Jamie A. Hughes is a writer-editor living in Atlanta, Georgia with her husband, two sons, and a pair of very needy cats. She was diagnosed with relapsing-remitting MS in 2004 when she was just 25 years old. A lover of words since birth, she wasn’t about to let two little letters get her down. They don’t get the last word. And that’s why she writes her column — to help those dealing with MS to live more thoughtful, hopeful, and inspired lives.
Multiple sclerosis has taught me many lessons over the last 16 years, and one of the most lasting ones has been about finding balance. I can’t run like a madwoman from one task to the next and not expect consequences. There has to be a balance between work and rest.
We’re now moving into the sixth month of quarantine, and it’s looking more and more like the world isn’t going to snap back to the way it was before all of this craziness started. I’m starting to think that’s not necessarily a bad thing, because some of the stuff going…
I don’t know about you, but these last few months have been rough. Like, I-want-to-crawl-under-my-weighted-blanket-with-a-hot-water-bottle-clutched-to-my-midsection-and-listen-to-Chopin’s-“Nocturnes”-on-an-endless-loop rough. Life’s just like that sometimes, especially when you have multiple sclerosis. Ever since the pandemic started, things have only gotten more challenging. Now, we have the added stress of illness, working from home (if…
I don’t know about you, but most mornings my brain feels like it’s full of hyperactive gerbils. This could be my multiple sclerosis, or it could be pandemic brain fog. Either way, I understand that song by The Police in a brand new (and very real) way these…
Every few days, I go out to our Little Free Library and change the messages on the two side walls, which are covered in chalkboard paint. One of my missives reads: “My ‘summer body’ plans didn’t work out, but I’m killing my reading list. Take that, 2020!” And it’s…
I recently started writer David Sedaris’ MasterClass, and one piece of advice he keeps reiterating is the importance of keeping a diary, a daily record of your doings and dealings in this world. It’s a habit I’ve fallen out of, so I bought a stack of Moleskine cahier journals…
My family just returned from a lovely week-long vacation on the Gulf of Mexico. It’s always a wonderful time (and one perfectly suited to socially isolating) because we literally do nothing. We make no plans. We buy no tickets to any event or theme park. We sleep, read, and watch…
Right now, it’s tempting to feel hopeless. COVID-19 is still out there with no vaccine in sight. Millions of people are out of work. And regardless of how you feel about the protests taking place in all 50 U.S. states (and around the world), all of us can admit…
The last few months have been interesting for obvious reasons. All of our routines have been toppled over like a stack of blocks, things that were once mundane now feel alien, and getting back to “normal” (whatever that looks like) still feels as far away as the horizon. But I…
I just turned 42, and though I am wiser and stronger and more independent than I was a few decades ago, not everything is coming up roses. Some days, I feel weak and helpless. Other days, I’m overwhelmed. And that’s just part and parcel of life for every human being…
I have a new personal hero. His name is Ralph Wendorf. We probably don’t have much in common. He’s not even an MS patient! I’ve never met him, and I likely never will. He lives across the country from me, in New Mexico, but thanks to a local broadcast that…
I just finished my third week of working from home due to the coronavirus, and I’ve learned a few things about what it takes to be successful outside of the office. Here are a few helpful tips for MS patients who currently spend more than a few hours behind a…
I don’t know if you’ve heard or not, but there’s this coronavirus thing going around. And it is disrupting everything from concerts and conferences to schools and my kids’ recreation sports leagues. Don’t get me wrong, as a person who lives with multiple sclerosis (MS) and is therefore immunocompromised,…
As someone with 16 years of MS experience, I’ve grown to hate needles. I only have to give myself three shots a week now instead of seven, but I dread shot days as if they were the proverbial plague. Needles are awkward and uncomfortable. They make travel more difficult. Sometimes…
There’s a story I love to tell about my dad, a retail warrior with more than 30 years of experience under his belt. And it’s one that I think is apropos for those of us dealing with multiple sclerosis. Back in the 1980s when he was a department manager…
Jan. 1, 2020 was a special day in our house, and not just because a new decade came into being. (Or did it?) It marked our 20th wedding anniversary, and my husband and I chose to celebrate in style this year by taking a cruise together. (Yes, if you’re…
I read a sad tweet last night (though, in a way, aren’t all of them somewhat sad?) in which a woman told a story about her friend who had just broken up with her boyfriend of one year. She asked her friend how she was holding up. The reply was…
After I wrote my last column about essential oils to combat the common cold, I knew I was doomed to catch something. And that’s what happened … kinda. A few days ago, I felt what my family calls “a throat thing” coming on, but thankfully, my friend Sandy hooked…
As an MS patient, I’m always on the lookout for something that will help me stay healthy. Though doctors say flu shots are OK for us, they’re not for me. I’ve had better luck with essential oils. Though they can’t replace all medicines, adding them to my…
As an MS patient (and an insatiable polymath), I’m always on the lookout for new information. Recently, I learned about an interesting concept in Japanese culture called “Ma,” and ever since, I’ve been trying to work out how I can incorporate more of it into…
I’m not a superstitious person always on the lookout for signs and omens. I don’t read the wrappers on Dove chocolates or seek life advice from the paper slips inside fortune cookies. I consult my horoscope but merely for the entertainment value. However, the last few months have been rough,…
If there’s one thing the internet is good for, it’s inspirational quotes. They’re usually paired with a picture of a woman at the beach, her arms open to the sunrise, walking through a field of flowers, or raising her eyes to a sky full of stars. Or kittens. Kittens are…
I recently read “The Animal Family” by Randall Jarrell. It’s considered a children’s book, but like many stories written for kids, it has much to offer grown-up readers. The story is a simple one. A hunter is lonely. He has no one to share his life with and no…
One of the best things about my job is something called fact-checking. Before publishing an article, we go through all the stats, facts, quotes, and assertions, researching their validity. That’s how I came across a humdinger of a quote by Thomas Merton, a Trappist monk who lived from 1915…
Like most of you, I take medication for my multiple sclerosis. Copaxone is my medication of choice, though I have recently switched to the generic version, glatiramer acetate. I’ve taken shots every day for years, so I was thrilled when the dosage dropped to three days a week.
Last week, CNN’s Anderson Cooper broadcast an interview with “The Late Show” host Stephen Colbert. They had a lively discussion about comedy, politics, careers, and the like, but perhaps the most stunning eight minutes of the interview were focused on grief. Colbert, a devout Catholic, said, “It’s…
I am now 41, at the beginning of “middle age,” and I’m tempted to give it the middle finger. It’s a halfway point, a layover, a way station — a time to contemplate the journey so far and take steps for the bit that is to come. Because I have…
Living with MS can sometimes feel like you’re performing a one-woman (or man) show. Think about it. How many times have you pretended to be OK when you didn’t feel so hot? Have you ever shown your loved ones a brave face instead of upsetting them? Ever caught yourself acting…
For the last two weeks or so, I’ve begun my mornings by slapping on some makeup and, with my hair in hot rollers, sitting down to read a page or two from John Updike’s last collection of verse, “Endpoint and Other Poems.” The book has several standout pieces, but…
A few weeks ago, I told you that I’d made a decision: I had to slow down. I think and talk quickly. I work quickly and drive much too fast for my grandmother’s liking. Basically, everything in my life was fast, and picking up speed with each passing day.
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