Before my husband, Todd, got ALS, we had minor problems, but we were full of hope. We had a small baby so I wasn’t getting much sleep, but I knew that things would get better. Todd was sometimes frustrated with his work, but he hoped to be promoted. Our obstacles didn’t seem to be insurmountable or permanent.
Challenges were harder once Todd was disabled because there was no hope. I went from sleepless nights for the sake of my children to sleepless nights to help my husband. Todd was no longer discouraged with his work because he couldn’t work. He became restless when he had nothing to do. And I became increasingly tethered to home, as I can’t leave him for more than a couple of hours.
We were feeling stuck.
Our situation reminds me of a scene from “Groundhog Day.” Phil Connors, played by Bill Murray, sits down with a couple of guys at a local bar and asks, “What would you do if you were stuck in one place, and every day was exactly the same, and nothing you did mattered?”
One of the men responds, “That about sums it up for me.”
Stuck in the small town of Punxsutawney, Pennsylvania, reliving the same day over and over, Phil eventually takes advantage of the time loop to improve himself. He learns to speak French, masters the piano, and becomes skilled at carving ice statues.
Disease and disability shrink our world. We can no longer enjoy the adventures we once did. We don’t have control over our futures. But we can do some things.
We have taken advantage of our smaller world to develop new skills. Todd and I have learned the craft of writing, and he helps me to edit my books and articles. I’ve become comfortable speaking to groups. Todd created my website, and he has become adept at drawing using his Orin HeadMouse. I make Christmas wreaths from Fraser fir branches and sell them at craft fairs.
In her book “Becoming,” Michelle Obama writes about how she rose above her working-class upbringing to become a lawyer. Her parents were proud of what the young Michelle Robinson had accomplished. But then after she met Barack, she realized it was one thing to get yourself out of a stuck place, but, “it was another thing entirely to try and get the place itself unstuck.”
In “Groundhog Day,” Phil remains stuck even after his self-improvements. He then uses his time loop to reach beyond himself. Every repeated day, he shows up at a restaurant at a particular time to perform the Heimlich maneuver on a choking man. He walks down a street to catch a boy who falls out of a tree. And he tries to save an old man from dying but doesn’t succeed.
“Sometimes people just die,” a nurse tells him. But that doesn’t stop Phil from showing compassion. Instead of trying to save him, he spends time with the man, buying him lunch at a local diner.
Phil made Punxsutawney a better place while he was stuck there.
The world is a better place when we reach beyond ourselves.
I admire Steve Gleason for what he has accomplished with Team Gleason — the foundation helps people with ALS to access technology to improve their quality of life. Gleason also lobbied for legislation to change the federal policy limiting access to speech-generating devices for people with degenerative diseases.
Most people don’t have the financial resources or connections to achieve as much as Gleason has. We can only do our best.
I’ve come across bloggers and others on social media who have a wealth of knowledge about navigating ALS. When we have a problem to solve, I look to these folks for resources. Todd and I try to pay it forward. We created a YouTube channel, ALS 411, to share tips and advice about disabled living.
Shortly after Todd’s diagnosis, I was encouraged by Darcy Wakefield’s memoir, “I Remember Running: The Year I Got Everything I Ever Wanted—and ALS.” It inspired us to tell our story in our book, “Heavy,” so that those who read it will know that they are not alone.
Matt Bellina received BrainStorm’s stem cell treatment under the Right to Try Act. NurOwn is showing positive results in some people with ALS who’ve been fortunate to get into the trials. Bellina regained his ability to stand up. Now he and others are advocating for the U.S. Food and Drug Administration to approve the experimental therapy immediately so that everyone with ALS can access the treatment.
It’s good for our spirits to expand our experiences beyond ourselves, and it’s even better when we can make a difference in the world.
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