We are that family.
I knew something was wrong, truly wrong, the night of that Christmas party when Jason stood there, in front of the hotel’s massive bathroom mirror, unable to button the top 3 buttons of his dress shirt. However, I talked myself out of the gut feeling making my knees sway as I stood in front of him, lending a hand. “The dryer setting must have been too hot when it was popped into the dryer,” I thought to myself as I fastened button number one. I took solace in the fact his heart checked out to be fine as I secured button number two. “The bathroom was too hot — and his fingers were too sweaty to loop that bit of plastic through the impossibly small and tight loop,” I repeated inside my head finishing up with number three. Walking to the ballroom for the cocktail hour, I took solace in the fact blood pressure was perfect; no worry of stroke. “We’ll find out the reason,” the doctor assured us. “Listen, you have no pre-existing conditions; you’re pretty much as healthy as a 42-year old man can be,” was stated genuinely and confidently.
Plus, the shirt was pretty new. The buttons were stitched on too tight; and the loops hadn’t been used enough allowing the necessary slack. And the fluorescent lighting wasn’t doing anyone any favors.
And, with every routine test coming back clear and blissfully uneventful, I was able to push away all of the data points. A dropped juice glass and fork bouncing onto the kitchen floor? That’s what happens when kids get older and you’re hustling around the kitchen at warp speed to make morning carpool on time. His penmanship wasn’t ever going to win any awards. I mean, that’s a given with doctor in front of your name, right? The stumbling? Easy. New sneakers plus news soles equals soles grasping the ground a little more than an older pair. That is, until the day of that pickup volleyball game. My husband grew up in sunny SoCal and that was his sport. “I couldn’t hit the ball, Stephanie. I couldn’t even get one serve. I could not make contact with my hand,” clinched a reality we didn’t know the details of, but, knew was coming with certainty. He felt uncoordinated. He felt weak. It was like his body wasn’t listening to his brain. This time, there was nothing to hide behind; nothing to explain away.
The neurological consultation was scheduled in record speed. A speed that was both comforting and alarming. The MRI and spinal tap happened even quicker. We had our answer. Multiple Sclerosis (MS). Then, we received clarification on that answer. Primary Progressive MS.
My husband’s disease is progressing at an alarming rate. And, we have moved forward each and every time thanks to the incredible support of family. Friends. Community. Incredibly supportive work environments. Colleagues.
And quality health care.
It’s true. Life turns on a dime. Just like education is a great equalizer, so, too, unfortunately, is illness.
A little while ago, we were that couple. The one that met in college. The one that just wrapped up our graduate studies; eager to start life together in the real world. Together. The one you might have noticed in the matching college sweatshirts supporting their Big Ten alma mater at the local ACC sports bar.
And, not all that long ago, we were that young family. The one who got to get out there and see the world. The one posting impossibly beautiful and National Geographic-worthy photographs to our social media accounts. The one you immediately thought of when you saw an anecdotally interesting clip on tv about Hong Kong.
And now, we are that family waiting, praying and working for a cure. As much as we don’t want to be, we are. We are the family you think about from time to time when you see a news article describing the possibility of a cure. Or a promising study. We are the family you might notice at a high school football game heading to the bleachers before anyone else’s bright green wristbands are checked. We are the family refusing to allow our loved one be defined by an illness. Let alone a lack of healthcare.
As Americans we cannot stand by and allow the disappearance of this right to define any of our loved ones’ realities or dreams. Even though, thus far, this disease has been unrelenting and unforgiving, we remember in our hearts, tonight, how fortunate we are to have the medical support we need to take on every future challenge coming our way. Together. Tonight, we are a fellow American family serving as a reminder that in America, affordable, accessible and quality heathcare is not a privilege, but a very real right.
