I have lived and worked and raised my children in the same small city for the last 23 years. I cannot go anywhere without bumping into someone I know. Now that Mr. ALS is a constant companion, he gets introduced or re-introduced like you might introduce your grown daughter to a colleague who remembers her from fifth grade soccer. Generally, Mr. ALS lingers awkwardly awaiting acknowledgement, even though his presence feels like a gawking middle-aged mime, in a sequin studded suit, with a purple velvet hat; his arm draped around my shoulder, grinning broadly.
“How are you doing?” “How have you been?”, they ask. The pronoun ‘you’ is understood to be plural here, addressing us as a couple. I use this as my entree to include Mr. ALS.
“Maybe you’ve heard that I have ALS,” I say with a gentle shrug and a slight nod. I offer Mr. ALS’s introduction with as much kindness as I can muster given his ungainly presence.
“I’m fine,” I say. “Since having ALS, I’ve been busy...”, and I go on to recount all of our advocacy work with the Hummingbird Fund. Mr. ALS beams.
If we are not standing in a checkout line, and we have a bit of time to chat, I might say something like, “Having ALS is much like trying to stay 3 steps ahead of a steam roller”. Given the opportunity, I’m going to speak the truth. Life with Mr. ALS is a steady stream of new projects started from scratch, often just in time. To this, Mr. ALS looks sheepishly down at the ground.
Consider the addition of ramps to our home.
Everyone with ALS will need a wheelchair eventually. Before the wheelchair, there is a walker and before the walker a cane. We have 3 steps up to the front door, with a beautiful, cobble-lined path to the steps. The pea gravel along the path is not suitable for a wheelchair. The path is just barely manageable with a walker, and reasonably navigable with a cane. So, at what point does Mr. ALS need the ramp? What kind of ramp is best? Who do you call? How do you deal with the beautiful path of pea-gravel? Who else do you call? Does Mr. ALS need a ramp to the back deck too? When? What about getting to the lower level of the house, where we enjoy the big screen for movies and sports? Do we need another ramp? A landscaped path? When and how does this fit into the plan? (Answer: the Hummingbird-funded Renewable Ramp Program at our local ALSA chapter has provided expert assistance.)
Another recent project involved finding and joining a clinical trial for a new experimental therapy. What trial seems most promising? Where is it offered? How far and how often will I need to travel? What are the side effects? Is it worth having more spinal taps? How soon will it begin and how will the follow-up visits fit into our current plans for the next six months? (Answer: I enrolled in Regimen F of the Healey Platform Trial, administered at the UVA ALS clinic.)
There is always a project or two in process.
Mr. ALS is less of an oddball when invited to dinner with friends. In a relaxed environment, we can talk about him with more compassion, or we can ignore him altogether.
When Mr. ALS is welcomed with an open heart, a space is created for dialogue. I can describe how I buoy grief with beauty, noting that everyday losses can be intentionally acknowledged alongside my love for the rare colors in a favorite painting. I can admit that I miss being able to do simple tasks, like pouring a cup of coffee, more than the “big ticket” items like driving. And others are free to share their own reflections, as we might in any soulful conversation.
Around the table with friends and family we can laugh with Mr. ALS too:
- His glacially slow shuffle.
- The impossible task of putting socks on someone else’s feet
- The way Lefty often lands indelicately in the center of my lap.
- Mr. ALS’s ridiculous contortions, as I descend into bed.
- Trying to remedy the ridiculous contortions, and the descent
- The potty hustle.
Having Mr. ALS as a constant companion provides a new proximity to grief, to disability, and to the need for near-constant decision-making. Life with Mr. ALS is also jam-packed with urgent work, prioritized travel, and legacy building.
- I have work to do with IAmALS and our Hummingbird Fund to accelerate the pace of ALS legislation and research.
- I need to make audio recordings of children’s books for future my grandchildren.
- I want to maintain meaningful relationships, which also means sharing the realities of life with ALS.
This causes me to wonder: what is the urgent work you need to do? How do you buoy grief? What keeps you afloat when you are feeling at sea? Have you ever had a good laugh in the face of something tragically absurd? How do you introduce the sequin studded mime in your life? I’d love to know, truly.