MY STORY
I am a 49-year-old husband and a father.
Prior to my spinal cord injury, I lived an extremely full life in New York City. I worked as a restructuring investment banker with constant late nights and business travel.
On weekends, I could usually be found hiking or skiing with my family in the Adirondack Mountains near Lake Placid, New York. In addition to burning the candle at both ends with work and family, I trained for triathlons and became a three-time Ironman.
Following my accident and in an effort to recover the use of my hands, I moved to Los Angeles, California to work with the doctors and scientists at UCLA. I now spend my time in physical rehabilitation, working on my own startup business (see Botanicaide.com), consulting, trying to be an engaged and supportive husband and father, and raising money for this foundation. Any help that you can provide my foundation to fund cutting-edge spinal cord research would be greatly appreciated.
I suffered a catastrophic spinal cord injury at the age of 44. With my level of injury at C2 (the second vertebra from my brain) and no response during the evacuation to the trauma center, it was unclear what kind of life, if any, I would have left. Thankfully, after being in a coma and spending nine days in the ICU plus more than 100 days in rehabilitation, I was able to go home with my wife and ten-year-old daughter. But clearly, as the respirator that I still relied on in order to breathe would attest, none of our lives were ever going to be the same.
The issues, problems, and coping mechanisms regarding my new way of life are enough to fill a book. (Indeed, I may write one at some point.) However, they take place on various levels. For example, the most intimate and painful issues revolve, somewhat obviously, around interactions with my family. My paralysis leads to extreme physical and emotional isolation. Even when I am near them, there is always a tremendous gulf. In a crowded space, such as a farmers’ market on a beautiful Sunday morning, most of my attention ends up focused on avoiding holes in the pavement and navigating so that people don’t fall on me. When at home amongst ourselves, I cannot give them a hug. Moreover, due to my constant nerve pain, even receiving a hug is often impossible.
Controlling my iPad and iPhone with a combination of voice commands and a mouthstick
Undergoing neurological testing
Determining the strength of nerve impulses with and without electrical stimulation to the back of the neck
On a different level is the inability to carry out the most basic aspects of life. I cannot go to bed by myself. I cannot roll over in bed. I have to breathe through a machine when I sleep . . . and when I wake up, I have to lie by myself until someone helps me.
While patience may not have been my strong suit previously, I am now required to display it like a zen master.
My mind is constantly racing, but I am trapped by my body. If I want to know how something feels, I have to have it rubbed against my face (where I still have the sense of touch). If I want to know if my body is starting to get cold, I have to have someone feel the temperature of my knees. If I want to interact with people, I am largely limited to utilizing an iPad or iPhone with the assistance of the stick that I hold in my mouth (thanks Siri, but you’re not that much help). The lack of independence to do the most basic things in life is extremely frustrating.
Of course, gone too are all of the fun things that contributed to my sense of self:
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Travel and adventure with my family;
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Teaching my daughter how to scuba dive;
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Sitting in the snow on the side of the mountain, cheering for my daughter while she ski races;
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Spending hours riding through mountain roads on my triathlon bicycle;
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Playing with my dog;
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And many other wonderful things that now only live in my memories.
Nevertheless, if you meet me, you will see that I am the busiest quadriplegic you know—and this foundation is one of the most important things that I can do with my time. While there are many well-funded doctors and scientists conducting research on spinal cord injury, there is very little money going to the recovery of upper-body mobility. Furthermore, few people have any insight into the complex challenges of quadriplegics, as opposed to paraplegics. When I left the rehabilitation hospital and returned to New York City, I could not find a doctor who was willing to work with me on my therapy needs. In fact, the head of the rehabilitation unit at a very large public university based in New York City told me to simply go home, as there was nothing they could do for me. Rather than let this bring me down, I turned his words into a rallying cry to push myself harder.
Working with someone like Dr. Lu at UCLA required me to move across country in hopes that he would work with me. Dr. Lu was one of the only people anywhere in the world helping to restore the use of the hands for those who suffered spinal cord injury. I have had offers to participate in several studies, some of which would only help medical science and others which might help me directly. But, what real value is there in recovering some use of your legs if you cannot use your arms and hands?
I am dedicated to assisting the funding of doctors who are doing the best research and achieving the most life-altering outcomes. My goal is to keep them focused on medicine, rather than on filling out grants requests.
Dr. Lu’s work is groundbreaking and in need of support. While I am hopeful that I will be one of his future success stories, I am also hopeful that I can help his lab grow and create opportunities for the recovery of many more individuals like me.
