I often wonder what it’s like to be like everyone else out there. How great it would be to do things most consider easily accessible and within reach. I believe in myself; it’s not really about that. Sometimes I just feel alone, cold, and bitter after considering life in general. Then I ponder a thought: there are too many hurdles I’ve already jumped over. I always seem to get up off the ground and dust myself off. I realize I am either dumb or tough or maybe, a little of both. I feel as if I have seen a lot in my 35 years, and the years have broadened my mind both in endurance and faith, both which I find very useful. When I was a young boy growing up in a small family I noticed I never quite fit the average status so many of my friends fell into. I found things would take me twice as long to do, and being graceful wasn’t me. My father and I shared something that set us apart from almost everyone in our community. We were both living with Charcot-Marie-Tooth disease. Being a young boy stepping into my teenage years, this was very scary for me. I noticed a change in my abilities year after year, but the prime of my youth kept me from seeking further help. My father wore special orthopedic shoes referred to as “claw boots.” I remember the look of them sent terror threw my mind daily in fear of becoming disabled and left on the sidelines.
My youth slowly slipped away from me, and most of my time was spent sitting down or nursing a pressure ulcer that had developed on my foot. Years would pass, and I continued to work and lived a semi-normal life. My feet suffered a severe case of foot drop, and my hands were becoming increasingly weak. I would fall daily and drop things I had intended to hold on to. Often someone would notice my struggles with walking. I would choose to dodge the question and change the subject to avoid any pity or a medical suggestion. Mentally and physically, this was all a very heavy load to bear.
As I approached my 30’s I had noticed big changes in my condition and was scared to death of what was happening. In the meantime, I had met a young lady and our relationship had blossomed into marriage. I was truly the happiest I had been with my present life at the moment. The only thing amiss was my poor health and the reckless up keep of my body. I had been keeping all of this a secret from my wife in fear of losing her forever, a thought that was also a big part of my fear. She knew deep down that I was hiding a health issue from her, but out of love had never questioned my wellbeing. Late in 2011, things really took a turn for the worst and I found myself very sick. I knew in my heart I would have to begin to accept help. An infection was circulating in my body causing me to totally shut down. Time was of the essence as I paid a visit to my local emergency room. I was suddenly asked to make a decision that would change my life forever–amputation. The doctors told me that my feet were so infected from my reoccurring ulcers there was no hope in saving them I wondered if all the years of avoiding doctors, self diagnosing and self treating had brought me to this point. Instantly, I lost it, emotionally crying out and asking, “Why me, God, why me?” But there was no time for me to think about what had to be done, and I had to pull myself together quickly. When I woke up after surgery and I looked down, all I could see were bandages and two machines with wires and hoses draped over everything. I couldn’t see my legs at all but I was sure things were different than they once were. I felt fine, just tired and surprisingly in minimal pain.
The team of surgeons told me that in two more days they would do the final surgery on my feet to amputate them. Here we go again, I thought, with lots of emotions flowing through me. But the second surgery also went well, and I was thankful to hear the words of encouragement the doctors gave me. The amputation on the right side left me with half a foot. On the left side the amputation left just the heel, with a bone fusion of my remaining heel.
I endured months of recovery and being non-weight bearing, close to six to be exact. I appreciated every step I could take after I had the pleasure to stand. My prosthetics were custom-made to support my weight and were very cumbersome, but I had missed walking so much, I pushed that thought aside and had a huge smile on my face. I was still burdened by a small sore along the suture line on my right foot that would not heal. Keeping an open wound a lengthy amount of time raises the risk of problems developing, and sure as that thought replayed in my mind, I became sick with a very high temp and a throbbing pain in my right foot. I rushed to the doctor right away, but it was too late, I had contracted MRSA, a very dangerous infection. The decision was made to amputate below the knee on my right leg. The surgery went wonderfully and I was up and walking in a few months time. I remember the doctors telling me the more weight you lose, the better your life will be. I began counting calories and within a year’s time, during recovery, I lost 125 pounds. That year I accomplished so many great things for myself that I never thought I could do. I hiked, went mountain biking and fished regularly with minimal problems. Then, out of the blue my left foot began giving me a lot of problems. I had developed another ulcer caused by pressure from the prosthetic. This was the same spot that never seemed to heal completely. After discussing options with my surgeon and prosthetics team I made the decision to have another below the knee amputation. I awoke after surgery to the sight of no legs below my knees, a rather humbling feeling.
Today I am walking, with Charcot-Marie-Tooth by my side. I also am a bilateral amputee who is active, never wasting a minute of my precious time. Many things have come and gone in my past three years, and they have taught me a valuable lesson in life: never give up. If we honestly don’t think we can continue, we are not looking deep enough. The will to survive is buried deep within us and sometimes it takes almost losing a grip on life to regain what you want and more. CMT and my amputations have brought me closer to the things that matter the most in life like my family. They are my rock and my number one support system. Second, I rely on my God, because with Him all things are possible big or small. Last I look to my faith, because I never knew I was that strong until I was tested. Ironically, I thank CMT for opening my eyes to see a new world, appreciate new things, and hold dear every moment I am blessed with.