I was introduced to the spoon theory not long ago in a graduate school class. The spoon theory, created by lupus patient Christine Miserandino, utilizes a kitchen utensil to illustrate the energy budget of a person living with a disability or chronic illness, which helps quantify…
Columns
“Don’t thank me yet.” Whenever I use that phrase, I mean it in the way it’s traditionally meant. Whatever it is that you’re thanking me for isn’t complete, so wait until I’m done in case you’re not entirely thankful for the results. That’s how I’ve perceived the idiom for most…
The holidays tend to arrive with a mix of excitement and stress, even for people without a chronic illness. But for those of us living with multiple sclerosis (MS), the season can feel like its own kind of marathon, full of expectations, overscheduling, symptoms that flare when we least…
The holidays have a way of turning up the volume on everything. The lights feel brighter, rooms feel busier, and even soft conversation seems amplified. Living with multiple sclerosis (MS) has taught me that this kind of noise isn’t just sound — it’s work. It’s one of the…
November feels like an inhale that hasn’t yet decided whether to sigh or sing. The mornings are quieter now, the air cooler, and for the first time in months, I also feel more peaceful. On the other side of a recent relapse with relapsing-remitting multiple sclerosis, facing…
As Thanksgiving approaches, I find myself reflecting on what gratitude really means. Living with multiple sclerosis (MS) has taught me that thankfulness isn’t just about the big, joyful milestone moments; it’s about noticing and appreciating the small victories that make each day possible. The truth is, life with…
Like a lot of people disabled by a chronic disease, I don’t do well with unsolicited advice. The kind that suggests there is something I can do about my disease, that I’m not doing enough, not looking hard enough for a solution, that they would do better. I’d prefer they…
I was probably never as outgoing or sociable as some people, but there was a time when I genuinely enjoyed most social activities. I was the guy who, by the time a long flight was over, had made at least two new friends and was invited to someone’s wedding. Even…
On Sunday, Nov. 2, daylight saving time ended, our clocks “falling back” an hour. This time of year is difficult for many because the sun sets earlier and the evenings are darker. This can contribute to seasonal depression for a lot of people. However, I experience the opposite. Long before…
I’m not sure exactly when it happened, but at some point, I stopped putting on a costume and going trick-or-treating for Halloween. Years passed, and with the arrival of my children, I found myself happily joining them in their various celebrations of the holiday. They may eventually outgrow it like…
As I sit down at my desk to write this, tears are streaming down my face. My mind, soul, body, and heart are beyond wounded from living with relapsing-remitting multiple sclerosis (MS). This burden that I bear has taken a toll on me like nothing else. I ask myself,…
As a physician, I hang my hat on certainty, where a certain medical issue can be solved with a certain medication. But when it comes to real life, especially as a parent and a person living with multiple sclerosis (MS), I know there’s little certainty in everyday living. My…
I’d spent about five years trying to figure out what was wrong with me and then treat it when I got the phone call. During that time, I’d had three surgeries to repair old injuries and had been treated for chronic Q fever. I’d also been diagnosed with multiple…
During my hospital stay earlier this year, all I could think about was the relief that would come when I finally went home. I pictured sinking into my own bed, exhaling for the first time in weeks, catching up with all that had happened inside my body. I needed…
I never could afford to be a one-trick pony. That’s mostly because I wasn’t good enough at any single thing. Also, it benefited me, and those around me, if I was skilled at a variety of things. I’m not saying there’s no place for people who are masters of one…
Living with multiple sclerosis (MS) often means constantly balancing what your body needs with what your life demands. Some days you’re managing symptoms like fatigue, while other days you’re trying to keep up with work, relationships, and other responsibilities that don’t pause for flare-ups or doctor appointments. Amid all…
Living with multiple sclerosis (MS) has changed almost every part of my life, which sometimes feels overwhelming. Simple tasks are more complex than before. One thing that has helped me cope is being a dog mom. I have a 12-year-old rescue dog that we adopted in 2014. He is…
“We’ve always done it this way” was the phrase I most despised in the Army whenever I questioned a tactic or technique. I’m not saying routine and doctrine aren’t important or can’t help streamline a task, but they should also be common sense before they’re applied. My problem was the…
Living with multiple sclerosis (MS) can sometimes feel like living with a trickster who changes the rules without warning just to amuse himself. One day, you are walking fine, and the next, your legs feel like they’ve been replaced with overcooked spaghetti. There’s fatigue, brain fog, and…
I’m not sure what age people begin to care about the lives of birds, but I think I’ve reached that point. I’m not quite at the stage where I name them or talk to them as if they understand me, but I’m getting close. I have several bird feeders in…
I love to travel and have a bucket list of places I want to visit and things I want to see and do in my lifetime. For example, I want to see the pyramids in Egypt. I want to go ice fishing in Minnesota. I want to stay in an…
I celebrated my mid-century birthday two weeks ago with an online dance party with friends, family, and patients in “The Myelin Room” — a monthly Zoom event. At 50, I’ve officially grown up. I no longer think of myself as a “girl.” The more dignified “woman” feels more appropriate.
I’ve written in the past that I thought I could stand to lose a few pounds. Well, I finally put a little effort into it and have managed to do exactly that by making some changes to my diet. I’d hoped that losing weight would reveal the washboard stomach…
Psychological testing indicates that I’m not crazy, but when I share some of the things I’ve done in the Army, people sometimes wonder. I never say that I’m not, because that’s what a crazy person would say. Instead, I provide a three-point answer: One, would I even know? Two,…
Life with multiple sclerosis (MS) is unpredictable, involving many unknowns. Symptoms can come and go, flare up without warning, and affect every aspect of our health, from movement to memory. Managing MS is already a full-time job, and the added weight of life’s uncertainties often makes it even more…
I recently got my yearly influenza vaccine, which protects against the flu. According to the U.S. Centers for Disease Control and Prevention (CDC), “In an average year, thousands of people in the United States die from flu, and many more are hospitalized. Flu vaccine prevents millions of illnesses and…
At a recent social gathering, my military career came up, including the more than 100 parachute jumps I’ve done in my life. As usual, someone remarked that I must have enjoyed parachuting, and I had to say that I didn’t because I was actually afraid of heights. That brought the…
What’s on your MS bucket list?
One of the things my occupational therapist uses to strengthen and improve the coordination of my hands is a type of moldable therapeutic plasticine. I call it “serious” putty, as there is nothing silly about it, and the way we “play” with it isn’t particularly fun. She has me use…
One of my more unusual symptoms of multiple sclerosis (MS) is itching that is unrelated to skin irritation. It occurs randomly, maybe once or twice a month, and lasts about 30-60 minutes. I have only experienced this symptom in my upper extremities, such as on a finger, thumb, or…
If I were to ask a random person to name the favorite catchphrase of Charles M. Schulz’s character Charlie Brown, the answer would almost invariably be “Oh, good grief!” Although Charlie used it for any number of situations and possibly in place of something stronger, he may have had a…
Recommended Posts
- How I became an advocate for young people with MS
- Starting at age 8, MS has been the invisible illness invading my life
- ‘Molecular atlas’ uses military blood samples to spot disease years early
- Living between the lines: MS, motherhood, and the invisible load
- Trial of CAR T-cell therapy for progressive MS now recruiting in US