Hello, welcome back to another week at Humbly Courageous. I am glad you are here!
When my oldest son asked me to proofread his college essay a few years ago, I don’t think anything could have prepared me for what I would read. My biggest fear before having children, was that my life, my disability, would affect their lives in a negative way. I know what I endure as a disabled person on a regular basis, and for years I debated if I wanted to bring children into the world with me and potentially affect their lives in a bad way. After years of discussion with my husband, I finally felt like the decision was clear. I feel God put it on my heart, that He wanted me to have children. I felt that very strongly all of a sudden. As I went on the journey that Luke took me through in this essay, I felt many different emotions. I felt sad, mad, grateful, proud and so much more. I am sad/mad that the opinions and reactions of others caused us to miss out on these precious times with Luke. That part grieves me beyond words. I get it though. I think that as my child, that is the closest someone could get to feeling what I feel as a disabled person.
I hope you will gain some perspective and knowledge from reading Luke’s words. I told him at the time, if he ever was willing to share this essay, I would proudly do so. While we were in Berlin last week, he messaged me that he was ready to share it. I think it could potentially help others in many ways. I applaud his bravery and vulnerability in sharing his words with my readers. Without further ado, here is a glimpse into what life was like as a child for Luke. I am beyond proud of him. Life with a disabled parent is so much more than what it appears on a surface level. Their perspective is pricelesss. Professor adversity is our greatest teacher in life. Without it, we are just a shell, lacking in substance and purpose.
Glaring eyes piercing the back of my head paired with the intense heat of the sun overwhelmed my eight-year-old self, as I pushed my mom’s wheelchair towards the edge of the African Lion exhibit to get a closer look. Why were people staring at us instead of the majestic beasts bathing in the sunlight? Were we the main exhibit? We continued touring Chicago’s Lincoln Park Zoo, piquing the interest of visitors for several hours. Overlooking the negative attention, my mom focused instead on providing me and my brother with the best experience possible. I followed suit and kept pushing. After all, my top priority was proving myself worthy of “man of the house” status in the absence of my father that day.
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| Lincoln Park Zoo day, I got out of my wheelchair for the picture |
My mother suffers from a rare disease that induces muscular weakness and inhibits her ability to walk. After remaining undiagnosed for 44 years while enduring public criticism, countless surgeries, and innumerable doctors she was diagnosed with Bethlem Myopathy, a 1 in 200,000 form of Muscular Dystrophy. There is still no known cure; however, she can finally put a name to the disease that has presented her so many challenges.
Growing up with a loved one who suffers from a severe physical disability has made me no stranger to adversity. Years of witnessing my mom overcome obstacle after obstacle has ingrained an unwavering persistent mentality within me. Ironically, the root of this mentality has also presented one of the biggest needs for it. With age came heightened self-consciousness, and I was no longer able to view my situation with the same ignorance I could as a child.
From the never-failing, “What’s wrong with your mom?” inquiries during first interactions to the resentful stares on the way to the wheelchair accessible entrance at Kings Island, Bethlem Myopathy follows me everywhere I go. I tried to run away from this reality. My constant athletic and academic obligations gave me an excuse to avoid family outings and the anxiety that came with them. Fall break trips and summer vacations were conveniently overshadowed by the Indiana Cross Country Tournament and the weeks of summer training I needed to prepare for it. The truth was that I couldn’t outrun who I was, and Bethlem Myopathy is just that — a part of me. It wasn’t until the culmination of my adolescent years that I was able to recognize the success I sought after and the public attention I avoided both stemmed from the same place.
My mom’s disease was there through it all: not just in the reflection of the glaring eyes but in the county championships and the roads to recovery from numerous stress fractures. The work-ethic and perseverance critical to my success are a byproduct of the adversity I’ve witnessed and experienced firsthand. With this understanding I am now able to view my situation through a different lens: my appreciation for my mother and Bethlem Myopathy has deepened beyond anything I could’ve fathomed.
Looking back I can’t help but feel guilty for seldom expressing this pride in my mom’s disability when she never failed to express how proud she was of me. I’ve conveyed this newfound perspective without hesitation in news interviews with CBS4 and at MDA events with professional Colts players, but I still struggle to express these same feelings to the person that deserves to hear them most. I’m done trying to run away. This November, I know my mom will feel the same pride that she has in me as I run with her down the streets of Manhattan in the 2021 NYC Marathon.
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