Becoming the Miracle We Seek

Matt Lafleur avatar

by Matt Lafleur |

Share this article:

Share article via email
living with a rare disease | Friedreich's Ataxia News | main graphic for column titled

“You’re cured, Matt! You’re cured!” yelled some friends, their shouts echoing in the ballroom of my college’s student union almost 15 years ago. I remained sitting in my wheelchair following this Christian service of a popular healing preacher. 

By then, Friedreich’s ataxia (FA) required me to use a wheelchair about 90% of the time. Instead of accepting and facing my disability, I prayed unceasingly for an escape from it. I didn’t want to face my crippled body. I wanted a miracle.

I believed in miracles, something ingrained in me from my childhood faith. I thought they were transactional — a believer’s due from a just God. For me, it was only a matter of time until a miracle rescued me from the clutches of Friedreich’s ataxia.

I had to accept that I wasn’t rescued that night.

Recommended Reading
living with disability | Friedreich's Ataxia News | Main graphic for

I’m Not Giving Up, I’m Just Adapting to My Disease Progression

After the hollow healing service, I crossed the lonely campus to my apartment, devastated. I reasoned that if miracles are the reward of a strong faith, I must be doing the whole faith thing wrong. I vowed to give up hoping for miracles on that chilly ride in my power wheelchair. After all, this was not the first time I prayed for a miracle that never happened. I remembered two nuns who taught me that hope was much grittier and more real than a simple transaction unto the faithful.

Once, on a normal Friday, my fourth-grade teacher, Sister Dionysia, told her entire class she was going to be checked for cancer that weekend. She asked us to pray “really hard” for her scans to be clear so she could return to school the following week. But she never came back. Sister Dionysia died of cancer less than a month later.

I didn’t understand how my teacher could die, even after her entire class prayed and hoped that she would make it. I grimly thought, “I guess we didn’t pray enough.”

The next year, I was diagnosed with Friedreich’s ataxia, an untreatable, progressive disorder. 

Sister Dionysia’s death should have taught me to be cautious about hope. However, I believed my dwindling functioning would be repaired soon. Like clinging to a buoy in a stormy sea, hope allowed me to dream of a better future, instead of drowning.

On my last day of 11th grade, I shared some exciting news with Sister Frances, my religion teacher at the time: The following summer, my sister and I had an appointment with a well-known faith-based healer. I believed this was the miracle that my sister and I had hoped for since our diagnoses.

I was already planning a future without FA’s progressive symptoms.

Sister Frances didn’t react with excitement. Instead, pity and concern passed over her turquoise eyes. Was this doubt? As a nun, wasn’t it her duty to encourage hope in miracles? Didn’t she understand how desperately I prayed for one?

Months after that appointment, I began my senior year of high school, still disabled, soon requiring the full-time use of a wheelchair. All the faith healer gave me was advice to avoid eating tomatoes, a few mumbled prayers as I faced east, and a convenient offhand comment about how I was closer to God than most people (stoking my 17-year-old ego).

Sister Frances never mentioned the trip. She didn’t have to. She knew what its outcome would be all along.

I remembered hoping against the sudden death of Sister Dionysia and the embarrassed look of pity in Sister Frances’ eyes. Both times, expecting a miracle left me disappointed and hurt. 

Now, on my solitary trip across the dark campus, I vowed never to hurt like that again by hoping for a miracle.

I think every FAer faces this crossroad at some point in their journey. We know the tragedy of facing disappointment over and over again.

It’s not easy to believe in miracles when our teacher dies, even though we prayed for her. Or when meeting with a miracle healer doesn’t result in a cure. Or when your disability doesn’t go away.

Almost 15 years have passed since that chilly and hopeless trek across campus after I received no miracle. I’m still trying to figure out what I believe.

I’ve come to see that no one can expect a miracle or an answered prayer; it’s not a transactional reward for being good or faithful. 

Instead of becoming hopeless and nihilistic, or praying that one will be given to us, our duty is to create our own miracles. If we long for a cure for FA, we can donate to research or participate in clinical trials. If we desire community, we can join the Friedreich’s Ataxia News Forums, or the volunteer group of patient ambassadors at the Friedreich’s Ataxia Research Alliance.

Should we still hope for a miracle? Something that makes everything perfect? Sure. But instead of getting upset if one doesn’t happen, let’s try to be the miracle. Maybe some miracles aren’t climactic events, but little victories.

***

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.

Comments

Hilary Brown avatar

Hilary Brown

Very thought-provoking, thank you.

Reply
Linda Feld avatar

Linda Feld

BRAVO MATT! BRAVO!!!

Reply
Linda avatar

Linda

Thanks for that article, it’s what I really need to read right now.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.