If you follow this blog on Twitter or Instagram, you know I am committed and passionate about doing all I can to help end ALS. I thought I would share why. I have a different definition of family than most. If you follow this blog, you know I call the people who know me best, and are not related to me my chosen family. They are family in every way that matters. Mama does not use the term chosen family but has a similar philosophy. Case in point: a former co-worker of hers and his wife. These souls have been part of my parents lives since before I was born. Naturally, they became part of my life.
When I was young they moved to Chicago for job purposes. When I was in high school, they moved back to Georgia close to my parents and I. Both amazing souls were invited and attended my high school graduation party. I celebrated my 21st birthday with my parents and them, too, at my favorite Italian restaurant. A few years later when we ran into them at the mall and decided to have lunch together: he was having what was believed to be sciatica pain and was in search of shoes with more support. A few months later: we found out it was much more than sciatica pain. ALS was the diagnosis.
“ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.” (https://www.als.org/understanding-als/what-is-als). The diagnosis meant that someone I love very much was going to be gone way too soon. ALS is currently 100% fatal. His case progressed fast. I was able to make the transition to adaptive equipment easier for him to accept because I use it, too. That particular part was an honor for me. He and his wife had always done so much for my parents and I it was a pleasure to be able to help him in some way.
It seemed like I blinked, and we were going to pay respects and say one last, final, goodbye. It was not a fun few days for any of us who loved him. I think of him often and it’s still difficult to believe he isn’t here. He should be, honestly. Instead, he is one of my angels. I can only hope I continue to make him proud, and he knows how much I love him and always will.
Fast forward to last year, scrolling through Twitter after posting a blog post one day. I came across a tweet from an ALS patient that was intriguing. He sure is positive I thought. I Googled him because his Twitter account is verified, and I knew he’d be in the press because of that verification. He is. His name is Brian Wallach. I followed him after my search. Brian and his wife Sandra founded I AM ALS. It is a “patient, centered, nonprofit dedicated to ending ALS.” (https://iamals.org/)
One day Brian asked his Twitter followers who he should follow. On a whim: I said you should follow me and told him about my blog. I didn’t think he would, but to my pleasant surprise he did. Brian and I share a relentless optimism and a couple of crazy ideas about how to live with our respective conditions. We live as fully as is possible and don’t see limits. We see challenges that can be overcome. Every time a blog post makes me uncomfortable to write, I think about Brian and what he’s doing every day. He gives me courage to share hard things with the world.
Thank you, my friend. Together with your community, mine, and everybody else: we’re going to end ALS. Then one day, I’m going to give you a high five, and maybe a hug, too. I don’t like beer, but when I get to say thank you in person, I’ll buy you an espresso or coffee that isn’t iced to celebrate the triumph. Sound like a plan?
If you would like to follow Brian on Twitter his handle is @bsw5020. His wife Sandra’s is @sabrevaya. Their organization is https://iamals.org. If you or someone you love is battling ALS, or you just want to be part of the fight to end it: check out their organization. Let’s end ALS, together. It’s time, y’all.