'The Hidden Handicap'
I have spina bifida occulta. Like many people with this condition, I was not aware of my status until I had my back X-rayed after a minor injury. The doctor mentioned in passing that I had spina bifida occulta, about which i knew little except that my father had been similarly diagnosed under similar circumstances about 15 years earlier.
I remember him twinge in pain during a game of ping pong. He bent over to pick up an errant ball and let out an involuntary groan. He could hardly straighten up. It turned out to be a pinched nerve.
Unlike the more severe expressions of spina bifida, occulta is frequently benign, which is why so many people don't know they have it. No one really needs to worry if all that's wrong is a small part of a vertebra is missing. If it's just a little bit of the bone it's of no consequence. But if there is a deeper malformation of the bones, then the spinal tube may be affected. Certain nerves may not go where they're supposed to. Certain muscles may not function. Even when this happens it may be unnoticeable to the untrained observer, and possibly overlooked by the sufferer.
Most of the literature on spina bifida occulta mentions that it is usually a malformation of the lower (lumbar) vertebrae. 'Usually' is seldom elaborated on. If it is 'usually' the lower vertebrae, what about when it's not? There is very little information for the lay-person about this.
If the problem is just severe enough, you can expect any of a range associated of conditions to express themselves; lack of bladder control, incontinence, weakness in the legs, severe back pain...to name a few. Also, though obscura is not progressive in itself (The deformity of the spinal bones does not get worse as you age), the tangential conditions are often dynamic. If - for instance - you have missing nerves to the muscles around the lower back, then it doesn't matter how much you work out at the gym, some of your lower back muscles will atrophy. This can result in extra stress placed on the surrounding muscles and other tissues. Over time such stresses add up, causing a cascade of health issues. How much time this takes depends on how severe the condition, and which nerves and muscles are affected.
I noticed as a child that my father had a concave sternum and that his lower costal ribs flared out. I have the same condition. I attribute this deformity of the rib cage not to any direct inheritance, but to the effect of the spina bifida on our developing bones. The costal cartilage and the sternum are very flexible when you're young. The shape of the rib cage is partly determined by the curve of the spine and by the development of muscles around and adjacent to the ribs. In my case (and may father's) certain muscles just below the rib cage are weak enough so as not to properly support it and it splays out around the abdominal cavity. This also causes the the sternum and the intercostal cartilage to bend inward (This is my own theory - the normal explanation for this has to do with low bone density, which neither I nor my father have - I've never had a broken bone in my life despite some serious impacts). None of this is obvious in an everyday setting. i have broad shoulders, and with a shirt on, my chest appears normal. And it is not simply a cosmetic issue. When your sternum is spoon shaped it puts pressure on the heart cavity. There is pressure on the lungs when the movements of the rib cage are constricted.
Grade school teachers admonished me against slouching. I know now that my slouching was due to my spina bifida. I slouched because that was my body's natural position. No one ever suggested to me at the time that there was anything physiologically wrong with me.
I was always uncomfortable in my body. This was interpreted by the guidance counselors as psychological in origin. But I knew they were wrong. Why, for instance, if my inability to do pushups was psychological, was I such a good climber? Why, if my slowness at running was due to lack of will power, was I a better than average bicyclist? I had no knowledge of spina bifida when I was laughed at by others because of my physical awkwardness at sports. My pigeon-toed running - my lousy throwing - my terrible fielding. I was left feeling inadequate at virtually all the requisite sports. Though I could actually swat a line drive that made other kids notice, I was so slow that I was almost always out at first.
I was big for my age - taller than average and overweight. Perhaps this was why my parents decided to enroll me in a children's football league team when I was ten. They knew, of course, that sports had been a source of repeated humiliation for me, but they honestly believed that the problem wasn't so much my natural inferiority as an athlete, but the unstructured nature of neighborhood games. Under the watchful eye of experienced professional children's sports coaches I would be properly tutored and my latent abilities would be allowed to spring forth. I would be able to experience the masculine joy of competitive sports in a healthy positive environment. Shelly's All Stars had uniforms and played on well tended fields out in Queens. Until then I had only played on the worn out grounds at East River Park where the fields were more dirt than grass and you had to look out for broken beer bottles. Or the asphalt playgrounds of my lower East Side neighborhood. And I had to endure the ordeal of waiting while the two team captains argued over why they didn't want me on their team. Sometimes they'd work out a last minute trade to balance things out. And then the taunting of my older brother's friends after each game when I was invariably responsible for the team losing. I knew full well I was a liability and I was reminded of it over and over and over - game after game - year after year.
But at Shelly's All Stars there were only strangers. I had a clean slate. No one knew how inept I was, maybe it would be different there - why not be a little optimistic for a change? The coach will be there to help me.
My football uniform, the helmet, the shoulder pads, all seemed so alien to me, i felt like a gladiator about to be thrown to the lions. My mom sang football songs to me in the car as she drove me to the All Star's headquarters in midtown Manhattan where all us junior leaguers would climb into the Shelly's All Stars bus and be taken to Queens.
"Oh you've gotta be a football hero,
To get along with the beautiful gals!"
It was a sunny day. The grass was beautiful. Shelly (his real name was Sheldon, i think) gave us all a pep talk and assigned us our positions. I don't remember too much about that day except that I was a blocker. I was told to just keep the other kids form getting past me to the quarterback. All I had to do was use my size and my weight and push them back when the came at me. I think I closed my eyes after the first impact of the other kid's face guard against mine. I know I ended up being trampled. At the end of the day I begged my mom not to make me go back. I cried and cried. Why did I have to be put through this over and over? Wasn't it clear that I hated playing team sports? Was it really so important?
After that there would be no more pressure on me to play football or softball. I removed myself from that scene and concentrated on the things I really loved. Playing the guitar, drawing and painting, building plastic models, tropical fish, and riding my bicycle.
End Part One
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