Notes from an EX-cripple

I understand-and not for the first time-that I have gone about everything the wrong way-or, rather, the least productive way. For two years (and three months or thereabouts) I have felt like both a victim and a cripple. And that hasn't served me at all. That has only made me feel more and more depressed, alone, isolated. I can tell you from experience that these feelings don't help the healing process. In fact, they impede it.

It's funny; when I was diagnosed in late 2004 with CVID, and I was informed that the lack of antibodies was genetic (and therefore incurable), I didn't feel any anger toward my parents. I felt only relief, because at last I knew why I have been rather less than robust my entire life. It didn't matter whose family was "at fault" - nobody knew that CVID even existed. So blame was useless. At least I knew I had been handed a poisoned chalice, as it were.

Two years ago, the matter was entirely different. I ended up with no vestibular mechanism because the doctors in charge of my care were incompetent, uncaring, and refused to listen to me...as it turns out, I was right, but they still ruined my life. There was never an apology-but they can shove their apology. I was angry, frightened, bitter, and very, very depressed.

Depression is now classified as a "mood disorder". I know this because Matt, my consultant, puts all diagnoses on the first page of every letter he writes to my GP. He now has included "mood disorder". I can say that this really wound me up; it seems to me that if someone else's incompetence - indeed, malpractice-destroys one's life, the patient would normally be depressed. You are unable to get out of bed without falling over for 18 months; you are unable to wash yourself without help, to cook for yourself, to wipe your own behind, to walk...all this could have (and should have) been avoided. If this doesn't make you angry, frightened, depressed and bitter-there is definitely something wrong with you!!

I thought of myself as a victim of medical stupidity and malpractice (which is true), as a cripple (which was the case) - and then I decided to go to New York and see how well I fared. If I got sick, if I got knocked over-well, then I got sick, or knocked over. But at least, I forced myself out of my comfort zone and took the risk. I took the risk; that was the important thing.

I didn't see everything (or everyone) I wanted to see; I didn't go everywhere, or do everything, but I didn't sit in the hotel every day, and I was a bit afraid that I would go all that way and be afraid to go anywhere. Even though I had terrible jet lag for the first four days, I still pushed myself to get out and walk around-to walk the mile and a half to Diane's house, to walk to the park...I walked. And with only 50-55% (55% on a good day) of my balance working (thanks to all the exercises I've been doing over the last two years), I didn't fall over. I was wobbly, and I staggered a few times, but I didn't fall over. And I could never have done this journey six months ago-so that proves that the nerves in my legs are starting to take over some of the work of the vestibular system that was completely destroyed.

Too bad that nobody has figured out a way to transplant a chicken's vestibular system-since chickens are the only species with a vestibular system that regenerates!! LOL-I can see myself clucking...

I don't label myself as a cripple anymore. I think that is so damaging to self-confidence and self-esteem. I feel that those labels (crippled, completely disabled, etc) do more harm than good. I know that I might never get any better than I am now-but I think that, with a lot of effort and a lot of time, I will get more back. It takes patience, a ton of hard work, a lot of swearing, dedication-and a strong belief in myself. And that is what I brought back with me from New York. All the museums will wait for me to return.

I went back to the gym on Saturday. Eeek! I worked the upper body-and I saw quite clearly that I need to work really hard, because I've got muscles the size of a sparrow's kneecaps (and about as strong as a few overcooked noodles). Yesterday I was too sore to do much of anything, but today I am back in the gym.
I will be working with a trainer twice a week, and I will be working in the gym on my own an additional two times a week. I get to have my bionic knee within the next four-five weeks, so I need to really push myself.  I cannot afford to fall over and damage anything-and I will have to use crutches for a few weeks, which will be highly amusing, given that I have no balance system as it is.

This will be a real challenge coming up-but I'm still here, because I have met every challenge in my life (and there have been more of those than you can possibly imagine), and I refuse to back down or roll over and give up. I didn't come this far, fight this hard, endure this much, only to quit now.

Ciao for now, I am off to the gym. If nothing else, I will be taller!!