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Considering Our Response to Living With Rare Medical Conditions

I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.


Many NFL fans around the world were shaken on Jan. 2, when Buffalo Bills safety Damar Hamlin collapsed on the field during a game against the Cincinnati Bengals. Since then, there has been much talk about a rare condition called commotio cordis, which is caused by trauma to the heart at a specific time during a heart’s beat. It can cause a life-threatening cardiac arrhythmia.


Hamlin made a tackle, popped up, and took a few steps before collapsing to the turf. He was resuscitated on the field and transferred via ambulance to a nearby Cincinnati hospital. He’s now on his way to recovery and has done a lot of good in the wake of this nightmarish scenario: His charity has raised millions for a children’s toy drive, and he’s inspired donations to a charity that supports first responders.


I don’t follow professional football closely, so I won’t make any broad statements about Hamlin, but I will say this: His reaction to this near-death experience has affected me.


Some lessons I’ve learned

I often talk about how when things you can’t control happen — whether it’s commotio cordis, Friedreich’s ataxia (FA), new neurological symptoms, or other maladies — you should focus on what you can control: your reaction.


I can’t control how FA affects my body. I can’t control falls, numbness, fatigue, or my increasingly poor balance. All I can do is try my best to follow doctors’ advice to manage my symptoms, adapt my surroundings and routines to continue functioning safely, and refocus my perspective. So that is what I do — I focus on my reaction to FA, which in turn helps model appropriate responses to adversity for my children.


Unfortunately, there is no recovering from FA, yet. There very well may come a time when recovery is possible, but for now, my fellow patients and I must continue finding a way forward despite the disease’s degenerative nature.


So how can I channel my inner Damar Hamlin and bring something positive out of my medically rare condition? How can my reaction to my circumstances affect the masses, even though I’m not a multimillionaire on a world stage? How can my battle with FA have a positive impact?


I can keep trying to be the best version of myself. I can keep adapting to maintain my independence safely. I can keep participating in clinical trials, fundraising, writing a column, and actively maintaining a social media campaign in the name of awareness. Hopefully, all of these efforts can make a difference.

I can’t control the impact these intentional daily choices will have, or if they’ll change the trajectory of my life or the lives of my loved ones, but I can continue hoping that the message of kindness, resilience, hope, and adaptability will serve to make the world a little better. After all, those things make my world better.


“But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law.” — Galatians 5:22-23 (New International Version)

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I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link

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