I Wish It Could Have Been Otherwise
This was written for an academic journal about people with disabilities and what that means concerning their parent-child relationships.
As far back as I can remember, I have been hearing voices. It started when I was just three months old. I remember lying on my back in a cold sweat, undergoing nicotine withdrawal (as I found out decades later), my smoking mother having switched from breast-feeding to bottled formula. Gasping for breath, I heard my father yelling at my sister in the next room. She was wetting the bed every night, and my father was extremely upset. I couldn’t understand at all, and was preparing to scream aloud.
Suddenly a voice went off in my head, saying “If you scream, something very bad will happen to you.” Since I was only a baby, it wasn’t in words, but I could hear the voice. I screamed anyway, and my mother came in, swooping me out of the crib into her loving arms. I heard my father’s yelling increase, and the sounds of my sister being spanked. It was so awful I can recall it even now, though I know that seems utterly impossible.
I grew up clumsy, anti-social, unable to communicate well. And the voices continued. I was watching TV once, “The Green Hornet” show, and I felt something spit very hard between my legs, going straight up my private parts. It was horrible. But I never told my parents about any of these things, keeping it all quietly to myself as the other kids taunted me, making fun of how weird and unusual I was, unable to keep up with them except in my schoolwork. There, I excelled. But for many years I spoke to no one, crying to myself even in the classroom, my body twisting up into awkward shapes uncontrollably. My mother noticed this, but we never saw a doctor about it. Instead, she sought out psychological counseling for me when I entered my teens. This did me no real good.
One day, a nice lady coach who had seen me jogging around the high school track asked me to join the girl’s track team. I did, and this began a partial recovery from my disabilities and social awkwardness. I made friends, and even came in second in one of our races. By the time I entered college I was pretty much normal, though often subject to strange feelings and occurrences, and occasional voices in my head. But still disturbed and given to crying fits, I dropped out of college, taking off hitch-hiking to blindly find my own haphazard way of living. I ended up in Washington State, where I found work as an attendant for the disabled. I met John Tyler, a most amazing man with polio who taught me that disability is not the end of your life, but the beginning, and I made friends with other disabled people.
For the first time in my life, I was happy; I blossomed with joy, no longer alone and afraid. I even married the most wonderful man in the world, Ron Schwarz, the son of Austrian Jews who had fled Hitler’s Holocaust; he had severe multiple sclerosis and used an electric wheelchair. We could not consummate our marriage, but we were deeply in love just the same. We all lived happily at Center Park, the first major apartment building in the country built specifically for people in wheelchairs and for all kinds of disabled people to abide within its beautiful walls independently. I met every sort of disabled person imaginable, including the deaf/blind, learning all about the various disabilities. But my sweet husband Ron finally died of cancer in February of 1985, two short months after my dearest friend John Tyler, my mentor and savior, unhappily succumbed to pneumonia.
Working just a few more years for the disabled, I stressed out, unable to work anymore, and in the middle of this, 1986, I had an incident where I tried to hurt myself by falling off a window ledge, ending up hospitalized and on several mental health medications. Previously in 1982 I had been diagnosed as depressed, but had not stayed on medications. Now I was forced to do so, until I finally had myself taken off them again. I went on struggling for years until I met Remigio, my present husband, in a certified nursing class in 1990. I went back to work for a disabled lady, Carrie, again at Center Park. Remigio and I lived with her there until she gave up her battle to live independently and moved to a nursing home, where she died.
I and Remigio, constantly arguing due to my mental disability, married and moved into our own apartment. As he couldn’t take the constant quarreling, he took me to a psychiatrist friend of his, and once again I was put on strong medications. These hurt me physically, and in 1997 I finally came down with a severe physical disability, chronic dystonia/dyskinesia of my left arm and head. We are presently treating this by reducing my psychiatric medications and using natural therapeutics. But I still constantly turn to the left, having to struggle to right myself at all times; my left arm sticks straight out, and it’s very difficult to bend it, or even type.
Yet I had already set myself up years ago in business as a freelance writer, copy editor, copy writer, ghost writer and website designer under the name Rainbow Writing, Inc. I have my own website, several of them in fact, and am listed within several Internet writing agencies. I work ten to twelve hours a day, almost seven days a week, getting there by taking frequent breaks. I am just starting to make some money at this, and was recently hired as a full-time ghost writer by The Floating Gallery of New York City.
It’s a daily struggle, and my left arm feels like it’s going to break off my body at the end of my challenging day. But it keeps me busy, and I truly love my work. Many people have said I am blessed with extraordinary skill and talent, and I try to go a little further and learn a little more each day.
Remigio, a former psychiatric aide, certified nurse aide, and Doctor of Osteopathy, is a Godsend. I love him as much as I loved Ron, in spite of my mental problems, which are starting to finally alleviate under Remigio’s constant care and loving support. And in 1994, we were blessed during Christmas, the same season that John Tyler died, with a beautiful little daughter, our sweet and loving Angela. Due to my disability, she suffered some psychological trauma, such as during the times I attempted suicide, but although partly severely disabled herself from this, she is healing and pulling through, excelling academically and socially in ways I never was able to learn. She is a dream come true.
If I could have written something for my parents, or told them something when I was growing up, I would have told them to not fear my special challenges. I would have asked them to read about people with disabilities, which my mother did a little, reading about an anti-social little boy when she sent me to counseling. I did not even know about disabilities when I was growing up, so I would have asked them to have taken a greater role in my upbringing, as they were often rather aloof and distant. They didn’t seem to realize that my problems were not all my own fault, but the fault of fate and my unknown, undiagnosed, untreated mental, social and physical problems.
I would tell the parents of children with similar disabilities to mine to pay more attention to their children, never blaming them for their problems, listening to them carefully and never comparing them to normal children, which shames them and only makes matters worse. I would tell them to read books about children with disabilities, and to enter any organizations for such children, exposing their own child(ren) to other, similarly-burdened children so they would have a peer group, which I did not have until adulthood.
I believe they would feel more accepted and normal that way, and a lot happier than I ever was. It would be a much more fun, healthy, and productive life for them to be surrounded with other disabled children, and to develop a healthier, more normal attitude about themselves and their disabilities. Above all, it would help to stress their abilities and cultivate their happiness, both within their families and in society at large, as they learn and grow.