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.
The human experience is such a beautifully complicated journey. We all learn, grow, develop opinions, follow tendencies, change, adapt, and change some more. One common catalyst that shapes who we are is adversity. Everyone experiences adversity in one way, shape, or form, and that forever changes us, whether we realize it or not.
Many of us have probably had moments where we think, “I don’t let things get to me; it just rolls off of my back.” But even then, you are choosing to use your ability to move forward. You are choosing to not let that adversity get to you. The armor you’ve built to withstand trials and tribulations is tested and strengthened. You are practicing a skill that you’ve developed all through your life. Whether or not you see it, and whether it’s a recurring hardship or expected obstacle, you’re shaped by every adversity.
Unfortunately, the human experience for those with Friedreich’s ataxia (FA), like me, is wrought with more adversity than we’d face otherwise. Without FA, I wouldn’t have to face life dependent on mobility aids starting in my early 30s. I wouldn’t have to face the injuries I’ve endured. I wouldn’t have accrued so many expenses making modifications to my house to accommodate my failing abilities. I wouldn’t have to rely on others as much. I wouldn’t have to endure as much pity, exclusion, heartbreak, disappointment, frustration, and grief as I do.
That’s not to say that if it weren’t for FA, my life would be free from adversity. That would be naive and horribly untrue. It would, however, be free from the guarantee of a future including more than my fair share of pain and suffering caused by my disease.
Many of us encourage someone going through a hard time by saying, “This too shall pass.” I, myself, say it to friends and family, and even to myself. However, I’ve started to take issue with that saying for my specific journey with FA.
While I agree that individual hardships — like injuries, adjusting to new symptoms, or adapting to progression — will pass, the root cause of the adversity won’t. FA won’t pass. In fact, it’s likely only going to get harder. And that’s a harsh reality to accept.
I try my hardest to tackle each hardship as it comes and keep moving forward in life. I try to stay positive and adapt as I go. But knowing that the hardships I face today will be worse tomorrow as my FA continues to diminish my abilities and capabilities can be incredibly draining and disheartening.
I find encouragement in the routine of individual hardships passing, even if FA won’t pass. I’ll continue to try to learn lessons from those events and let them shape my perspective. Yes, FA has worse plans for me tomorrow, the next day, and so on, but I have the choice to arm myself with the proper perspective to handle whatever FA throws at me.
Just as much of the FA adversity I face will pass, so, too, will the good moments, unfortunately. Life is precious and fleeting, and I won’t let it pass me by because of FA.
“Teach us to realize the brevity of life, so that we may grow in wisdom.” — Psalms 90:12 (New Living Translation)