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Looking Back on 25 Years from Uhuru Peak

September 28, 2013

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The sun was bright, the sky was blue and the air was cold as I looked down from Uhuru peak, the highest point in Africa. The summit was crowded and I was tired so it was hard to reflect on the meaning of it all, but this moment was over a year in the making, in some ways 25 years in the making. This was not my first attempt at Kilimanjaro. I’d been there a year before, had gotten bronchitis along the way, and was stopped 700 shy of the summit. Before I was even off the mountain, I knew I would be going back. Now standing on Uhuru peak, I had done it.

Twenty five years earlier, my life looked very different. I was thirteen years old, stood just under four feet tall and was only expected to gain a couple of more inches before I stopped growing. That all changed the day I met Dror Paley, the top limb lengthening and reconstruction surgeon in the world. On that day he explained how through three surgeries I could gain close to a foot in height and bring my arms more into proportion as well. Accordingly, in 1988 I started a journey that would not only change my life, but also show me the fun and satisfaction that can be found in achieving goals that many feel you should never have to begin with.

The details of my experience have been well documented, definitely by Dr. Paley, and in various news outlets over the years. June of 1988 is when this began, or it began in March when I first met Dr. Paley, but June was my first surgery, on my lower legs. I had no idea what I was getting into and the first weeks were hard. I gained four inches in six weeks, which was really too much for the muscles to keep up with. Fortunately Dr. Paley slowed things down a bit from there and the rest was easy, at least in comparison. Going into this, I had only planned to have the one surgery, I figured that would be enough. And this one took a while. I was in frames for seven months, casts for another month and then had close to a year of physical therapy before I was back 100%. That did not slow me down though, and seven months after the frames were removed, I was playing varsity soccer my freshman year of high school.

Somewhere during the down time I started to think about doing my arms. Most people think of height only in terms of length, but especially when you're small, height can also be measured in reach. And Dr. Paley promised me the arms were easier. So, in June of 1990 I had the second procedure on my humeri. Dr. Paley was correct, this was a lot easier. Ironically, this is also the procedure where I had my only complication, my left humeri preconsolidated and had to be rebroken. As a result it was about a month behind my right arm, but even with that complication, the procedure was soon over and that's when Dr. Paley started talking to me about my femurs because he wanted a completed product.

For some reason, ever since the beginning, the femurs were always the procedure that concerned me the most. I'm not sure why. People who had undergone both tibias and femurs said the femurs were more painful and part of me did not see the point. But Dr. Paley wanted a finished product and as anyone who knows him understands; when he wants something he usually gets it.

Accordingly, in June of 1991 I started the femur lengthening. This proved more difficult. My first two procedures had been done with Ilizarov frames, the third was lengthening over nail and the procedure took over fifteen hours. I had to spend two days in intermediate care afterwards and I was not allowed to walk or even stand during the entire lengthening phase. In some ways my worst fears had been confirmed, this was the worst procedure, not because of pain, the pain was minimal, but rather because I was so limited. I do not handle physical limitations well. But as with the prior two, in the end it was worth it and when I stood for the first time I was over five feet tall and there was no question I had made the right decision.

We soon discovered I was the first person in North America to complete all three stages of limb lengthening for dwarfism. While this procedure was becoming better known, there were still only a small handful of surgeons performing it in this country and initial results were starting to become known. I quickly saw how fortunate I was that I had found Dr. Paley. Other surgeons my parents had spoken with had gotten some terrible results and that could have been me. This just shows how important it is to have a surgeon who knows what he is doing and in this Dr. Paley is the most experienced limb lengthening surgeon and without peer.

In the immediate aftermath I was too busy catching up on life to really reflect on the greater meaning. It was the middle of my junior year of high school, I had to focus in order to graduate on time, which I did, and this experience quickly faded into the background. That soon changed when I found out that other people born with the same condition I was were making judgments about my decision and the surgery itself that did not match my experience.

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Extended limb lengthening for dwarfism has always been a controversial subject and nowhere more so than in the little people community. From the day I had my first surgery to the day he died, my original orthopedic surgeon, a pioneer in the treatment of little people would not speak to me or see me. But here I suddenly was, the first person to do this and I had fabulous results. Many did not believe it or just did not want to. Some tried to dismiss me saying I was one of those who could not live with myself as I was so I had to have this. I started pushing back to what they were saying about me, but even more, the larger claims they were making about the procedure being unsafe and telling people it would leave them crippled. One just had to look at me and what I was now able to do to know that was not reality. To this day some critics say you can die from this procedure, which is utter nonsense. As with many things, this procedure is a personal decision everyone should be able to make without being judged for it.

It’s now been 25 years since I started all this and over twenty that I’ve been living with longer limbs. The changes this made in my day-to-day living are too many to count. When I drive I don’t need extension pedals. When I reach onto a shelf at home or in a store I do not need to make sure I have a stool near by. When I get dressed I put clothes on that did not have to be altered, I can just buy them in the store. These are little things, but combined they make a big difference.

When I reflect on the major ways this has changed my life, beyond everyday living being easier, two main things come to mind. First, this experience helped me develop the strong commitment I have today to make a difference and help the less fortunate. Second, it showed me how much fun it can be to overcome physical challenges and push yourself to do things that many people just never think of.

So 25 years later I found myself standing on top of the highest mountain in Africa, one of the seven summits. The climb had taken six days and we’d spend another day descending. On each of those days there were challenges, even with my longer limbs, but without Dr. Paley and this surgery I never could have done this. Some I’m sure say "so what?" Some definitely think I’m crazy for even coming up with the idea. My longer legs helped me to scramble over the rocks and up steep steps. My longer arms helped me to climb the Barranco Wall. My more aligned back helped me get through the long days of uphill hiking and climbing. And there I was on the summit. In one way the accomplishment is mine, but in another it’s just one more part of a group effort that spanned 25 years and started the day I met Dror Paley. For anyone considering this, he can help you reach places you never dreamed of. He certainly did that for me.

I’m not sure what’s next. There are six summits to go, not to mention many other mountains to climb, literally and figuratively as we all work to leave this world a little better off for our having been here. I do know I’ll never lose what developed many years ago: the idea that that to whom much is given much is demanded, the focus on those who are less fortunate than I am, the idea that one person can make a difference and will either by what he does or what he does not do and a desire to dream big and keep finding new challenges to overcome. Without any part of that my life would just be boring.

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Washington D.C.