Why I Write About Living With MS

Patient Expert
Trevis Gleason

In early 2006, after a stint writing scripts and hosting webcasts on the topic of multiple sclerosis, I was asked by an editor for the health website that hosted those monthly programs if I’d be interested in writing a blog about my life with MS.

“Sure,” I answered. “What’s a blog?”

I had always loved writing in my youth, but was discouraged from serious endeavors into the field by a teacher at school who told me I’d never be a writer. When MS forced me from the career I loved as a chef and food scientist, blogging was a lovely way to reconnect with the old hobby I’d shelved for decades. It was also a way for me to try and be of use to the MS community, of which I’d unwillingly become a part in April of 2001, when I was 35.

I had, by that time, already developed a strong relationship with the National MS Society (NMSS) in the U.S. and, via the webcasts, with several internationally-renowned MS health care professionals. I was able to use the blog as a conduit for information from trusted sources as well as thrice-weekly musings as I tried to find my way over, under, around, and through the cascading challenges of living with this incurable disease.

As our audience grew — and through the divisive time of CCSVI in the MS community — my “Our Life with MS” blog became a safe place for communal conversation. And, while I’d never intended it to be anything beyond my personal views and experiences, a trusted source of information in and of itself. This led to invitations to write for the NMSS, The MS Society of the UK as well as a spot writing and editing for MS Ireland.

In early 2015 my memoir, Chef Interrupted, was published in the U.S. by Coffeetown Press and subsequently published in Ireland and the U.K. by The Collins Press. In autumn of 2017, we published my first cookery book, Dingle Dinners; from the Chefs of Ireland’s #1 Foodie Town.

I’ve co-written articles for international research journals and am soon to be listed as a co-author on a major research paper. So, I guess that even thought my high school writing teacher said it would never happen, I have become a writer.

After over a decade of writing about living with MS I have to wonder why I keep writing. I believe that I found the answer while recently reading a book on Irish history. I write for the same reason the author of the book said the ancient (and even not so distant) Irish didn’t write —but rather told — their stories. I write to remember.

Back beyond Roman times and into pre-history, Irish legends and folklore were stories told, not written and read, by talented and venerated people from all walks of life. They were heard, remembered, and retold for generations without much in the way of change. The act of remembering a told tale was thought to strengthen memory — both personal and communal — as well as create a more intimate experience with the story than could be had by simply reading it alone.

Telling tales out loud was the way the Irish remembered a common history until very recently. I write about MS for the same reason. I write so that I and our various communities can relive, can relate, and so that we can remember — because MS is one of those diseases that has us reliving challenges afresh more than we’d care to admit.

These communities are, however, a group effort.

Blogs are a unique method of communication. Unlike print or even web-based articles, the comments made by readers from the community are what have made the life with MS communities thrive.

I throw a few ingredients into the blog pot, give the conversation a stir and — unlike the old adage about too many cooks spoiling the broth – something truly special happens. A writer and his readers become a community. We learn from one another, we commiserate our losses and we celebrate our triumphs, no matter how small they may seem to the ‘outside’ world.

It is impossible to give voice to another’s concerns. What I can do, however, is give insight into my own experiences and offer space for those willing to share theirs. It’s a formula I stumbled upon early and that has served us well thus far.

Like all of us living with MS, I hope there will soon be a day when writing about this disease is no longer required. Until then, however, I know there are more symptoms to elucidate, more experiences to relate, and more stories to tell. So that we remember.

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