I don't leave anything running unless I'm using it at that specific moment. It feels as if I'm running out of energy just as I'm starting to write.
Then there is the mighty distraction machine known as Facebook. There are so many things I can do there to alleviate boredom during the couple of hours when I have energy. Very few of those nearly effortless things add value to the world but I am genuinely curious about the answers to the mysteries in certain games. I want to know what happened my miner character's equally fictional father but I can't wait eight hours to have "the workers" make the cheese to unlock the recipe to make the yogurt the game asked for months ago in real time. I've actually forgotten why I need to employ the jeweler much less why his workers insist upon eating yogurt before they will finish the job. I think I have about a thousand eggs sitting around but they are chicken eggs not the turkey eggs I need in order to unlock the yogurt recipe. I haven't written anything much less anything to further my fiction career but the cramps in my arms are becoming increasingly painful. Eep! I just lost my wall that I keep up to prevent there mere background pain from making me go cringe and attempt to sleep.
There's another source of pain that I try to keep locked away but it has worked its way out through the secret doors and hidden passages of my heart. Well, let's say that there are two secret sources but the grief, anger, hurt and doubt that thinking about my parents brings out is nothing new anymore. Perhaps my inability to keep thoughts of my parents locked away comes from this second source. There are times - often mere moments in a day - when I am horribly lonely. I think of moments in the past when I made real connections with people which provided joy or solace. It's awful how far in the past most of these moments actually are but that's not the real problem. People who shared such moments with me either repudiated me soon after or have made it clear that there is no path leading back to what is purely the past for them.
It's tough to remember that my duty as a friend is to accept their wishes no matter how silly I find them. That's often when the little kid in me leaks out and whines. "Are you so ashamed of the time spent with me that it's off limits talk?" We're not talking anything sordid here. I had conversations with people and have kept the content of those conversations to myself because that's what friends do. I would give so much to have more of those conversations but the unwillingness of others is far from the only barrier. If you've never met me, I don't think I could offer an adequate description of what it's like trying to have a conversation with me. Calling what I do when I get flustered stuttering is like calling a top of the line Porsche a car. It is factually accurate but fails to cover the scope of the thing utterly.
There was one time a few years ago when I read a book about meditation and spent some time doing more than my usual "slow down my brain so I can sleep" routine. I decided that the time had come to say goodbye to someone I hadn't seen in 20 years or so. At the time, I believed that everything would be okay if I could just thank her for being my hero when I was 14. She was a big reason why I managed ro hang on despite all the abuse at one of the most vulnerable times in my entire life. She was my friend so I had to be of some value no matter what my parents hinted at or said. Well, my point isn't to put her on some pedestal again. Even then, I was aware that she had flaws. She simply treated me like a human being unlike most people despite all the weirdness that generated from me.
In any case, I was writing about meditation. I wanted to tell her goodbye so I did what any little kid would do and built a scene in my mind. In that, I told her the things that I needed to say and I felt much better for quite some time. Since I was a young kid, there have been many times when I have needed to talk with a specific person but that person might as well have been on the moon. I could not simply call up a friend or, especially, an adult mentor just because my life was in crisis and I needed that person's input. I was told to make the best of it or whatever. At some point, I learned to have conversations entirely in my own head involving that person or what I knew of him or her.
Much of the time, the other person would help me work through the flaws in some plan or other that I had going. As I got older, the conversation involved talking me through the anguish of wanting to please my parents more than anything only to fail over and over. The mere fact that my father called me a such and such (for many different values of such and such) did not make me a such and such. The hours spent establishing the case against me as a such and such did not mean he was right because there was a flaw in the argument somewhere. The fact that there was a valid point or two in all of it did not extend beyond the value of those specific points. I did not have to pass judgment on myself for being a such and such just because he said so.
In recent days, the other person has been Melissa while she's on a long work day. The self esteem that had to fall back on that friend from high school (If she wants to be my friend, then I must be okay.) has long since been replaced by my faith in Melissa. (Melissa loves me so I know I'm okay. The rest of the New York family loves me too so I must be worthy of being in a family.) I used to worry that I was crazy to do this but my favorite mental health professional told me there's nothing wrong with it personally then repeated it more than a few times in my head.
