My very young parents had about a 90-day "honeymoon" after Gary was born, seemingly normal. My troubled mother was excited that now she would "have one" because by age 3, I was already firmly my father's child. I desperately needed a sibling, too, although that would not become so obvious for awhile. A lot of family energy seemed to hang on his arrival. Gary gained weight, grew longer ("taller"), and there are photos of him propped up on his elbows, holding his heavy head up on his neck under his own power . . . like all babies do, right? The only warning bell tolling was that sucking thing.
The condition revealed itself on Easter morning when my mother went to Gary's crib to put a bonnet on his head before we left for Mass. He was having a seizure. There began about 5 years of doctors, surgeons, travels to more doctors and surgeons. Neurosurgery in the day was tantamount to opening up the cranium and having a little look/poke inside. Never were my parents to hear a decisive diagnosis, hanging their hats on the various tentative causes of "a virus" and other shots in the dark for nearly 20 years. Finally, Gary became quite large compared to my tiny mother. He had to be lifted - dead weight, from a crib set at a low position - for all forms of care. He developed additional physical illnesses. When hopes for a miracle ended, it was decided that placement in the state hospital system would be the best for everyone. It was, for Gary, likely. I am less certain about the other three of us. But we'll never know.
I have seen my brother in person fewer than a handful of times since that day in 1960. I was not allowed (by the hospital) to visit until I was 18. No, they were not allowed to bring him out to the car so I could see him. I might have an illness he could carry back in. At Christmas and other holidays, came handmade "art projects" containing Gary's picture. He resided with many other people who were not as damaged as he is. They made cards and gifts for their families. Some kind person always made sure there was a Santa birdhouse with Gary's picture in the doorway to send to the Morgan home. My mother and Granny never missed one of Gary's annual reviews with the doctors and nurses. Whereas some of the patients had progressed to "walking independently about 15% of the time", Gary's reviews were more of the "full bath every other day, sponge bath every other day, hair cut once per month, tube feeding site unremarkable" variety. My mother actually enjoyed going to these events. Granny made hundreds of lap-sized quilts for "Gary's friends" over the years.
My very young parents missed the mark with my upbringing in many ways, but they managed to instill in me compassion, love and pride in Gary. While almost anything out of the ordinary can mortify me (still today), I have never paled over a loud seizure in public or the noises he sometimes makes that defy description or definition. How can one love someone/something that gives no apparent love in return? I don't know the answer. I just know it can be. When I turned 18, I was taken to the hospital for Gary's next review. He was 15. It had been 10 years since I had seen him. Granny and my mother watched me closely. I'd been known to faint or collapse over certain things in life. But no. I was a hard-boiled little hippie chick. I looked at him. I held his hand awhile. I marveled at his complexion. I envied his deep brown eyes. I got the blue ones. While waiting for Gary to become "available" for our visit, I'd enjoyed (with only a slight amount of fear, sadness and a little revulsion) watching armies of other damaged, broken human beings industriously doing their work. Patients, ambulatory and not, were assigned to do whatever they could manage. I saw clean diapers being taken from a bin as large as a room and painstakingly folded - in some cases, it took 10 minutes per diaper - the same floor tiles being swept over and over and over again. Decades later, as a union representative, I never achieved anything that made workers as happy and productive as those sweet innocents folding and sweeping.
In the mid-1970s, my mother got a telegram from the hospital. "Please call immediately." A group of residents, interns and medical students had been touring Gary's ward. A young resident, knowledgeable about the most recent findings, thought he recognized some symptoms and asked to examine Gary more thoroughly. The tests were run and the conclusion indisputable. A genetic disease, only recently scientifically identified. "Is Gary's sister still living?" Boy, howdy! I was living with Ex, hoping to have 6 children, all born at home without pain medication in the good hippie way. Testing my mother and me took about a year. It was unpleasant in every respect. My father danced. We didn't understand the dancing. Ultimately, he refused to be tested. I imagine he did not want to risk being labeled "the culprit". He has not survived that refusal unscathed, I must say. And although only 75% of our family had been tested, I was told that I could not pass on the disease. I didn't have it, and therefore, I couldn't give it to my own children. However, erring on the side of conservatism, my genetic counselor suggested I have one normal child and call it a day. OK.We didn't know and wouldn't surmise for awhile that I was infertile. Conceiving the child I finally delivered took many more years. Early in the pregnancy, we went through another round of genetic counseling. Many years had passed. My newer counselor was even more solid with "you don't have it, you can't pass it on" than the counselors of two decades earlier. I wondered if the condition was detectable through the amniocentesis I intended to have. No, it wasn't and still isn't today. When Amber was born, as perfect a specimen as anyone could hope for, I called the genetic counselor. "Do you want to examine and test her?" She didn't want to check Amber. You see, I didn't have the disease and, therefore, I couldn't pass it on.
On later visits with Gary, I was not the stoic I had pretended to be at age 18. I engaged in an impulsive act that startled my mother, every single time. You see, I'd tear off Gary's socks and spread his fingers like I was trying to break a wishbone. "What the heezy?" "Checking between his fingers and toes, Ma!" I wanted to inspect the effectiveness of the alternating full baths and sponge baths. He was always, but always, spotlessly clean. I never entered his room, or left it, without sobbing about what could have been. Not only for my brother and me, but for all of the earth angels in that place.
So Saturday evening, a group of us were laughing and talking and screaming at the TV. I'd been pulled in to some pre-Super Bowl atrocity featuring Chrissie Hynde and Faith Hill as a duet, singing one another's songs. To use my daughter's favorite comment, it was just wrong, but I couldn't leave it alone. Oh, my, the kicks on Faith's feet. Oh, my, her red leggings."Jeez, change that, Les!" No. I couldn't. So a commercial comes on. It's advertising a TV special dedicated to the 100th birthday of St. Ronald Reagan. In the background, strains of the Stones' Brown Sugar was playing and that pissed me off just a little. I'm sure Big Band music would be more appropriate to St. Ronald. I doubt he would recognize Brown Sugar. On a number of blogs as the Reagan canonization approached, harsh debate ensued. The hard question: on what should we spend our (too little) money? "Military might!" "Social programs!" "Education!" "Health and welfare!"
All right, everyone has his or her opinion. Military might doesn't tantalize me. In fact . . . well. Nor do I want marauding enemies to breach the shores of our homeland. I do believe we have a responsibility to take care of those who cannot take care of themselves. There's my stance, as bland as I can make it. Seeing some of the film footage for Reagan's special made me think of "his" California where I lived most of my life and once loved. It has been so decimated in every way. This was brought home to me as I thought about my brother. The vast hospital campus once provided health care and purpose for thousands of patients (peaking at 2,700 residents in 1967). Today, "Gary's friends" number 20. They've been moved to a small building. These are the most damaged of the damaged. The others are treated on an outpatient basis or they were simply turned loose when it was determined the money should be used for other things. Where did they go? Unfortunately, I think I know. I've done enough volunteer work to recognize that some street people are not "just" homeless. They're ill. They can't take care of themselves. There are too many of them. My brother is one of the lucky ones.
In my ears right now: You already knew it was a favorite song, but I've never had any Willie in it!