Clip 1 - I summarize the Mass. Psychosurgery Task Force Report
Clip 2 - my sister and I talk about memories of mom's mental illness around the time of her surgery & beyond.
Clip 3 - mom's family history and some strange behaviors.
Clip 4 - conversation about psychiatry and society
Clip 5 - my husband Ben makes a special cameo appearance
I was able to get a copy of a Task Force report from 1977. The Task Force was assembled to propose regulations for conducting psychosurgery in the state. There had been some controversy in the early 1970s when Vernon Mark and colleagues received a grant to set up a psychosurgery clinic at Mass General Hospital (Harvard) to investigate violence and brain function. They linked violence with the race riots of the time and their racist rhetoric and proposal to screen and conduct psychosurgery on the brains of "violent" individuals ignited a strong response from advocacy groups and advocates. Vernon Mark and colleagues lost their grant funding but continued to perform psychosurgery on patients with mental illness. It was estimated that at least 30 patients per year received psychosurgery but the number was really incalculable because there were few regulations and surgeons in private practice were also conducting these surgeries. This post deals with this report.
First two pages of the report.
A couple of short videos of me starting to read the document. I talk about the Task Force Chairman, Dr. Alan Stone. I am trying to figure out if he is a "good guy" or a "bad guy." He was a psychiatrist and lawyer / professor at Harvard University.
My notes on the task force report.
In 1977 Massachusetts had a taskforce led by Alan Stone review regulations and practices for psychosurgery in the state.
The task force broke into majority and minority opinions. Their disagreements were so irreconcilable they drafted a majority and minority report. The biggest point of contention was whether there should be an outside doctor appointed to approve psychosurgeries for every case in the state. The minority group vehemently disagreed with this stating there was no precedent in other areas of medical practice and that it would destabilize the doctor / patient relationship.
For the most part the majority group saw psychosurgery as experimental, with little evidence, and they make the recommendations for regulations because that’s what they were asked to do (not because they agree with the use psychosurgery). Their feeling was that there was so little evidence for benefits of psychosurgery in the literature and in practice that it should ALWAYS be deemed investigative / experimental. In doing so, then every hospital conducting psychosurgery would have to follow human subjects review protocols. The regulations proposed by the majority cover the requirements for hospitals doing psychosurgery. Because the majority called it experimental the regulations set forth by the majority say there has to be a two tiered review process before conducting any psychosurgery. The staff qualifications must be reported to the dept of mental health. The patient’s history needs to be submitted to the dept. of mental health. Get baseline behavioral information on the patient (because it is designated as experimental). Informed consent. Basically Alan Stone created an argument that psychosurgery is not just a “procedure” it is experimental and falls under the same requirements / regulations as research studies. The majority proposed regulations included the appointment of a physician to exercise the right make the decision about a psychosurgery.
The minority report has a different tone. They state they agree with many of the conditions in the majority report they feel humane and scientific research can best proceed using the standard guidelines for medical investigation and human studies. They strongly disagreed with the notion of appointing an outside physician to have control over clinical decisions (i.e., psychosurgery) for a patient. They said the decisions about clinical care should remain between the physician and patient. Many of the other regulations were similar with regard to informed consent and hospital regulations. The tone of the minority report seemed to support the use of psychosurgery and leaving control in the hands of the doctors.
Final regulations left me with a few thoughts.
vi.Richard F. Thompson
ii.Shervert Frazier,Jr. M.D.
iii.Bernard Levy, M.D.
iv.David J. Myerson, M.D.
v.Leon N. Shapiro, M.D.
vi.William H. Sweet, M.D.
**2008 article by alan stone brings up the fact that the mass dept of mental health and all the other MDs on the task force rejected having an outside appointed doctor to review the case. This became the standard in other states and the 2008 article provides a compelling argument for protection of patients by having an outside doctor reviewing the process.
I haven't heard back from that Dr. Breggins, the advocate psychiatrist from the 1970s who got the funding for violence & psychosurgery research at Mass General (Mark Vernon).
I haven't heard back yet from my sister about interviewing my aunt. I'll call her this weekend.
I still plan to schedule a conference call with my brother and sister and just sort of recap and also get all of our perspectives on the situation.
I found a Massachusetts report on psychosurgery in the state dated 1975. It is not available on line or at the university library so I have had to order it through the Inter Library Loan service. It will take a few days. I have a feeling a list of hospitals will be in that report.
