Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Tuesday, August 11, 2009

This made me cry

I don't know if I've ever said this before, don't know why I would have, but when I chose OT and when I was a student I envisioned a very different career for myself. My first love was working with children with developmental disabilities and this is what I intended to do. Then things changed and life intervened and here I am. So I maintain an interest in this area. Which is why reading about Eunice Kennedy Shriver made me curious for the first time about her sister Rosemary, considered the inspiration for the Special Olympics.

I started reading because I was curious what condition she had that led to her lobotomy. What I found horrified me. To fully understand, read this. Then do a google search. It is awful. (Disclaimer: all of this is based on expert's speculation, along with various quotes from Rose Kennedy and the dr. who did the surgery. Given this stuff did come from the internet there's no way to prove it is true or not. Turns out the Kennedy family can evoke a lot of hostility.)

Essentially the situation is this: Rosemary Kennedy was able to read and write eloquently and solve multiplication problems of several digits numbers. Which is more than I can do sometimes (I stink at math). At least one doctor (psychiatrist?) said that her IQ would have had to be around 90 to do what she is known to have done. The point is made that this is not an abnormally low IQ, not an IQ associated with mental retardation, but that in a family full of extremely intelligent and competitive people she would have appeared slow.

Apparently her lobotomy was done at age 23 after she became to have violent mood swings that involved lashing out at others. As the story goes apparently her father arranged to have the surgery done secretly while her mother was across the country and without her mother's knowledge. I read that her mother wrote in her book that she was in agreement but later recanted that after her husband was incapacitated following a stroke. There are also indications that her father then institutionalized her (following the lobotomy she was unable to do any self-care or speak more than her own name) far away to hide her from the rest of the world and her siblings and mother. Her mother is said to have seen her only after her father was unable to control the situation.

Nobody heard much about Rosemary, but her condition came out during the FBI background checks for one of the families' political races. I don't remember who, although it wasn't JFK or Bobby. The family said she was developmentally disabled but someone else indicated the problem was mental illness.

In that time a developmental disability was more socially acceptable than mental illness. Mental illness was not really treatable. Lithium didn't come along until 1973. I don't remember when the first antipsychotics came along, but I do not think it was before 1941 when the lobotomy was done.

The doctor who did the procedure has only consented to one interview about it. He said that the diagnosis was mental illness. I read the point several times that lobotomies were not done for developmental disabilities, and while I don't know if that is true, I do know that if that truly was Rosemary's diagnosis she was the first to have that procedure. She was only the 60th patient to have a lobotomy, which does mean that her father may not have known exactly how damaging the procedure was.

What makes me so sad though is when you read the descriptions of her behavior it sounds very much like bipolar disorder. The age of onset is right, the behaviors are right, and as pointed out in several places, growing up in a high pressure family when you aren't set to be the best at everything is extremely stressful. I read several places about her having some form of depression, possibly "agitated depression". The thing is that "agitated depression" is an old diagnosis. I read about it a long time ago after someone described my untreated bipolar as such. However that person was really just NOT saying what he really thought, which was that I had bipolar. From what I remember reading back then, the former "agitated depression" is today's bipolar II.

I cried because I know how out of control I've been in the past. Thankfully this is an age of medications and psychological treatments. I've never thought quite so clearly about a treatment that ends the illness by taking away everything. I can see myself living 60 years ago and how such a drastic measure might have appealed to those who had to care for me.

I know there are people who feel that the meds for bipolar take away who they are. I've even felt that to some extent at times, although generally I felt it was the illness that took away "me". However, in contrast to what people like Rosemary lived through, I'd go back and take the worst meds I've ever been on all over again. All at once even.

It's so odd how you can know things intellectually but then just reading about a person who experienced those things who gain a whole new perspective. It's why I love the internet.

1 comment:

Anonymous said...

It's unusually sad...what happened to her. I really doubt she had mental problems or was retarded. To do the math she did, she would have had to have an IQ level AT LEAST in the average in intelligence range, if not higher.

It must be hurtful for the Kennedy's for other people to know what happened to Rosemary, but still, covering it up and blaming it on Rosemary, herself could hardly help. If she was sane and of at least average intelligence, I really doubt she willingly agreed to have her brain removed.