as small as a world and as large as alone

4:41am June 21, 2014

lichgem:

To have someone you trusted to know better, accuse you of becoming more disabled on purpose just to make them take care of you, to try to coerce you into going back on meds that aren’t helping you… 

Well, look. That person isn’t here to ‘take care of me’ anymore, and wonder of wonders, I’m still just as disabled as I was before. I didn’t magically gain abilities I don’t have just because I don’t have as many people to lean on anymore.

I hate that entire mentality.

My shrink once accused me of… not exactly that.  But he’d decided I had narcolepsy, and wanted me to go on provigil.  I researched provigial and decided the risks outweighed the benefits given I didn’t even know if I had narcolepsy.  So I made a well-considered decision not to take it.

Years later I find a letter from my shrink to my parents (illegal, actually, as I had not signed a release and I was over 18).  And it basically said that I was deliberately giving up on life, and that my entire body was going to fail on me, and that I would lose all my friends, and nobody would want to be around me and I would discover the hard way what happens to people who don’t make an effort to overcome their disability.  He also said that I’d probably become psychotic, among other things.

In fact making that decision was a pivotal moment for me because it was turning point – I made the decision, not my family, not my shrink, just me.  Which gave me the confidence to make more of my own medical decisions.  Which made my life much better.  My health did eventually fall apart, but we know now that was adrenal insufficiency and hardly my fault in any way.  But he basically made it sound as if refusing meds meant I was deliberately becoming more disabled and that I’d have to learn that nobody likes to be around someone who doesn’t try to better themselves.

He compared me to Temple Grandin, who was an idol of his even back when he diagnosed me with autism.  He had always wanted me to follow in her footsteps.  He said she worked hard to overcome her autism and then use it as a gift to the rest of the world by helping with research and understanding into autism in general.  He said if I didn’t do anything like that, then I was wasting my life and my talents.  But no pressure or anything, just be the next Temple Grandin.  o_O

(When I was very first diagnosed, in fact before I was even officially diagnosed, he told me “You remind me of a woman I know who thinks in pictures, and she designed all the cattle handling facilities in the country by mapping them in her head.”  It took me years to realize who he was talking about, because I couldn’t do anything of the sort and I couldn’t figure out how this description had anything to do with me, other than not thinking in words.)

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