Sometimes I see gems I may have missed. Often, I see memories of wonderful experiences with dear ones. And, if I look hard enough, I usually find lessons that I’d forgotten I’d learned. I’m a couple of months past the 21st anniversary of my diagnosis with multiple sclerosis (MS) and a couple of weeks away from a mid-decade birthday. It seemed like a good time for one of those annual(ish) pauses.
What We Learn From Living With MS
This year’s reflection coincides with the manuscript for my latest book being shopped around to publishers by my literary agent. The tome, as it so happens, relates to the myriad lessons I’ve learned over the past 16-odd years of writing about my life with MS. We’ve all learned something from our time with MS — even if, like myself, you don’t give MS the credit for teaching you. Surely our experiences living with some of the social isolation issues of our disease came in handy during the various levels of COVID-19 lockdowns over the past few years. Many of us have grown accustomed to periods of MS-induced solitude and have figured out ways of making them palatable if not productive.
For Me, Mistakes Preceded Lessons Learned
I’ve found in the scanning of my MS history that I made quite a right and proper hames (clumsy mess) of things in the beginning. Those first few years of my MS history are strewn with mistakes, missteps, bad decisions, worse responses, and hard-fought recoveries that left me more bruised than even the disease’s damage did on its own. It’s fair enough to say that I was a pretty good example of many of the things we shouldn’t do (or at least should try to avoid doing) as I tried to get my head around what MS was doing to my body, my brain, and my life. I’m saddened to admit that I did more damage to the “life” part of it than MS did in those early years. Admitting it, however, has helped me to turn those misfortunate decisions into lessons. If I hadn’t learned from them well, then they would just have been mistakes ripe for the repeating.
How We Respond Affects How Much We Suffer
Another apologue of living with MS is the realization that, good days or bad days, it’s not always going to be like this. I have learned to separate the things MS is doing to me from my reactions to them. By noticing, understanding, and accepting that the disease is making X happen, it has allowed me to reduce the suffering part of my response to whatever symptom it might be. Even when it’s a roundhouse wallop, delivered from my blind side, knowing that things won’t always be “this bad” has gotten me through some of the deeper troughs dug by the disease. Conversely, I think we all understand the importance of taking advantage of the “good days” — even if they are just the “less bad” days — when they present. We also have to learn not to overdo it, as MS is a greedy loan shark when it comes to the interest charged.
MS Lessons Apply to Other Parts of Life, Too
As I edited (and reedited, then went back to the drawing board — a few times) the new book, I was a little surprised by how much some of my default actions and reactions to things in my life that have no connection to the disease were formed because of it. Learning to transfer a skill, action, or behavior from the context of a specific need to other aspects of life is called generalization, or “generality” in the world of behavior therapy (thanks to my board-certified behavior analyst wife, Caryn, for that description). What a waste of learning it would be to only use the skills we have learned to work past the obstacles that MS drops in our path. So many of those new ways of doing things are transferable and applicable to our everyday lives. Just like I don’t give credit to the disease for my lessons learned, I don’t have the luxury of squandering them on just one aspect of my life. We’re more than our disease. The life skills derived from that disease are, like living with MS, all about the living part. (More about that book if we can find a publisher.) Wishing you and your family the best of health. Cheers, Trevis
