I was going through old writings of mine and came across blog posts I wrote from MDA (Muscular Dystrophy Association) Transitions. This blog was created to give a voice to people with neuromuscular conditions transitioning from one age group to another. MDA did away with the blog but I have to say I do love what I shared on it, even if the writing style makes me cringe now, the feelings about it remain. I was in my mid-20’s, the peak of my anxiety, when I wrote the below entry about opportunity costs. I still face some of these issues but re-reading this reminded me just how far I’ve come.
“So be sure when you step, Step with care and great tact. And remember that life’s A Great Balancing Act. And will you succeed? Yes! You will, indeed! (98 and ¾ percent guaranteed) Kid, you’ll move mountains.” — -Dr. Seuss, Oh, The Places You’ll Go!
Life is said to be a great balancing act. Humans have been trying to achieve balance since 2,000 B.C. The art of measurement was appreciated in Greek and Egyptian cultures: Dike, the goddess of justice, held tight the balance scales while Egyptian God Anubis weighed the hearts of the deceased to deem whether a soul was worthy of sanctified heaven or destined for the fiery pits of hell. It seemed our decisions and actions came with a cost, some heavier than others.
Why so much thought on balance and scales? LGMD (limb-girdle muscular dystrophy) is such that if you overexert yourself, you’re done for. It demands from you a certain amount of activity and exercise, the perfect type of diet and just the right amount of rest to avoid fatigue. In the past year, I’ve come more and more to a crossroads, picking and choosing between what I want to do, what I can do, what I’m unable to do, and what my body is telling me to do. Which do I satisfy and where do I go? I’m pulled in multiple directions, anxiety and pressure building in my mind. It’s as if LGMD broke me; I used to be fearless but lately I can’t help but feel filled with fear. It can be overwhelming knowing that each decision made will set the tone for the rest of the day, maybe even the week. How do you know which voice to listen to and whether you’re making the right decision?
Being a young person with a disability comes with its own slew of unique struggles, one of which is keeping up with the rest. I was diagnosed fresh out of college when life was meant to be its most exciting. And it certainly was exciting, but not because of my all-star career, dramatic relationships or whatever it was early-20-somethings were supposed to be doing. I was traveling and discovering what it meant to have a neuromuscular disease. Along the way, I learned the tricks and trade of LGMD and attempted to put my best foot forward. But I of course tripped up. Social pressure got the best of me early on and I made poor decisions. I forced myself on solo treks into the unknown wearing questionable footwear, exerting myself physically so many times in an effort to keep up with my peers and prove to myself that I was capable. This usually resulted in me crawling back home a crumbled mess. Back from the parties and excursions where I felt I needed to accomplish something major. Back to my family who always picked up the broken pieces my self. I wasn’t yet able to accept and understand my limitations so I fought hard against them, putting myself in precarious situations. I’m not saying I did this all the time, but in retrospect (which is 20/20), I could have made better choices. Everyone has to make decisions about their lives everyday. But the cost of my actions felt greater, knowing that if I made a wrong move, I might end up paying dearly with a fall or worst yet, a broken bone.
The idea of having to choose between doing one activity over another reminds me a concept I learned about in my college Economics courses: the opportunity cost. It refers to opportunities that are forgone by choosing one alternative over another. Part of the struggle with decision-making is being happy with your choices. What did I lose by not participating in X activity? What memories did I fail to create? Whom did I miss meeting? And what did I gain from not partaking? I wondered what the costs were of my choices and whether I would ever feel satiated.
As I grew more familiar with LGMD, listened to my body and calmed my mind, I was able to identify what my body wanted and what I needed. I understood the difference between physical fatigues and mental mind games. I started weighing the cost-benefit of going shopping versus staying home and not worrying about the opportunity costs. I read the signals my body gives me to help guide my decisions. I ask myself “Is it worth it?” which clarifies any points of confusion about my choices. Some alternatives were tiring and definitely worth it while others simply were not. With time, my priorities have changed and I can say that I am more at peace with my decisions. I still feel overwhelmed at times and try to come back to the scales, the great balancing act of life. It need not be perfect but balance was key.
When I look back on the painful moments of truth I had to experience and still experience, I believe that it’s all certainly worth it — my moments of failure allowed me to build success over time. By sorting through opportunity costs, I figured out which ones mattered most to me. I bought Dr. Seuss’s “Oh, The Places You’ll Go!” when I graduated college to remind myself of the extreme ups and downs we face in life. I won’t always make the right decision but I know that I am not the sum value of my costs. Whether I go for the physical choice or opt out, I know with each step I am moving mountains.
The Gait 