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.

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.

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.

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."

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.

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.

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.