Read Time: Six minutes

September 25 is Ataxia Awareness Day, devoted to educating people and promoting the need to fund research for the Ataxia family of neurological diseases. Did you forget to send my card or flowers in the mail? If you forgot, I will extend you grace for this year.

Ever since I became aware of this set-aside day less than 10 years ago, I find myself analyzing my disability with a stricter eye on the 25th. Since the disease is progressive, I consider where I am now compared to where I was last year. Have there been any drastic changes to my health or troubling signs alerting me?

It’s a mixed bag when I do these types of self-analyses. Often, I battle discouragement when I recognize the disease is not going anywhere. Ataxia has moved in its bags and set up permanent residence in my life. It’s a messy houseguest too for I find traces of it everywhere, from how I move, to how I speak, and to how long it takes me to finish a task.

On the other hand, I often find myself offering thanksgiving. I’m grateful for the things I am still able to do independently, as well as thankful that the disease has been kept at bay and the progression has not completely washed over me. I know it can do that, quickly and unabashedly.

I should have listened to Mom

My diagnosis of Friedreich’s Ataxia came in the fall of my senior year of high school. It had been a very long process to get to the diagnosis, lots of bloodwork and lots of waiting. The doctors first noticed the ataxic symptoms before I went in for back surgery to correct my severe scoliosis. It had taken four years of methodical testing to figure out what was going wrong in my body.

Once they had ruled out the other forms of Ataxia, the doctors were fairly certain I had Friedreich’s, but they wanted to wait for the blood results to confirm it. My mom told to avoid researching the disease so as not to let the idea of it oppress my mind while we waited.

I heard her, but I didn’t heed her advice. Assuming I was made of strong enough meddle, I looked it up in our encyclopedia (Google did not exist).

I should have listened to my mom. 

I read all about this progressive neurological disease, which was the most common form of the rare Hereditary Ataxias. The defect in the chromosome, Frataxin, attacked my genetic makeup, and sentenced me to live under its captivity. The article informed me of all the symptoms and progressions to expect, but what frightened me most as an 18-year-old was the promise I would need a wheelchair to get around.

I could not fathom that future. All of the things a young man dreams of accomplishing as an adult seemed improbable feats if they had to be done from a wheelchair. It felt like the worst possible fate to not have legs that allowed me to go where I wanted to.

And now that future is a reality. Friedreich’s Ataxia was confirmed, and I have spent the last 18 years in a wheelchair. While life in a wheelchair is not quite the fatalist defeat I feared, it is far from ideal.

Living with disability often leaves me scratching my head and wondering how to make sense of all of this, but it has brought me some clarity. In fact, I’ve learned a lot. 

All of the things a young man dreams of accomplishing as an adult seemed improbable feats if they had to be done from a wheelchair. It felt like the worst possible fate to not have legs that allowed me to go where I wanted to.

That was my initial intention in writing the blog today: sharing what God has taught me through my disability. But I quickly realized how extensive that task would be for I have a lot to say. The contents would probably make a worthwhile book, perhaps something to consider for the future.

Instead of trying to cover everything that God has taught me through disability, I figured I might focus on one aspect.

Did I really just say that…and did I really mean it?

After church service one Sunday, I felt particularly agitated. My motor skills betrayed me more than usual that day, I dropped everything, and my back and legs ached. I could not focus on anything the pastor had to say because I was too consumed with how many ways the disease had wronged me.

As the sanctuary emptied and the congregation ushered toward their Sunday school classrooms, I attempted to back out of my pew and into the aisle. A simple feat that proved beyond me this day. After a dozen attempts, I stopped, bowed my head, and took some deep breaths.

My friend, James, made his way to where I sat and asked me how I was doing. The look on my face must have communicated my answer for he grimaced and asked what was bothering me.

What was bothering me? Where could I begin? Should I take him back to 1998 when I received news of this awful disability?

I tried dismissing his concern by telling him the day had just been challenging. James guessed a deeper issue hid behind my hurried attempt to brush things aside. He nodded with sincere sympathy, confessing that he did not know what it would be like to have my disability. Without thinking about it, I blurted out a surprising revelation.

“My problem is that I’m failing to recognize all that God has accomplished through my disability. My disability is a gift.”

The words shocked me. They spilled out of my mouth faster than I could catch them and rephrase. I wondered if it was too late to take them back.

A gift? How could I possibly think life in a wheelchair with a progressive disease was a gift?

The surprises kept coming. Because the more I reflected on it, the more convinced I became that disability really was a gift. It had served as a means of God’s grace in my life.

Because the more I reflected on it, the more convinced I became that disability really was a gift. It had served as a means of God’s grace in my life.

The hardships disability had dealt me, all the disappointments, the rejection, and frustrations, caused me to cling to the God who created me, to press deeper into the Bible to understand this God. What I discovered was a God who was closer than I thought, more loving than I imagined, and more faithful than I understood.

Hardships had drawn me to him. They were a grace because they revealed truths I may have overlooked had I been born free of disease. My pain held purpose.

Hardships had drawn me to him. They were a grace because they revealed truths I may have overlooked had I been born free of disease. My pain held purpose.

Does God believe this too?

The purpose was not just targeting me. I have often found myself to be a magnet, attracting others to come share their hurts and disappointments. Others view me as someone who may know a thing or two about suffering. 

During those times, I get to share with them exactly what God has taught me about suffering. I can share how he has sustained me. I exchanged the role of comforted for comforter.

I witnessed exactly what the apostle Paul shared with the Corinthians: “Blessed be the God and father of our Lord Jesus Christ, the father of mercies and God of all comfort, who comforts us in all of our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God” (2 Corinthians 1:3-4).

Those in Corinth who opposed Christianity tried to convince the believers that Paul clearly had a false message. They pointed to the sufferings of Paul and concluded that because he was weak his message must also be weak. Paul understood his afflictions, that they served to build up and serve the church (2 Cor 1:5-6). His afflictions had purpose.

The ways in which I have experienced God sustaining me through disability, ideally equipped me to offer comfort to others in distress. God has built his church as an interdependent body where we minister to one another. And my disability allows that to happen.

I exchanged the role of comforted for comforter.

After I spewed my confession to James, his eyes widened at the frankness of my words. I nodded my head in submission and reaffirmed what I had said:

“Yes. My disability is a gift. He has graciously given it to me.”

I find joy considering it as I contemplate Ataxia Awareness Day. Being diagnosed with Friedreich’s Ataxia is hard. My heart often groans for God to intercede and remove me from this. 

But he has done so much through it, using me to minister his comfort to other hurting hearts within his church. How could I not be thankful for what he has done?

If you know somebody with a disability, encourage them. Their circumstances will tell them they have every right to give up but challenge them to search deeper and cling to the God of the Bible. They need to be comforted in the same way God has comforted you.

If you know somebody with Ataxia, give them a hug. After all, it was just their day.

If you are a believer with a disability, God is accomplishing something in your pain. Don’t underestimate his purpose in it. You are a critical part of his body of believers.

Embrace his promises and embrace his comfort, and then allow it to mold you into a counselor who can comfort others.

There is so much to say about all of this. And I can’t wait to share more of it with you.

Until next time,  AJ

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