On self

A fascinating and insightful piece in the New York Times today on the transformation of the self from “person” to “patient” among the mentally ill community:

http://www.nytimes.com/2013/04/28/magazine/the-problem-with-how-we-treat-bipolar-disorder.html?_r=0

 

As Logan writes, “For many people with mental disorders, the transformation of the self is one of the most disturbing things about being ill. And their despair is heightened when doctors don’t engage with the issue, don’t ask about what parts of the self have vanished and don’t help figure out strategies to deal with that loss.”

True words indeed, and ones that I can relate to all too well. Last year, I began neurological testing to determine if I would be a good candidate for brain surgery to end epileptic seizures that have grown increasingly worse over the course of my life; however, after learning about Geschwind syndrome and reading all of the medical and academic papers that I could find on the subject, I found myself questioning my own identity and what changes might occur to my self if surgery should happen. When I asked my neurologist about this, however, she abruptly dismissed the notion and quickly informed me that she does not believe in the existence of such personality profiles. That’s all well and good for her, but I’m the one being tested and potentially operated on, and all of the research that I’ve read – none of which mentions post-operative patients and whether such traits remain – matches me perfectly.

I just had an appointment this past week, in which we discussed the findings of the week-long inpatient stay I did last year and what other tests are now needed. We also talked about the very real fact that depending on what these tests reveal, I could be returning to New York-Presbyterian for brain surgery in July. Knowing it would be useless to ask her, I’ve been asking myself ever since: I know who I would be going in, but who would I be coming out?

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Nature vs. Nurture

This weekend has been a lost one for academic or social purposes – I’ve spent the bulk of it holed up in my room reading the entirety of Identical Strangers: A Memoir of Twins Separated and Reunited, a memoir co-written by Paula Bernstein and Elyse Schein, twins who were adopted by separate families in the 1960s through Louise Wise Services, a prestigious New York Jewish adoption agency that was secretly conducting sociological studies without knowledge or consent of the adoptees and their families. The focus of Louise Wise’s studies was on the classic “nature vs. nurture” argument and they, like many other individuals and institutions who were sickened by the nature-based eugenics approach of the Holocaust mere decades earlier, chose to believe that nurturing is more effective, arguing that in the correct environment, any individual can thrive, regardless of genetic or biological factors.

This hypothesis was tested in various ways through the placement of children in adoptive families. In at least one series of tests – the one through which the authors of Identical Strangers were placed – identical sets of children were intentionally separated and placed with different families who were never told that their child was, in fact, one of twins or triplets. More sinisterly, however, in countless adoptions through Louise Wise Services – including those of sets – medical information about the birthmother or birthfather was intentionally withheld, downplayed, and even changed when it was specifically asked for, although all mentioned adoptees’ birthmothers had a pronounced history of mental illness.

In the case of Bernstein and Schein – twin daughters of a schizophrenic (or possibly bipolar – at the time, all such diagnoses fell under the same category) birthmother who were separated and adopted independently through Louise Wise – both went through severe bouts of depression during high school and college, including suicidal ideations. Nothing in their given birthfamilies’ histories provided any reason for it though – there was no record of mental illness whatsoever – and neither Paula nor Elyse felt that they had reason nor right to be depressed when they had been given so much opportunity by being adopted.

To this, I can relate only too well. At various points in my life – including in college – I have been terribly depressed without reason and unable to explain it even to myself. When unable to identify the reason for such intense despair in one’s own life, it is impossible to explain it to others demanding a solid, tangible reason. All I could do at the time was watch time go by as assignment deadlines passed, scribbling my thoughts down for myself in the hopes that I might make sense of them later and striking bargains with professors in whose classes I had not turned in a single assignment all semester. At the time, I wanted very much to take a break from school – I knew that I was not learning anything and that it was not a productive time for me to be there – but my parents insisted that I stay, believing that if I dropped out, I would never return. I wasn’t really depressed, I recall my mother saying, I was just complaining because I suddenly had to actually work for my grades. Upon connecting with my birthmother’s family, though, I learned that my birthmother is widely believed to be either schizophrenic or bipolar.

