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Stuck in the Middle

By Kristen O'Toole
December 15, 2020

“Here I am. Stuck in the middle with you,” as the old song lyric goes. For me, the “you” in that lyric is MS.

I know many people who say that their MS is the best thing that ever happened to them. I’m happy for them that they’ve reached that point, but I’m not quite there. I try, but I’m just not. So, “stuck in the middle” is apropos for the way I feel.

Thankfully, now due to medical advances, many with MS can live their lives without daily reminders of MS. For others, their MS has progressed to the point that their disease and its ravenous symptoms are all they can think about.

I think about MS progression in terms of a spectrum, as I do most things in life. I fall somewhere in the middle, more toward the progressive side, like my politics, my age and many other parts of life.

I focus on what I can do, not what I can’t. But my life is so different now, sometimes it’s very difficult to be thankful. Every morning, I count my blessings, which is the first piece of advice that people gave me. I’m sure you’ve heard it too.

I have a lot to be thankful for, but that doesn’t negate the fact that a lot has been taken away from me too. I think it’s okay to feel both. Don’t dwell on what’s been taken away, but acknowledge it.

Prior to me using a wheelchair, which was the same time as my RRMS diagnosis six and a half years ago (yes, my legs literally were pulled from under me), I lived exactly the life that I wanted… lots of travel, urban living, wining and dining, cooking and entertaining for fun. I was a newlywed and established in my career and had a lot of friends. I was looking forward to continuing to live the life I had designed for myself.

Life had its own plans. MS certainly taught me that. COVID-19 has taught us all that. 

Since my diagnosis of MS, I don’t travel much at all; bought a house in the ‘burbs; don’t drink and have a very limited diet. Walking to restaurants or shops is not an option for me. I don’t work out of the home, and do very limited cooking or entertaining… even before COVID-19. I don’t have the energy to cook (if I could even reach the stove).

I have gotten a lot better since my diagnosis, but I have not regained the ability to walk solo. I can stand… if I have something to hold on to. I walk with a walker in therapy only – flat, fall-forgiving surfaces. So, I’m in the middle of walking and not walking, not for lack of trying.

There are certain things that I know I can do, but I don’t necessarily want to, and that is okay.

I feel that we get a lot of judgment from the outside. No one can know your situation but you. Whether you’re in the middle, like me, there are always going to be people who seem to have it better than you or who seem to have it worse off. Try not to worry about it. You do you.

Kristen O'Toole

Kristen O’Toole is a former public relations executive. She now volunteers for the National MS Society as a Walk MS Team Captain, District Activist Leader and serves on the Government Relations Advisory Council for her state, Pennsylvania. In 2019, she was named Southwestern PA’s MS Activist of the Year. She was diagnosed in 2014 and wants to raise awareness and understanding about MS until we find a cure.

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