I am a disabled American. I am one of an estimate 74 million adults in this country who are living with some kind of physical limitation, nearly 1/3 of all adults (source: Centers for Disease Control and Prevention: Disability and Functioning). My disability is with me every day - there is hardly a time when I am awake where I am not employing some strategy to compensate for what I find difficult (or at one time impossible) to do. Yet if you were to meet me in the non-virtual world, you would not be able to guess that I had any difficulties whatsoever; certainly you'd never guess that my life nearly ended the same day it began, nor that my parents once feared I'd never walk. To all outward appearances, I am a "normal" adult, albeit with the same aches and pains as any other middle-aged American. The story of how I got from a brain-damaged newborn to nearly full function is a tale of skill, luck, tenacity and compassion from the doctors and nurses, the physical and speech therapists and, most importantly, my parents, who all saw an almost impossible future for me. They dragged me, often literally kicking and screaming, along for the ride. Come join me below the squiggly thing and I'll tell you the tale.
KosAbility is a community diary series posted at 5 PM ET every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
I was born just before lunch on a cold day in February of 1967, in Rochester, NY. Ironically given all the drama the followed, of my mother's five known pregnancies, mine was the only one without significant complications, unless you consider a craving for Fluffernutters a complication. I was healthy, over 8 1/2 pounds and born crying. By nightfall I would be critically ill and the medical professionals would fear for my life.
I had spiked a fever, which is very dangerous in a newborn, as infants do not have fully developed immune systems, and was crying inconsolably. The doctors knew I had some kind of infection, they just could not figure out where, or how I had gotten it. They were stumped until my pediatrician, whose name is sadly lost with my baby book, realized the expression on my face was just like that of another patient he'd been treating. This other child, a toddler, did not have any infection, but had had to undergo a diagnostic lumbar puncture (aka a spinal tap), in which a small amount of spinal fluid is drawn off. The procedure can create a spinal headache, which I understand, on the pain scale, is just above kidney stones and childbirth. Meningitis, an infection of the protective fluid that surrounds the brain and spinal cord, can also cause a spinal headache, and would account for my symptoms, although the doctors were still at a loss as to how I could have contracted it. On this hunch, the pediatrician began antibiotic treatments, but warned my parents that I had a better than 50/50 chance of dying, and about a 95% probability of brain damage even if I lived.
It took 48 hours to confirm the diagnosis (through a lumbar puncture, as it happens), at which point the antibiotics could be targeted to the specific bacteria and the doctors knew my life would be spared. I was finally pronounced cured and released to my parents after two weeks; the doctor told my parents "treat him normally, and we'll see how bad the brain damage is." My parents could only wait and see.
I was a happy baby and for the first year there wasn't a lot of evidence of what had gone wrong. But as I matured, my development of physical skills did not keep up. I had problems grasping things and holding them, my eye/hand coordination was poor, my balance was bad and my walking was delayed. I never learned to crawl; instead I propelled myself sitting cross legged on my rear end and pushing myself along the floor. When I did begin to walk, carefully, my parents realized the balance issue was pretty bad. I fell constantly, far more than a typical child learning to walk. I routinely fell both up and down stairs (yes, you can fall upstairs - it's difficult, but possible) to the point I was not allowed to do either without an adult either holding my hand or below my on the stairs. On at least one occasion, I went down the cellar stairs while holding my mother's hand, and my sister literally saved me by simply sitting down and blocking my body with her own.
I also had a significant problem with my hands. I continued to have problems with grasping and holding. I could not fasten a button; couldn't use a zipper, could not tie my shoes. I could only eat with a spoon because my aim was so bad. You can only imagine how wonderful it was for my parents when I would get frustrated because I couldn't do something - tantrums were a daily fact of life. Although I was clearly of higher than average intelligence - I learned how to read on my own from Sesame Street and read at a 12th-grade level before I hit middle school - I also had a speech impediment that was most evident with the "r" sound.
My parents were advised that I would need significant amounts of physical and speech therapy to compensate for my various difficulties. The only dilemma was where to find it and how to pay for it. My parents - a truck driver and a school teacher - made a decent middle-class living, but we were far from rich. Then I got lucky again, because I lived, by that point, in Massachusetts.
In the early 1970s, in response to several scandals in the Commonwealth in which children were either refused entry to public schools, or warehoused in facilities that barely educated them, the Massachusetts legislature passed one of the first comprehensive laws (known by its original section number - 766) guaranteeing children with special needs the educational support the child needed. I entered first grade the year after the law was passed, and was the first child evaluated in my city under the statute - sometimes it does help to have a parent who is an insider in the school system.
Under Chapter 766, the child is evaluated and a special education plan put into effect. My evaluation, as it's been told to me, concluded that I had "mild to moderate, gross and fine motor control impairment." The plan included speech therapy 2 - 3 x per week, and special physical education 3x per week, with additional exercises with may parents at night.
