My Brother Charlie

My parents were married in 1950 and three and a half years later they had three children, my older brother Ralph, me, and my younger brother Charlie. When Charlie was around two years old he developed a very high fever and was rushed off to the hospital. The doctor told my parents he had polio. Sometime around that time it also became apparent that he was not learning to talk and everyone seemed to assume that even though he no had no other physical problems, his inability to talk was related to polio. Throughout my childhood and into adulthood when asked about my family I would say “my brother Charlie had polio and that’s why he doesn’t talk.” I remember my mother saying in retrospect that she was always so grateful that Charlie was undemanding as an infant, and could sit in his own world for hours in his playpen. Although it seems so obvious in retrospect, I never heard my parents mention the word autistic. I had been so ingrained in the polio/doesn’t talk scenario that I didn’t realize that he was autistic until several years after I had completed medical school. The sad truth was I never really thought about it.

Part of the reason that I never questioned Charlie’s polio is that when I was about 8 or 9 Charlie moved to Lochland, a residential facility in Rochester, New York, and there was probably a good 20 year period when I never saw him. I have very hazy memories of Charlie before he moved out; I don’t recall wondering why he didn’t go to school with me, why he didn’t have friends over, or what he did all day. Recently we got our old family movies turned into DVDs and I was surprised to see Charlie totally mixing in with the rest of us. (Of course the movies had no audio). There was Charlie looking for Easter eggs wearing shorts pants, a sport coat and a bow tie, Charlie riding a tricycle, and blowing out candles on a birthday cake. I cannot even imagine the growing anguish of my parents as they realized that even though Charlie was so normal in many ways, he would require life long care.

For several years when Charlie was first at Lochland he would come home for summer vacation. This was great because my mother always rented a trampoline for the summer that we could all use. I remember Charlie jumping by himself for hours, sometimes suddenly yelling the syllable Geee (with a hard G)!! and then laughing at some secret joke. He was also a good singer and could wordlessly sing various show tunes my mother would send him. This was also the time when we would watch the Ed Sullivan show on TV, which often seemed to feature odd circus acts from Eastern Europe. One that I remember was a bunch of guys wearing white stirrup pants with suspenders, who balanced spinning plates on the tops of long poles. Well, Charlie seemed to have the same skills. He could jump on the trampoline while twirling a wet washcloth on his index finger. No one else in the family could do it. He could also do the same thing with a Frisbee, and I think that he was pretty good at a hula hoop. Charlie was also an enthusiastic eater. I remember that he would grab a canister of Redi-Whip from the icebox, squirt it directly into his mouth and then laugh. It was obvious that he had a pretty good sense of humor.

One of the great mysteries of Charlie’s mind was that although he could not communicate he understood everything and was perfectly capable of doing household chores, such as emptying and loading the dishwasher. One day my mother asked Charlie to take out the garbage. We had two garbage cans outside; one was an incinerator at the edge of the driveway and the other one was a regular garbage can right out the back door. Charlie seemed to mistake the incinerator for the garbage can and lit the garbage can on fire. I remember the day distinctly. I was getting dressed for school, and in fact was wearing a pink and yellow candy-striped pair of culottes that I had made myself that perfectly matched my pink sweater. I looked out the bathroom window to see the fireman raising an axe as the flames licked up the side of the house. There were pools of water in the driveway. My father was wearing his going to work clothes which included his felt hat and my mother was standing in the bathrobe she used to wear while she made us all breakfast. Although they were standing with their backs to me, I saw their deep sorrow in their slumped shoulders and bowed heads

My parents then decided that coming home to visit was too disruptive for Charlie. While they visited him four times a year, I don’t think any of my siblings saw him for decades. Now I wonder why my parents did not take one of us on each of their visits to Charlie, but on the other hand I am also ashamed to say that I never asked to go. Charlie moved to different residential facilities along the way and spent some time in Florida. When that facility collapsed, my parents even tried to set up their own facility in Florida, called “Great Days.” I noticed these efforts with only passing interest, and I am even more ashamed that I did not pitch in to help on a daily basis. It was very clear that my parents loved Charlie and that he was part of our family, but I think that my parents were trying not to burden us with his care. Perhaps they knew deep in their hearts that it would be our turn soon enough. Ultimately Charlie ended up back at Lochland. Finally one August about four years ago I made my first visit to see Charlie at Lochland. It was the last visit for my mother, whose heroic efforts to compensate for her eroding mind were beginning to show cracks. Shortly after this visit, Alzheimer’s disease overwhelmed her and she never saw Charlie again.

