Back in January, I was scrolling through Instagram one morning. Between the photos of decadent pasta dishes and serene bedrooms I’d bookmark, I slowed down when I saw some text, a screenshot of a tweet from one of those “good news” accounts I follow. It read:
“If I get 1 viral tweet in life I hope this is it.
My wife married an athlete, who had limitless energy and was a true partner. Then came ALS and she had to dress, shower and care for me. She has borne these burdens with incredible courage and strength.
I love you
I didn’t need to bookmark this post so I could return to it later; it instantly became seared into my heart. “Who is this guy?” was my first question. So I Googled him. Initial search results told me that his name was Brian Wallach and he’s a lawyer who had worked on the ’08 Obama campaign. It was on the campaign that he met his now wife, the woman who has, “borne these burdens with incredible courage and strength.” I learned that not long after they welcomed their second daughter into this world, they learned that Brian had ALS, a disease that is currently (and I mean currently as you’ll read on to discover) is 100% terminal. I kept Googling.
“ALS…“I thought to myself. “Ice bucket challenge. That movie, “The Theory of Everything.” Lou Gehrig’s disease. Is it kind of like MS? It kills your muscles…right?” I racked my brain for what I knew. I remembered back to watching a football game a few years ago with…”was it my husband or my father?” In any event, at one point in the game, a young man was honored. He was wheelchair bound and quite thin, his head propped up in such a way that I gathered he didn’t have the neck strength to hold it up. He was paralyzed to the point that he couldn’t wave or even speak as the crowd roared; but still he managed to crack a smile. The man was obviously revered by the team–the New Orleans Saints–and I asked the man I was with (dad? husband?) who he was and what had happened to him. “That’s Steve Gleason, a Saints legend. He has ALS,” I was told. I remember my heart stopping. To think that a man once physically capable of being a legend on an NFL football field was now confined the way he was to a wheelchair? Fast forward to Brian’s tweet.
Once again, just as my heart had stopped when I had seen Steve Gleason on that football field, my heart stopped again as I thought more about Brian’s tweet. But unlike after that football game, where I carried on, sad thinking about Steve Gleason, but not actually doing anything, I thought to myself…what can I do that’s ongoing? That continues after a bucket of ice water has been dumped over a head? So I got to reading. To put a complicated disease simply, ALS–or amyotrophic lateral sclerosis–is a motor neuron disease that causes nerve cells to break down, which leads to the disruption of a muscle’s functionality; slowly taking away a person’s ability to walk, talk, eat, and ultimately, breathe. I read more about grassroots organizations that are working to put “drugs in bodies” like the one Brian started with his wife, I Am ALS. I learned about patient-led groups that are also part of the fight, like Team Stevens Nation (and if you missed Amanda Stevens’ powerful TEDx talk, here’s where you can listen to it). I discovered former NFL linebacker Tim Shaw‘s story (and sense of humor) and Kelsie Snow’s podcast and blog. Sorry I’m Sad, about her family’s journey after her husband’s diagnosis. I watched Steve Gleason’s documentary, “Gleason” and dove deep into the work his organization is doing (mind-blowing, check it out here). I even found out about a small business owner named Scott Smith in Kansas who hit the ground running after his diagnosis in regards to advocacy and is documenting his journey through Flex on ALS. The more I discovered, the more I realized how underfunded and ignored this disease is. I’ve since written letters to the FDA and my own elected officials, imploring them to approve certain drugs that have shown to work in slowing the progression of the disease and passing legislation that will give patients access to said drugs respectively. In doing so, I’ve realized that the system that is clearly flawed and failing people daily. That being said…
Beyond making noise on my own end, following the leaders in this fight, like Brian Wallach and his wife Sabrina Abrevaya, I don’t know what else to do and I want to do more, because we all need to do more. My goal here at The Modern Bee is to foster community, so I’m appealing to you, whoever is reading this for help. I’m open to suggestions, I’m open to educated direction. If you’re a pALS (person with ALS) or cALS (caregiver for a person with ALS), what can people like me do? I refuse to just be sad and continue to go on with my life because my life hasn’t been directly touched. I don’t want to live in a world where we don’t act on behalf of others unless we’ve been affected ourselves. I’m no scientist, I’m definitely not an epidemiologist, but I’ve read and followed along enough these past few months to feel in my bones that a cure for this disease is within reach. We simply need more hands to reach for that cure and I’m committing mine. Let’s bridge the gap between hope and action. Let’s do this.