Things are getting a bit easier these days.  I found a graphics designer and printer for the Annual Report (last year's) and I've started on this year's, but i'm no longer trying to do it all myself.  It's a relief.  I have a new consultant who is working with me, a woman with years of experience in disability… and we seem to get along.  Her task is to organize the admin within six months.  The financials are done for the year and the audit will be done shortly.  I'm still being harassed by the government official who has been a problem for so long, but i've hired someone just to deal with that paperwork and negotiations.  Sometimes I can actually ask myself, what do I want to do now,

So, I get to hang out more with the kids, what I enjoy… a good movie.  I've learned that they have rummaged through my collection, some I hadn't put out for them.  They found Snake Pit, (a 1948 movie with Olivia de Haviland) and asked to see it.  So we sat and watched Snake Pit.  It will be one of their favorites, as is Three Faces of Eve.  They don't understand a lot of it, but they "get it" about mental illness and they care, look for who is good, who is bad, and we talk about "bababa" in the head.  I think they each understand and have experienced some chaos of the mind.

It's just a surprise to me, a few dvds I brought along not even knowing why… just holding on to a piece of my past. 

Anyway i've just had a really peaceful evening watching Snake Pit with the girls, explaining what they didn't understand, looking to see who remained transfixed, six of the big girls, and Ganga of course.  I had to explain what electroshock was, and why they were doing this to her.  So of course there were memories…. I was a resident at Shephard and Enoch Prat Hospital when they were still doing electroshock.  I stopped it.  I'm not joking.  During my internship I had cared for a man I had known as a teenager — I'd "broken" his horse for him, a horse he couldn't tame.  I wasn't a horse whisperer, but I seemed to have my personal touch.  Years later his wife brought him to the hospital with brain disorder, and he recognized me.  So the doc and I worked as hard as we could, including taking him for a consultation to Dr. Kalinowski, who had brought ECT to the US.

So, when I was a resident, I was assigned on rotation to ECT.  The patients came in terrified and screaming.  The supervising doc was barbaric and I remember his holding my thumb on the button because I didn't want to do it.  They were doing it wrong.  It's similar to the battle over death penalty drugs.  They were giving the drug that paralyzed before the drug that sedated.  So patients were fully awake and in pain but unable to respond because they were paralyzed.  There was also no real resuscitation equipment, just a bag. 

After the session I got on the phone with Dr. Kalinowski's partner, who was available and I talked to him about what was going on.  I got from him the exact protocol of how it was to be done.  I then went directly to the director of the hospital, told him what I'd seen, and gave him the notes from my conversation with Dr. Kalinowski's partner.  The Director closed the program that day.  They decided that if they were to do it they would take patients to the general hospital nearby where the protocol would be followed and breathing equipment was available.

Years later I met a psychiatrist who told me she had gone to that hospital because they didn't do ECT.  I told her the story of why.

looking back, of course it was big.  Looking back from Shishur Sevay in Kolkata I'm impressed.  But to be honest, at the time I felt fear more than anything else.  I was afraid of taking on the Director, the supervisor, who hated me thereafter.  But I was driven by my thumb, by the promise that my thumb would never have to touch that button again.  I did what I had to.  I'm still like that.  People in India think I only make trouble here, or because I'm here.  I make trouble because of the bababa in my own head, the cries I hear, the pain I take in from others and I just do what I can, must, in spite of my fears.

It's good to be able to relax and watch these painful movies with the kids.  They "get it."

Ganga Turns a Page

Ganga turned a page today, literally.  We have been unable to find anything that motivates her enough to struggle to use her hands and arms.  She is quite willing to have us move her fingers to a button she presses to make a light go on, or to turn on the music from a toy.  But her heart isn't in it.   In my head I imagine her whispering to me, "Mom, this is so stupid!"

About a month ago a special ed teacher started. I watched as she tried to get Ganga to hold a spoon to feed a doll.  I thought to myself, "Ganga doesn't care about feeding a doll."  Actually she doesn't care about feeding herself.  She lacks the "I'll do it myself" drive. 

Ganga loves serious Bengali movies and Charlie Chaplin.  She hates Barney.  Last week I took her with me in the car for some errands.  She was fascinated by the vehicles, which I named for her, gharie (car), bus, taxi, lorry (truck).  At a traffic stop a hawker came by carrying balloons and toys with whirling lights, but she paid no attention to him.  She is too serious for toys.  She cries when we put on Barney for the other little ones.  But she has to learn to share too.

This morning I brought her to my office area in her chair, and I showed her a big picture book of India, and she was totally engrossed.  She reached out to touch the pictures.  She tried to stroke Buddha's face!  We went through the whole book, page by page, and then I just left it open in front of her, hoping now to get a few moments at the computer.  Then I saw Ganga struggle and struggle to get her fingers to grasp and turn the page of the book.  On the fourth try the page turned.  It was a beginning.

I know a young woman who competes in wheelchair racing internationally.  She said to me once that her mother made her work at what she wanted, and she is grateful for that.  But I also know her drive, what pushed her, and still pushes her to overcome obstacles.

When Ganga first came to us she could not hold her head up.  We had to support her as you do with a newborn.  Both her arms just hung down, with no tone, no finger grasp.  I used to wonder if she even KNEW that she had arms and hands.  Then one evening we had the barber come to trim hair.  Ganga hated this!  While I tried to hold her still she screamed and flung her arms! I cheered for her!  Ganga found her arms.  Today she found a reason to use them, aside from fighting off barbers.

It all happens in small steps, but the processes are really the same for each of us.  We fight harder against obstacles when we care the most.  Sometimes we find strength we didn't even know we had… like Ganga's arms and hands, and now her reason to use them.

April 2009
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