Remembering Brother Harry — A Case of Asperger’s
I wanted to re-post this message now that we are starting a new round of articles. The reason is probably obvious — it’s a very personal statement. But also, it was only posted for a few days before we took the blog down to refurbish it. I hope you enjoy this.
The opening sentence of Erich Segal’s novel Love Story asks the question, “What do you say about a girl who died?”
I think of that when I’m going to talk about Harry — my little brother.
I was 4 years old and Harry was 2 years old and it was the Jewish New Year, a sacred time, when we were each holding one of our mother’s hands. This was autumn in Boston, and there were beautiful colored leaves falling from the red maple around the corner and I was excited about hearing my father play the organ at Synagogue. The vibrations of the giant pipe organ made the whole place tremble and I was very proud of my father, that he did that sacred and wonderful thing. My brother was rather loud, but I was quiet and good (although my mother of blessed memory insisted I changed later). I would sit next to my father on the choir bench and the colored lights would come in through the stained glass window. I was walking happy, thinking of this.
My mother hit me with something that burned in my brain and changed my life.
“You are your brother’s keeper, just like in the Bible. God gave some kind of brainpower out to the two of you. I think you got the part that was meant for him. You will always have to take care of him. You have to promise me that. I know I won’t be here forever and I know he isn’t right; I don’t think he’ll ever be right. But you will always be smart and do important things, so you have to promise me by all that is God and all that you believe in, that you will always take care of him.”
Of course I promised her. A four year old has not idea what is going on. I was barely as tall as my mother’s knee — as anybody’s knee — in the great crowds outside the synagogue. I had to promise her.
Many years later, a psychologist whom I respected called this the “deathbed promise syndrome.” No, it doesn’t need a deathbed. It needs words like “always” and “never” and other words that are absolute and complete. He said that people who take things like this seriously usually have pretty screwed up lives, and that I had actually done pretty well. It had sent me into the helping professions and I was not excessively troubled or terminally neurotic.
I had learned the hard way what this kind of promises could do to people. I could tell my patients that these promises were inhuman, and they had every right to release themselves from them.
I remember when he said this, thinking “easy to say; hard to do.”
I actually told my mother how much that very statement had propelled my life. She did not remember telling me that, not at all. Her retort, which I shall also never forget, was “When you have kids, they do not give you a guidebook.” Well, I think she had me in the years when Dr. Spock’s book came out, and people were moving far enough away from their parents that they were unable to give their children hands-on teaching in child care. But she went on about how you just do the best you can and that is that and I must have been an even stranger four year old than she thought, and she knew I was going to have trouble when I was three years old sitting on the front steps reading the New York Times, and that she should have done something about it, but nobody knew what to do.
The life of my brother Harry was a parade of horrible diagnoses and horrible treatments. At first, none of them involved medication and most were pretty stupid. He had a “school block” so the superintendent told my mother to just keep him home from school. We went to a “guidance center” where a classical analyst managed to send my mother from the room crying, because she had “caused” this. I was not allowed to join in treatment, but forced to wait in a large waiting room. I was thinking about being a doctor just then and I think the time I saw my mother, who rarely cried, act that way was probably the time I made up my mind for good. Even a nine year old girl knew you could help mixed up kids like my brother without making mothers cry.
Fast forward to the diagnoses of schizophrenia and bipolar and a ton of medications that put him to sleep, but did little else. One of his psychiatrists actually agreed to talk to me. He said I was a “mother superior” type who seemed to think she could take charge. I thought the psychiatrist, a widely accepted academician at a prestigious ivy-league university, was a blithering idiot who was essentially devoid of interpersonal skills. I mean, what good is knowing about pills and brain chemistry if you are not human?
After the death of my mother, and a brief period during which Harry lived with my husband and me, Harry decided he wanted to try it on his own in a residential facility. We encouraged him to do so, of course. He was 45 years old and had never had to experience life first hand — his mother did everything for him.
But as soon as he was away from the loving care of his family — that was the start of the medication errors and management errors that led to his death. As you can imagine, I was not in very good shape. But I kept working, largely because of Harry’s last words.
“I had to be the world’s worst psychiatric patient so that you could be the world’s greatest psychiatrist.”
I know the doctor and the hospital staff were responsible for his death. But don’t believe everything you hear about suing a hospital and getting a huge settlement. In the eyes of the contingency-fee attorneys, Harry’s life wasn’t worth going to court over. He didn’t leave a wife and children behind, he never had a high paying job and probably never would. People with his “condition” usually didn’t make major contributions to society. So no lawyer thought the award would be big enough to make taking up Harry’s cause worth their while.
Since my pockets weren’t as deep as the hospital’s, I had no hope of financing years of litigation and appeals on my own.
To add insult to injury, the hospital tried to collect Harry’s bill from me (I wasn’t legally liable — if anyone was, it was our father. But Harry was legally competent and financially independent so the hospital was just grasping at straws). A few years later, when I moved to San Diego and went to rent an apartment, I found out that they had put that huge hospital bill on my credit report.
Harry had a lot of diagnoses, I think, but the primary one was Asperger’s Syndrome.
This page explains a little what it is, but the treatment portion is absolutely not up to date. Psychosocial support is nice. But this is a place where the necessary workup and treatment options are complex.
I have treated plenty of Asperger’s syndromes. Most have been misdiagnosed, and none have been treated by people who take the time to look at details which are very important. I believe that amazing treatment results can be obtained by using vitamins and minerals and numerous compounds, once the assessment has been complete. I have never seen as Asperger’s treated completely in any kind of a health system that operates on insurance.
The cornerstone of my Asperger’s treatments is EMPowerPlus, manufactured by TrueHope Nutritional Support.
But one compound is not enough. It takes a lot more to treat an Asperger’s I did not learn these things until after Harry’s death.
There are a lot of take home lessons here.
Parents — watch what you tell children. Religion in a child is a primitive entity, and a single statement can direct a lifetime.
Freud was right when he said that what we are missing as children is what determines our life-work. My parents spent an awful lot of time trying to explain or mitigate or hide Harry. They had no idea that they spent less time with me because they spent more time with him.
There are some phenomena in psychiatry called “transference” and “countertransference.”
“transference” means that every time a patient comes to see a doctor, they bring all the memories and experiences of that doctor into the room with them. This is a big part of why I wear no white coat and try to act kind of “homey.” People have horrible things to say about their doctors, but they usually do not have horrible things to say about their mothers. So I try to look like a benign and lovable middle-aged woman, kind of like a funky mother. It must work, because patients often tell me after a meeting with me that they simply cannot believe how much they have told me.
“Countertransference” is the feelings the doctor brings into the room when they see a patient. I am very good at recognizing Asperger’s and very good at treating it, for this reason. Like all doctors, I talked a lot about this with my supervisors in training. I also talked to them about a mother who told me that I did not know what I was doing unless I could explain it nice and simple, to somebody like her.”
I turned all of the feelings, the best I could, into working harder and knowing more.
I know the shame of growing up in a family where someone has what seems to be an undiagnosable and untreatable condition.
I put all that shame and rage into knowing as much as I can and doing all that I can with what I know.