How to Accept a New Reality: If You're Medically Retired With MS

by Trevis Gleason Patient Advocate

In American culture, people judge you by what you do for a living. So what happens when your career is taken away by multiple sclerosis (MS)?

Being diagnosed with an autoimmune, neuroinflammatory, and neurodegenerative disease of the central nervous system changed much about me. It changed what I did, what I could do. It changed how the world saw me and how I see myself fitting into that world. It changed my impression of myself and what I find important in life.

I’m oft to say that we do what we do until we can no longer do it … Then we find something else to do. It’s finding that something else that makes all the difference. But finding a new purpose in life after MS has taken so much from us can be difficult.

I was one of those American men who defined himself by what I did for a living. If ever there was a poster child for the old Hollywood saying “Don’t believe your own press,” it was me. Just at the moment I thought I could actually reach the outer edge of my ballooned persona — “The Chef” — MS stuck a pin into it and I was left to fight my way out of the collapsed, deflated shell.

That fight was a difficult and unhappy one. A fight which saw me give up much ground — both personally and professionally — but once the tactical retreating was done, I was able to form strong defensive lines and begin a more strategic battle for a new fulfilment in life.

That was the first lesson I learned about finding a meaningful life after diagnosis with MS: that retreat was not defeat. In fact, it can be a sign of strength.

I’d like to say that I learned these lessons quickly upon my diagnosis in April of 2001, and subsequent retirement from professional life due to MS five months later. That would, however, be telling both reader and writer a fib.

I’ve always said I was a head-before-heart kind of guy. I also say that it took me about five years to get my head around what MS was doing to my body before I could get my heart around living with MS, and what the disease could do to my life if I allowed it.

With effort I have found other things — things beyond my work as a chef — from which I can derive great joy, satisfaction, and purpose in life.

I am a chef by training, a food scientist by education, a writer for passion, and an advocate for people living with disabilities … out of necessity.

While I can no longer handle the heat in the kitchen, my experience is a sought-after resource, my knowledge an asset. My writing feeds my soul and, I humbly accept, nourishes others as well. The advocacy work I have been able to take part in on the international stage has helped to lay the path for those who will come after us.

I cannot do many of the things of my past, yet I endeavor in matters I wouldn’t have imagined undertaking before my MS required them of me. I will not always (or even often) succeed, but I will not stop trying.

Defeat may be in the cards because failure is simply the other side of success. If I venture to try, considering my current abilities, I may fail. One can avoid the possibility of failure by not endeavoring in the first place. But, if I don’t try, I am destined not to fail, but rather to forfeit. There is no shame in losing; there is no excuse to forfeit.

So, I continue to set the bar and set it high(ish). It’s a different bar than I once hurdled and had a height at which I might once have scoffed. Still, there are goals for which to strive (and sometimes miss), and successes to attain.

The same can be true, if in varying degrees and in various disciplines, for all of us.

Trevis Gleason
Meet Our Writer
Trevis Gleason

Trevis L. Gleason is an award-winning author, chef and blogger who was diagnosed with secondary progressive multiple sclerosis in 2001. Gleason has been published in several international newspapers as well as research journals. An ambassador for both the National MS Society and MS Ireland, he lives and writes about living with MS in Seattle, Wash. and County Kerry Ireland with his wife Caryn and their Wheaten Terriers, Sadie and Maggie. His book, Chef Interrupted, is available on Amazon.