With so many barriers to the human contact I need, I should build the scene in my head. It would be one of those Fall days I used to love so much with the bright colors all over the trees. During the day, it would be comfortable shorts weather for me so everyone else would be wearing light jackets and jeans. Any warmer and bugs would work their way into the scene. We could throw a football around since it's my scene and I want to remember what it felt like having energy to burn in what my parents would call wasting time. If I bothered having a name for it, I'd call it an investment in enjoying my youth while it remained.
As afternoon became evening, we would get at least one cheerful campfire going. We'd all continue to enjoy each other's company through a meal that would change depending on my mood but chili sounds like a great idea as the temperature drops. Some people would disappear into tents earlier than others depending on how long they had been married. The rest of us (in this fantasy) stay out by the fire and talk about important things like love and loss, joy and heartbreak, triumph and tragedy and maybe even friends who were absent this time. Even while discussing the past, we'd have hope for the future. I don't want to believe that all the adventure of my life is in the past.
The scenery and conversation would change with the people involved. I could see myself in a room filled with smoke that, miraculously, doesn't cause cancer and a list of other bad things long enough to make Chiari ashamed of itself. We would discuss the important ideas of the day, how they relate to the past and how they might influence the future. We would relate to it all through visual arts, music and fiction.
It hurts knowing that I will never know people like that again. It hurts to feel cast out by the person whose opinion was once my source of personal validation. It hurts a lot less while I reach out and touch my memories. If I remember to touch these memories as they were, I might be better at handling those few minutes of agonizing anguish I get each day.
Maddie the cat is doing laps around the house stopping each time by to remind me that I would have less time to be lonely if I simply did what she asked and sat reclined in a chair with my feet up while utterly motionless the way a proper napping platform does. I would sleep but she doesn't realize that I dream.
My strategy is to live intensively instead of extensively. Well, I have to do both in order to avoid the boredom/agony issue but I like to cram as much writing and/or gaming into an hour or two. After that, I get to be awake for the next 20 hours without the ability to do much. When I saw unable to do "much," please keep in mind that TV watching can be exhausting. A day when I can complete a game of "Madden Football" is rare and exciting. Blog posts are few and far between because I lack sustained energy. The struggle to avoid boredom over a 24 hour day and the constant exhaustion it causes are the yin and yang of my life.
I was bitterly frustrated that an old friend has had no time for me after all. It had seemed as if we had both expended too much effort to give up. As usual, I am judging her too harshly. There was a time when I believed she could do no wrong. As long ago as that time was, I find myself clinging to fragments of that belief. Of course she'll have time for me. What sort of person works full time, cares for four children and doesn't have blocks of time to set aside for someone she hasn't seen in 20 years? If you had your sarcasm meter running, you would realize that no one is like that. I started to use words like dedicated but I realized that she is dedicated to the people who are part of her life today.
It's different for me. I find myself awake at 4 AM contacting people on a whim while neglecting others. The list of people whom I neglect on a high energy day like this is astounding. The frustrating thing is that I cannot learn from this and do differently. The vicious cycle of pain and boredom has reduced me to someone I recognize as a mere caricature of me. I am needy 24 hours a day and seven days a week.
The urge to write has been all but drained from me. This is where I draw the line. Writing is a big part of who I am. If I lose the use of my hands somehow, I'll invest in voice recognition software but I refuse to stop writing. My problem isn't so much physical at the moment. I have not had the urge to write in some time. It's something I want to do well and so my current lack of confidence isn't helping. The biggest obstacle right now may be the PC. After I get the energy to come upstairs and write something, I have to deal with memory issues by rebooting and making sure I don't leave anything running unless I'm using it at that specific moment. It feels as if I'm running out of energy just as I'm starting to write.
