This Is Me, and This Is How I Live with My MS

Ed Tobias avatar

by Ed Tobias |

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Have you ever read something and thought, “This is me, this is my MS”? It happened to me today as I read a post by Rachel Horne on the BartsMS blog.

Horne writes about how some of us adapt to our MS diagnosis better, or at least differently, than others. She says that “some people with MS manage to adapt and even thrive despite all the disease takes from them. Somehow they find new meaning in their life, forge new identities and preserve a sense of self.”

That’s me. I don’t think I’ve found new meaning in my life or forged a new identity over the 39 years that I’ve lived with MS, but I have definitely preserved a sense of self.

How did I do this?

Horne says this preservation of self comes from accepting and adapting. She shares sociologist Kathy Charmaz‘s definition of adapting: “altering life and self to accommodate physical losses and reunify body and self accordingly.”

Charmaz says that adapting happens in three stages, which Horne summarizes: “First, by experiencing and defining impairment; then by making bodily assessments and identifying trade-offs and finally – by relinquishing control over the illness and flowing with the experience of it.” The progressive nature of MS means that adapting is an ongoing process.

That’s me. I live with my MS as best I can. I don’t “battle” it. I live with it. I go with the flow. This didn’t happen immediately or all at once; as my MS evolved, so did I. I’ve never mourned what I’ve lost, as some people with MS seem to do. I’ve simply adapted slowly as my mobility has slowed.

First, I started using a cane, then a functional electronic simulator to help counter my foot drop, then a scooter and two canes. My MS progressed so gradually that none of the life modifications my disease demanded seemed to be very drastic. I have moments of frustration — more of them as I grow older — but I’ve been able to roll with those punches.

Support was a key

I’m very fortunate. I’ve had great family support, a couple of excellent neurologists, and an employer who was willing to work with me so that I could continue my challenging, enjoyable career with them for a little over 32 years.

On the other hand, I never looked for support from an organized MS group. I was recently asked why, and looking at myself honestly, I found that the answer is that a couple of times that I attended a local group meeting, I felt more disabled than I wanted to feel. Maybe that’s foolish, or even selfish somehow, but it’s one of the ways I deal with my disease.

I realize that there are people who are much more disabled than I am and that there are people who have had a lot less support. If you’re one of them, you may feel very differently about your MS experience. For that, I’m sorry. I hope that, as Horne writes in her post, you will be able to “find new meaning in (your) life, forge new identities and preserve a sense of self.” I truly believe that, rather than hide from the storm, it’s much better to at least try to learn to dance in the rain.

You’re invited to visit my personal blog at


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Ishmael Williams avatar

Ishmael Williams


And thank you for that ending thought. All things considered I'm pretty mobile and functional; in fact by some standards I'm not disabled at all. Yes I have a hitch in my gait (hip \ knee spasticity issues) and I walk slower (wonder if being 62 contributes to that) but I'd likely be more considered one with an invisible disability as opposed to disabled.

Reading a lot of blogs often leave me feeling even more disabled though, and more sad-almost-depressed. I'm fervently searching for people with MS who are striving to thrive. I had read the article you quoted \ mused on and it's the way I feel.

Here's hoping I can stay with that.

Ed Tobias avatar

Ed Tobias

Hi Ishmael,

Thanks for sharing your thoughts.

I, also, hope you can continue to strive to thrive. Or, as an old advertisement for the US Army used to say "Be all that you can be."


rachel horne avatar

rachel horne

So glad my piece resonated with you. I have a feeling that anyone with a chronic illness reading this heartfelt piece would identify with it - not just those of us with MS.
All the best,

Ed Tobias avatar

Ed Tobias

Hi Rachel,

It was too good not to share. I'm glad that I saw it and appreciate your permission to pass it along to others. You're right, it will resonate with anyone with a chronic illness.



Cyndi avatar


Thank you for the thoughtful article Ed. Good advice. In truth, I'm just not there yet. I am a lucky one with the blessings of all the support and mobility toys available, and yes I use them to do things otherwise unattainable. In short, my current physical limitations (canes and scooter dependent) and slowly advancing disability are "taken care of" but my mind is not. Rightly or wrongly, I am bitter for what I have lost and will never regain. Sounds pretty selfish and ungrateful considering all I do have - but I'm being totally honest. I miss me, I want to be me, I want to be the person that others loved and gravitated to for fun, travel, advice, and friendship -- not to assist with disability management. Again, I realize I'm so very fortunate to have such great support. I just don't want it, I just want to be me.

Ed Tobias avatar

Ed Tobias

Thanks for your comments, Cyndi.

I can't blame you for wanting to be the person you once were. So do I. In the winter, when we snowbird to a beautiful community in Florida, I scooter-walk our dog past a beautiful tennis facility a few times a day. I really miss playing that game, even though it's been over 20 years since I held a racket and I wasn't particularly good at it.

It's strange what I miss and that tennis is one of the few things that resonate with me. But, I can't say that I've ever been bitter about what I've lost. I don't know why. But I'm glad that description doesn't fit me.

When I was in high school I wasn't a great student. I'd sit in the back of the classroom and only raise my hand when I'd catch the teacher (in this case, my favorite) making a mistake. "Ya gotta be positive, Eddie" he told me one day. I guess I've taken his comment to heart.



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