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.
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