Then there is the mighty distraction machine known as Facebook. There are so many things I can do there to alleviate boredom during the couple of hours when I have energy. Very few of those nearly effortless things add value to the world but I am genuinely curious about the answers to the mysteries in certain games. I want to know what happened my miner character's equally fictional father but I can't wait eight hours to have "the workers" make the cheese to unlock the recipe to make the yogurt the game asked for months ago in real time. I've actually forgotten why I need to employ the jeweler much less why his workers insist upon eating yogurt before they will finish the job. I think I have about a thousand eggs sitting around but they are chicken eggs not the turkey eggs I need in order to unlock the yogurt recipe. I haven't written anything much less anything to further my fiction career but the cramps in my arms are becoming increasingly painful. Eep! I just lost my wall that I keep up to prevent there mere background pain from making me go cringe and attempt to sleep.
There's another source of pain that I try to keep locked away but it has worked its way out through the secret doors and hidden passages of my heart. Well, let's say that there are two secret sources but the grief, anger, hurt and doubt that thinking about my parents brings out is nothing new anymore. Perhaps my inability to keep thoughts of my parents locked away comes from this second source. There are times - often mere moments in a day - when I am horribly lonely. I think of moments in the past when I made real connections with people which provided joy or solace. It's awful how far in the past most of these moments actually are but that's not the real problem. People who shared such moments with me either repudiated me soon after or have made it clear that there is no path leading back to what is purely the past for them.
It's tough to remember that my duty as a friend is to accept their wishes no matter how silly I find them. That's often when the little kid in me leaks out and whines. "Are you so ashamed of the time spent with me that it's off limits talk?" We're not talking anything sordid here. I had conversations with people and have kept the content of those conversations to myself because that's what friends do. I would give so much to have more of those conversations but the unwillingness of others is far from the only barrier. If you've never met me, I don't think I could offer an adequate description of what it's like trying to have a conversation with me. Calling what I do when I get flustered stuttering is like calling a top of the line Porsche a car. It is factually accurate but fails to cover the scope of the thing utterly.
There was one time a few years ago when I read a book about meditation and spent some time doing more than my usual "slow down my brain so I can sleep" routine. I decided that the time had come to say goodbye to someone I hadn't seen in 20 years or so. At the time, I believed that everything would be okay if I could just thank her for being my hero when I was 14. She was a big reason why I managed ro hang on despite all the abuse at one of the most vulnerable times in my entire life. She was my friend so I had to be of some value no matter what my parents hinted at or said. Well, my point isn't to put her on some pedestal again. Even then, I was aware that she had flaws. She simply treated me like a human being unlike most people despite all the weirdness that generated from me.
In any case, I was writing about meditation. I wanted to tell her goodbye so I did what any little kid would do and built a scene in my mind. In that, I told her the things that I needed to say and I felt much better for quite some time. Since I was a young kid, there have been many times when I have needed to talk with a specific person but that person might as well have been on the moon. I could not simply call up a friend or, especially, an adult mentor just because my life was in crisis and I needed that person's input. I was told to make the best of it or whatever. At some point, I learned to have conversations entirely in my own head involving that person or what I knew of him or her.
Much of the time, the other person would help me work through the flaws in some plan or other that I had going. As I got older, the conversation involved talking me through the anguish of wanting to please my parents more than anything only to fail over and over. The mere fact that my father called me a such and such (for many different values of such and such) did not make me a such and such. The hours spent establishing the case against me as a such and such did not mean he was right because there was a flaw in the argument somewhere. The fact that there was a valid point or two in all of it did not extend beyond the value of those specific points. I did not have to pass judgment on myself for being a such and such just because he said so.
In recent days, the other person has been Melissa while she's on a long work day. The self esteem that had to fall back on that friend from high school (If she wants to be my friend, then I must be okay.) has long since been replaced by my faith in Melissa. (Melissa loves me so I know I'm okay. The rest of the New York family loves me too so I must be worthy of being in a family.) I used to worry that I was crazy to do this but my favorite mental health professional told me there's nothing wrong with it personally then repeated it more than a few times in my head.
