When Trevis Gleason found out he had multiple sclerosis in 2001, he knew nothing about the incurable disease – other than Annette Funicello also had it. Here, his journey from diagnosis to becoming an inspiration for the MS community.
In high school, Trevis Gleason dreamed of becoming a writer. However, when a teacher dismissed his dreams, saying he would never be good enough, Gleason, now 45, shoved it into the back of his mind.
It wasn’t until he was diagnosed with multiple sclerosis, the autoimmune disease that affects nearly 400,000 Americans, that Gleason was finally able to make his childhood dream come true. And, of course, the path to becoming a full-fledged writer with a dedicated following (and landing on the cover of the National MS Society’s monthly magazine Momentum, with his wife, Caryn Almgren-Gleason) with a dedicated following was not an easy one.
‘I Thought I Was Having a Stroke’
In 2001, Gleason was heading to the airport for a flight home after a business trip for his job as a corporate executive chef. “My friend told me on the way to the airport that I was being a little loopy,” he recalls.
Gleason had already racked up 248,000 miles from flying that year and didn’t think much of it – until he boarded the plane.
“It felt like the causeway just stretched out in front of me and like I was walking through mud,” he says. Before the plane had taken off, Gleason was sound asleep in his seat.
When he landed and had to make his way to another gate for his connecting flight, the walk took him the entire layover. After landing in Seattle and driving the hour-and-a-half to his home, Gleason still couldn’t shake his fatigue. “That night I started to get worried. I was going from one room to another, and I could hear my foot flapping on the hardwood floor,” he says.
The next morning Gleason didn’t feel any better. His upper back and neck ached, his face felt “doughy” and was a little limp on the left side. “Frankly the first thing that went through my mind was that I was having a stroke,” he remembers.
Thinking a pinched nerve might be to blame instead of a stroke, though, Gleason scheduled a massage and then a doctor’s appointment. There he found out he had secondary-progressive multiple sclerosis, and had probably been experiencing symptoms of it since his early twenties.
”I could only make the connection that Annette Funicello [the Disney Mousketeer] had MS,” Gleason says of his initial reaction. “It was pretty foreign to me.”
During his initial three-day course of steroids, Gleason met up with a friend for coffee. “She had just been diagnosed with a very aggressive stomach cancer,” he says. As they sat together, each with a hep-lock, a small tube attached via a catheter to an arm for quick delivery of medication, Gleason realized everything had changed. “I thought, ‘What has happened to us?’ We’re in our mid to late thirties and what the hell,” he recalls. “It was very striking to me that life had changed drastically and it was not going to be what I had planned for. I had always thought I would, one day, take over as president of a major culinary school. The limitations that MS put on my body and my mind made that dream impossible. ”
Finding a New Purpose
It took around three years until Gleason finally accepted his MS diagnosis. During that time, he quit his job because of the diagnosis, left his first wife (“I just couldn’t handle what my future might be there”), and worked with a rehab psychologist to help navigate his conflicting feelings. “We determined one of my problems was that I didn’t seem to have a purpose,” Gleason says. So he contacted his local chapter of the National MS Society and began stuffing envelopes and doing office work on a regular basis.
Over time, Gleason became more involved with the chapter and was asked to start the first-ever national self-help group for men with MS, which strikes women two to three more times as men. “We call ourselves ‘poker night’ so no one has to say we’re going to a self-help group,” he says, noting that the group still meets.
Shortly after, in 2006, Gleason was was hosting MS webcasts for HealthTalk.com and was asked to start a blog about living with MS for the site (which was acquired in 2009 by Everyday Health). In his first blog, Gleason invited his readers to “walk (or scoot, or wheel) along with him on this journey.”
And, over the course of six years, they have. Gleason writes a few times each week about anything from his symptoms to treatments to caregivers. “All I’m trying to do is what I think anyone else would,” he says.
Gleason credits the blog’s success to his readers, who he calls his community. “I like to think that in some way the blog makes life a little bit better for the people with MS,” he says. “I may write about a description of a symptom that someone couldn’t put into words, but now they have a way of explaining it to their doctor or their family and feel empowered.”
While readers comment often and thoroughly on Gleason’s musings (sometimes there are hundreds of comments on a single entry), more opt to share their own experiences with MS instead of simply offering support for Gleason. And that’s exactly what he wants. “I have to give complete and total credit to the community,” he says. “I just simply stir the pot once in a while.”
Gleason hasn’t confined his MS advocacy to his Everyday Health blog either. He also writes blogs for the National MS Society and the Multiple Sclerosis Society of the United Kingdom (A Yank’s Life With MS). After he started his own Team Gleason in Seattle for the MS Walk in 2004, several other Team Gleasons have since popped up around the country run by his friends and family. “I didn’t reach out so much to people as the people in my life reaching out to me,” he says. The teams each lead their own fundraisers and participate in the walks. “All I do is connect the captains,” Gleason says. “And send the Team Gleason t-shirts.”
Over the years, Gleason estimates the teams have raised about $100,000. “What I’m most proud of is that the money is raised with love and old-fashioned bake sales, pub crawls, golf outings, house party auctions, and the like, while informing people and offering them a way to support the cause.”
It’s the weekly interaction with his community, though, that fuels Gleason. “What’s most important to me is that I open up a conversation and that they leave part of it,” he says. “I’m not making the disease better, I’m not taking away any symptoms, but if I can help people cope better, then that’s very rewarding.”