I found a few more things. A few. They were in a plastic bin back behind all the camping stuff on a shelf in our basement. I know I have more. I don't usually throw artifacts away--maybe that's why my mother sent them to me. It's a crime to throw away the past.
Dad's Obituary. I am trying to imagine who sent that to me. It was from the Standard Times newspaper, February 10, 1994.
I found a preschool "graduation" certificate dated March 1970. That would have been five months before the surgery.I wish I could say I remember that preschool experience. I should have. It was Romper Room on the local television station. I don't.
I also found a diary I kept in 1988. (I did throw / lose all of my earlier diaries--there were a lot over my young adolescence. I started keeping a diary when I was 13.)
1988- I would have been 23. When I read the entries, it seems unlikely that I would have been that old. It was only a year before I moved to San Francisco. The diary has poems in one half of the bound book. If I turn it over and open it (upside down) there are journal entries. The book is full. No blank pages. The poems are painfully terrible. What's worse is I half remember thinking they were brilliant.
Infinitely now I dream of love
In particular, no one I think of
Yet it's real and strong
as though I've known it before
To me it belongs yet
I know it no more
The most recent of romances
I now attribute it to
could it be perchance
this recollection's untrue?
I thumbed through it and read a few entries. There's a lot about my dad receiving a diagnosis of brain cancer.There are lists of child abuse perpetrated by my mother. I almost remember making the lists, trying to understand if I was making it up. I can't write the list because there are some things that are too painful. The strange thing is that I don't remember some of the items. Weaved in and out through all the hardship are my boyfriends. My relationships. Like this:
I think I really need to sort some things out about what's going on.
Firstly, my father has a brain tumor. Most of the time I don't even deal with it at all. It's like its not true or its not happening. Mostly it feels like none of it is real and it's all a sick joke. I've heard all my life from my mother that terrible things were going to happen. They never dead. Death was never real anyway. Why should it be now?
I know I love my father and I didn't think I'd ever feel like that again. That disappeared a long time ago. It just disappeared. Now, all of a sudden here he is again. My dad. All of a sudden I realize how I did love him and how I still do. Then again, he has a brain tumor and if I do finally let go and love him there is a very good chance he'll leave me forever. So I proceed with caution with so much fear. Nothing is forever!
I was thinking today about Peter D. and a solution. Everything is so mixed up together, that solution probably has to do with dad too. At first I saw the whole situation with Peter as existing within a bubble. I'm not trapped inside of it through. I have a choice. I can step inside of it and get caught up in the whole scene but I can never get trapped. I can walk away. I can even look beyond it into my own future or to another place like Boston or at home where it's not so significant at all. Where people aren't even remotely aware of the circumstances. This doesn't have to consume me. Yet, I want it to. I want to not think about Dad. I want to watch Peter D. hurt me. I don't want all of this to be happening. But, i can't control it the way I can control my situation with Peter. I'm trapped inside the bubble with my dad. I can sit and look inside of it with my back turned and see how pretty everything must be somehow if I can escape. Soon I'll have to turn around and see my dad's face and look deep into his eyes. I'll have to see he has a brain tumor and I'll have to really look at the truth. I'll have to know for positively sure that it is there. Then I'll have to look at him again so he knows I know for sure.
It wasn't long after the diary entry that I moved to San Francisco. I loved San Francisco and it was the best decision of my early life. But, I didn't know until I read this old journal what a child I was when I left. Then again as a parent I can see that only a child would have bought a one way ticket with only $300 and two acquaintances on the other end.
But it was beautiful the day I arrived. The light in San Francisco is so beautiful Bright yellow, hopeful. The green hills were dramatic. It was all glorious because it was the end of the abuse.
I don't know if I'll do it here but I will make some video diaries of the journal entries. I am starting to think this whole thing is going to be a performance piece for the stage. Maybe a story retold in letters and projected photographs.
Items from the Plastic Bin I Found Today
I finally got a chance to talk with my sister Terry yesterday. She lives across the country from me so we spoke on the phone. I was in the parking lot at Starbucks and she only had fifteen minutes to talk and I wanted to catch her up on everything as we move forward on the project. So, I tried to record the conversation but found out later that you can't record and talk on the i phone at the same time. That was a bummer because I feel like our conversation would have added so much to the story. But, we will be doing a conference call between my sister, my brother, and myself this week (I hope). As I've said before, the three of us have very different takes on things. In my opinion, that's because of our age and our different relationships to our mother. My sister had been doing some of this research about my mom's surgery back in December. She found out information that I didn't so I talk about that a little in the video. But basically this is the summary of our conversation:
She thinks mom was very disturbed before the surgery and that was why they did it. She did not think the disturbance was caused by postpartum depression / psychosis, but that could have exacerbated it. But she felt that my mother was mentally ill and abusive before the surgery.