With so many barriers to the human contact I need, I should build the scene in my head. It would be one of those Fall days I used to love so much with the bright colors all over the trees. During the day, it would be comfortable shorts weather for me so everyone else would be wearing light jackets and jeans. Any warmer and bugs would work their way into the scene. We could throw a football around since it's my scene and I want to remember what it felt like having energy to burn in what my parents would call wasting time. If I bothered having a name for it, I'd call it an investment in enjoying my youth while it remained.
As afternoon became evening, we would get at least one cheerful campfire going. We'd all continue to enjoy each other's company through a meal that would change depending on my mood but chili sounds like a great idea as the temperature drops. Some people would disappear into tents earlier than others depending on how long they had been married. The rest of us (in this fantasy) stay out by the fire and talk about important things like love and loss, joy and heartbreak, triumph and tragedy and maybe even friends who were absent this time. Even while discussing the past, we'd have hope for the future. I don't want to believe that all the adventure of my life is in the past.
The scenery and conversation would change with the people involved. I could see myself in a room filled with smoke that, miraculously, doesn't cause cancer and a list of other bad things long enough to make Chiari ashamed of itself. We would discuss the important ideas of the day, how they relate to the past and how they might influence the future. We would relate to it all through visual arts, music and fiction.
It hurts knowing that I will never know people like that again. It hurts to feel cast out by the person whose opinion was once my source of personal validation. It hurts a lot less while I reach out and touch my memories. If I remember to touch these memories as they were, I might be better at handling those few minutes of agonizing anguish I get each day.
Maddie the cat is doing laps around the house stopping each time by to remind me that I would have less time to be lonely if I simply did what she asked and sat reclined in a chair with my feet up while utterly motionless the way a proper napping platform does. I would sleep but she doesn't realize that I dream.
Saturday, January 3, 2015
The Start of a Brutal Day
Yesterday, I slept for something like 14 hours while Melissa was at work. How did I manage that? I had been up for the previous three days trying to fit in with the visit from the New York family. I was very happy to see them though it might have been tough to see through the moaning and groaning. I like being around other people especially my dear family. It's just difficult to show since being around other people causes me terrible pain in and of itself.
Melissa and I watched "X-Men Origins: Wolverine" again. He's one of my all-time top two X-Men with the other being Cyclops. Unfortunately, the movie is a bit of a downer. Logan's girlfriend is murdered and he loses all memory of her. I guess it could be worse. Losing all memory of someone is terrible but you don't have to mourn the good times you've lost. I'm in the process of mourning the loss of an old friend who couldn't fit me into her life after all. No matter how little space I tried to take, it was too much. The good news is that I still have my memories of good times when my life wasn't this nice.
Part of me wants to laugh while the rest of me wants to scream in pain. I'm in agony every day and today seems to be a fresh hell but these are still the good days. I love Melissa and my beloved feels the same way about me. Unfortunately, she gets to work the closing shift tonight so it's just me and my memories. It's worse than that, of course. I've been in more pain than I can truly process since I got up last night. Maybe I slept on my neck wrong which would be one of those obnoxious ironies.
It's almost 10 AM and the sun is nowhere in sight. Weather like this on top of pain that reminds me of times I've been in the hospital is jolly good fun. I want the pain to stop so badly that it's difficult to think of anything else. Trying to focus on helping others is harder than it used to be. I was asked to help a friend of the family and so I did. For Chiarians, there is only one effective treatment which is surgery and that is not a cure. There was one fellow who was held up as the poster child for making a full recovery post Chiari surgery but he died suddenly a few years ago. Apparently, being in great shape and doing things like lifting your own weight over your head against doctor's orders is no perfect defense. I am always careful to note that I am no doctor so you should do what the doctor says if he or she disagrees with me. At most, get a second opinion from a second doctor.
