Blog Post: Old Dog Learns New Tricks
Survivors need all kinds of tools in their toolbox to keep moving forward. Here’s an unexpected but useful one I added to mine in recent years:
I turned 50 years old the year I was invited to join a new social experiment for folks with Multiple Sclerosis (MS). It had no special agenda or goal to be anything other than a support group - with a twist.
A nurse attached to the specialists in my neurologist’s practice (I’ll call her “Kim”) was putting together and going to moderate this weekly gathering. In order to be included, patients needed to have just two things in common: we all had MS, and we were all human.
I say it that way because we shared only our disease and a willingness to be guinea pigs in this experiment, appropriately named the “MS happiness” group by Kim. Unlike other therapy sessions among kindred patients, this one wasn’t about yoga, breathing, or yoga breathing. We were just folks who, in another universe, might have been in a bowling league or volunteered together in a soup kitchen. Except we were united by our shared diagnosis, a common set of uncommon differences.
The one rule for the group was that we would share the “best things that happened to us in the last seven days,” events that we had previously allowed our diagnosis to overshadow. Additionally, we would focus on things we were looking forward to and the occasional good news related to our condition. Big or small, it doesn’t matter. It is almost like a weekly Secret Santa gift exchange, with no cost and zero carbon footprint, an experience that patients with a life-altering diagnosis are uniquely able to appreciate.
These guardrails allowed people, all of whom have ownership of a chaotic and sometimes cruel disease, to explore a shared humanity.
It’s sometimes said, “you only get MS, if you get MS.” The spirit of that statement is not meant to put down the sincere expressions of support we often receive from non-MSers. Or even to imply that those efforts aren’t met with deep gratitude.
It is only to indicate the “esprit de corps” that comes from the isolation one can feel when a neurological symptom isn’t easily understood or doesn’t exactly fit into a category, box, or even with an adjective. There’s no hallmark card for “so sorry you feel like a python is squeezing your middle, and your left foot doesn’t meet factory specs every time it’s above 85 degrees.”
It’s a stupid little club – this disease – and while I can’t know exactly what others feel, I do know what it’s like to have a haywire central nervous system. And a patient journey unlike anyone else’s.
We have met weekly for almost three years straight. Covid lockdowns only gave us more reasons to appreciate connections. The group doesn’t take attendance and didn’t even keep a formal list of participants until this summer. We are as many as 15 but rarely fewer than six. We met IRL (as the kids say) for the first time last month, a missing connection we finally solved, further solidifying our group comradery.
These humans didn’t know each other before, but we can hardly stop from laughing throughout our 60 minutes together each Tuesday. Of course, we occasionally share advice, recommendations and even collaborate offline, but we never dwell on our problems during our sessions. Or even bring them up.
Instead, it’s a steady stream of tales of grandchildren’s visits, fun excursions to see a (bad) hockey team courtesy of a superstar daughter, motorcycle riders, skydiving plans, service dog grooming (with cat stories mixed in), successfully baked confections, thanksgiving meal preferences (and fun side dish traditions), upgrades to power wheelchairs, and so much more. It sounds trite and trivial to you normies, but to us, it couldn’t be more impactful.
The joy we share is not for traditional “bucket list” achievements but for ordinary, everyday smiles. We know that MS can bring a crapload of unpleasantness. That’s a given, and as we have learned together there is no need to dwell. Our elected focus here is on the goodness in life.
We chose to amplify the smallest achievements in life by sharing it. For example, I can tell these friends that with my recent leg strength training, I have increased my ratio of soft vs hard landings onto “seats” of all kinds. It’s met with implicit understanding and a few knowing laughs.
We were not just strangers who have become friends; we happen to represent all kinds of backgrounds. Men, women. Old, young. Black, white. Married, single.
We are just, Nichole, Trayon, Maureen, Vicky, Jeanette, Tina, Stephanie, and John.
The fact is when all is said and done, we are individuals, who are also survivors. We share our good news, and our support with one another, and with this, a genuine connection. We don’t take tests or measure dopamine levels. We don’t have to. Together we move forward by drafting off each other’s smallest victories, a victory no matter how big or small that brings happiness to the whole group.
Yes, these survivors ought to give their own perseverance, bravery, and whichever treatment or therapy they may use all the credit for their lives. We all need lots of other help. Family, caregivers, doctors, nurses, drug treatments, etc. but we found a little breakthrough of our own, the effectiveness of sharing joy, love, and hope. I am sure thankful to “Kim” for getting us focused on happiness, I just think everyone could use more of this these days. No matter what you’re surviving.