Lochland is housed in a magnificent estate overlooking Seneca Lake, one of New York’s Finger Lakes. As we walked up the steps, I began to hear odd noises – some yelling, inappropriate laughing and then Charlie’s characteristic Gee! Charlie came up and hugged my mother briefly saying, “Muma, muma, muma.” I said, “Hi Charlie, I’m your sister Bobbie,” and gave him an awkward hug, in part because I was startled to notice that Charlie and I are virtually identical twins. This was something that I did not appreciate in all the photos that we had of Charlie, and it was eerie looking into his faraway eyes to see a sort of warped version of myself. Charlie was clearly pleased to see my mother since he knew that he would get some treats, but he soon he wandered off, retreating into his own world. We were left standing in the huge living room of this old mansion surrounded by other residents and staff of the house.

I took a deep breath. Glancing at my watch, I realized that our visit was less than 15 minutes old and it was already clear that we had to start killing time. I turned to the woman next to me and struck up a conversation. I had a such pleasant chat with Cameron that I assumed that she was one of the staff people. All of a sudden she leaned over to me and said, “Wait right here, I want to give you a present.” She rushed back and presented me with a load of hangers that she had decorated (sort of) with different colored yarn. Oops, first mistake, turns out that she was a resident. There was another sloppily dressed man standing awkwardly in the corner who looked like a resident. Later on I realized I was making dangerous assumptions when I saw him driving the Lochland van.

That morning I met with Charlie’s psychiatrist and for the first time I formally heard that Charlie was autistic. Later that day we met Charlie’s “advocate” a woman named Charlene who was supposed to be especially attentive to Charlie’s needs. My parents had been singing the praises of Charlene for several years since she would frequently take Charlie to her home for dinner or even on vacation with her family. Now that I belatedly knew that Charlie was autistic, it didn’t make complete sense to me to change his routine and environment. Sure enough, Charlene would report that they had a great outing, but that Charlie had broken something, like her computer, and then Charlene would send my parents a bill. Charlene suggested that we take Charlie out for dinner to the Sizzler steakhouse. This seemed equally crazy – why would you take someone with virtually no impulse control and an infinite appetite to an all-you-can-eat buffet? This was my first initiation into the sandwich generation and it was the most stressful meal of my life. Charlie would continually try to slip out of the booth and hit the dessert line again and again, and then yell when I tried to stop him. My mother wasn’t sure where she was either; she would get up but then not remember where we were sitting and I would lead her back to our booth. At one point I was retrieving Charlie when he startled another diner by grabbing his lemon meringue pie off his plate and then laughing mischievously. Charlene was trying to show off how well she controlled Charlie by continually jabbing her index finger into her forehead to get his attention but this strategy clearly wasn’t working. It was merely incidental that the food was predictably wretched.

The next day was Charlie’s birthday – I think that it was his 50th birthday. Charlene had arranged a birthday party at her house, inviting all the residents of Lochland plus a variety of other disabled adults. Charlene’s husband was one of these enviable guys who could fix anything, but the consequence of this great talent was that his yard was strewn with appliances – there were dishwashers, lawn mowers, cars and an RV all in various stages of repair or disrepair. Charlene had really gone all out and made many different casseroles, all of which seemed to have mayonnaise as the principle ingredient. She had laid them all outside and as the bright sun relentlessly beat down I began to see oil pooling everywhere and the mayonnaise getting that nasty gelatinous look. The yard was now filled with people either in wheelchairs or staggering around, Charlie had no clue that this party was for him and just wanted to eat the dripping and drooping cake that was on display, I had lost track of my mother and I didn’t want to make the same blunder of mistaking a staff person for a resident.

I was utterly exhausted when we finally reached the soothing, relaxed atmosphere of the airport. We happened to fly over Buffalo and I got my first glimpse of Niagara falls. I leaned over to point this out to my mother, who only noticed the fluffy clouds and commented that she thought it was odd that there would be so many snow drifts this time of year. I also saw that when she tried to do the crossword puzzle she just added extra boxes if her word didn’t fit. I thought about all the times that she had made this trip by herself and how she had somehow assimilated all this sadness into her life, and how she had spared the rest of her children from this burden. I vowed that I would not view my care of Charlie as burden, but consider it an opportunity to spend time with my brother in a beautiful part of the country.

I have had some missteps in the past five years, but by and large I would have to say that I am learning to enjoy visiting Charlie, if you don’t mind having your heart broken from time to time. I have discovered a National Wildlife Refuge some 20 minutes away that has fabulous birdwatching. I took Charlie on a walk there on my last visit, and even though he peed in the middle of the trail, I was actually happy to realize that he was smart enough to know that was acceptable in the woods. There is a great yarn store in downtown Geneva that I always stop by. We no longer take Charlie out for dinner, but go to the grocery store and let him pick out something special to have back in his apartment. One time we made a cake together and he did a masterful job of licking the bowl, then washing it and putting it back on the shelf. Charlie loves watching the movie “Sound of Music,” and occasionally when he sings you can catch snippets of “Edelweiss.” One night as we were watching he curled up on the couch and put his head in my lap. I gave my 55 year old look alike brother a head rub just the way our mother did so many years ago.