Someone actually keeps track of certain vital statistics and we may have lost as many as 28 Chiarians from the various Facebook communities. Suicide was prominent among those numbers which scares the hell out of me. I was once the sort who took suicide in stride as an option in every day life but I've reformed. Once upon a time, I believed that my life influenced so few people that suicide was a tolerable option. The truth is that I'm pretty connected in this world. Some people actually find inspiration in my life just as I find it in their lives.
Last year, there was a moment when I was sure that I'd never make it alive. Robin Williams had killed himself. I suppose my angle on Mr. Williams is different from most. After a childhood of secrets that hurt everyone yet managed to stay "in the family," I tried to avoid looking at others as invulnerable. When someone acted as manic as Mr. Williams did, I found myself looking for the other extreme. My first reaction was that, if he couldn't make it with all of his resources, I was doomed. At one point, I actually asked an old friend who reminded me of Mr. Williams to keep going. He had been there for me in some of the very darkest of dark days and he stayed strong.
Since I didn't want to be doomed, I thought about Williams and his resources. His money was useless as a defense. All money can do is purchase goods and services. I thought about it and decided that personal relationships are so much more important. If you spend every moment of every day working and making money, there's a limit to the sort of relationships you can develop. I'm not being critical of his friends and loved ones here. I don't know them and I'm certain that there were plenty of exceptions to the rule I stated though it is a mere guess. More importantly, depression pushes you away from the things that help make you strong. You lose the joy in life as activities lose their meaning, you doubt everything about yourself and you believe all the wrong things about yourself.
I started to think about being in trouble personally. There is no cure for Chiari and I was losing ground bit by bit. One of the most important parts of my identity is that I am a writer. That has been in serious danger on a purely physical level. My writing routine involved getting up from the recliner or out of bed, drinking coffee, doing a little warming up and then writing until I was too sick to continue. It was so much more difficult when you can't sleep, you get up to drink your coffee and you don't even make it through the warmups before the coffee provides just enough energy to get to sleep.
The Chiari community and I had a major falling out as my frustration peaked. The conformity of it all was frustrating. "Is Symptom A a Chiari symptom?" The answer knowing little of the other circumstances is probably but check with your doctor. I didn't mind answering that one so much but then there was the question of why your local neurosurgeon isn't as good as the expert who performed my second surgery. Eventually, new patients who should have been asking to have their hands held turned against the experts. There was no solace for me in the Chiari community.
28 Chiarians lost in a year. If that's a reliable statistic, that's horrible. Once treated with surgery, Chiari is not fatal in and of itself. Of course, certain Chiari symptoms can be fatal. If you know anything about the brain's anatomy, you know that the brainstem is not the place where you want something to go wrong. It controls your autonomic functions like your heartbeat and, usually for Chiarians, breathing is a problem. You can have the usual obstructive sleep apnea from some part of the throat not working quite right or you can acquire central sleep apnea which is its very own symptom. Years of narcotic pain medication can harm your ability to breathe in your sleep.
Unfortunately, suicide remains a major cause of death. I'm trying to feel defiant right now but I hurt so badly. I would like to be wrong about today. I wish I were wrong but this day has shown me every sign of being a day long pain crisis. This sucks but I will feel some degree of better later. I will keep fighting because that's who I am.
Melissa and I watched "X-Men Origins: Wolverine" again. He's one of my all-time top two X-Men with the other being Cyclops. Unfortunately, the movie is a bit of a downer. Logan's girlfriend is murdered and he loses all memory of her. I guess it could be worse. Losing all memory of someone is terrible but you don't have to mourn the good times you've lost. I'm in the process of mourning the loss of an old friend who couldn't fit me into her life after all. No matter how little space I tried to take, it was too much. The good news is that I still have my memories of good times when my life wasn't this nice.
Part of me wants to laugh while the rest of me wants to scream in pain. I'm in agony every day and today seems to be a fresh hell but these are still the good days. I love Melissa and my beloved feels the same way about me. Unfortunately, she gets to work the closing shift tonight so it's just me and my memories. It's worse than that, of course. I've been in more pain than I can truly process since I got up last night. Maybe I slept on my neck wrong which would be one of those obnoxious ironies.
