There were times of full-throttle charges ahead and times of digging in for a long siege. I’ve been on the verge of making medical decisions only to put on the brakes or change course. Over the years, I’ve changed some my answers to questions on the topic of living life with MS, and in some cases, those answers have become more nuanced. However, one of those answers — to a question asked me by the Seattle news anchor Dennis Bounds — has stayed the same.
What’s the One Thing People With MS Want Others to Know?
“What is one thing people with MS want those of us living around you — those who do not have it but either live with, are close to, or want to help people with multiple sclerosis — to know about living with the disease?” We were onstage at a fundraising luncheon, and this was the “closer” question. The one to which my answer was supposed to not only encourage people to write a bigger check, but also the one they were supposed to tuck into the back of their mind and take home with them. I didn’t know what Dennis’s questions were going to be, and it had been a fun, funny, and informative interview to that point. For the most part, I’d been speaking of my experiences with the disease, with the medical profession, and with patient advocacy organizations like the National MS Society, whose event it was that November afternoon.
I Took Care in Answering for the Entire MS Community
This question caught me up short. We weren’t broadcasting, so I didn’t have to worry about dead airtime, but I didn’t want the pregnant pause to go full-term, nor did I want our audience to think I was being overly dramatic. My hesitation before responding, however, was because I understood the importance of my answer. He wasn’t asking me to answer for myself, but rather for the whole community. The weight of the impossibility of that wasn’t lost on me as I composed what I call a soundbite-plus. “We’ve got this.” I said, succinctly. But then added, “But we might need some help.”
We Need to Find Our Own Limits, Not Have Them Dictated
I then went on to explain that there is no way for us to find the edge of our abilities unless we push ourselves in that direction. To be allowed to try things on our own, to be allowed to fail, and to remount the horse and try something different, is how I explained it. We don’t know when or where, along the path of our life with this incurable disease, we will need a boost back up on that horse — and we surely will — but that’s what we’ll need. Not for the journey to be cut short by those protective of us. Not to be led by a tether so we don’t go off a path someone else decides should be ours. And surely, not to be told that we’ve fallen off our saddle too many times and that we can no longer ride.
We Also Need to Know When to Ask for Help
We, therefore, have the responsibility to be aware when we may have fallen a few too many times (likely more than we needed to learn the lesson) and to know when to say “when” to one thing or another. We are right to assert that it is our life, and we get to set a course down the path we think best. With that right, however, comes the personal responsibility to know when (as well as how and from whom) to ask for help. “No man is an island, entire unto itself,” said John Donne, and it’s no less true when I think back to my answer to Dennis’s question more years ago than I can now remember. Be it in matters physical, emotional, financial, or any of a myriad of life’s endeavors we pursue, “We’ve got this … but we might need some help.” Wishing you and your family the best of health. Cheers, Trevis
