Part of our mission is making people aware about what life with ALS is like for both patient and his family. Prior to the pandemic, I was regularly invited to speak before groups, opportunities which I rarely refuse. I have been a nurse educator all my life and have tried every way of presenting material so it becomes vivid to my audience, so that they come away more understanding of the material. When I come short of that expectation, I am saddened and frustrated by that missed opportunity for learning.
Talking about the experience of ALS can never surpass the teaching merits of seeing and receiving the message from a person WITH ALS.
With husband, Don, at Christmas
I have never met Catherine Scott but every so often I read her posts on ALS – Patient and Caregiver tips for every day life, the Facebook group to which we both belong. Her posts are funny, inspiring, and always positive, despite the fact that she is almost entirely immobile. She has the familial type of ALS, which has heartbreakingly affected her son as well. On ALS, she will do everything in her power to overcome. After almost each post, she ends with “Love, hugs, and sunshine” – which, from my perch, speaks of her attitude in life.
The following is her latest post on the online group. See if you aren’t moved by her unquenchable engagement with life and acceptance of her “ALS truth.”
“There is perfection in our being imperfect. How else can we possibly experience an authentic life without laying our truths bare in all their vulnerable glory? For me to personally live an authentic life after my ALS diagnosis, I had to let go. Let go of my fear of being seen by people I has known when I was yet able-bodied. Had to let go of my embarrassment at how some would look at me when being fed by another’s hand, or the hurt which bloomed in my heart when eyes of judgement were turned on me with the conviction that I was intoxicated for having slurred speech or a wobbly gait. By far the hardest of all, however, I had to let go of my pride to allow others to help me in every aspect, sometimes in very private ways.
Though I have significantly progressed to the point of near paralysis, I have indeed succeeded in letting go and live my ALS truth unabashedly and authentically. There are still times when self-perceived fears of my physical imperfections or inability to do things for myself creep in. I always circle back to feeling blessed to have an intact mind and to be alive in a time when cutting edge advancements in technology give my largely cerebral existence the means to remain productive and be able to communicate. I am blessed beyond measure to have Don, my husband and bestest, who never ever makes me feel less-than, only more-than. To also have my dear friend, Denise, in my life helping care for me is far more than I deserve.
Not many have the luxury I have of such a slow progressing form of ALS, and I wish with my entire being everyone would. I have been given the time to adjust and adapt, to make so many choices along the way, and to change my mind about many of them. When it comes down to it, there are no right or wrong decisions anyone living with ALS makes.”
Just like in the able-bodied community, not all people with ALS share the same reflective, humanity-affirming, and redeeming qualities as Catherine. Yet doesn’t everyone deserve a fighting chance even when all you have in this physical world is a “cerebral existence” and eyes that take on the ability to more than gaze?
With Steve Gleason and staff., Gleason is founder of Gleason House, an ALS Residence in New Orleans, Louisiana. To his left is his wife, Michele.