Standing Firm Through Disappointment

I was born three months early with a condition called Amniotic Band Syndrome, which caused the immediate amputation of my left leg, below the knee, and digits on both of my hands the moment I was born. For the most part, my childhood was happy despite having to endure routine surgeries on my leg, prosthetic fittings, and bouts of physical therapy. I had a couple of reconstructive surgeries on my left hand too. Despite the multiple surgical inconveniences, I had great friends who treated me as if nothing were different and a church and school community that supported me. My parents ensured that I had everything I needed to adapt and excel, despite the financial hardships brought about by chronic conditions.

Despite these positives, disappointment and frustration were, and still are, a common obstacle for me. Even as a man in my 40s, there is not a week that goes by where I do not look at my leg or hands and think, “If only..” or “What if…” To this day, I have not forgotten the physical pain and nausea that my disappointment brought on after meeting with a pediatric orthopedic surgeon to talk about the reconstruction of my hand when I was in second grade. The hope was that the surgeon would be able to rebuild my left hand and lengthen a couple of the shorter fingers. As the surgeon gently held my left hand, she told my parents and me that my hand was as good as it would ever be. There was no surgical intervention to assist. It became painfully evident that I would look at a severely deformed left hand and multiple scars for the rest of my life. I knew others would also see this deformity, and I would have to figure out ways to adapt to circumstances or accept that there would be things I could not do with that hand. I did everything I could not to burst into tears right then and there or on the drive home. The disappointment of that conversation negatively affected me for weeks.

There are four things I do to help me stand firm through my disappointments.

First, I acknowledge that it is okay to feel disappointed and frustrated about my condition. I am comfortable sitting with my feelings, but I make sure that I do not let them consume me.

Second, I realistically assess the reality of my situation if my disappointment focuses on a particular circumstance. For example, as a pianist, many pieces require the left hand to stretch out so that it can play in octaves. No matter how bad I want to play those octaves, I cannot. The reality is that it is physically impossible for me. But many times, I can improvise and adapt and play a fifth instead. It gives a similar sound to the ear, and people are usually not even aware. If I cannot adapt, I do my best to play the passage and move on. That is all I can do.

Third, I practice gratitude. Despite my physical limitations, there are many things to be grateful for. I have a beautiful wife and wonderful daughters who love me and do not think of me differently because of my leg or hands. As referenced earlier, I found that I could still be a strong musician and leader. I am grateful for my mixed martial arts coaches. They work with me to help me be the best physical version of myself that I can be. Identifying wins and reframing situations through gratitude helps me stand firm and move forward.

Finally, and most importantly, I cling to hope. More than likely, I will not ever experience what it is like to have two legs and ten fingers until I get to heaven. Unless, modern science and medicine make huge advancements in my lifetime. My favorite passage in the Bible is Isaiah 40:30-31. “Though youths grow weary and tired, And vigorous young men stumble badly, Yet those who wait for the LORD Will gain new strength; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary.” When I reach heaven, I plan on soaring, leaping, running, and even playing octaves with my left hand; but until then, I will hope in God. He is my strength, provider, and the future chapter of life where all will be right and whole.