I’m fairly confident that I’ve passed the age that schizophrenia makes its debut, but I’m unsure of this illness’s extended family. There was no history of mental illness given in my nonidentifying heritage information, so even learning that my birthmother has something going on upon first communication with my birthfamily was both relief and burden rolled into one. On the one hand, it felt like confirmation that what I felt and experienced in college – and continue to experience every few years – is likely a very real form of depression and not simply a coincidentally long set of days or weeks upon which I have to work extra-hard to motivate myself to accomplish even the smallest things. On the flip side, knowing that I’m a carrier for mental illnesses such as the ones that I work with every day – and that I grew up with, in the form of a bipolar older brother – makes it all the more difficult to envision my future.

I have epilepsy, which has grown increasingly worse as I’ve gotten older – at this point, I have a fairly high chance of dying in my sleep, since no medication has effectively stopped my seizures – and the tests that I began last year to see if I might be a good candidate for surgery are looking like the answer is a ‘no’. Such knowledge also gives me yet another reason – this one unmentionable – to simply laugh and reply “You tell me!” when my adoptive family inevitably asks me at holiday get-togethers when I’m going to settle down already and produce some offspring for them.

Given the history of such agencies as Louise Wise Services, I wonder what else Family and Children’s Society of Baltimore knew about my birthmother at the time of my adoption. Maybe it’s simply early-onset paranoia, but I find myself wondering what other knowns and unknowns exist that are not being provided to me.

* * *

In one case made famous among the adoptee-rights community, Martin and Phyllis Juman applied to Louise Wise Services for a baby in 1964 and after a lengthy and rigorous interview and evaluation process, adopted a five-month-old infant they named Michael. Described in newspaper articles documenting the case as a “bright child with a passion for baseball”, Michael first began to act strangely during his senior year in high school when he stopped attending class, seemingly without reason. When his parents confronted Michael about his absences, he responded not with a typical adolescent excuse, but with a confession of overwhelming despair that had led him to take walks along the beach and consider walking into the ocean and never returning. Even with the assistance of several psychologists and psychiatrists, his depression only worsened and his behavior became increasingly erratic – fits of paranoia and violence tempered by days of depression-induced sleep. He was hospitalized for long stretches of time while doctors tried different medications without success, and his diagnoses ranged from schizophrenia to bipolar to borderline personality disorder.

At some point, Michael decided that he needed to know the truth about his birthmother. He had learned the trick that inquisitive adoptees from New York know – that the number on their amended birth certificate is the same as the number on their original birth certificate – and he spent hours at New York Public Library poring over birth records until he found a matching number and the corresponding names, his original name and that of his birthmother. He then called all families with that surname listed in the phonebook and asked those who answered if they knew someone by the name of his birthmother who had a son with his original name, until he reached someone who said yes.

Michael took his parents, Martin and Phyllis, with him to meet the only birthfamily he would ever know, the first cousin who had answered the phone. At that meeting, both Michael and Martin asked questions that Michael’s cousin openly answered. When Michael began describing the mental illness he had experienced, his cousin responded that his aunt – Michael’s mother – “had mental problems too” and described visiting his aunt in a psychiatric institution as a young child. He also mentioned that he thought she had had a lobotomy some years before Michael had been born – something that was confirmed when Michael obtained his birthmother’s psychiatric and medical charts from Brooklyn State Hospital.

Six months later in 1994, Michael was found dead in his apartment. Although he had attempted suicide numerous times before and although 10% of schizophrenic patients do successfully commit suicide, it’s believed that Michael’s death was accidental – quite possibly from one of the increasingly intense seizures that he was experiencing along with the other chemical and physical changes happening to his body.

Because of a 1983 New York State law that requires all agencies to provide adopted children and adoptive parents with nonidentifying medical information including “all available information setting forth conditions or diseases believed to be hereditary, any drugs or medication taken during pregnancy by the child’s natural mother and any other information, including any psychological information…which may be a factor influencing the child’s present or future health”, the Jumans finally received all of the records of Michael’s birthmother from Louise Wise in 1996 – eleven years after they were requested by one of Michael’s psychiatrists and two years after Michael died.

