My brother, Joe, was born with developmental difficulties. He had ADHD before they even added the H. He was one of the first children on Ritalin, and had behaviour problems throughout his life.
These days, there are support groups, websites, databases, etc. available both to the parents and the doctors of "problem children". Back then, everyone did the best they could with the very little knowledge they had. Unfortunately for children like Joe, the best was seldom good enough.
My parents were both 21 when Joe was born. They were young, idealistic kids, striving for a white-picket fence and a dog. They did not ask for a disturbed child. Neither of them knew anything about such kids. I can only imagine the soul-searching they did throughout the years of his life-- the unanswered questions, the unfullfillable hopes and dreams for their firstborn.
Dad absolutely did NOT want another child. He completely refused to consider the idea. Mom, however, needed her own fullfillment as a mother. She needed a normal child. Three years after my brother's birth, she went off birth control without telling my dad. I was born 9 months later.
Apparently at first, things were relatively good. Joe's problems were kept under control by medication, and the stresses of school had not yet started. He was thrilled to have a baby sister, and the pictures of him attempting to care for me are appropriately adorable. My favorite photo of us was when he was about 6, and I about 3. We were crammed into a dilapidated recliner, complete with hand-crocheted afghan, reading a story together. I was almost, but not quite, in Joe's lap, and he kept one arm around me, and with his other hand, he held the book. Any parent would be proud.
The public school system in the 70's, particularly in small towns, was ill-equipped to deal with "special" kids. There was one resource room, filled almost entirely by children with mental retardation and other serious problems. My brother, being of high intelligence, was never considered for the special education class in grade school, and there were no other options back then.
School was very difficult for my brother. For the first time, he had to sit still, be quiet, concentrate. Despite having learned to read before kindergarten, he was placed in the lowest reading groups, because his behaviour was eccentric. He was unable to do his homework. He had difficulty making friends. Other kids began to tease him, and he started losing control. His behaviour problems became worse, both in school and at home. Being unable to voice his frustration and anger, he needed an outlet.
Enter little sister. A shy homebody, I was, even in preschool, awkward with other children, and socially behind. I was naturally on the heavy side, although I wasn't considered obese. Raised in a traditional Germanic home, male superiority and authority ware drummed into my head from birth. These things combined to make me both perfect victim for school bullies, and a target for my brother's increasing instability.
I remember very little of primary school. I don't remember when the childhood teasing became something more than simple insensitivity, and I don't remember when Joe's relationship with me turned from a normal sibling rivalry to abuse. As far as I can tell, both at home and at school, my life slowly became a nightmare.
By the time I was 8 or 9, things had become predictable. My brother would (both mentally and physically) abuse me at every opportunity. I had one friend, a neighbor in the grade below me, but otherwise, at school I was alone. Back then, teachers didn't see any serious harm in childhood teasing, and did not interfere when I was bullied by both my classmates, and those of my brother.
As Joe was now nearly a teenager, our parents decided we were capable of taking care of ourselves after school and in the summer. When they left for work, they always told Joe to "take care of your sister". In reality, I was the one who took care of him. The neighborhood gang played at our house, as we had the biggest yard. I have to give those kids credit. For the most part, they were understanding of my brother's differences, and willing to put up with most of his idiosyncrasies. As he grew older, though, and his problems became harder and harder for him to control, the neighborhood kids slowly drifted away.
There were a few good times. The day of the door comes to mind. In our backyard, we had a summer kitchen, which we used as a playhouse. The wooden door was about shot, being mostly rot. Joe never actually opened the door. He kicked it. On this particular day, when he kicked the door, it came off the hinges, and fell to the ground with a thud loud enough to bring me running from the kitchen. Both of us stood there, shellshocked. We slowly looked at each other, and voiced the same thought: Dad was going to KILL us. There was only one thing to do. We HAD to fix it before they came home.
Joe picked the door up, and handed it to me. I stood there, holding this door, while he carefully measured and re-installed the hinges. Neither of us gave any thought to the hinges on the FRAME. Once Joe had moved the hinges on the door, he tried to put it back up. Of course, it didn't fit. My contribution was, "well, it fit BEFORE". Having no other option, Joe decided to make the door fit. He sawed six inches off the bottom of the door. He then successfully hung it from the frame, and both of us were suprised to see the 6 inch gap at the top of the door.
When children try to act non-chalant, and greet their parents by standing stiffly, with their arms to the side, it's a bit of a dead give-away. The parental unit immediately demanded to know what was broken. We showed him the newly air-conditioned summer kitchen, and screwed up our faces, expecting a beating. Dad looked and looked at that door. Eventually he started laughing so hard that his face turned red. That weekend, he and Joe replaced the old door with a new(er) one. Being female, I was not required (or allowed) to help, but willingly provided the cool drinks, as girls are supposed to do. Even now, 9 years after Joe's death, the whole family will giggle when someone mentions the day of the door.
