A Life in Letters — Jamie Hughes

I don’t know about you all, but when I first learned I had multiple sclerosis, I felt utterly powerless. Weak. Beaten down. Cornered. Cowed. Yes, I experienced all of these negative feelings (and a hundred more besides) in the first year or two after my diagnosis. But after time, I…

“Be patient toward all that is unsolved in your heart and try to love the questions themselves, like locked rooms and like books that are now written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be…

Well, friends, we are coming to the end of 2020. Thanksgiving is next week, and believe it or not, Christmas is just around the corner. And while I can’t say I’m grateful for all the challenges this very weird and wacky year has presented me with, I remain so for…

Well, folks, we made it to the end of a very long political season and an even longer week. I don’t know about you, but I don’t feel a bit relieved. In fact, I have tension and stress trapped in every muscle and joint of my body. And that’s not…

A few weeks back, I listened to a segment on NPR’s “Here & Now” featuring superstar pianist Lang Lang and his latest recording project. I’m still thinking about it. He decided to tackle Johann Sebastian Bach’s masterwork, “Goldberg Variations.” No mean feat, seeing as how there are 30 variations…

Despite the melatonin and Kava tea, the hot baths and weighted blanket, I’m not sleeping very well these days. I haven’t been for months actually. In addition to the “low-burn” stresses that come with adulthood and the utterly average cares of the workaday world, I have felt a…

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…