At one time I would have bemoaned, bewailed, and heartily bristled against the prohibitions on lifting, exercise, movement, and general activity placed upon me. But this time, I seem to have settled into a fortnight of doing less with an unexpected grace. “Thanks, MS”?
I’ve Had a Lot of Practice Modifying and Adapting
Those who have read the Life With Multiple Sclerosis column for much time at all will know that I’m not one to give (any) credit to multiple sclerosis (MS) for “teaching” me anything. I have, however, been a good student. Years — now decades — of altering, modifying, adapting, adjusting, regulating, and sometimes canceling one conduct or another has made this current temporary sequester a figurative walk in the park (figurative for the obvious reason). A couple of weeks of light duty and I’ll be back to “old normal,” which is, of course, an ever-changing “new normal.” I suspect that many of us have come to terms with some of the limitations multiple sclerosis has put on our lives. Not that we have given in to them easily (or consider it giving in at all), or that we’re happy we’ve handed back our membership cards for some activities for good. Rather, I’d say that one of the keys to successfully living with a chronic and progressive condition is to think of it as more of an exchange than a surrender. “Right, what’s he on about now?” I can just hear it.
I Still Seek Joy, but From Different Sources
As many of you will know, Caryn is a behavior therapist (board certified behavior analyst — BCBA). As she has helped me with these blogs and my books over the years, I’ve returned the favor by proofreading many of her academic papers. And I’ve learned a good bit from her work about living well with multiple sclerosis. In this case, I have learned new, replacement behaviors as well as how to assess my preferred reinforcers that — while perhaps not offering the same level of joy as previous ones — reward my efforts. Let’s face it: Once the result of one activity or other becomes aversive, either because of the amount of energy spent or the recovery required afterward, it’s time to change the form of that activity to meet (or at least approximate) its function. In other words, some things just aren’t worth the effort they now take, so I try to find activities appropriate to my abilities that give me similar joy. Gardening isn’t the same as running multiple restaurants, but it does provide a measure of creative reinforcement. Cycling to the pub for a casual pint isn’t flying halfway across a continent to speak at an event, but it affords interaction and social stimulus. Writing down my successes (and failures) for others to read isn’t consulting on a multinational business proposition, but it fulfills a sense of purpose and allows me to “be of use,” as John Irving wrote in The Cider House Rules.
At Least I Know the Current Limitations Will End
Asking for a little bit of help and curtailing an activity or two (or 12) for a couple of weeks is not only easier because of all these years living with MS, it’s also preferable to the consequences of not doing so. That’s a lesson that took a good few battle scars to take fully on board, but I’m glad I got here eventually. Besides, it’s not often that we get the profound luxury of knowing that limitations placed on us have a (mostly) firm sunset date. Wouldn’t it be nice if that were the case with MS? To know when an exacerbation and its resulting symptoms and disability will abate and what we’ll be left with afterward? I guess I’ll take this one as a small victory and look forward to being released to regular duty, even though my “regular” is far from what it once was. Wishing you and your family the best of health. Cheers, Trevis
