Prefers a Few Close Friends

If your parents had enthusiastically supported you in developing who you really wanted to be, and listened to you instead of what they envisioned you should conform to, would you have had a very different life now?

My parents within a year, give or take, of my birth.

So many times in my childhood and teen years, my mother said to me, “I hope someday you have a daughter who treats you the way you treat me.”

I never heard her say it other than when we were alone, but my guess is, she bragged to people that she’d said it. The Seventies were a proud time for mothers to have pissing contests over which of their children would finally make them sneak off in the middle of the night to the Greyhound station. My mother relished complaining about me. I could confirm that by her tone, and the occasional keyword, as she talked toe to toe with the neighbors to either side of us. My mother did not like me. I just didn’t understand why.

I have noticed that where mischaracterizations of children thrive, they thrive strongest within the child’s family itself. An old friend used to say about her parents, “Of course they know how to push my buttons — they’re the people who installed them.”

My adult family members did not seem to understand that buttons had also once been installed in them, and that their dysfunction was similar and harmonious not because it was true, but because they had lived through the same secrets, and experienced the same tyranny themselves. I had a lot of aunts, uncles, and cousins. While I was not marked as the single flawed specimen, it was hard not to notice what satisfaction finding fault with me brought. My parents, my aunts and uncles — they seemed primed to be disappointed in me. And to me, they were everyone.

I was lazy. (I was surprised to overhear this, as my mind was in constant overdrive.) I did not try as hard as other kids. (Only now do I ask myself — at what?) I was “over sensitive”, I “lived in my own world”. Sounded good to me. And it seemed natural, at the time, to believe them.

Mothers in other families also liked to complain about their children. Whenever my mother would find a workmate to become friendly with, I was one of her favorite subjects. She would come home, her lab coat smelling of stale cigarette smoke (the nurses at the Bristol, PA Planned Parenthood were allowed to smoke while seeing patients). She could barely wait to tell me all the ways she had illustrated to some new nurses’ aide that I was her Difficult Child. Born with a genius IQ, my feelings were easily hurt and took up too much of the family’s time. I did not enjoy socializing in big groups of kids (although I did anyway, particularly if I had been told I was not allowed to read in my room until I went out side and Got Some Sunshine).

“Prefers having a few close friends over large groups”, was a comment on one of my early report cards, and I didn’t treasure it just because it was true, but because someone had recognized something accurate about me, and they didn’t frame it as a complaint.

I understood that my role was that of the child given a randomly drawn, but generous, number of Gifts (including my parents themselves), and that I used none of these Gifts gratefully or successfully. I began to feel that this was a flawed portrayal, and full of resentment towards me, but I did not try to correct them, or ask the how I could get some help to be a better person than I was. The core flaw of my being seemed only to be taking stronger hold. It was like “Fred”, the sourdough starter shared and kept alive by every suburban family in the Seventies. And like Fred, it needed to be fed. It was easy enough for my parents would come upon other adults willing to provide this basic food source of vague empathy and agreement.

But when other adults appeared to support and admire me — which happened more often than I think I remember — my parents withdrew or blocked them from my life. An aunt’s friend, a new neighbor; sometimes I could tell I was on the precipice of having an actual ally, but never for long.

My family sat in a conference room at the Children’s Hospital of Philadelphia. My sister had been born when I was halfway through second grade. She was a fat and funny-faced baby, with bulging eyes and a Peanuts’-aesthetic head due to the hydrocephalus that was part of her mylomeningecele syndrome (scoliosis and spina bifida in addition to her hydrocephalus, which would later be treated with a shunt). We had spent a day getting physical and occupational therapy, and I, as usual, had loved helping play with or even help do therapy with the other children there. I had always loved babies and small children. The staff at CHoP always told me how good I was with kids and asked if maybe I wanted to be a PT or an OT someday.

“We are happy with the progress the baby is making,” said a social worker whose first and last name I will remember until the day I die, addressing my parents. “What we wanted to bring up with you today was Amber. We have all watched independently and together, and we are wondering if she is getting the intellectual and emotional support she needs as you learn to care for your new daughter too. We‘re worried Amber isn’t getting what she deserves and needs.”

