My Year-end MS Zen
Not long ago, I dreamed I was running. Again. It was the first time I’d had the dream in a while. It was always the same, “Been Caught Stealing,” or something like it roaring in my headphones, me in stride and rhythm with the song. And then just as I was really flying, it was over.
I have not been able to run since 2010. Every time I think I’ve forgotten it, the dream would pop back into my head and the whole process would start over. Kind of like getting over a lost love and then bumping into them again.
This time was different.
Dec. 27 will mark the fifth anniversary of my MS diagnosis. (Like a lot of people with the disease, my first symptoms appeared many years before diagnosis.) After five years, I think I’ve finally learned how to have MS and achieved a sort of “MS Zen.” Maybe not Zen with a capital Z, borne of meditation, spirituality, diet, etc., but rather more of a lowercase Z, with me paying attention just for a minute.
That counts for something, right?
In early November, my PT/MS life coach Barb told me I should quit trying to manhandle myself into better shape like I once could. Trying to do so, she said, was likely exacerbating my problems. It was at the height of my trucker butt, and on the heels of rotator cuff surgery and a couple of bad falls. “You’re just not that person anymore,” she said gently.
It wasn’t the first time she’d shared that advice. It was, however, the first time I had bothered to hear it, then actually listen to and follow it.
We developed a much less strenuous exercise routine, and I am now feeling better than I’ve felt in a long time. Dealing with the physical challenges and debilitation of the disease seems to be a little bit easier, at least for me. Within the last six months, I’ve discovered that as MS goes, my brand of the disease — primary progressive MS, or PPMS — is at least somewhat predictable, and perhaps naïvely, I find that comforting.
The mental challenges that come with that physical debilitation have been more strenuous. Like many with PPMS, I was diagnosed later in life, at 53. If that’s relatively late in life to receive a diagnosis like MS, it’s also late in life to have to recreate yourself. I understood that physically, I wasn’t the person I once was, but I had a hard time letting that year’s model go. Like many with MS and other chronic, debilitating diseases, the loss of self-reliance and independence simply wasn’t easy for me to embrace.
I’ve come to think that MS and its slow, ever-changing debilitation — and the mental struggles that come with it — demand reinventing myself in some small way, every day, like it or not. After five years (and Barb’s advice), I’m learning to think of it as an opportunity to better the part of my “self” not defined by the disease. Think Bill Murray’s character in the movie “Groundhog Day.” The story is about cynical TV weatherman Phil Connors, played by Murray, who is forced to relive a single day from his life — Groundhog Day — in an eternal doom loop until he changes his values and realizes just how much he really has.
I can’t will my capacity to return, can’t make MS magically go away. There are many things I will never be able to do again. I am more like Phil Connors than I care to admit, and some of the challenges I may be facing are more than a little frightening to me.
The truth is, my life didn’t change much today. Chances are it won’t tomorrow. Like others with the disease, I can still be kind and grateful to the many, many people who go out of their way to help me. I can still be helpful to my wife, though what that help looks like is very different.
After five years, I’ve learned that this can be my MS. I still have bad days, slowly losing my capacity, and still often struggle to come to grips with the new man. The funny thing is that all of it would have been possible to do throughout my life with or without MS. The old version of me just didn’t think that way. The new version is trying not to run away from the opportunity — maybe responsibility — as much anymore. And when I fail — which I do, and will continue to do — I take solace in knowing that I may well have the chance to do better tomorrow.
Thank you so much for reading my work (and to BioNews Services for publishing it), as it means the world to me. I hope I may have been helpful to you somehow and in some way. Regardless, I wish you a happy holiday, and a terrific 2019!
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.