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Give and Take: Multiple sclerosis has taken so much, but also given me precious gifts.


doi: 10.1097/01.NNN.0000394661.37484.19

Patti Ordnung is a retired wound care nurse who lives with her husband, three dogs, and two cats in northwest Missouri. She was diagnosed with primary progressive multiple sclerosis in 2007.

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When I sleep, I'm still a long distance runner, flying so fast that my feet leave the ground. I walk without stumbling. Sometimes I dance gracefully, wearing the spike heels I loved so much.

When awake, I can't walk more than a few feet without holding onto a grocery cart or another person. My once fluid gait now lurches, even on a good day. A few years ago, without my permission, my trademark high heels were swapped for a diagnosis of primary progressive multiple sclerosis.

Multiple sclerosis (MS) is sneaky, stealing pieces of me one tiny bit at a time and robbing me of the dignity that comes with being completely independent. I no longer ice skate on Sunday afternoons or walk my dogs. The disease has forced me to give up my beloved career in nursing. Exhaustion trails me constantly, yet sleep is fitful at best. What I miss the most is the simple luxury of walking without staggering. The old cliché of not missing something until you no longer have it has never been more meaningful.

But MS has also given me a few things in return. As a patient now instead of a caregiver, I finally understand the frustration created by unanswerable medical questions. Sometimes “We don't know” just isn't good enough. The disease has enabled me to understand what it's like to hurt, really hurt. Although the pain isn't present every day—thankfully—it has given me an entirely new perspective on the distress that physical pain causes for millions of people.

Always the first to hit the floor and the last to leave at the end of my shift, I even nursed in my head when I wasn't working. Hours spent not taking care of others were wasted hours. This left precious little energy for any other aspect of my life. My time now belongs to me. I read, write down my thoughts, or simply watch our three huge dogs romp and bark with the gusto of puppies. There is plenty of room for my family. Having spent our entire adult lives in different cities, hours apart, my two sisters and I have come full circle and I'm reassured that I'll always have a soft place to land.

Most of all, MS has given me a daily appreciation for the funny, loving husband that all women should be fortunate enough to have. When I crouch down to retrieve something and get stuck, he is always there to hoist me up by the seat of my pants, literally and figuratively. Together we have learned to laugh at MS without making light of this massive, unsolicited change in our life together. We now know what's important in our world and what isn't.

Some days overflow with frustration. Because I started out with primary progressive MS (I've always been a high achiever!) my neurologist said the typical treatments wouldn't work for me. And my gait disturbance is quite severe. Nevertheless, I'm lucky to have made it almost 50 years without symptoms. I feel fortunate not to be more debilitated than I am.

If I haven't learned to love my MS (truthfully I don't see that happening) I've at least learned to tolerate it. If there is ever a cure, I'll be at the head of the line to receive it. Until then, I'll continue to cultivate the positives it has given me, and to live with the peaceful co-existence we have developed, my multiple sclerosis and I.

©2011 American Academy of Neurology