Wow. I was not the client here but had been singled out anyway for some basic maintenance. I heard more jokes lately that used that word, maintenance, in relation to myself versus my sister. When my parents talked about my sister, she had Needs. I had Maintenance. I had heard my parents jokingly tell neighbors it was a good thing I was such a low-maintenance kid; all the medical needs my sister had would surely preclude them from ever paying for much of a wedding for me someday.

Wedding?

I understood, by age eight, that there was a lottery in life where tickets were drawn, and which would determine how much care and thoughtfulness a person would be considered worthy of by other people. This number, this metric, wasn’t a virtue that individual people determined or committed to, in their judgement if others. It was not subjective. It was your worth. If someone suggested you were worth more, they were wrong.

I believed this when I was eight, and I knew my number was low. I did not wonder why. But sitting at Children’s Hospital, this social worker suggested to me AND my parents, speaking as well for her colleagues, that I was worth more. Even in a place I felt good, and useful — I really loved helping with the other kids in the therapy department, and was closer to looking like a happy, thriving child there than I could have been anywhere else in my life — they still saw that something was wrong. Something was wrong with the way I was treated.

What I learned then was something that those of us who have suffered any type of abuse eventually see. My parents sat, confronted. They were not the brave, devoted parents of the disabled baby, happy for new advancements and suggestions. They were being asked to give an example of how their older daughter could be given more opportunities to thrive.

It was one of those moments where everything you know about storytelling insists that something must now Happen. But these were my parents, so it didn’t. Nothing happened. I do not remember another word being spoken. My sister’s therapy days started being rescheduled to days when I was not available to attend. I never saw any of those adults, children, or that therapy wing again.

Had I even been a difficult teenager? A classic latchkey kid, I came home from school and waited to get my sister off her school bus with its hydraulic lift, then put the thawed meat left by my mother into the oven, put the potatoes next to it, put the frozen vegetables in a saucepan on the stove, and waited for my father to get home. A relatively happy New Wave/punk/ Goth kid, I began to use music as my foolproof escape, although books were still a close second.

My parents started charging me rent the day I finished high school. This was a consequence of “deciding” not to go to college. I had not decided. I was paralyzed with fear. My parents had never asked me, “Are you thinking about going to college?” I had no idea how to apply to colleges. I didn’t know what I wanted to learn. I had hardly attended high school. I could not pay attention to anything. There was too much noise everywhere. I was overwhelmed by starting anything new. I was unable to finish anything I managed to start.

Whatever secret password I had been supposed to use on my parents to get their support and experience in applying to colleges, even community college, I had failed to decipher.

So I moved into the city as fast as I could. I shared a house with some drug dealers and some PhD candidates for Chemistry from in University of Pennsylvania. I got a job at a residential school for clients with severe and profound cerebral palsy. I wiped asses. I feed puréed meals, took students to their therapies, sometimes sat in and watched, and helped out, like I had when my sister was a baby. “Dude,” I said, “it’s cool,” to a boy just a few years younger than me, with an erection, and whom I was showering on an inflatable waterproof gurney. “I’m sorry,” he had been saying. Although his speech was hard to understand and sometimes he just vocalized involuntarily, and I had not been listening hard enough for the words. “I’m sorry, I’m sorry, I’m sorry,” he said, until it finally hit my consciousness — I’d only been awake for the day about twenty minutes longer than he had. “Mike, it’s no big deal.” We put on the radio, found Chaka Khan’s “Tell Me Something Good,” sang together.

I loved my job. When I was not working, I went out with friends for pizza, or I read in my room a lot, in my shared house.

I started getting short stories published in literary journals. For awhile, at the beginning, I know that at least my dad read them. My parents never asked what was next. What I pictured myself doing in five years. I had thought about going to school to be a sex positioner, for people who needed help moving their body parts to engage with a partner.

I moved from the bedroom in the shared house to a tiny efficiency apartment of my own, where I read, and wrote, and listened to music. In my mid-twenties, I got an MRI, because of some bad headaches I’d been having. It turned out they were the result of wearing my hair back in headbands.

