living with MS

Musicians living with MS find inspiration in their conditions

“Iā€™m so tiredThe hammerā€™s coming down againIā€™m hardwiredAll the signals cross and double backBroken insideThereā€™s no fixing anythingHow do i explainIā€™m fighting every day to do the simple things?” The lyrics to “Hammer,” written by singer Susie Ulrey and the band Pohgoh,…

How do you define defiance while living with MS?

Recently, I was asked about the design on the left side of my “Chairborne” banner. A friend from my previous occupation humorously noted that in the original graphic, there’s a skull in the center where the wheelchair now resides. I pointed out that in my current state, a wheelchair…

Parachuting my way through this life with MS

Ten minutes away from the drop zone, we stood up and began the final preparations for the jump. The aircraft flew in anything but a straight line as it turned, banked, and swiftly changed altitude. This unpredictable flying technique was tactically sound, as it made the plane difficult to target,…

How Did I End Up in a ’60s Cold War Spy Thriller?

The constant light in my cell burned through my eyelids all night. Every night for days now. Prostrate on my back, I couldn’t even turn over to get away from it. Why me? I knew nothing. Wasnā€™t part of any organization. Had no power. Couldnā€™t influence anyone. How did I…

The Smog of Tax Returns: An MS Fairy Tale

Once upon a time, children, there was a very grumpy bear who kept a low-level, incessant growl going all day. And often, well into the night, too. If his family were lucky, this would only last about a week, but usually it would last a lot longer. He was snappy…

My Stubbornness Has Helped and Hindered Me in Life With MS

Thereā€™s a slight chance that I might be stubborn. I donā€™t really see it, but my wife, parents, siblings, relatives, friends, and former teammates all seem to think so. I personally think that theyā€™re mistaking my drive and strong willpower for stubbornness, but I suppose I respect their opinions enough…

Five Years of Writing This Column. What a Surprise

Compared with living with multiple sclerosis (MS), the anxiety of what on water (Earth has always struck me as a misnomer as water comprises 71% of our planetā€™s surface) I’m going to write about next week is but a slight fluttering. Yer, yer, I know; underneath itā€™s…

To Handle MS, Sometimes We Need a Little Attitude

The other day, a young woman with multiple sclerosis (MS) shared her worry in a Facebook group that her disease would prevent her from playing with her grandchildren someday. Her concern got me thinking about how Iā€™ve handled my MS and my grandchildren. My granddaughter is almost 5 and will…

The Unplayable Piano

What do a broken-down, out-of-tune piano and multiple sclerosis have in common? Well, theyā€™re both disorderly and confusing, to say the least. But thereā€™s something else ā€” they have the potential to bring about something positive. I learned this from a podcast called “Hidden Brain,” specifically from an…