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Musings on Uncertainty

Planting my plot in the community garden every spring and fall is an optimistic gesture in the face of uncertainty.

Uncertainty is one of life's inevitabilities. And we all cope with it and accept it – more or less. But a chronic disease like MS can raise that level of uncertainty to a new level - to scary, unfamiliar territory. MS is especially unpredictable with a wide range of symptoms and rates of progression. My diagnosis left me reeling. I didn't know how to get on with my life with the added uncertainty of MS.

 

Soon after my diagnosis, I had a dream that I suddenly couldn't move – at all.  When I tried to open my eyes, I couldn't see. When I tried to call for help, I couldn't speak. I woke up more terrified than relieved, realizing that the shadow of MS, a disease that could take away most of my ability to function, would never leave me. I could wake up paralyzed. The dream was far-fetched, but elements of it were true possibilities.

 

When first diagnosed, I felt great despair because I was pessimistic. Instead of uncertainty, I felt certain of a dismal future. I thought I had to abandon my dreams because I couldn't take on a new challenge. I couldn't switch jobs, or travel, or push myself to new limits.

 

Yet, over the years, I have proved myself wrong. I have had new MS symptoms and relapses, but I've recovered each time. I've traveled to five continents, run two marathons, and accepted leadership positions with new responsibilities.  And I've formed a tense alliance with uncertainty. Some MS-related decline is likely, but it's not certain. If it happens, I'll still probably be OK. Because when there is uncertainty, there is hope.  

 

In addition to a shift in attitude from despair to hope, here are some strategies for dealing with uncertainty:

1)      Cultivate healthy habits that you can do every day to give you structure and some sense of control. For me, exercise and meditation are key ingredients for a good day.

2)      Read fun "escape" books when you need a short break from reality. You can follow me on GoodReads suggestions: https://www.goodreads.com

3)      A sense of humor is essential.  Dave Bexfield's uplifting and inspiring website and blog epitomize how to do this well: http://www.activemsers.org. Despite significant disabilities from his MS, Dave continues to travel the world via wheelchair and stays active as a cyclist and adventurer. He finds humor in every inconvenience he experiences as a wheelchair-user and MS warrior, and then he shares his funny tales of woe with his readers.  

4)      Keep a journal. I write every day. Sometimes I look back at past entries, and it's encouraging to see some of the challenges I have overcome.

5)      Talk about it. Uncertainty is stressful and frustrating. Share your feelings with a trusted friend or family member or a counselor. It's OK to feel rage and sadness and grief. Sometimes you just need to vent.

6)      Plant a garden. I joined a community garden a few years ago. Planting my spring or fall garden is always an optimistic gesture, equal parts uncertainty and anticipation.  I don't know what the conditions will be like to support the garden. In my first winter garden, the Brussel sprouts were a flop, but the kale was wonderfully out-of-control. I don't even know for sure that I'll be physically capable of harvesting my vegetables when they are ready each season, but I counterbalance that uncertainty with hope.

 

Please share your ideas for coping with uncertainty in the comments below. I'd love to hear from you.

 

 

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