I was diagnosed with MS in 1982, the Dark Ages. I remember my husband and I sitting across the desk from my neurologist. He told us it was probable that I had Multiple Sclerosis.
We went home, tried to absorb and add this uninvited guest to our family. I went back to work. I realized I might not be able to keep up with the demands of my work. I needed more control over my time. I needed more flexibility.
Going back to school to get a Ph.D. was on my bucket list. It was never on my radar that MS would stop me from doing anything! Maybe a Pollyanna or maybe I believed my determination would get me through. Fortunately, whatever fueled me worked and I finished my degree.
By now I was a few years into MS Land and I had begun to understand how MS played in my body. I developed some rules for myself. The first was a three-day rule. If a new symptom showed up, I would watch it for three days. If it didn’t go away, I would call the doctor. Of course that usually led to rounds of steroids which worked but made me crazy! My second rule was: If you play, you will pay. That meant if I pushed too hard because there was something I really wanted to do, I would have to set aside time to rest. Sometimes it was just worth it! My final rule: Sneakers are a fashion statement!
I went into private practice as a psychotherapist. My clients were people living with MS and other chronic illnesses. There were mornings I wished I could stay in bed. I went to work anyway. Once I was with a client I felt so much better. My clients were my medicine!
I treat my MS with respect and as a puzzle I have to solve. I have every piece of durable equipment I might need. I use a cane when I go to unfamiliar places. I use a walker when I’m falling too frequently. I use a wheel chair when I travel to New York. I was developing resilience every time I solved a problem created by my MS I was becoming more resilient.
The word resilient comes from the Latin meaning to rebound or spring back. I often think of MS like a rubber band. When symptoms flare up, I am stretched out of shape and sometimes I think I might snap. Then the symptoms dissipate and the rubber band springs back, but never exactly to its original shape. There’s a new normal.
I wondered if people were hard-wired to bounce back or if one could learn to be more resilient. Both, according to researchers, whose work suggests that we are born with a self-righting ability which can be helped or hindered. For me, I found the most important thing to keep in mind is to be realistic and positive. When I lose that attitude because of all the other stressors that come with being human, I try not to stay there for long.
I discovered some ways to help build up resilience that work for me:
Be thankful, especially for the little things.
Try something that you thought you couldn’t do anymore. After years of dancing in my head, I decided to try dancing lessons and in spite of terrible balance, dancing came back into my life.
Leverage your strengths, whatever they are. I am a social being so I work at not isolating myself. I feel the best when I am with other people. I try to turneverything into a social event, even exercising. I also like to write poetry; it keeps my mind working. Think about what you’re good at and use it.
Set good boundaries. Only you know what’s best for you. Learn to say no without feeling guilty. The people who are important to you will understand.
Savor the good in your life, even if you have to look for it.I live by this refrain:
I walk,
I fall down,
I get up.
Meanwhile I keep dancing.
Very nice. The ending works for me if I just substitute skating for dancing. Talk soon Janice
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Marla: this was so inspiring. Thank you for sharing this with me. I wish you and Lenny, the happiest of New Years. Karen
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Beautifully written, my friend.👏💕Myron
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