It's almost 10 AM and the sun is nowhere in sight. Weather like this on top of pain that reminds me of times I've been in the hospital is jolly good fun. I want the pain to stop so badly that it's difficult to think of anything else. Trying to focus on helping others is harder than it used to be. I was asked to help a friend of the family and so I did. For Chiarians, there is only one effective treatment which is surgery and that is not a cure. There was one fellow who was held up as the poster child for making a full recovery post Chiari surgery but he died suddenly a few years ago. Apparently, being in great shape and doing things like lifting your own weight over your head against doctor's orders is no perfect defense. I am always careful to note that I am no doctor so you should do what the doctor says if he or she disagrees with me. At most, get a second opinion from a second doctor.
Someone actually keeps track of certain vital statistics and we may have lost as many as 28 Chiarians from the various Facebook communities. Suicide was prominent among those numbers which scares the hell out of me. I was once the sort who took suicide in stride as an option in every day life but I've reformed. Once upon a time, I believed that my life influenced so few people that suicide was a tolerable option. The truth is that I'm pretty connected in this world. Some people actually find inspiration in my life just as I find it in their lives.
Last year, there was a moment when I was sure that I'd never make it alive. Robin Williams had killed himself. I suppose my angle on Mr. Williams is different from most. After a childhood of secrets that hurt everyone yet managed to stay "in the family," I tried to avoid looking at others as invulnerable. When someone acted as manic as Mr. Williams did, I found myself looking for the other extreme. My first reaction was that, if he couldn't make it with all of his resources, I was doomed. At one point, I actually asked an old friend who reminded me of Mr. Williams to keep going. He had been there for me in some of the very darkest of dark days and he stayed strong.
Since I didn't want to be doomed, I thought about Williams and his resources. His money was useless as a defense. All money can do is purchase goods and services. I thought about it and decided that personal relationships are so much more important. If you spend every moment of every day working and making money, there's a limit to the sort of relationships you can develop. I'm not being critical of his friends and loved ones here. I don't know them and I'm certain that there were plenty of exceptions to the rule I stated though it is a mere guess. More importantly, depression pushes you away from the things that help make you strong. You lose the joy in life as activities lose their meaning, you doubt everything about yourself and you believe all the wrong things about yourself.
I started to think about being in trouble personally. There is no cure for Chiari and I was losing ground bit by bit. One of the most important parts of my identity is that I am a writer. That has been in serious danger on a purely physical level. My writing routine involved getting up from the recliner or out of bed, drinking coffee, doing a little warming up and then writing until I was too sick to continue. It was so much more difficult when you can't sleep, you get up to drink your coffee and you don't even make it through the warmups before the coffee provides just enough energy to get to sleep.
The Chiari community and I had a major falling out as my frustration peaked. The conformity of it all was frustrating. "Is Symptom A a Chiari symptom?" The answer knowing little of the other circumstances is probably but check with your doctor. I didn't mind answering that one so much but then there was the question of why your local neurosurgeon isn't as good as the expert who performed my second surgery. Eventually, new patients who should have been asking to have their hands held turned against the experts. There was no solace for me in the Chiari community.
28 Chiarians lost in a year. If that's a reliable statistic, that's horrible. Once treated with surgery, Chiari is not fatal in and of itself. Of course, certain Chiari symptoms can be fatal. If you know anything about the brain's anatomy, you know that the brainstem is not the place where you want something to go wrong. It controls your autonomic functions like your heartbeat and, usually for Chiarians, breathing is a problem. You can have the usual obstructive sleep apnea from some part of the throat not working quite right or you can acquire central sleep apnea which is its very own symptom. Years of narcotic pain medication can harm your ability to breathe in your sleep.
Unfortunately, suicide remains a major cause of death. I'm trying to feel defiant right now but I hurt so badly. I would like to be wrong about today. I wish I were wrong but this day has shown me every sign of being a day long pain crisis. This sucks but I will feel some degree of better later. I will keep fighting because that's who I am.
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