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When the winds of change shift

MS... IN MY OWN WORDS

By Maureen Reilly

Maureen Reilly

Maureen Reilly

Six years ago, I was at the height of my career, working 100 hours a week as an internet executive and living large. Signs pointed to MS, but I blamed fatigue, clumsiness, any number of normal things. Then a routine eye exam set off a sequence of diagnostic tests and I was found to have not one, but two diseases: MS and multiple myeloma, a rare blood cancer.

My MS symptoms worsened, and I was soon classified as primary progressive. I went from walking, to a cane, to needing a wheelchair outside the house in two years.

My life changed in other major ways. I’m used to working hard, as a teacher, political staffer and news editor. With MS, I learned very quickly that I couldn’t do that anymore. Now on Social Security Disability, I keep my mind occupied with volunteer work.

Inside my home, I can still get around with a cane or by “wall-walking”. Outside, I find freedom on a scooter or my power chair. I don’t see these aids as a crutch or a hassle. Rather, they are signs of my independence. They allow me to visit museums, aquariums, theaters, all that city life has to offer. I also travel around the country. It requires planning, but is quite doable.
 
When I’m feeling low, I turn to my family, my friends and my camera. Photography lets me capture the beauty that MS and cancer have made all the more precious. It has brought me happiness, recognition and pride. I enjoy it almost as much as sailing.

Nothing beats getting out on the water. Before the progression of my MS, I crewed on a magnificent sailboat out of Cape Cod. My disability means I can no longer hoist the sails, but it doesn’t mean I must give up what I love most in this world.

Maureen at the helm

Maureen at the helm

These past few summers, I took the helm of the 78-foot Schooner Liberte. Its Captain, Chris Tietje, had rigged a way for me to sit and steer. It’s exhilarating to be in command, to work with the wind, the tide and current, with destinations in mind, yet willing to change course if need be.

I realize the time may come when I will have to give up the helm and enjoy the ride as a passenger. Yet I’ll still feel the wind in my hair and sun on my face. I’ll still embrace life.

My favorite book, Richard Bode’s, First you have to row a little boat, gave me the title for this essay. His book contains many lessons, not the least of which is to enjoy the journey. So often we fight the wind, struggling to be what we once were. I have learned to go with it and adjust my sails.

About the author
Maureen Reilly, age 50, is a native New-Englander who now lives in Seattle with her husband, Jan Koso, and their two cats. She is active in the Chapter and also in the National MS Society’s online message boards and chat rooms.

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