The information in those records presented a very different picture of Michael’s birthfamily than the one first presented to the Jumans when they were going through the initial interview and evaluation process. One page that contained the social worker’s summary at the time of Michael’s adoption was just as they remembered:

“I told the J.’s that Michael’s parents were both Jewish. The mother was along in her 30’s, of medium coloring. Her father had died when she was quite young, leaving her with an older mother after her three brothers had left home. She did not have a very good relationship with her mother. She won a scholarship to a well-known college and finished two years of it. The mother had been going out with someone seriously, but he died suddenly of a heart attack and so she could not marry him. She became pregnant quite soon after. She said that if her boyfriend had not died, she would not have become pregnant. This shock led to some emotional difficulty and she later sought professional help for it. The baby’s father was white Jewish, but in character was not one of lasting quality. At this point the J.’s looked very compassionate, and Mr. J. said he could see that the replacement was for her loss. They were both very understanding of this whole history and did not have any questions outside of Mr. J’s comment.”

However, after that, the picture changed completely. Michael’s birthmother did in fact attend college for two years, but her records – that Louise Wise Services had at the time of Michael’s adoption and did not share with the Jumans – indicate that she dropped out after experiencing a gradual mental deterioration and eventual collapse in 1945 “characterized by screaming, swearing, shouting and hallucinations.” She then spent four years at Brooklyn State Hospital where she underwent a prefrontal lobotomy; after leaving for seven years, she returned to spend nine more years there, during which she gave birth to a daughter whose adoption was also handled by Louise Wise. She was released again from Brooklyn State around 1962 and enrolled in an outpatient program called Fountain House. When she reappeared at Louise Wise in 1964, she was five months pregnant with Michael.

In the Louise Wise social worker’s notes from that time, it’s noted that Michael’s mother was “disheveled in appearance, wearing a coat of three-quarter length that was raggedy around the buttonholes and did not fit her properly…Her disheveled hair was held away from her face by a red band, and on one occasion she chewed the end of her hair, which is badly in need of cutting.” In these notes, information is also given about Michael’s birthfather, stating that “She initially met this man at Brooklyn State Hospital, but they were casual acquaintances. [He] attended Fountain House on one or two occasions, and then all of a sudden, according to mother, he telephoned one day and asked her to go with him to his apartment. [She] had difficulty expressing her feelings about this incident, which she does not completely understand.”

And then, the icing on the cake, were the pages of initial interviews with Martin and Phyllis Juman neatly typed, with key phrases underlined: “The background isn’t terribly important, as long as the child is white…They are pretty sure that environment is far more important than heredity.” Without being told, they were agreeing to adopt a child with any amount of mental and emotional issues possible and for which no information would be provided. Theirs would be an ideal home to test nature vs. nurture indeed.

 

“Defendant asserts that it did not have an obligation to disclose the birth mother’s psychiatric history because it was not material. The Agency claims that at the time of the adoption members of the scientific community held differing opinions concerning whether schizophrenia was a disease that could be inherited. They present evidence that it was not until 1968 that ‘the literature suggested that there was sufficient evidence to postulate that there was a genetic component to the etiology of schizophrenia.’”

From the notes of the 1997 New York State Supreme Court case of Juman v. Louise Wise Services

* * *

Given the history of such agencies as Louise Wise Services, I wonder what else Family and Children’s Society of Baltimore knew about my birthmother at the time of my adoption. No mention is made of her mental state, and all information that is given is according to her own reports. Maybe it’s simply early-onset paranoia, but I find myself wondering what other knowns and unknowns exist that are not being provided to me.

This lack of information is what I am feeling most right now. I know my birthmother’s name, I’ve seen photos of her face, and I now have a framed photo of her at the age I was when I was adopted– still, this is not enough. For my entire life, I’ve been envisioning ways that I might be able to reconnect with my birthmother and learn, once and for all, what she is like and where those parts of myself that I never could account for might have come from. Thanks to the powers that be, I do now have some answers – five years after legally beginning my search for my birthmother, I’ve had opportunity to meet many in her family. I can now identify other family members to whom I am genetically connected and with whom I share a common sense of humor, liberalism, and extroversion – none of which are prevalent in my adoptive family.

Still, some days it’s just not enough. I’ve never connected with my birthmother myself and in not doing so, I’m only left with more questions. Not until I reconnect with her myself and can speak with her one-on-one – or hear her refusal for myself – will I be satisfied that she and I have made contact, and I have seen whether nature or nurture triumphs for myself.