When Joe moved on to the high school, things got a little better for me. Without his disruptive influence, most of the kids that weren't actually in my peer group slowly forgot that the owl children were worthless idiots, and for the most part, stopped teasing me.
At home, however, things only worsened. Joe was experimenting with sexuality, alcohol, drugs.... His abuse of me became more mental and emotional than physical, and I was in no way able to fight back, or to defend myself. I was nothing more than his willing slave. Everything I felt, everything I did, was directed towards Joe. He was barometer, jailor, and god.
My biggest escape was through reading. I read everything I could get my wings on, from children's stories to Freud. I particularly read things about other disturbed kids, and learned a great deal about mental illness in young people. Slowly I came to the understanding that Joe needed me and related to me in a way he was incapable of with others. Even though he abused me, he respected me, and I was able to prevent him from crossing the invisible line between disturbed and criminal. When he was drunk or high, I kept him from going out and causing trouble that would have landed him in reform school or jail. I helped him with his schoolwork. I became a mediator between him and the world of normal people.
I can say, looking back now, that Joe hated me. He hated everything I was, everything I could ever be. He hated me because he saw in me that normality which was denied to him. He hated me because I had the chance to better myself, and he did not.
Oddly enough, those very things that caused Joe to hate me also caused him to love me. The small part of me that was myself, and not an extension of him, was able to recognize that love, and I believe that knowledge was what kept me sane. By abusing me, he was able to rid himself of that self-destructive anger, and present a pretty face to the world. To prideful Germans like our family, appearance was everything. Never mind what went on behind closed doors, as long as the doors in question were freshly painted, and the shrubs were well-trimmed. Together, Joe and I were conspirators, hiding his problems from the outside world, which included our parents. Also, I was the only one he could talk to, and be sure of an understanding audience. When his disturbances allowed him, he shared with me his thoughts and fears, his hopes and dreams....
Where were the parents? Working their asses off, trying to provide for us. They had a mortgage, two cars, a son with expensive medications.... We only saw them for about an hour a day. Hardly enough time to see the serious problems Joe and I were having, and neither of us were capable of asking for help. Remember too, please, that there were no alternative care facilities they could have sent Joe back then. There was home, state-run institutions, and jail. Was Joe badly enough off to need an institution? Did I do him a far worse disservice than he ever did to me by hiding how badly off he was? I can't tell, and enough time has passed that it hardly matters now.
I mentioned pride. Joe was always a very proud boy. His one desire (unmentionable even to himself) was to make our parents proud of him. He had, of course, no idea how to do this, although he gave it his best shot. Straight out of high school, he joined the Navy.
Free of Joe's destructive influence, I came into my own. In high school, I found friends, peer acceptance, and self-worth. I became heavily involved in music and writing, became a (nearly) straight-A student, and was happy for the first time in my life. I was a long-dormant seed, finally budding.
This isn't to say I didn't have problems. Still overweight, I became anorexic. At times I was severely depressed, occasionally suicidal. I cut myself before cutting was cool. I also started my great search to find the god my childhood teaching promised me. I began church-hopping, and explored non-christian religions. Eventually, I joined the catholic church.
My brother barely made it through basic training. He sleep-walked, and those in charge were seriously considering giving him a section 8, and saying the hell with it. My parents begged the navy to give Joe a chance. Neither Joe nor the navy would ever be the same again.
Once the rigors of basic were over, Joe seemed to do well enough in the Navy. For the first time, he, too, was finding peer acceptance, and making friends. He was stationed in California, and often visited Mexico. Most importantly, he was no longer depended on our parents for everything.
Unfortunately, the navy didn't have as rosy an outlook on Joe, and gave him a semi-honourable discharge after 2 years, mostly because Joe was incapable of accepting authority (this is a bad trait in a seaman). My senior year in high school, Joe moved back home.
No longer my brother's keeper, I pretty much ignored him, and he, me. He still called me the hateful names of my childhood, but for the most part, I shrugged it off. I had found a group of true friends, who were willing and able to accept me, brother and all, and by this time, I was relatively free of Joe's negative influence. He must have realized this, for he (mostly) stopped trying to control or abuse me, and left me be.
The situation stayed like this for that first year. Then I went off to college. I was going to be a special education teacher, and help those like Joe, before theire problems became serious. Being a worthless female, and never being taught to manage money, or even to really understand how money works, I began panicking at the cost of schooling, and dropped out after one year.
Having taken a nurse's aide course in high school, I got a job at a nursing home, and moved into my own apartment. I seldom saw Joe, but if I called to speak to Mom, and he answered, we were civil enough.
My lack of understanding about money came into the forefront. I got credit cards, overcharged them, and was unable to keep up the payments. I eventually had to move back home, a failure. Now there were two worthless kids in the parental nest.
