themighty logo

What I Wish People Knew About Multiple Sclerosis After That 'This Is Us' Episode


Anyone who, like me, is an avid “This is Us” fan learned last week that Sophie’s mom has multiple sclerosis (MS). In the episode, she commented to Kevin about her mother’s condition, saying that because she has MS, her mother is “never good.” While I’m excited about the awareness that such exposure might bring to the disease, I’d like to share my point of view.

First, people with MS have symptoms that vary widely. It is neurological in nature, and pretty much everything in our body is controlled by the nervous system, so we never really know what weird, painful, or debilitating thing we will experience next. It’s like a twisted game of roulette.

 

I’m among the most fortunate, with access to good healthcare, with advances in MS treatment and understanding happening rapidly. The progression of my disease has, so far, been slow, so I am lucky enough to enjoy a great deal of functionality in most of my day-to-day activities, despite some limitations. I recognize that this is not the case with everyone.

However, there are good days. Great days, even. Many are even better than they might have been pre-diagnosis. I have the privilege of knowing what a precious and remarkable gift it is to take each and every step. What a novelty, and fleeting, it is to climb a mountain.

The day I received my diagnosis, 10 years ago this month, we went on a spur-of-the-moment drive in the Rocky Mountains, taking Boreas Pass over the continental divide. It was breathtaking. Nature had erupted in a mural of firey gold, orange, and red and embraced me with hope, love and reassurance. I was going to be OK.

I had no way of knowing how quickly or severely or relentlessly this disease would attack my brain, spine, and the rest of my nervous system. I didn’t know for how many more years I would be able to walk among the glittering, golden aspens on my own two feet, but I knew that I had that day. That single, beautiful day.

We’ve made our autumn leaves drive in the mountains an annual tradition. It is my favorite day of the year. It inspires me and reminds me of my strength and of the immensity of joy this world contains.

Loved our weekend hike!

A post shared by Sara Johnson (@bananafanafofara_sara) on

This year, for the 10th anniversary of my diagnosis, we visited Helen Hunt Falls in Cheyenne canyon park in Manitou Springs, Colorado. It was beautiful, magical, and I climbed a mountain. It wasn’t a pretty sight to see. I told my husband on the way back down that I wished I had a t-shirt on that told people that it wasn’t as hard as I was making it look. Hoping my sweaty, trembling body, desperately clinging to every railing while I precariously crept down the trail as my loving husband watched over me protectively like a timid parent teaching their baby to walk, didn’t deter any would-be hikers. But it was magnificent. Exhilarating.

It was a good day. One of many to come.

Lead image courtesy of NBC.com