living with MS

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…

Over the past week, I’ve come across two short films that are designed to show what it’s like living with MS. But they have two very different approaches. Interested in MS research? Sign up…

A recent pop-up cafe in Dublin allowed customers to experience what it’s like to live with multiple sclerosis (MS) to highlight the urgent need for improved access to care and treatment for MS patients in Ireland. MSunderstood Café gave customers a small taste of the challenges and symptoms MS…

Getting a tattoo shouldn’t be taken lightly. It’s a piece of art that will be on your body for life and therefore, should represent something that’s near and dear to your heart. With that in mind, it’s no surprise that many who suffer from a chronic illness choose to add permanent messages…

  I was diagnosed at a time when no approved medications for MS existed and there was no internet to search for information about the disease. I was in my late 20s, dating the man I’d eventually marry and wondering how this new normal would affect my life. I’ve…

“Are you doing ok?” It’s one of those questions we all get. And it’s one that most of us don’t like to answer. How do you respond when someone asks you that question? #1 You can say “Yes, I’m fine, thanks,” even if you’re not OK, and be…

It’s a question that nearly every MS patient faces. When do I tell my children about my multiple sclerosis, and what’s the best way to do it? In early January I wrote a column about sharing an MS diagnosis. It was prompted by a reader who had told…