The struggle to survive chronic pain can be a physical struggle, of course. Those of us who have been fighting long enough know that it's also a mental one. Some days, the only thing that gets me out of bed is the knowledge that my pills are downstairs. (If I'm sleeping in my chair, make that "the full bathrooms are upstairs.") I'll hide as long as I can only forcing myself to get up once I feel that odd burning sensation that tells me my meds are long overdue. While I start to cope with the new situation, something else hits me. This time, I learned that one of my list friends is dying.
I suppose that I'm adjusting to the loss (or partial loss) of my latest supporter well enough. At times, I feel the argument going on in my head. It hurts. It's supposed to hurt. No one is supposed to go through this! Oh, stop feeling sorry for yourself. Think of how it must be for your "list friend," Doug.
In response to one of Jodie's questions, Doug revealed that he is suffering from two terminal illnesses. He made a little joke out of it, of course. Jodie had asked how we deal with our problems and how they are resolved. Doug noted that he has no choice but to not "deal with" his problems the way Jodie meant. The only resolution for him is death. He sounded so brave and so in control of himself that I felt sicker inside. How does he do it?
(Those of you who know me very well know that I used to use the name "Doug" as an alias and/or alter ego. Some of you suspicious bastards might even suspect that I continue the practice but you'd be wrong. The name, Doug, ended up in a series of three novels in which the name got more and more fictional with each draft. Once I had a fictional Doug in novels I intend to be published, I stopped using the alias. No sense confusing the issue at all. There is a real Doug out there. In fact, there used to be two. Denver Doug passed away some time ago and he's been missed terribly in the journalling community.)
That's when I had to smile a bit and remember my own feelings and how I portray them sometimes. The easiest thing to do is to act brave. I wait until I've conquered a problem to explain how much it hurt me most of the time. That's why you should know how ambivalent I feel about terminal illnesses. Part of me wishes that my prognosis were terminal. It would make it easier to accept the bad days as something to treasure. Another part of me believes that I have an as yet undiagnosed terminal illness secondary to the known chronic ones.
The rest of me learned to fear death a bit during those frantic first days of symptoms that made no sense and cascaded out of control. I had no diagnosis and no clue what was wrong. Like most people, I had never heard of an Arnold Chiari Malformation much less that there were two (or three) types. People have died from ACM and that includes a young girl named Brianna. Hopefully, I spelled her name right. Traffic on the "rebel" Chiari list is light these days so I have not seen her mentioned recently. If you do not get the surgery from an expert, your symptoms can progress to the point where you stop breathing and don't start again. I believe that's what happened to the little girl.
The fear of death came back to me when I realized that my symptoms were no longer improving or stable in 2001-2002. I thought I was terminal and possibly in Stage III. Terminal cases generally run in three stages. First, there's the onset of symptoms and the pre-diagnosis panic. Once treatment begins, you enter Stage II which is also called the long stage. You learn to cope with the symptoms and things even seem to improve for some time. In fact, the first two stages are very much like a chronic illness. Unfortunately, Stage III is inevitable in terminal cases. Treatment starts to fail for some reason or another and bad days outnumber good/average days by a lot. All the coping mechanisms you built up fail one by one and then the end tends to come quickly. Stage II can last decades these days and doctors can be wrong about the terminal prognosis. A lot of terminal patients live a very long time. Of course, Doug is an actual doctor so I will give his announcement the benefit of the doubt.
Yes, I have studied this subject a bit. That's how a nerd arms himself. I learned a lot when I was convinced that only brain cancer could produce the bizarre symptoms of an ACM. That's when I learned that I had a "simple condition" that could be treated with a surgery "of some import." My expected recovery time was to be six weeks to six months post-op before I could expect my full recovery. Of course, this was all bullshit. My parents were told behind the scenes that I could expect full recovery in two years at most. I was only told of this after the two years had passed.
My recovery seemed to rest just on the cusp of "good enough" until around October 2001. That's when I started actually using the cane that Melissa had found for me and not just when she reminded me. I was falling all too often and then I was struck by my full symptoms again plus some new ones that winter. By December, I realized that I was in a free fall situation and that I needed a new doctor to discover what was wrong with me or that I could die.
Whenever I start to believe that I'm getting close to death, a long life even with dreadful symptoms starts to look better. When that long life prospect brings me near despair, I think a lot about what it might be like to have a literal "deadline." Most of the time, I recognize that both situations suck to such a high degree of suckitude that there's little to recommend from either. My coping strategies are designed to help me deal with long term chronic pain and not terminal illness.
They say the grass is always greener on the other side of the fence so I do slip up. There are days when I'm sick with envy because God decided to take someone else and not me. I see the stories of how "bravely" those others died while also struggling to stay alive until the very end. I see the sad faces of the loved ones and realize this is where I draw the line. Melissa will never have an extra day of grief because I gave up. If I could change places with the dying, I would refuse because it would hurt her. It would hurt others as well but she is the symbol of all that's right and good in this world.
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