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Neurology Now:
doi: 10.1097/01.NNN.0000424236.81484.60
Departments: Speak Up

Holiday Spirit: Multiple sclerosis has taught me what's important.

Tye, Denise

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Denise Tye lives in Cedarville, OH, with her husband of 21 years, three teenagers, two dogs, a cat, and a robo-hamster. She was diagnosed with multiple sclerosis in 1998. Five years ago, she returned to full-time work at Cedarville University, where she is currently employed.

Throughout my life, I have experienced a variety of holiday festivities, from horrible to glorious (and a whole lot in between). At the worst times, it was not so much the disappointment of failing to receive some gift I wanted but of failing to take in to account that I have multiple sclerosis (MS). I have always tried to show family and friends my love through making the holidays as wonderful as possible. As a 47-year-old woman balancing work, home, and church, I always strive to be the best at everything I do. In that respect, I'm probably not much different from you. But I grew impatient because I couldn't control the effects of my neurologic disease.

Early in our marriage—pre-kids and pre-MS—my husband and I would get up on Christmas mornings before the sun, race over to our niece and nephew's house, open gifts, play, cook, eat, clean, eat and play some more, and then head home. I had no problems keeping up. The festivities eventually moved to our house, where I gladly took on more responsibilities.

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Then the fatigue began. I still tried to do it all but ended up paying for it. When my daughter was four and my twin sons were two, we were driving to a Christmas party at my husband's office. Santa was on his way and lunch was about to be served. As we parked, I noticed that my body was fatigued to the point of collapse. Perhaps I shouldn't have decorated the house in one day, wrapped the pictures on our walls in Christmas paper with bows, put up the tree, and made several batches of cookies with the kids.

After telling my family to go in without me, I curled up in the back seat and fell asleep. When my husband woke me hours later, several inches of snow had accumulated on the van. We headed home as the kids told me about their visit with Santa and their new toys. I missed it—not just the memories of the festivities, but the point. That day woke me up to the reality of my disease.

Now, my family and I make a point to enjoy our holidays together. It is my responsibility to make sure I'm physically able to take part in the celebration. I have learned to accept that every Christmas decoration might not be displayed; as long as the special ones make their way to the shelves, I'm happy. I have learned to shop more efficiently, as my energy is worth more than saving a couple of dollars. I rest when needed, any day and any time of day. I prepare smaller meals, asking others to help out.

My favorite resolution is that I clean less—and make no apologies. The chains of guilt are gone. I feel unencumbered to love and be loved, without any qualifiers. This has freed me to recognize the blessings I have received from a loving God. Now, when I consider my disability, I see the gifts I never knew I wanted. I am learning to become more patient with myself and relinquish a false sense of control over my MS. In doing this, I have come to realize that my family wants me to be part of our time together, with or without all the extras.

©2012 American Academy of Neurology

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