Columns

It’s definitely dark and maybe even disturbing, but a book I have always enjoyed is Thomas Harris’ “The Silence of the Lambs.” If you’re unfamiliar with either the book or the movie, you’ve either been living a sheltered life or you need to find someone whose birth year starts with…

Multiple sclerosis (MS) is a chronic neurological condition wherein the immune system attacks the protective covering of nerves. This clinical definition accurately portrays the medical reality, but it doesn’t encapsulate the lived reality. It doesn’t account for the ways in which fatigue can feel like gravity doubling overnight…

In the not-too-distant past, when my hands were still deft enough to use tools, I really enjoyed working on vehicles. The fact that they weren’t vehicles I depended on every day helped make it a hobby I enjoyed, rather than a chore. Like any hobby, it had its dull moments,…

Dealing with multiple sclerosis (MS) — including the numerous symptoms that manifest differently for each person, the grief, and the uncertainty — is grueling. On top of all that, there’s the added challenge of navigating the American healthcare system. As I have written before, I’ve dealt with migraines…

It’s been a few years since I’ve traveled in an airplane. Flying commercially when you depend on a wheelchair for locomotion is apparently quite the nightmare. Between that and all the accessories I travel with, as long as the distance is reasonable, I’d rather just drive. The fact that…

Living with multiple sclerosis (MS) is often described in medical terms — lesions, relapses, progression curves, and other jargon — that don’t always register in my mind. But a diagnosis is also associated with grief, a quieter and oftentimes silent reality that doesn’t hit all at once, but…

About 1 million people in the U.S. live with multiple sclerosis (MS). When I first heard that number, it felt like a cold statistic; today, it feels like a community. While MS has redrawn the boundaries of my physical world, it has failed to shrink the borders of…

Growing up, athleticism was part of my identity. To a degree, I measured myself by what I was physically capable of doing. I was constantly driven to test my limits, always aiming for higher, stronger, and more daring. I’m still in awe at what the human body is capable of.

I wasn’t addicted to coffee. But my body was. As someone living well with multiple sclerosis, how I fuel my body matters to me — more than I sometimes realize. I didn’t fully appreciate how caffeine was affecting me until, by chance, I skipped it for two days. That…

I don’t have any tattoos. I’ve never been opposed to the idea, but for most of my life, I’ve never found the perfect one to permanently put on my body. Since then, I’ve seen several things I consider tattoo-worthy, but two of them would be most appropriate on my back.

Bladder issues are one of those symptoms of multiple sclerosis (MS) that nobody really prepares you for. People often talk about mobility problems, fatigue, or vision changes — not the sudden, urgent need to find a bathroom or the constant awareness of the one closest to you. They don’t…

Several (OK, many) years ago, I was having lunch with a group of fellow Green Berets when a news story appeared on the TV. The report covered a recent tragedy, and during an interview with a survivor, it was mentioned that one of the victims had not survived because they…

When I was diagnosed with relapsing-remitting multiple sclerosis (MS) at 16, it was loud. My symptoms were significant; the fatigue ended my athletic drive, the searing nerve pain left me grinding my teeth constantly, and I experienced a period of being legally blind. MS didn’t politely…

Like many of my peers in the military, I developed the ability to fall asleep in any position or place and at any time that I wasn’t actively engaged in something. On one occasion, during a particularly loud and turbulent flight, I managed to stay awake just long enough to…

Pain and I are well acquainted. I would not go so far as to say we are friends, but we do see each other every day. It isn’t always first thing in the morning; sometimes it’s midafternoon, right after I think to myself, “Wow, pain hasn’t shown up at my…

Now that the holiday season, with all its decadent meals, is over, I wanted to share an update on the diet I mentioned in a column last September. At the time, I was still in the elimination phase of a FODMAP diet (which stands for fermentable oligosaccharides, disaccharides,…

At 50, I’m realizing there are a lot of things I’ve stopped doing: nightclubs, late nights, obsessing over my hair, changing my outfit three times before leaving the house, staring at my phone waiting for a boy to call, and caring way too much about what other people think. That’s…

I said I would try not to overwhelm you with tales from my past in the military. For the most part, I’ve been true to my word, but something crossed my mind recently that made me think immediately of multiple sclerosis (MS), and I couldn’t resist sharing it. As…

About two years after my multiple sclerosis (MS) diagnosis, I began having hand-related symptoms that interfered with my daily life and caused significant stress. I’m a college student and remote employee, so I spend a lot of time typing, which is considered a fine motor skill because of the…

Self-care is often framed as something luxurious, such as spa days, vacations, quiet mornings with coffee, and a to-do list that magically completes itself. But self-care looks different for everyone, especially those who are navigating chronic stress, illness, or caregiving. Living with relapsing-remitting multiple sclerosis, I’ve learned that self-care…

Over the years, I haven’t always followed the same advice I’ve given others. For instance, when I was in the military, I’d tell soldiers preparing for a Veterans Affairs examination that it wasn’t the time to act tough — they should report their pain honestly and accurately. This initial exam…

Every year, January arrives with a familiar script as we are expected to embrace a new year with a clean slate. It’s the season for resolutions and sweeping promises we make to ourselves, as if our bodies have simply been quietly waiting for permission to cooperate. I’m not big on…

I wrote a few years ago about a snake we kept that temporarily went missing. It was a wild snake that we released back into the wild because that was the right thing to do. The kids were quite taken with it, however, so we obtained a captive-raised corn snake…

For a long time, food was simply a necessity — something I grabbed between classes, appointments, or bouts of fatigue. I didn’t think much about how it made me feel, aside from the noticeable energy dips or sugar highs. Living with multiple sclerosis (MS) has gradually shifted my perspective,…

In the past two years, I’ve started listening to a number of podcasts. That this coincides with my becoming more sedentary is purely coincidental. That my first was the Multiple Sclerosis Podcast is less so for obvious reasons, but today I listen to podcasts about more than just…

For many people, the arrival of a new year is a celebration of the possibilities that lie ahead. For those of us living with multiple sclerosis (MS), it’s often quieter and more internal. It’s often less about making resolutions and more about facing a reckoning. When you live…

This year has been a lot for me to deal with. It’s held more grief, trauma, and growing pains for me than any year before it. And it all started with a relapse of my relapsing-remitting multiple sclerosis (RRMS) that came after nearly nine years of remission following my…

When I checked into the hospital last month, I answered all the usual diagnostic questions, but then one caught me off guard. A social worker asked if I had an advance directive in place. My first thought was to wonder just how bad the lab results were since I hadn’t…

There’s a kind of loneliness that comes from being almost understood — close enough for someone to recognize your outline, but not close enough to feel your weight. It’s a loneliness that doesn’t creep in all at once. It settles slowly, the way dust gathers on a shelf you thought…

I wrote in the summer about changing the disease-modifying therapy (DMT) for my multiple sclerosis (MS). I’ve familiarized myself with the available DMTs, and I plan to ask my neurologist for her recommendation next week and then make a decision. As I’ve researched my options, I’ve become interested…