Once, the results of the imaging were back, the neurologist wanted to point out something to me — I had what was called a Chiari Malformation. My skull, like my sister’s spinal cord, had not formed correctly in utero, and had a hole in it. Through this hole, my cerebellum — more popularly kept inside of one’s skull — had slid out, further down into my spinal chord.

Sometimes, these things don’t even bother people, the neurologist said. So I decided to feel that way. I had just received my first Fellowship for Fiction writing from the PA Council on the Arts. I paid all my own bills, had not a cent of debt, and loved my tiny apartment. I vaguely remember telling my parents about the Chiari Malformation, but they certainly took no credit for it (although, like spina bifida, it would have taken both of their recessive genes for it to show up in me).

My parents were not a very significant part of my life in these years. They had gotten divorced when I was about twenty-one. They were such a small part of my life, as I think back on it now, that it scares me to think I may ever have to go through such a phase with my own son and daughter. But my parents seemed satisfied with it. I would visit each of them very infrequently. The house I had grown up in did not feel any different without my mother’s presence or belongings in it. Her life was now lived in a small footpath of characterless condominiums, a different one each year. I made fun of the faux-primative driftwood sign above her bedroom archway, which bore the confusing imperative, DILIGENCE. Still, though, my mother still liked to remind me that no matter how I felt about it, my life so far could be seen as a disappointment. “You could have done anything with your life,” she would say, but she never asked what it was I was doing.

To return to the original question.

If my parents or any adults I had been given access to as a child had “supported” me, I’d likely still have been making plans for my life that ranged from bold and original to outright questionable, past the age of fifty. That’s mostly what I’ve been doing and I like the results. And, by now, I’d have to be returning the favor of those supportive adults, helping them make plans for the end of their own lives. I don’t feel that, all things being equal, I’d have the enthusiasm. By my twenties, and even now, I’ve always maintained a cheering section of a few friends, even just a decade older than me. Even if they could be described as “supportive”, I’m not sure that support would have made a measurable difference in the way I lived my life. But it is nicer than being told I never did anything.

By my forties, I had begun having migraines severe enough to require medical attention. I was also continuing to have the respiratory problems I had had since I was a toddler, but they were now more frequently landing me in the ER. After a fall in a parking lot and an MRI confirmed a concussion, my GP showed me the image sent over by the hospital where I had gone after my fall. “Did you know that your brain is kinda… slid down your neck?” she asked.

I explained that the Chiari Malformation had been discovered by accident years ago, but I’d been told it was nothing. “I wouldn’t say nothing,” said my doctor.

My partner was in the midst of getting his Master’s degree in Neuroscience. I talked to him about it. He did some of his own research. The unending coughing — which no medicine stopped, which had me spitting out ribbons of flesh, and which no other test showed a single symptom of respiratory distress (clear lungs, no enlarged heart) — was not a respiratory issue. It was a neurological issue. It was the Chiari. My little “drunk” step — for years, after standing up, my feet would cross and I would swoop down at my midsection like I was doing a little dance — also Chiari.

I had had parents. Fuck their “support” of any of my life choices; I had a rare neurological condition that had been known of since the nineteenth century, and it was almost the exact malformation my sister had, except hers was visible and mine was not. But they never thought to test me. I heard them tell many a tale of how exhausting my coughing was for them, but I was fifty before anyone had asked “could it be anything else other than just ‘seasonal allergies’?”

“Could it be something we could help make better?” — because, by that point, migraines, coughing and aspirating, and tipping sideways were my greatest creative output. Yes. It was. It was something world-renowned specialists, right here in Philadelphia, could help make better.

Showing an interest in keeping me alive is what I call “enthusiastic support”. And I do have a daughter, so my mother got part of her curse on me fulfilled.

Does my daughter treat me like I treated my mother? No — she seeks me out. She trusts me and comes to me like lightning with her biggest achievements, as well as when she is most afraid and let down. She has told me I am the strongest person she knows. She knows that it’s okay to have a hole in your skull and not feel grateful for it, but also knows that it’s okay to talk about it. We aren’t anybody’s poster children and we never have to be.