In my poll yesterday, I asked some pretty nebulous questions about satisfaction with life. I personally don’t believe one can be happy with life, but one can find happiness within it. Life is about conflict. While some people enjoy challenges and conflicts, they can’t enjoy it all the time. I am trying to find the wall between challenge and satisfaction. Some trends emerged yesterday which were good food for thought.
There is a varying amount of knowledge amongst anyone who might be reading this about my family, and how it has affected my path in life, and continues to up to today. It is fairly significant in my outlook on just about, well, everything. Why I am an eternal devil’s advocate, why I am full of useless knowledge, why I have no faith in a divine presence, and why I have no intention of having biological kids, despite my love of children, and my hopes for a family….
I’m one of five. My parents are both still alive, though neither of them are in particularly great shape for the age they are. I am the eldest of three siblings. I have a younger sister and brother, in that order. My mother lost two, one between my sister and brother, and one after my brother. My dad is one of seven. Both of his parents were one of double digits. I don’t know if it was the religious prohibition on preventative measures, or whether both my parents wanted a big family that made them keep going. I’ve got to say, I have no idea how my world would be different had they not struck out when they did.
My sister and I have always had an odd relationship. When she was brought home from the hospital, I refused to call her by her given name, instead referring to her as ZhzaZhza (which was also the name of a recently deceased great aunt who I never met, or spoke to directly, something which caused something of a stir amongst my family). I refused to the point of punishment to call her by any other name, so, ZhzaZhza became one of my sister’s nicknames. I was, as I recall, a protective and helpful older brother for the majority of our earliest years. There are two years between my sister and I.
Christine was born a little early, but nothing medically dangerous for the times. She as born hale and hearty, and aside from not having hair for a while, she was a pretty normal infant. She slept a lot, and very soundly. She walked late, and talked late, but neither of these things were late enough to set off any alarms, or seemed out of place.
On Holy Saturday (that is the day between Good Friday and Easter Sunday, for all the non xtians), when she was four years old, my sister had her first of many Tonic-clonic seizures. My grandmother (my dad’s mom) who was a nurse in WWI and WWII thought my sister was choking on a jellybean. When she went into the clonic phase of the seizure, my grandmother lost it. My sister spent that Easter in the hospital.
This began a very long road for my family, myself in part. My sister from the age of 4-8 had an average of 6 seizures a week. That seems crazy, but consider that is an average. For the first year, she averaged double digits a day. Her worst day, she had 32. The best way I’ve ever had a neurologist try and explain that impact was this: “Imagine being TKO’d by Mike Tyson. That is what one of these seizures does do you. Now imagine you are five.”
Luckily, we were in a time and place in history where there was some neuropharmacological advances could help. However, many of the drugs my sister was on in the first few years had side effects. Lots of them. All her hair fell out, and grew back whispy, and a different color. She had tooth, vision, liver, and joint problems. Her sense of balance, ability to learn, retain information, and do most of the things a little kid spends much of her time doing were affected. Until she was 8, my sister effectively aged at a half-rate. Part of this was due to the seizures she continued to have, part of it was due to side effects of incredible levels of chemicals to treat the seizures floating around in the body of a developing child.
By the time my sister started having her issues, my younger brother had been born. His infancy, amongst all the infancies of my siblings, was the hardest. He was two months preemie, and born with a pretty bad viral infection, which was passed down to him through my mother, who had been on bed rest since her sixth month. He spent several weeks in an incubator, and really didn’t get well until he was about a year old.
How does all this relate to me? Well, for starters, as the oldest, responsibility was put on me from a pretty early age. There were plenty of times where it was my job to mind my brother while my mother dealt with my sister’s seizures. For the few years my sister and I went to school together, I always had to look out for her, or be around in case something happened while she was in school. I went to the library with my mom to research medical stuff. Sometimes I helped her find books, sometimes I kept my siblings occupied.
The librarians would let me into the adult stacks from a pretty early age, mostly because they knew I whouldn’t screw around like most of the kids my age would have. This helped me later in life, when I had read pretty much everything in the house. I learned to understand some of the terms my mom was researching through her conversations with research librarians, and, later, phone calls with medical research libraries and facilities. Her ability to deal with people, both on a personal and intellectual level is something I half inherited, half learned from her. She also taught me how to be a bitch. I learned to listen to doctors, but question them, despite the fact that they don’t like to be questioned. I learned to look at the details of a statement so hard that you can find the parts where that statement were not 100% fact, and find something in that part. I learned to think about stuff most kids didn’t really deal with until way older. I don’t know how my brother remembers all those years – he and I have always been so different, both in attitudes as well as memories. I should ask him some time.
My parents were given a choice fairly early in my sister’s treatment (through Long Island Jewish Children’s Hospital): institutionalize the sick kid, and try to save your marriage and your other two kids. To date, my sister has never had a formal diagnosis for what she went through.
