When I first got diagnosed with dystonia, after all of confusion of "What is going on with my body?" and the realization that this disorder wasn't going to kill me, I got more than a little depressed. I had this strange and wacky ailment but the good news is it won't kill me, or is that the bad news. Luckily it was not long between the gradual onset and the diagnosis. For the early 1990's it was very quick, in fact my dystonia may have still been developing.
I went through the normal thoughts that I was crazy. I remember vividly one car ride where I just said "No, I am insane, there is something physically wrong with me." (which didn't explain why I was talking to myself but anyways . . ) After that I went all out to figure what was wrong, no more guessing if I was nuts.
I will go into my Botox dramas later but by 1994 I became immune to botulinum toxin type A so I escalated another step on the dystonia (Spasmodic Torticollis) treatment chart, which at that time was up to Selective Denervation. I am not sure how often this is done now if at all.
After my first denervation surgery in Montreal I still had some movement and my voice was unchanged but the greatest thing was my pain was somehow eliminated (I don't know how and why and would now recommend DBS over Selective Denervation but that was an option in 1995). Without the constant pain and agony, I could now think clearly for the first time in over 5 years. And as I thought I realized my dystonia wasn't affecting me as much as it was affecting everyone who saw me. So therefore I was affected indirectly, a somewhat of a social outcast. I was a sane person trapped in an insane body. But the view nice! It was truly bizarre seeing how people reacted when meeting me or even seeing me in a store.
After some painful lessons and lonely times I had to accept that I wasn't normal and I would have to change my thinking and behavioral patterns to accomodate. I bought a modest house and got a dog and was all set for a life of bachelorhood. When I finally learned to like myself and be content with that - then she came along.
to be continued. . .
Quote of the day: "The first step to getting the things what you want out of life is this: decide what you want" - Ben Stein
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I can't wait to read your love story. Love stories are the best!!
ReplyDeleteAs i said I got sick when I was 10 - I turned 11 that June. I had a lot of friends but it was very odd to see one of their peers in such a manner. I lost a lot of weight and just didn't feel comfortable. I used this big plastic board to point on to communicate w/ peers. Thank God, technology has improved. I was depressed - I had no way to explain to people what was happening to me, nor did I know what was going on w/ my body. I was very lethargic and had no energy. It wasn't until aftr HS that I started to gain confidence and love myself for who I am. Crap happens to the best of us and sometimes it makes us wiser and we for sure have more empathy for others. My motto is 'It Is What It Is'. I can only try to improve myself and I never get down about Dystonia. I'm so glad I found Twitter and we connected. I agree, as I'm sure I'll read in your next part, that LOVE makes everything 100% better to have another person see you as an equal, is a HUGE plus!
Until your next blog...