The misguided miracle cure that kept me going

Years ago, I wrote the column “Becoming the Miracle We Seek,” and I’ve been reflecting recently about its portrayal of an early part of my journey, when I wanted prayer to bring me a miraculous healing from Friedreich’s ataxia (FA). For most of my life, I believed miracles were transactional and only went to upstanding people. That sort of prayer was shortsighted, but it gave me the strength to persevere.

As we observe Suicide Prevention Month, I’m reminded of how important that search for a miracle was for me. True, no one with FA has been healed yet. But it’s vital to share stories about what keeps us going.

When I first prayed for my miracle, I didn’t consider the thousands of others diagnosed with FA across the world; instead, I only included me and my sister, the only other person I knew with the disease.

That miracle wish only sought healing for the two of us, but I now know that it’s normal, when young, to focus on our own problems only. It’s not that we don’t care about others; we’re just wired to care about our immediate surroundings first.

In the years since, my prayer has become more expansive and more actionable. It now includes the global FA community and future generations of FA patients. But rather than waiting for a supernatural act from God, now I pray for and work toward a reformatted miracle. It seems now less like a wish upon a star and more feasible and tangible.

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My misguided miracle

As a teenager, my FA symptoms were becoming impossible to ignore, especially the changes in my ability to walk. I took comfort in my overactive imaginings of that coming blessed day when my wish for a miracle would be granted.

I envisioned two ways this event would happen. In one, a lightning bolt would strike me, restoring the function in all of the cells in my body, ridding me of FA (to all the doctors’ bewilderment), and sometimes granting me superpowers because — why not?

In the second, as I sat near a pew in church, I’d suddenly feel the rush of a holy wind and stand, often to onlookers’ cries of “Alleluia!”

Either way that healing happened, my sister would experience the same thing as me at the same time — kind of a double miracle.

I chuckle and am now embarrassed by the grandiosity and sheer silliness of those thoughts. But I soberly recognize that this dream of a miracle was essential to my well-being. I’m no stranger to pessimism, directed inwardly (depression) or externally (cynicism). Both of those, however, lead to hopelessness.

Ask anyone in the FA community and they’ll agree: Our condition is one of the most challenging issues in our lives, if not the most challenging. Even though it seems laughably conceited to me now, I held tightly to my idea of a miracle when I saw nothing but hopelessness. In fact, my self-important miracle wish kept me from being hopeless.

I’m still kicking, and so are you, reader. I’m so proud of you for making it this far.

Keeping going

From a little boy praying for a miracle cure for my sister and me, to an adult who works to spread awareness so an FA cure can be available to all, I’ve learned that prayer requires more than a couple of lightning bolts to be a reality.

Something curious is happening. As I get more involved in the FA community, the miracle of an FA cure seems to be getting closer. Not because of my involvement; I’m just fortunate and amazed to be at the right place and time to witness it.

My brother from another mother recently texted me the article “Friedreich’s Ataxia Drugs Market is Projected to Reach US$ 3.49 Billion by 2034.” It was $0 until 2023. That’s a big victory.

I hope you hold onto whatever keeps you going, whether it’s a selfish miracle, the prospect of being involved in greatness, or something unique to you. Whether you’ve found what keeps you going or you’re still searching, I’m glad you’re still here. Let’s witness these little victories turn into big ones.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.