12/11/2025
As many of you know over the last several months I have transitioned to using a wheel chair full time as I have dealt with desease progression of ALS. I have to admit that during this transitions one of the hardest things for me was the idea of getting wheelchair ramps added to our house. I didn’t say anything to anyone but it really bothered me. You see, we built this house with our own hands. It was just as I wanted it. I felt like ramps would mar how it looked. It also made my disability very public to all who saw them. The idea just bothered me, but it was just one of many adjustments or changes that I’ve gone through.
The truth is, this journey I have found myself on has had many different stages or adjustments. I remember the early days when it was like what I imagine PTSD to be. Just the shock of the diagnosis and the seriousness of it all. Then being reminded and so grateful for his word that assures me he is just as much in control now as he was the day before I got sick and his will for my life is perfect and loving even if it’s so different than I had ever imagined.
Then came the day when I was pondering these things and it was as if he asked me, “If you believe that to be true, can you thank me for the ALS?” Wow! That stopped me in my tracks. I literally got a little dizzy. Did I need to thank God for everything ( in all things give thanks)? Thank him FOR ALS, not just for the opportunities for sharing his word or seeing the church come alive on our behave due to having this disease, but thank him for being this sick.
That day I came to truly understand that giving thanks had nothing to do with “feelings”. It is an act of obedience. As I sat in my recliner pondering this I thanked him. There was no joy, no anger. Honestly there was no emotion. Just shear determined obedience.
A while later I was reading in 2 Corinthians 12 where the Apostle Paul writes about “taking pleasure” and even “glorying in his infirmities”. While I had read this passage numerous times, now it was different. Now I read it through the lens of a chronic fatal illness. What does this even look like in real life. How do I apply this and live this?
Over the next several weeks I thought about this and come to realize how this connects back to that foundational truth from his word that he is in control. He did not change the day I got sick. So since he never changes, this means I can glorify not my infirmity, but him in my infirmity. A couple of nights ago we returned from a long day at Barnes Hospital to find that #4 had strung lights on my wheelchair ramp. As we pulled into the driveway it was so clear to me. This is what it looks like- taking pleasure and glorying in my infirmity. While I’m pretty sure Christmas lights may have been one of the farthest things possible from the authors mind when he penned this, I’m finding I can celebrate my saviors birth, I can glorify his name even with lights strung on this ramp that I never wanted.