I eventually moved out again, first as a nanny, and then as a daycare worker. I found an apartment, and was actually enjoying some amount of success. I was relatively happy with what I was and what I was doing, and I had the church behind me. I sang in the choir, volunteered for every committee, had the priests over for coffee... the whole bit. Appearances are very important.
I had never found god. I didn't know if the lack were in me, or in him. I began searching alternatives again, and became interested in pagan religions, new age claptrap, and the aliens-as-gods theory, among other things.
By this time, Joe, too, had an apartment. He qualified for social security, due to his disabilities, and was able to get section 8 housing nearby. We still seldom saw each other, but when we did, it was on mostly friendly terms. We had an understanding and a closeness due to our love/hate relationship. Although we never spoke about the past, the present was far closer to a true sibling bond than ever before.
One afternoon, Joe and I were sitting at Mom's kitchen table, playing a board game. I won. He made no disparaging remarks, made no attempt to (even playfully) hit me. He laughed it off, and went to go do something else. I knew then, at last, I had the brother I had always wanted.
The last two years of Joe's life were his happiest. He coached a kid's hockey team. He spent hours each day, taking care of our ailing grandmother. He was somebody.
The call came at work. Mid-morning. The children were in their separate play groups, and I and the other teacher were planning lessons for the next week. Mom, frantic, telling me that Joe had fallen down the stairs, and had serious brain damage. She told me not to come. He was unconcious, and likely to stay that way. I could come home that weekend to see him.
Kindercare is not a very good place to work. They are far too business-oriented, and have lost sight of the people-- both the children, and the staff. However, when my brother died, Kindercare stood behind me. I was given the time off I needed, and the director even arranged that the time come out of my vacation days, rather than be unpaid leave. Within ten minutes of receiving the call, I was out the door with their blessings and best wishes.
I have never driven so fast in my life. The forty-five minute drive to the hospital took me almost 25.
ICU is a world apart from any other. The hopes and dreams of whole families lie in the balance, and every measure of faith is challenged. Politeness reigns supreme. Every morning, as we awoke, stiff and sore from sleeping sitting up on a hospital couch, we would wish the other waitees good morning, and share breakfast. We shared everything, actually. Faith, politics, chicken wings. We banded together, complete strangers who will be forever friends, although we will never know their names.
Joe had, indeed, fallen down the steps at his apartment, and banged his head against the front door. His brain had shifted inside his skull 2 inches, and he was in a coma. Between the time of the accident and my arrival, he had experienced severe swelling and (the technical term escapes me) water on the brain. Twice the doctors had given him medicine to relieve these conditions, and twice the relief was only temporary. The family came together. We had a decision to make.
I stood there, looking at this body on the bed. I felt nothing for it. My brother was no longer there. Only his shell remained, waiting for release. My parents left me with him while they gathered everyone together to discuss Joe's prognosis, or rather, lack thereof. In those few moments I spent with Joe, I gave him the only thing I could. I took his hand, and whispered, "I forgive you".
During the seemingly endless discussion (which every one of us knew the outcome of) we discussed organ donation and the pulling of the plug. Mom asked me if Joe had ever talked to me about these things. My answer was very simple. Joe never understood why he had been put on this earth. He never felt he had anything to give. My dad kissed my brother goodbye, and began to cry. I have never seen him cry before or since.
My parents told the doctors to leave the skin on his forearms and hands alone, so that he might be buried in his favorite Cubs tshirt. Later, we found out that, despite his drinking and smoking, all of his organs were in excellent condition, and would be used.
My parents did very well at the funeral (appearances, remember?). We expected family, and my parents' friends, and nobody else. The doors opened at 4, and closed at 9, with people still streaming in to pay their respects. Some of the stories we heard were of Joe taking a little old lady to her weekly hair appointment, stopping off at the home of a cripple to play poker on Fri. nights, babysitting for a family in his building for free, because they couldn't afford to pay him.
That night, my parents and I staggered home, emotionally wrung out. Over and over, my father kept shaking his head and saying, "All those people for that damned worthless kid."
Later, I asked my mom how much of these stories she had known, and she shook her head. Joe had given so many people so much, and none of us had had any idea. Not even me.
That week, we did everything together as a family, even normal errands. We drove to a Christian bookstore to get thank you cards for the well-wishers, and I was drawn to a necklace. The cross was made of pewter, similar to a cross my brother had once received as a present, and had kept but never used. I did not mention the cross to my parents, I didn't even tell them what I was looking at. My dad saw me fingering the thing. I must have had a tear in my eye, for to me, the necklace had become Joe's, and it was, for that moment in time, a symbol of him. Dad picked up the necklace without saying a word, and added it to our shopping. Even today, as an atheist, I wear that cross, and remember the brother that I lost.