She pretty much confirmed that it WAS psychosurgery. When she did her research she found out that one of the doctors at Vernon Mark's clinic at Mass General was on the board or was a visiting doctor (or something) at St. Luke's Hospital in New Bedford where we believe my mother's surgery took place.
My sister also told me that my mother had mailed the records from the surgery to her (this would have been back in early 2000). My sister had been living in this terrible apartment with mold so EVERYTHING had to be thrown out. As a result (and also because none of us knew the significance of these documents) they were thrown away. However, my sister basically said my mother was coming to the same conclusions that we are. She had gotten the records to find out why they did the surgery. She was trying to find a lawyer to sue for malpractice. Damn I wish we had those records!
My sister agreed that we should probably talk to my aunt Brenda because (a) she was around before and after the surgery, (b) she was one of the few people who really enjoyed and loved my mother for who she was, (c) she would just add dimension to this story. My sister didn't necessarily want to be the one to talk about mom with Aunt Brenda so I said I would :( I have only spoken to my Aunt Brenda once in 30 years and that was when my mother was dying and my Aunt called me to admonish me. I think I hung up on her. She tried to facebook friend me last October and I blocked her. So the road to that interview is not necessarily going to be a smooth one. The other piece of it is that the reasons I never kept in touch with my aunt was because of their own family problems. We used to say that her husband, my mother's brother was my mother's evil twin. Her male counter part. He paralleled her abusive behavior but with a more aggressive masculine approach. YIKES! Still, I think it would be worth while for the story and maybe for my own sense of what happened. So, my sister is going to broach my aunt Brenda. She said that she would forward me the email she sends. She'll ask aunt Brenda if she would be willing to help with my project. And, if so can I record it? I have "unblocked" my aunt on facebook. This whole thing with my aunt gives me the feeling that I'm preparing to go on an expedition. It is being belayed down into a deep, dark crevasse. i know the metaphor is cheesy but there is that fear that my line will break and I will be sent free falling into nowhere or worse.
When I went through the box of pictures and I picked this one up, I remembered this day. We were at the beach near our house in Fairhaven, Massachusetts. It was a really hot day and my mother was in the hospital. The reason I know this to be true is not only because the picture depicts my cousins from Georgia sitting there on the stone dolphin with my sister. It's not that. I don't even know where I was while the picture was being taken. Maybe there wasn't room on the fish or maybe I was too scared to play.
I spoke with my mother's older sister Betty once after my mother died. I asked her why my mother was such a liar, why she did the things she did. My aunt Betty didn't want to talk about it. Instead she said "I wouldn't call your mother a liar. I would just say she embroiders the truth." The thing she did say to me that might have meaning is this "When I came to Massachusetts that time when your momma was in the hospital, you were my little baby. You wanted me to hold you every minute."
So maybe I was in my Aunt Betty's arms while the picture was being taken.
i remembered this day because my mother was in the hospital and everyone was serious. I can remember my mother's oldest brother, my uncle Dick being there at the beach with us. He was wearing what he always wore: white pressed pants, a golf shirt, and white shoes. One of his shoes had a two inch sole. He said it was because he was inured in the war. He might have been teasing me. He seemed to delight in my incessant curiosity with it. According to my mother, my uncle Dick picked favorites and I was one of them. He looked like a Southern gentleman, right out of a Tennessee William's play. His black hair was slicked back and he was handsome. He smelled like aftershave and his wrist watch picked up the light. I remember being there with him on the beach and I can't remember my own feelings but I can recall his seriousness. A feigned lightness for our sake. I knew my mother was in the hospital and Uncle Dick and Aunt Earldine had taken the kids down to the beach. It was a hot, still day and even now days like that make me think of death.
An x-ray of an unidentified individual who has undergone stereotactic surgery. Electrodes can be seen from the burr holes in the skull down to where lesions were made in the limbic system structures deep in the brain.
Violence and the Brain by Vernon Mark & Frank Ervin. Dr. Mark was a Harvard pscychosurgeon in Boston in the 1970s. He advocated for screening individuals for violence and performing psychosurgeries and received funding for a Psychosurgery Research Center affiliated with Massachusetts General Hospital in Boston (50 minutes from where we lived when my mother underwent brain surgery).