My parents chose to ignore that advice. My mother spent a lot of time researching alternative therapies and treatments, and there were a lot of odd repercussions of that. Part of the communal family byproduct is that things that were done for my sister were done for all of us. Part of this was to keep a sense of equality amongst siblings, another part, I am sure, was to keep my parents a little more sane. There was a whole year where the only protein we ate was from chicken, eggs, and fish. There was another year where we didn’t have any citrus products in the house. My sister’s medication was a constant in the day-to-day routine, as were the restrictions on lifestyle.
I didn’t have a lot of friends as a kid, largely due to two factors: I went to a Catholic school a few towns over, which meant that most of the people I could be friends with were a drive away, and my parents were not big on having people over, because transportation was not always a given if my sister was having trouble. That, coupled with the fact that I was a weird kid, more comfortable having conversations with adults, despite my natural childish tendencies, made me sort of a loner. That simply reinforced the bookishness and retreatism in me. My mom didn’t work, but my dad worked twice as hard to make up for this. I didn’t realize until I was much older that part of his workaholism was an escape, as well as a byproduct of his ambitions.
When my sister hit her early teens (and the hormones that come along with that) she started a frightening new path down her road of disability. Previously only mentally restricted (which touches on behavior in many pertinent ways) she started down the road of emotional disability. Her teenage rages were almost as difficult as her teenage depressions. With the onset of hormonal cycles, the seizures started becoming far less frequent. However, the onset of full on emotional issues to offset that benefit was staggering.
When my mother returned to working (I was about 10 at the time), there began a period in my life where a whole new batch of outside influences found their way into the day-to-day. My parents sought the employ of aides (or babysitters) to stymie the hours between school letting out, and my mother getting home from work (usually 3-6). The first of these aides, a woman named Melissa, was an unwed single mother giving her child up for adoption. The second was the aunt of a classmate of my brother, a southern black woman by the name of Suzy Copeland. The last aide, Bob Bradley, was a man who was a part-timer at my sister’s school (Westchester School for Special Children).
At this point, I was about 12, and my father was a full blown recluse in his work. He would come home for dinner around 7, having left the house by 5am, and often had volunteer or other duties after work. He has been a volunteer fireman almost 30 years, and tried his hand in local government, as well as a few local fund raising efforts and church programs. Bob’s introduction to the family was the first thing that ever made my dad pause – mostly because of his relationship with my mother.
What I can definitively say is that my mother was emotionally cheating on my father with Bob. There were many times that they would linger talking in the kitchen, my mother having come home early, and Bob pretty much leaving my sister to my brother and I. I think the final showdown was one night when my father came home late, and Bob was still there chatting with my mom, and had finished the last half of the last six-pack in the house. It seems odd that a beer might be the wakeup call to my dad, but he realized then that he had invited a fox into the hen house. Bob’s employ with out family ended shortly thereafter, though his relationship with my mother persists to this day.
Shortly after Bob’s departure was when things hit my worst with my sister. Her hormones coming into their own caused all the physical changes of adolescence, with none of the limited intellectual or emotional advancements adolescents have to temper that change. My sister became violent. She became incoherent at times. She, to this day, has a very egocentric outlook on life, and had little in the way of social jurisprudence or guilt to inhibit what many would consider to be homicidal or dangerous behavior. After the third time my brother and I had to wrestle her into a restraining hold for several hours while my parents went off for a Saturday matinée (this last time involved a knife, and a few flesh wounds) my parents acquiesced to the inevitable. The in-home therapy my sister was getting, and the behavoralist who spent many Sunday afternoons setting up the rules and methods by which the family was to exist by were not enough. My sister had to be institutionalized.
This happened in stages over a couple of years. Ultimately, my sister ended up in a group home, which was followed by six years at an institution called The Devereux Foundation. Since then she has lived in a group home staffed/populated by people affiliated with Devereux.
When I was 18, I signed papers which made me the legal guardian of my sister if anything were ever to happen to my parents. This responsibility was not shouldered lightly, but has left me with a path in life which is somewhat contrary to the one I probably would have lived had I not had the obligation. You can’t bugger off and become a wandering miscreant if you will ultimately assume responsibility for someone else’s life. Financial planning, life planning, geography – all of these things have had a place in my long-term realities, even though for many years, I didn’t believe in long-term realities. I think more than a little bit of my flack with life comes from some of this, and the fact that while my brother has the ability (and the proved capacity) to do what he wants as he wants to, it has always been a fight that I have lost when I asserted my own will over the course of my life, running contrary to the long-term obligations my family has affected in me. Aside from a period of a few years when I was not on speaking terms with them (during which, the legal obligations I bowed to were never heavier), they have always been a well-padded manacle at my ankle.
There are days, like yesterday, when I am not sure how I feel about all of it. If the three aspects of life I was polling about are the pizza pie, my family is the pie plate, and my friends are the oven.
I have a lot more to write about this, but I am definitely out of steam. Maybe another day.
I hope I don’t end up with too many bubbles in my crust.