Until then, I’ll keep scribbling my thoughts down in the hopes that I might make sense of them later.

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Family ties

Last night, I called my parents to ask them something that I’ve been intending to ask them for a couple weeks now, but with hurricane aftermath and thesis-writing and holiday/most-depressive-season at work, well…it didn’t happen until last night. I called to invite them – if they’re interested – out to lunch with my aunt, grandmother, and whoever else happens to be around on my birthmother’s side while I’m in Maryland next week. My treat.

It was late when I called – 10:15pm or so – and my mom had just gone to bed, so I talked to my dad for a while about his day (same as ever), his health (so-so), and my brother’s move to Tennessee (hectic) before inquiring about my parents’ plans for the week I’d be in town (besides the two Christmases we have scheduled) and then casually asking how he’d feel about doing lunch with my birth-aunt and grandmother. There was a long moment of silence, and then he let out a weighty sigh and said he’d have to talk to my mom and see what she said.

 

Melissa: Ok, but what do you think about it? Would you be interested?

Dad: I don’t know, I’ll have to ask your mother.

Melissa: Ok…ok, but Dad, I’m asking you – you, Dad – is this something that you would be interested in, regardless of whether Mom is or not?

Dad: I don’t know…I never thought about it..that’s your thing.

 

Let me tell you, I was trying really, really hard.

 

Melissa: You mean in…[quickly doing math]…thirty-four years of having adopted children, you never thought about the possibililty of reunion and meeting the birthfamilies? That’s…that’s …c’mon!

Dad: I don’t need to meet them…wait, here’s your mom…

[muffled sounds of Dad waking up Mom from her nice, deep sleep]

 

It shouldn’t matter to me, it really shouldn’t – but it does. It wouldn’t sting so much if this wasn’t a guy who’s so into geneaology and tracking down dead people that he’s related to by blood (not to mention all of the cemetary trips that I’ve been dragged along on while hearing him lament about how hard it is to find some great-great-great-great-grand-cousin thrice removed, while I can’t even contact my birthparents), but the fact that he is such a guy who devotes so much time to this and yet is completely uninterested in meeting someone that his daughter is related to by blood seems to scream out to me all the more that blood relation is all that is important to the guy. With that in mind, I can’t help but wonder, what am I to him? As a kid, I thought that I was his daughter – just like any other daughter – but as I’ve gotten older and seen how much blood relation seems to mean to him, I can’t help but feel that he must have been somewhat disappointed every time he looked at my brother and me. Last night’s conversation confirmed this for me, as he expressed an utter lack of interest in meeting anyone to whom I am related by blood, seeing such relationships as being of interest only to me.

I still have to buy my dad’s Christmas gift and since he’s only into his own geneaology and watching television shows about ghosts, it’ll probably end up being another book on geneology. FML.

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Storytelling at Under Minerva

An excerpt from a storytelling event at the Under Minerva Art Gallery in Park Slope on November 18:

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Pools of purple

Woke up this morning in Baltimore to the sight of my late grandmother’s necklace folded into a pool of purple under the wedding photo of a grandmother I’m just beginning to know. A pool of purple – deep in the middle and shallow at its shorelines – that the only cousin I had growing up said I’d totally rock while we were sifting through Grandma’s treasure-and-trinket-filled oak jewelry box last year, six months after my grandfather followed his life-partner of 74 years out of this world and into the next.

Above close-strung orbs of violet, my other grandmother stands ready in white velvet and heels, watching – excitedly and expectantly – waiting for her cue to walk (small steps!) down the makeshift aisle at the Veterans’ Hall, into her beloved’s arms and their shared life forever. Her father stands behind her, a stern look on his worn face, but love in his eyes, his heart, the planning and money put down for the biggest day of his 24-year-old daughter’s life. A beautiful winter wedding, cleverly tucked in amongst the grading periods of public schools, where her husband-to-be faithfully spends his days.

