Matt Bulow’s Story:
I am an amputee, a diabetic and a cancer survivor. These challenges have changed how I live my life, but they do not define my life. They are merely obstacles that every day I must overcome so I can concentrate on what does define me and what really matters; my roles as a father, a husband and a prosthetist.
In no way am I minimizing the difficulty of living with an amputation, diabetes or fighting cancer. It is hard and some days darn near impossible. In an odd way, I consider myself lucky. I survived cancer. Many do not. I had the energy and the blissful naivety of youth to help me deal with the amputation. Most amputees are in their senior years and have additional health issues. My diabetes is an inconvenience, but it is controlled and no longer a threat to my health. My road in life has not been easy, but it has led me to amazing places. On a different course, I may not have met my wife who has given me three wonderful children. A different direction could have led to athletic mediocrity rather than collegiate honors, a national tennis title and a world record in the Paralympic Games. Without the challenges I faced, I would not have pursued a career path that has led me to reduce pain for thousands of people and help them live a more active lifestyle – what amazing rewards!
What follows is my story – the lows and the highs. It was a difficult decision to share the low points because, frankly, I shudder at the thought that someone would feel sorry for me or my condition. I finally came to the decision to share so my patients can understand how the hurdles put before me have shaped me as a person and as a prosthetist; and why it is so important to me and all Bulow clinicians to spend the extra time with patients getting the fitting exactly right, addressing concerns and most importantly, helping everyone get back to where they want to be.
Cancer
In the winter of 1983 I had three passions. They were, in this order: playing sports, practicing sports, and thinking about sports. I was a fanatic, especially for basketball, and I was good. My team was a few games into the season and I was the second leading scorer in the league, determined to become first. However, I had a nagging pain in my ankle that just would not go away. I ignored it for as long as possible, even after a knot formed and started to grow. Eventually, my parents noticed I was favoring it and had me get it checked out.
A quick look was all my doctor needed to realize I should see a specialist as soon as possible. After a biopsy and an excruciatingly long wait for test results, the diagnosis was cancer. I was 14.
My parents were amazing through the entire process. Even though I was young, they didn’t sugar coat the news or try to shield me from the reality of the risks I was facing. In fact, I was on the phone along with my parents when the medical team revealed how they wanted to treat my cancer. The doctors recommended amputating my right leg below the knee and chemotherapy treatments.
My parents were obviously concerned about the lifelong impact of this decision. However in this snapshot in time, they were immediately worried how their 14 year old sports fanatic son would react to losing a limb. My dad remembers that I never cried and was concerned that I was hiding my feelings too much. What they didn’t understand is that I was comfortable with the recommendation to amputate. In fact, the decision actually made me feel better. It was the cancer that had me scared out of my wits. I was much more concerned about losing my life than my leg. Finally, my fear of the unknown was gone. I had a plan of action. It was a tough plan that required sacrifice and a long road to recovery, but it was a plan with a goal and I could deal with that.
The six months of chemotherapy that followed is actually my worst memory of the entire ordeal. As an athlete, the prolonged feeling of physical illness was the most challenging struggle to overcome. When the treatments were finally over I remember thinking that if I can get through this, I can get through anything – a feeling I would encounter many more times on the road to getting my life back to where I wanted it to be.
Amputation
The reality of what my amputation meant did not hit me until much later that year. In 1983, the medical community waited a long time to fit a prosthesis. I went back to school on crutches and about three to four months later I was fit with a clunky hard socket device held on by a belt. I put it on and went straight to basketball camp.
In my mind, I not only believed that I could pick up where I had left off as a star player, but I thought I would actually be better! I had been working on my shot and could not wait to regain my mobility. Needless to say, camp did not go the way I had hoped. When I got out of the car after that first day of camp, the weight of what had happened finally hit me. I stopped in the middle of the driveway and broke down. I could not believe that so much of my hard-earned talent was gone. Though I practiced and got better, I could not get up and down the court. My leg was throbbing from the repeated impact in the hard socket and the skin around the belt and strap was raw and bleeding. Alone in the driveway, standing under the basketball hoop, I hit my low point.
As children, we are not as accustomed to dealing with pain and disappointment and feel these emotions in a devastatingly deep way. However, the upside to youth is that these emotions tend to pass much more quickly. While I do not know if I could ever muster the strength to return to that moment and relive it, I would love to regain—just for a second—a bit of the blind determination of youth that followed.
In the driveway that night, I faced a crossroads. In that moment, I wanted to feel sorry for myself; to lower my expectations for life; to take the easy road. The other choice was to keep fighting to get back to where I wanted to be; to acknowledge this obstacle in front of me and start climbing over it; to accept that I would have to work twice as hard and twice as long as I used to just to come close to my former level of mobility.
