2/25/11 That's going to be a very important date for me.
Here's what happened. I had a perfectly fine morning (meaning the usual nasty pain from my legs and muppet spasms.) I was really, really happy. I was about to plug a guitar in. I've got my little Line 6 thing right here.
Out of the corner of my eye I caught the makeovers on the Today show.
I cheered "Yay! The MS lady is going to get a makeover!"
The woman's son burst into tears, obviously torn by his mother's suffering.
That's the last thing I remember for a bit. I cried, I yelled, I spasmed - I shuffled around the house. Leigh finally got me to lay down and medicated me.
I was absolutely despondent over the pain I was causing to everyone around me. The toll this thing has taken on my wife and kids fills me with a guilt and anger that I can't describe.
And I also saw that this beautiful woman was some years older than me, in the same damn wheelchair, with much more advanced symptoms. I saw a picture of my future. I got very, very angry. On seeing this woman and her family I became immediately suicidal. Thank chance that Leigh was here.
I lay on my hospital bed trying to get over the episode, because that's what it was, and I told my wife "This is obviously the work of an angry and vengeful God."
Moments later both eyes burst out in searing, burning pain and began seeping. I could not open them, and apparently when they were open, I didn't think they were. I told Leigh that my eyes had gone dry, so she scrambled around to find me drops. Then I remembered my list of progressive symptoms. That's right, amazed reader, I just went blind then and there.
This kind of shit happens to me all the time. I swear someone has a voodoo doll.
I remember the docs saying that it might be coming, and I remember that my optic nerve already has damage, and I remember that severe stress is very, very bad for me.
But I was stunned. I was distraught. I was fucking pissed off! My eyes now? Really? Fuck this! There is an evil force lurking deep in me. It came out when the docs tried to intubate me without painkiller, it came out when the wheelchair man scammed me, and it's out now.
I sat, and stewed, and waited for my sight to come back, which it has to about 50%. I told Leighanne to check the box that says "blind" on our taxes. I then powered myself out of bed with anger, got myself dressed in anger, came down thte stairs, did some karate moves, did some air guitaring, tended to my plants, and sat down to write.
I'm pissed, but I'm up and about and I can see. And I have a new philosophy. This place is a trial, it's a gauntlet- set up by a loving, but angry and vengeful god. Maybe someday he'll give us a pat on the back for our spunk, our power to resist the horrible things he does to us here. But I know how to play the part of the pissed off rebel very well, and I'm letting that beast out of the cage to get me through this. I now think that it's our job to love each other, help each other and to party in the face of the horror that comes our way.
The good news is that thanks to a wonderful therapist I am now fully aware of my delusions, foibles, and personality disorders. I now choose to fully embrace them. I like my delusions. If I can walk, and I can see I will power myself with them.
Anyway I feel great, and sorry for dragging this into strange places. I'm also somewhat heavily medicated. :-) Leighanne looks a little freaked out about me walking around the house and stuff. Probably lots more to come. What a morning!
(later)
lol, apparently I have a Doctor's appointment at 1:30. Imagine that.
5:00pm Doc is most unhappy and says I am banned from watching the news. I'm very, very medicated so I'll check back tomorrow...
2/26/11
Possibly the worst exacerbation I have ever experienced continues. Yup, I'm still pretty mad about losing my sight yesterday. Incidentally, I already had the 1:30pm docs appointment to fill out disability forms.
Bottom line: yup, losing sight like that happens. Complete breakdowns like that happen. That's just the way it's going to be.
Anyway, ouch. What a day, evening, morning-- I guess I could curse it by saying "I wonder what'll happen today?"
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