|My name is Joel William Davis, Jr. and I was born in 1951, a month prematurely.The doctors didn't think I would make it, but my mom knew I would. As a "preemie", my first three years of life were filled with doctors and many antibiotics. As a result of the antibiotics, I developed thrush and my pediatrician suggested that I take part in a study of thrush being conducted at the National Institutes of Health in Bethesda, Maryland. While examining me, the doctors noticed "knots" on my knuckles and asked my mother if she had noticed any others. She pointed out that I had the same "knots" on my ribs, and soon after, I was diagnosed with MHE. I was two years old at that time.
This began a long series of surgeries to remove the growths when it became necessary…surgeries on shoulders, hands, elbows, wrists, ribs, hips and ankles. I have had between 30 and 40 operations, most of which were done before I was eighteen years old.
While other kids went to summer camp, most of my summers as a youngster were spent in hospitals. By the time I was ten years old, I had become a whiz at recovery. By the second day, I was usually mobile and had started physical therapy, sometimes on my own. I took to crutches like a duck to water, and as an adult, I have amazed many doctors with the speed of recovery.
I am truly grateful for many things in my life -- not the least of which is having been born to parents who allowed me to discover my own limitations. They never told me that I couldn't do something because of MHE.
There were times when MHE interfered with normal childhood activities, but I found that out through trial and error, not through any restriction by my parents. I am sure that there were many times when it was hard for them to look the other way while I did something that was probably going to hurt me, but I will always be grateful that this is the attitude they had.
Other than being different from all the other kids, probably the hardest part of MHE was the feeling of being alone and totally powerless. I remember one summer when the feeling of powerlessness seemed to really hit home. While my brother and sister were having a normal summer, my summer, too, was shaping up "normally" for me. I was in the hospital for surgery. The surgeon announced, as he removed the stitches from the first operation, that he wanted to do another surgery, "while I was there." My first reaction was, "Why not? What's another week in the hospital to me?" So, we did the second surgery. A week later, as he was removing those stitches, he said, "Let's do one more." I said, "The last one for the summer?" "Yes," he said. A week later, you guessed it. "One more," he said. And I remember saying, "No, I've had enough!" And I clearly remember him saying, "I have your parents' signature -- you're going under tomorrow."
While I understand that the reason for doing all these surgeries during the summer was to allow me to go to school and live as "normally" as possible the rest of the year, and while I fully believe that my parents would not have intentionally done anything to harm me, regardless of the reasons behind the surgeries, no one had taken into account what all this was doing to me mentally. And to make matters worse, I was given no say whatsoever in it. My breaking point had been reached -- and I broke. I made my feelings known to my doctors and my parents. From that time on, I was only scheduled for one operation a summer, and the doctor consulted with me about the schedules beforehand. This did not make me feel any less alone, but at least gave me the feeling of having some sort of control over my own destiny.
One of the hardest things to live with was the feeling of being all alone with MHE. In the time before computers, and before most orthopedic surgeons could even say multiple hereditary exostoses, I had no way of knowing that other MHEers existed. As far as I knew, this was something that had been visited on me, and me alone. Only once during all that time did I see or hear of anyone else with this condition. Once, in a clinic waiting room, a doctor pointed to a little girl, and said, "She has the same condition you have." He took me back to his office immediately, and I was not allowed to speak with her. She was gone by the time I came out, and I was left with a lot of curiosity about another child like me -- and my world of unanswered questions -- with seemingly nowhere to turn to get those questions answered.
Bad enough, that I had a condition that made it necessary to be far too familiar with hospitals and the medical world, and no way to fit into the world of all the "normal" children. By now, I was developing, not as a normal child, but with the standard MHE body. While my trunk is normal, my arms are shortened and my forearms are slightly bowed, my hands and fingers are extremely small. My legs are also short, although my standard response to someone who says, "You have short legs." is, "What do you mean, they're short? They reach the ground!" And while my parents had always gone to school at the beginning of each year and explained to the teachers and other students about MHE, this did not make being the last kid chosen for any team any easier to bear. I wanted so desperately to be just like all the other kids. Other kids didn't have to spend summers in the hospital having surgery. If anybody had even had one surgery, it was a tonsillectomy. Nobody else sported the scars that I carried -- but these were not "bragging rights" scars. They just served to set me apart more and more from those kids I wanted to be just like.
With all this, however, I would like to say how grateful I am for all the good doctors I've been fortunate enough to have dealt with over the years. To those of you young folks out there dealing with what I dealt with many years ago, I say, "Hang in there. You really will make it." Believe me when I say, it really does get easier as you grow older.
To all you parents of MHEers, I can only beg you to treat your special child just like all your other children. This was, without a doubt, the best thing my parents did for me, and enabled me to grow up to become the proud MHEer I am today. I beg you to look beyond the seeming acceptance of this condition -- and if necessary, push your child into talking about his/her true feelings. If I would fault my parents in any way, it would be simply that they took my acquiescence as acceptance, and I was an adult before I was able to express my anger over having been born "different". Encourage your child to join a support group; encourage him/her to find his/her own limitations even when you know that the goal has been set too high, and is probably unattainable.
I cannot begin to express how grateful I am that at 49 years old, I have found out that I am not the only person on the face of the earth with MHE. Thanks to the computer, I now know that there are far too many of us, and none of us need feel that awful kind of aloneness that I have felt all my life. One of the things that this has brought home to me is that I am truly one of the lucky ones, and not the most (and only) unlucky person in the world I had believed myself to be.
I will be more than pleased to answer any and all questions from anybody. You can contact me through email at firstname.lastname@example.org.
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