Thursday, February 12, 2009

Crispin Glover on Letterman - very funny!

Chronic Pain

I have occasion to think about what it means to live with pain. I really think that if someone told me that I was going to die soon that I would be okay with that. I don't want to die, but I would be okay with it. I'm not afraid. I would regret things I haven't done or completed, but I'm okay with it. Some who have had that cancer diagnosis say you do not know until you hear those words, but I truly believe that for me, knowing that my family was hurting would be the worst, followed by any treatment. A death sentence is not my big fear.

My big fear is when they say, "hey, there is no cure. Sorry you hurt. Get used to it." And this is what has happened. I have always expected a cure. I didn't really admit it to myself and certainly never to others, but I expected it. I never even knew how much I expected it until I said to the doctor, "you mean I'm screwed" and he just looked at me. No laugh, no disagreement, merely silence.

I am staring at the lab reports trying to understand them. I don't understand them. The lab report says that any reading over 120 for the EBV Ab VCA, IgG is positive. Mine is 2389. Somewhat higher. If I understood the doctor correctly this means that I have chronic Epstein Barr. Epstein Barr does not go away, though it can go up and down. This cannot be eliminated from your system. This has been linked with the chronic pain and fatigue that I have been dealing with for 17 years. Also I am rating positive for a chronic Chlamydia pneumoniae (this is not the STD, but a very tricky bacteria). This apparently changes form and hides within the body, attacking nerves, and is linked to....chronic pain and fatigue syndromes, asthma and arthritis, among other things.

As I struggle to discern truth from fiction (the web is a tricky place filled with lies and falsehood along with great information)I am struggling to regain my fighting spirit. I have fought for years against disability, against depression, against giving in to this! With his words, my fight went on vacation and didn't take me along.

I don't know what other people's greatest fears are, but I have learned one of my own. To know that the future stretches out ahead of me and that years of pain and fatigue await me requires courage that I do not have in me. I am afraid. But as George R. R. Martin says in "A Game of Thrones":

"Can a man still be brave if he's afraid?"
"That is the only time a man can be brave"

I may not have enough courage to face this on my own, but what I do have is the surety that I don't have to. At this moment I cast this on my Savior, for he cares for me. He cares for me and that is beyond expression. That gives me courage.

Penn Says