The Power of Speech: I Talk to People for a Living. Myotonic Dystrophy Makes It Harder.

I’m lucky, I remember thinking to myself, my iPhone wedged between my left shoulder and cheek, that this isn’t a more important story. It was late January 2022. About two weeks before, on a Friday afternoon, a genetic counselor from the Johns Hopkins Hospital called me to confirm news I had dreaded for almost two months. Several weeks before Christmas, I sat in the office of a Johns Hopkins neurologist describing to her a series of symptoms I had lived with for just under two years: Cataracts. Clawing in my hands. Pulsing aches along both arms, running from elbows to fingertips. A seemingly inexplicable need, on many days, to take a nap at 3 p.m. because if I didn’t, I wouldn’t be able to stay awake until dinner. And, most notably, unending pain in my mouth.

By then, for months, when I bit into food or tried speaking, sometimes my jaw just wouldn’t move, and my tongue would twist and contort into a position so cumbersome and sideways that I couldn’t even form a sentence. This symptom, where muscles contract and cannot relax, is called myotonia. In an article published in 2023, I characterized the sensation of myotonia in my mouth as taking “the worst shot of tequila you’ve ever had” — cheeks sunken in and lips puckering — and then being told to start speaking.

Andrew’s father, John (right), has mild DM1.

That Friday afternoon conversation with the genetic counselor made sense of it all: I had — I have — type 1 myotonic dystrophy (DM1) and all the classic symptoms of that disease. I was 32 years old.

Suddenly, the question “What’s your number?” took on a whole new meaning. DM1 is caused by abnormally expanded stretches of the DMPK gene, which is composed of strands of the DNA bases cytosine, thymine, and guanine (CTG). These bases repeat, and, with few exceptions, anything over 50 repeats results in DM1. Generally, the greater the number of repeats, the more severe the disease. My CTG count clocked in at 140, and while that sometimes means just a mild case of DM1, I am absolutely classic. It was appropriate, I thought, given my taste for jazz and expensive bourbon.

Which brings me back to the phone. I’m a freelance journalist and a writer for many magazines: Outside, Bloomberg Businessweek, Popular Mechanics, Washingtonian, and a slew of others, including GQ, where I’ve written a column on health and nutrition since 2020, long before I experienced any signs or symptoms of my condition.

This interview was for a column about deficiencies in vitamin D and how many Americans possess levels far below the norm. (Incidentally, in 2018, my primary care physician ordered a test for me just to check. Swimming through my vessels was a mere 21 nanograms of vitamin D per milliliter of blood, which is considered insufficient. Hindsight, as the saying goes, is always 20/20, and if I had known then that low vitamin D is common in DM1, I might’ve taken that as a sign. Still, it’s not as if I knew in 2018 what would be revealed to me four years later.)

The doctor on the phone with me was explaining the usefulness of vitamin D in the body. Yet I could barely move my mouth. Which is kind of a problem for someone whose ability to do his job depends on his being able to ask questions.

And I just couldn’t. At one point, I recall using my left index finger and thumb to form a vice grip on my jaw and move my mouth up and down just to put words together.

Andrew Zaleski

I’ve often felt more relieved than overwhelmed in the years following my diagnosis. Knowing what is happening to me is its own form of catharsis. And I know this could be worse. I hope it doesn’t get worse. But in every interview I go into, whether on the phone or in person, the thought lingers at the back of my mind: Is my mouth going to cooperate?

What a strange game of chicken I continually play, my psyche and my myotonia locking eyes, wondering who’s going to blink first.

I’ve looked for ways to deal with this. Usually, I try to set up phone calls for the afternoon, when the muscles in my face are more warmed up. When I’m out on assignment, I try to meet in the afternoon, although it’s not always possible.

In fall 2022, well after I’d been living with the knowledge of my DM1, I went gallivanting around old orchards in Washington state for an Outside story about apples. The guy I was profiling told me before I even flew out there that we’d begin the day at 9 a.m. Which means at 8:30 a.m., I was sitting on the couch in my hotel room wiggling my jaw around. Opening and closing my mouth. Moving my face side to side. Rubbing my cheeks like I was trying to start a fire with my beard. All so that when I stepped into his truck, I could actually say, “Hey, nice to meet you finally.”

My cardiologist, a wonderful doctor at Johns Hopkins named Andreas Barth, is always quick to tell me that mexiletine, a drug that might temper my myotonia symptoms, is an option. I’ve tried putting it off — which is probably a subconscious stubbornness more than anything else. I’m willing to bet that by the time you read this piece, I’m on the drug, hoping that it works.

But this, I suppose, is why I write. As long as I can string sentences together, I’ll have my voice.

Andrew Zaleski, 35, is a freelance journalist living near Washington, DC. He wrote about his DM1 journey for GQ in February 2023.