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.
Wednesday, May 27, 2015
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.
Thursday, December 25, 2014
To Be Calm
There's a lot that I would give to be calm for a while. I've been agitated for so long that I have trouble figuring out what the trouble might be. My recent attempts to fight the good fight and recover from child abuse aren't helping. Connecting the dots is bound to kick up a lot of dust and make me notice a lot that I was used to ignoring. I'm supposed to be getting better but recovery is slow. It took 30+ years to get this messed up so my logical side knows that I won't wake up tomorrow with that Zen goodness. I don't actually understand much about Zen at all but all that calmness seems almost overdone. I want to replace this agitation with joy.
I can't get to sleep most of the time because my heart starts racing and I have trouble catching my breath. What have I done wrong now? I must get to sleep or I'll be exhausted for that thing I don't remember and no! That thing I can't remember is a fragment of a very short agitation dream. I doubt that I was asleep long enough to decide whatever it was that I was ruining. Right now, I'm agitated because I want to write something coherent here that will help me and a few others if I'm lucky.
It's not enough to have so many memories of my father telling me to move faster, faster and faster yet. Bathing and getting ready for bed turned into a race at one point because I was dawdling. Hurry, hurry, hurry and then get right to sleep. I suppose it worked some when I was a small child because I just conked out once I reached a certain point of tired. I read somewhere that it is perfectly natural for teenage minds and bodies to become more nocturnal around the high school years. My parents never accounted for that when they scheduled my life to be full from 8 AM to five or six PM. Of course, the article never dealt with the issue of how to get a full day's work in the fields (admittedly a gross exaggeration) out of someone who sleeps half the day away. They never admitted that this was an exaggeration of their own.
My "day" was centered around the giant yard I never wanted so one had to get up early to take advantage of the relative cool from dawn to noon. My alternate plan of working in the evening suffered from the great abundance of mosquitos. My days do still start early through I'm not supposed to count what I do in the mornings as work but that's what it is. I'm writing this as therapy for myself, as a friendly warning to my friends who are parents of young children and as what I'd call psychological first aid for those who suffered similar abuse in their childhoods.
There is an impulse to take down everything I've written and apologize. I try to be careful and refer to what I suffered as psychological abuse or mental abuse because I know I'm trained to think of horrific neglect and constant physical assaults as real child abuse. I was physically bullied by my father but never tortured the way some kids were. As a victim, it is far too easy to let your abuser set the definitions of right and wrong or abuse and proper behavior. They don't give out merit badges for surviving abuse. There is no pension for those who meet the criteria of an abuse survivor. In fact, the illogical but very real incentive structure promotes silence.
I can't get to sleep most of the time because my heart starts racing and I have trouble catching my breath. What have I done wrong now? I must get to sleep or I'll be exhausted for that thing I don't remember and no! That thing I can't remember is a fragment of a very short agitation dream. I doubt that I was asleep long enough to decide whatever it was that I was ruining. Right now, I'm agitated because I want to write something coherent here that will help me and a few others if I'm lucky.
It's not enough to have so many memories of my father telling me to move faster, faster and faster yet. Bathing and getting ready for bed turned into a race at one point because I was dawdling. Hurry, hurry, hurry and then get right to sleep. I suppose it worked some when I was a small child because I just conked out once I reached a certain point of tired. I read somewhere that it is perfectly natural for teenage minds and bodies to become more nocturnal around the high school years. My parents never accounted for that when they scheduled my life to be full from 8 AM to five or six PM. Of course, the article never dealt with the issue of how to get a full day's work in the fields (admittedly a gross exaggeration) out of someone who sleeps half the day away. They never admitted that this was an exaggeration of their own.
My "day" was centered around the giant yard I never wanted so one had to get up early to take advantage of the relative cool from dawn to noon. My alternate plan of working in the evening suffered from the great abundance of mosquitos. My days do still start early through I'm not supposed to count what I do in the mornings as work but that's what it is. I'm writing this as therapy for myself, as a friendly warning to my friends who are parents of young children and as what I'd call psychological first aid for those who suffered similar abuse in their childhoods.
There is an impulse to take down everything I've written and apologize. I try to be careful and refer to what I suffered as psychological abuse or mental abuse because I know I'm trained to think of horrific neglect and constant physical assaults as real child abuse. I was physically bullied by my father but never tortured the way some kids were. As a victim, it is far too easy to let your abuser set the definitions of right and wrong or abuse and proper behavior. They don't give out merit badges for surviving abuse. There is no pension for those who meet the criteria of an abuse survivor. In fact, the illogical but very real incentive structure promotes silence.
* * *
A few days have passed as an actual disaster replaced the feeling of impending disaster that had been stalking me. There were no injuries but Melissa got into a car accident and got the worst of it. That was clear as mud. Melissa is uninjured but Melissa's car got the worst of it. It turns out that I can handle my own feelings of dread better than Melissa's fear of impending doom. When she fell apart, I stopped trying to be tough and sent up the Bat signal so to speak.
One of the biggest genuine heroes of my life showed up with the metaphorical Red Cross blanket. I can't write about the phone conversation that took place but it was a big part of what I needed at the time. The metaphorical Red Cross blanket came in the form of some very appreciated pledges and assurances that my back was covered. I was exhausted and losing my ability to communicate at the time but several distinct promises were made. Even if I dreamed all but one, the one would be vital.
Of course, there was nothing to be done for the pain. It has been raining non-stop and the combination of exhaustion, pain and a couple of drinks including some stiffness did nothing for me. I'm too tired, too agitated and too overwhelmed to sleep. As usual, I have to try and smile about my had habit of expecting to just brush off my shoulders and recover from trauma. It doesn't work that way no matter what your emotionally invulnerable friends think. I have at least one nightmare that I remember from the four or five short sleeping sessions that I have each day.
These aren't nightmares about being naked in front of a crowd of people or forgetting my lines. They are depictions of real events in my life. I did have the combination terror of death/feeling that death would be better than disappointing my parents issue for months at a time. I did fail to realize that vital help was available to me because I did believe myself unworthy of help. I did want to end my own life to spare others the shame of having known me.Do I have to point out how unpleasant it is to relive those feelings or can I just move on?
I could get in my recliner right now but I know that a case of the shakes is waiting. I might sleep for a minute and wake up needing a few minutes to decide that my nightmare did not truly happen again. There was no encounter with my parents where they made me ashamed of the challenges I face every day. Why is it shameful to them that I manage to survive challenges that they never faced? Why was it shameful for me to finish slowly? I had a lot more to deal with than the people with whom I was compared. It's true that school was a long time ago for me now.
Shall we move forward to newer nightmare fodder?
When I was sick enough to fear for my life, I was accused of intending to never work again.
I live like an animal. Are they referring to my tendency to warm myself with cats? Nope.
There's more but I would like to sleep sometime soon.
Today is Christmas Day. When Melissa is done working, we'll open our gifts for each other and enjoy ourselves. If my New York family sent me something, I will be very impressed with their generosity in hard times. If they didn't, I have more than enough to enjoy from previous years. Most importantly, no one will accuse me of living like an animal. I heard that some people take that for granted.
For everyone else who is sick, caring for a loved one or both, I hope you get the chance to have some joy. It's a good idea every day but this day more than most. I'll be happy if I could live my life recovered from trauma someday.
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