It was an easy decision.
The next morning my alarm went off, I put on my basketball shorts, strapped on my leg and headed back to basketball camp. In the days that followed, I got better. I even got good again. At the end of camp I actually won the dunk contest! Yes, the goal was lowered to dunk-range, but I won and I was on top of the world. In the short span of a summer basketball camp I hit my low point, rebounded, and got my life back on track.
Diabetes
At 16 I started to experience more symptoms familiar to many amputees. I didn’t feel well. I was pale, losing weight and had no energy. My blood sugar was through the roof and a trip to the doctor confirmed diabetes. I was still struggling to regain my mobility and now I lost my spontaneity. Now, my life had to be planned in advance. I was already a pretty serious kid and now I had to eat at a certain time and test my blood at a certain time, making it hard for me to be a fun-loving person.
I dealt with this by simply adding it to the list. I treated my diabetes as another inconvenience that slowed me down, but would never stop me from accomplishing my goals.
Getting Back to Where I Wanted to Be
For me, becoming “normal” again meant being very active. I think it helped that I had a passion, which was sports, to help me stay focused on physically rehabilitating myself. I do not know if it was my young age, strong support from family and friends or just staying committed, but I rarely doubted that I could still be an athlete. In the end I decided “it is what it is” and figured that everyone has some level of challenge, amputation being mine.
I continued to play basketball in city leagues until later in high school when I discovered my new love – tennis. A couple friends of mine and I frequently went over to Tennessee Tech to play racquetball but the courts were often full, so we started bringing tennis racquets and hitting the ball around on the TTU courts across the street. In a matter of days, I was hooked.
I am fortunate that once I get fully committed to something, I work very hard on achieving my goals. I was 100% focused on walking-on at TTU and making the varsity tennis team. My best friend at the time had a scholarship to play there and we practiced for hours every day until I got good enough to make the team.
Once on the team, I remained committed and set my goals even higher. I lettered all four years on the Golden Eagle tennis team, captured the 1988 U.S. National Amputee tennis championship and won two bronze medals in track and field at the 1988 Olympics in Seoul, South Korea for the U.S. Paralympics team.
I continued training and competed in the 1992 games in Barcelona and the 1996 games in Atlanta, capturing two more bronze medals. I held the world record for long jump from 1993 to 1996.
Today, at the age of 43, I no longer compete for world records or national championships, but I stay active playing tennis, running, cycling, and keeping up with my kids. And I continue to set new goals – recently taking up long-distance running. I frequently join Bulow patients and staff members in races to raise awareness or donations for important causes. In a lot of ways, I didn’t just get back to where I wanted to be after my amputation, I got to a place I never dreamed I could be, and accomplished things I never thought possible.
Becoming a Prosthetist
Late in high school, I realized I wanted to be a certified prosthetist. I knew that my experiences and my understanding of what an amputee goes through would be a great asset to patients who, like me, just want to return to their normal, happy lives.
As an active kid and an athlete, I burned through many prosthetic devices and pushed them beyond their limitations. These actions took a toll out on the prostheses and my body, but it gave me a deep understanding of what “the right fit” means. Many of our new patients are seeking a second fitting to try to reduce pain or discomfort felt when using their current device. Along with our team of prosthetists, I have been able to use my experience to create systems and processes to allow us to solve these problems and help our patients get back to their jobs, hobbies and become active again with their families and friends.
Our patients come to us from all over the United States for our customized prosthetic solutions. We get to know patient medical needs and personal and professional goals. After we prepare a prosthesis, we test and refine fittings over several days, ensuring optimal fit. Our ongoing goal is to help our patients reach their highest level of mobility.
One of the most important lessons I learned by experiencing amputation first hand is the fear of the unknown. Often it is this fear that is worse than reality. I am sensitive to this fear with patients and make sure all Bulow clinicians take the extra time to answer questions and set clear and realistic expectations for recovery and mobility.
An amputee understands that mobility and comfort are lifelong issues that change over time. The stump changes shape, the body gains or loses strength, hobbies come and go, medical conditions add complications and prosthetic technology evolves. Our relationships are life-long and we are always focused on delivering the right fitting, the right technology and above all, the right ongoing support to get you back to where you want to be.
I am an amputee, a diabetic, cancer survivor and, above all, a very lucky man. The challenges I’ve faced have led me to countless blessings and given me experience and insight to help thousands of people live more enjoyable lives.
Thanks for taking the time to read my story, I would love to hear yours. Click on the “Chat With Matt” link below to share the challenges that you have faced and how you have overcome them. –Matt