“When you make $100 a month…”

“Not until I have some cash of my own…”

Strong women – both of my grandmothers – turning down would-be-suitors and sailors for education, independence, men with morals that matched their own and more than once during this visit, it strikes me just how many similar storylines there are running throughout my two families. Children of shop-keepers, lovers of games and card tournaments, quickly planned weddings due to the inevitable start of school, seeking out piglets amongst the livestock at state fairs – all of these can be found among the tell-it-again stories of both families – and as my velvet-clad grandmother stands watch over Grandma’s pool of purple while excitedly waiting for her cue, I smile to myself and think about how well they would have gotten along, if only given the chance.

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And here, my story began

Last Thursday, I went to a friend’s graduation. Being that this is New York City and it’s the middle of summer, one might assume that this was not your typical cap-and-gown, stifled-yawn-accompanied rite of passage – if so, one would be absolutely correct. My friend Hope was graduating from a ten-week-long class in live storytelling – of the sort that has become wildly popular (and rightly so) through The Moth. The show was held in the basement lounge of one of the East Village’s countless bars whose red-lit walls are festooned with garage rock memorabilia and kitsch of eras past, and the spirited bartender kept appropriately strong drinks flowing throughout the night.

The stories flowed freely as well, with Hope and her classmates each taking the mic in turn and easing into a story of their own exploits – funny, embarrassing, joyful, ludicrous, and heartbreaking – and all storytellers were rewarded with praise from the closely gathered audience who hung on to their every word. About two thirds of the way through the line-up, a storyteller was introduced with just as much creativity and gusto as her classmates and like those before her, took the mic with the experienced hand of one who has told many stories in her lifetime. This, however, was one story she had never shared publicly.

“I grew up in a small town in Georgia…” she began. She quickly outlined how small and constrictive her community indeed was, poking fun at the “Agricultural Studies” specialty of the small, regional commuter college which most kids in the area attended and emphasizing in great detail her immense desire and need to escape from this place and flee as far as humanly possible – if not to the other side of the country, than to the far edge of the state to go to the big state university. Her mother, however, shot this idea down and issued an ultimatum – go to the commuter college, or don’t go at all – and she immediately and angrily chose the latter. Instead of agricultural studies, she learned where the best late-night parties were and how little guys really need to know about a girl to get interested and how to act older than you really are. One night when she was 20, she met a sailor looking for a good time and on her way home the morning after, she knew – just knew – that she was pregnant. En route home, she stopped at a Kmart, bought a pregnancy test that she immediately took in the store bathroom, and waited for three endless minutes to find out that…yes, she was. She didn’t want this baby, wanted to get rid of it in any way possible and tried oh-so-hard to find any place that would offer abortions, but this was rural Georgia in 1990, and such places were not to be found. She finished out her pregnancy – miraculously keeping it a secret from her mother (who she lived with) until she was in labor – and upon hearing her daughter’s first cry, managed to slur out “I don’t want to see her”, knowing that it would make it that much harder when social services came the next day to sign the papers for her daughter’s adoption. She never saw her daughter, and the matter was not brought up between her mother and her again.

There, in the basement of one of the countless bars in the East Village, I listened to this story and felt my skin turn cold. I knew that this woman was not my birthmother – there were countless details that didn’t match up – and yet…so much could be my mother’s story. Who knows? Somewhere else that night, my birthmother could be telling a near-identical story to a near-identical crowd in an Atlanta bar whose walls were covered with music memorabilia of bygone eras and Atlanta Football Classic pennants. I gulped down the rest of my gin and tonic and swallowed hard. My feet suddenly could not stay still, and I found myself twisting on my barstool while learning forward – almost to the point of falling off of it -  in anticipation of talking with her one-on-one. Still without contact with my own birthmother, she would do for now.

After all of the storytellers had performed, I congratulated Hope and then edged my way around the bar to where the other storyteller was standing, talking and laughing with a number of her friends and classmates. I edged my way in before subtly tackling her and telling her how and why her story gave me chills, and we quickly shared and compared CliffsNotes versions of our own life stories as a birthmother and an adoptee. She encouraged me to think about participating in live storytelling myself (which I have a hunch I’d be awful at), and we’re keeping in touch.

Characters in any number of plotlines, all of us.

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A new challenge

I just agreed to help a particularly volatile tenant at my work search for his birthfamily. This will either be an incredible success or an epic disaster.

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