For anyone who has undergone physical therapy knows, it is a grueling and painstaking process. That's particularly true with brain injuries, as the point of therapy is to train the non-injured parts of the brain to take over tasks for which it may not be intended and to teach the patient coping strategies to handle those things that can't be repaired. The only way to do this is repetition - performing the same task, over and over and, little by little, the task gets a little easier, a little more controlled. For me, this meant hours of basketball freethrows for my eye-hand coordination; hours of picking up buttons and clothespins, trying to increase the number I could hold; hours of squeezing those hand grip stregtheners; hours of copying letters to improve my control of a pen or pencil; hours of walking along a balance beam. In the first grade the special phys ed teacher, whose name I sadly cannot remember, set the balance beam at it's lowest setting, then piled rubber mats up until only about 1/4 - 1/2 inch of the beam was exposed. it took then entire school year, walking that damn beam over and over, before I could make it from one end to the other without falling (and I mean on my rear end) off. When I finally achieved it, all the other kids and therapists who were working in the same gym applauded.
Of course, I hated every second of every minute of the therapy. It wasn't only that my fellow students referred to it as my "retard gym," because children are so wonderful. It wasn't even that the need for therapy made me feel different, and what kid wants that? I really hated it because the improvements I was making were so incremental, so hard to spot, that to me it was just failure after failure. Hour after hour of being reminded of what I could not do. My parents would not let me quit, though even as I turned every night's additional therapy into a full-on battle.
The information about my disability didn't seem to ever get to my regular gym teachers however, because I still had to take that as well. Coaches would call me a sissy because I would protect my head rather than catch a baseball while in the outfield - apparently they didn't believe me when I told them I literally could not see the ball in the air, because my brain simply cannot track something that small and fast - it's why I don't golf now. That made regular gym something of a nightmare, and didn't help with the bullying.
But I did make improvements. I started building model cars as my fine hand coordination improved. By the second grade I could manipulate a button well enough to be able to wear jeans to school. By the time I was nine, I was finally able to ride a two-wheeler without training wheels, although I actually fell right off the bike when I realized I was riding it without anyone's assistance. (To this day I cannot ride "no hands," however, and cannot ride on the back of a tandem bike. That's because the only way I can keep my balance on a bike is to constantly adjust the front wheel to compensate for whichever way I am trying to fall.) At the age of 12 I figured out how to snap my fingers.
The speech therapy went even faster, and I was able to stop that after the second grade, although I never could roll my r's when studying Spanish in high school and college.
At the end of the sixth grade, we all met - the principal, my parents and the experts in charge of my treatment. It was decided then that they could do no more for me, and with the move to junior high and changing classes every period, there was no way to work the therapy in anyway. Instead, they recommended taking me for a couple of years to a gymnastic school after hours, to refine my overall coordination. I was ecstatic to end the humiliation of being taken out of class for the sessions, although I wasn't too happy that, at the age of 12, I was put into a class with 6-year-olds at the gymnastic school my parents picked - that was my equivalent level of physical coordination.
I did about three years at the gymnastic school - being 6' tall and built like a linebacker guaranteed I would never be a great gymnast, no matter my physical abilities, but the classes clearly helped me better understand my body and control its movements. I continued to make progress in high school and college, taking up running in the former and learning how to ski in the latter, although I couldn't manage pure parallel turns until I got on parabolic skis for the first time in the 90s. In my 20s I actually took up my first sport, and the once fat kid who couldn't play sports, could be found all summer long on various fields in the DC area, playing Ultimate. Apparently a flying disc (aka "Frisbee" although the company that owns the trademark on that name doesn't like it being used to describe the sport) is big enough for me to see in the air.
Even with all the improvements, I still live with the disability. I don't wear a watch, because I tend to throw my arms out a lot to steady my gait, and kept breaking watch crystals on walls. I only use plastic glasses and unbreakable plates until company comes, because I break glassware and fragile items far too often. I can't whistle, and my sense of smell is so bad I purposely throw milk out two days before its expiration, because I can't tell when it goes sour. I walk in a slightly stooped over fashion, because I am constantly examining the ground in front of me for obstacles or hazards that could make me trip. I count to myself when I got up and down stairs; it's a way of creating a rhythm to help me navigate. I still average about one serious fall per year, though and I can still fall upstairs; in fact my shoes always have scuffed toes, because I constantly catch them on the next step as I'm climbing stairs. I also likely will need knee replacement in the next decade, because my unsteady gait has put so much strain on them that I have significant cartilage damage.
I know, however, how lucky I am - lucky that a medical professional made an intellectual leap that saved my life; lucky that my parents were willing to put up with the stress and strain of raising a kids with special needs; lucky that I lived in a progressive state; lucky that the public school had dedicated professionals who were willing to work with me, and able to inspire me to continue fighting, even when I was convinced I would never get anywhere. And I'm proof that the human body and brain can come back from significant damage and achieve amazing things.
[Side note: in the early 1990s, the Washington Post published an article in their Health section on Group B strep syndrome, which cleared up a major mystery in my life. Turns out something like 1/4 of all women have this form of strep in their bodies and can pass it on to babies during birth; it doesn't cross the placenta. The bacteria is very dangerous in those with weak immune systems, and one of the diseases it can cause is meningitis. It is highly likely that was the reason I got ill in the first place. I urge any Kossacks who know someone pregnant to make sure she's tested or this type of bacteria. I simple course of antibiotics during delivery can prevent transmission to the baby.]