Sep 01, 2008
Today was an interesting day. But what day of my life isn't? I went with my friend to see the Mutter Museum in Philadelphia. Its a medical museum and some of what is in there is fairly horrific. But I saw it for a different reason. In realizing that's how medicine still sees me. As a "case". And there were a lot of "cases" in there that had active lives. Such as Anne Sullivan who was deaf and blind and could not speak but was the first user of braille and actually taught Helen Keller. And F.D.R. who was our first president with a disability. And much disturbing stuff such as a girl in a "spine straightening device" that was used to "correct her disability" and considered medical science at the time but must have felt like torture. But every "specimen" there were was a life. What were their lives like? As people with disabilities. Well I'll tell you about my day as such a person. I knew it was going to be a day that was difficult so I made sure to compound the dosages until right before the trip. I started off having myoclonic spasms, hypervententilation from my breathing muscles involuntarily contracting and going in and out of a dissociative state. When my mother was driving my friend and I to the station, I saw the Empire State building and could feel (even though I've never been involuntarily medicated) a needle of Haldol go through my arm and it was painful. That and the dissociative state would definitely be psychotic (one is a tactical hallucination) but as my psychiatrist is stating since the psychosis and dissociation only emerges during severe motor spasms and I'm otherwise mentally recovered from the glycine, its what they've long feared but yet to name: tardive psychosis. So I was as bad as any of those "cases" when I entered the train with my friend's help. And with his help and the conductor's assistance they had someone give up a seat. And I was sitting next to a woman who was a wheelchair user. She asked me "are you okay?". I said I had tardive dyskinesia but I really wanted to say "in a minute..wait.". I took the rhodiola which in boosting the dopamine levels in my brain temporarily put a halt to the tardive conditions. Including the tardive psychosis (schizophrenia would be worsened by a medication that brought up dopamine levels). And the glycine which I take as an antipsychotic. And one of the muscle relexants. And I fell asleep and had disturbing dissociative dreams and myoclonic spasms as always. What else is new lol? And I woke up and was myself again. My friend had judiciously disclosed the fact that he had Tourrette's Syndrome as to not make me feel uncomfortable when the woman was concerned. And with my body and mind back to "normal" I politely introduced myself and gave my card as board president of a non profit. So we were 3 people with disabilities, all of whom could have been case studies at the museum. But I had e-mailed the museum about incorporating ideas about people with disabilities a while back and gotten a response from the chairperson. I wasn't a "case" to them. And to my psychiatrist whom when I first met told me about "the worst case of tardive dystonia he had ever witnessed at a psychiatric hospital" I wasn't a "case" either anymore. Now we were working together on advocating for a new class of antipsychotics (the glutamate antagonists) and identifying the reality of the current treatment (giving information to a researcher on tardive psychosis) and its limitations and long term side effects. But something else was missing during the day "stigma" (I made sure I was treated like an equal) "suffering" (actually compared to what people had gone through in the museum exhibits what I experienced was a picnic). Because of the recovery of the glycine I had refocused my energy from the "horror show" I was living and hell yeah "I was cured alright" lol. Because out of all the negative things that happenned I was empowered. I get out to the outside world which hadn't happenned in a while, saw a way cool museum as an "insider" and got to network with other people with disabilities. And my psychiatrist is returning tomorrow from vacation tomorrow and rather than a lot of emotive phone calls, he'll hear about the advocacy I've done. And more when I see him this Thursday. Because it isn't over until everyone can experience the mental recovery I've had without developing tardive as I have or diabetes as my friend does (he's on Abilify) and until the tardive conditions can be treated (I saw many homeless people at the train station who weren't just "off medication" but had clear signs of tardive dyskinesia, one reason that drives people away from currently available antipsychotics). So if you are wondering what empowerment is like contact me. I'll help you get there. And if you want to check out the museum try here: http://www.collphyphil.org/mutter.asp and find out how far medical science has come and how far it has to go. And you can be part of the change as a consumer just as I am...