living with MS

There are several good reasons why you won’t see me in television commercials for multiple sclerosis (MS) treatments anytime soon. For one, I’m not much of an actor, despite my brief moment of high school fame. For another, even though I wouldn’t go so far as to say that…

Last month, I told you that while I’m not a psychologist, I’m fascinated by the subject. I should probably make a list of things I don’t do but still find interesting. One of those professions we can add to the list is historian. I enjoy reading and learning about…

My father taught me to play chess when I was barely old enough to say the names of the pieces.  I wasn’t a child prodigy or anything like that. I never joined a chess club or competed in a single tournament. I simply enjoyed the game…

“I’m so tiredThe hammer’s coming down againI’m hardwiredAll the signals cross and double backBroken insideThere’s no fixing anythingHow do i explainI’m fighting every day to do the simple things?” The lyrics to “Hammer,” written by singer Susie Ulrey and the band Pohgoh,…

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…

Years before joining the Army crossed my mind, I was a Boy Scout. We learned all sorts of skills, earned merit badges, and, of course, spent lots of time hiking and camping. I have many fond memories of those scouting years, but one lesson I remember in particular was…

By now, I’m sure you’ve seen the pictures of the wildfires that charred Maui, Hawaii. As I write this, a week after the blaze, The Associated Press reports that more than 100 people have been killed, and the governor expects “scores more.” Some neighborhoods are gone. People literally…

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,…

A few — OK, many — years ago, I played the lead in a production of “Oklahoma!” Don’t get excited; it wasn’t on Broadway or anything like that. It was a high school production, and I suspect I only landed the role because I could sing — and probably…

So I’m back home. Four months’ worth of bureaucracy lay in front of me. In truth, quite a wodge had grown before I went into the hospital. Hey, I hadn’t been well in the months leading up to my hospitalization late last year. Thankfully Saint Jane — my…

The online platform DrTalks is offering a free virtual summit this summer aimed at helping multiple sclerosis (MS) patients and their caregivers better manage daily life with the progressive neurodegenerative condition. The event is slated for July 5-11, and has more than four dozen speakers lined up. Talks…

The “invisible” symptoms that are common with relapsing-remitting MS and many other chronic illnesses can be the bane of our lives. It’s difficult enough to manage them, as they’re constantly fluctuating like a changing tide. But in some ways, it’s even more difficult to explain them to…

“scabulous adj. proud of a scar on your body, which is an autograph signed to you by a world grateful for your continued willingness to play with her, even when you don’t feel like it.” — John Koenig, “The Dictionary of Obscure Sorrows“ I’ve managed to amass quite the…

The wing of the small aircraft dipped below the horizon, revealing a strip of sand in the middle of the Bering Sea. On one side, miles of ocean. On the other, a lagoon. It was 1995, and Melissa Cook, her husband Elgin, and their three small children were beginning an…

I had a glass of wine thrown in my face on the evening of my wedding anniversary. I was taken completely by surprise — well, maybe not completely. After all, the person who threw it has a reputation for that sort of thing. I was pretty irritated, though, because a…

In the five years I’ve been tapping away at this multiple sclerosis (MS) column for MS News Today, I’ve so far written during one FIFA World Cup. My oft used trope is that “it’s football, not soccer,” for our many U.S. readers. That is, at least, how…

What do you do to make living with multiple sclerosis (MS) easier? A similar question was posed to readers of the MS News Today Facebook page recently, and about 175 people responded. Even an MS old-timer like me (I’ve been living with the disease for 42 years and…

“You married a husband and ended up with a child,” quipped I. It was first thing Sunday morning, and I was addressing my wife of 30 years, Jane. She stood with blue, latex, hypoallergenic gloves on her hands, ready to deal with my sopping wet pad. More on that…

A voracious reader since childhood, I’ve often lost myself inside fictional worlds — often preferring them to the real one where I’m forced to live. This was especially true when I was diagnosed with multiple sclerosis (MS) almost 18 years ago. When my eyes and ears were focused on…

There are moments in life that have surprising effects on us. I’ve had two. The first was when I was about 9, and my mother informed me that my headmaster had been told I’d disappeared after school. Fair enough in hindsight. I presume she’d phoned the police as well, but…

While helping me get dressed this morning, my wife handed me a T-shirt from a dresser drawer across the room. It happened to be a shirt commemorating an event from my pre-multiple sclerosis (MS) past. It’s what you might call a “been there, done that, got the T-shirt” kind…

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. Wasn’t part of any organization. Had no power. Couldn’t influence anyone. How did I…

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…

There’s a slight chance that I might be stubborn. I don’t really see it, but my wife, parents, siblings, relatives, friends, and former teammates all seem to think so. I personally think that they’re mistaking my drive and strong willpower for stubbornness, but I suppose I respect their opinions enough…

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 planet’s surface) I’m going to write about next week is but a slight fluttering. Yer, yer, I know; underneath it’s…

This month marks the third anniversary of my column, “The MS Wire.” After writing two columns a week for most of those 156 weeks, it isn’t always easy to come up with fresh ideas. Tonight was one of those nights. With my deadline approaching, my well of ideas was…

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 I’ve handled my MS and my grandchildren. My granddaughter is almost 5 and will…

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

A recent article in The New York Times hit the nail on the head when it comes to describing the world we live in with MS. But the article isn’t about MS. The Times‘ Tessa Miller writes about Crohn’s disease, a type of inflammatory bowel disorder. Like MS, Crohn’s…

Over the past few months, I’ve had a few things to say about actress Selma Blair and the very public way in which she’s been handling her MS diagnosis. When Blair went public with her MS last October, she did it on Instagram, writing, “I am…