Guest Voice: After an ALS diagnosis, I decided to choose happiness
At first it felt like I had an expiration date tattooed on my forehead
Nancy Muirhead is a clinical psychologist. Born and raised in Los Angeles, she and her husband moved to Washington state to be closer to her adult children and grandchildren while continuing to work remotely. In August 2024, she was diagnosed with nonfamilial bulbar-onset ALS. She is now focused on reimagining her life moving forward while providing support and understanding to others in similar circumstances.
My girlfriends were in a circle around me, like warm fires trying to push away cold and unhealthy air.
I gave them credit for being as positive as possible given my recent diagnosis of bulbar-onset ALS and the appearance of symptoms like a raspy voice and tangled articulation.
“You look fine!”
“You’re gonna beat this!”
“Don’t forget that Stephen Hawking lived with ALS for years and years!”
Even though I felt that now familiar tug of emptiness in their words, looking at their sincere faces, it struck me how hard it must be to have a close friend who had just received the devastating news of a fatal disease — someone whose expiration date was now as visible as a tattoo shouting from the forehead “On my way out.”
I self-consciously rubbed my face as they watched me. I could read their thoughts. Is face-rubbing a symptom of ALS? Is she going to keel over and face-plant into her English breakfast tea and raspberry scone? Is there something else that can be said to help her? Maybe the internet search for ALS didn’t explain everything.
I knew I had to say something, so I said the first thing that came to mind: “We all have expiration dates, you know.”
My friends’ heads bobbed. I could tell they were excited to agree with me on something, anything.
“Every one of you has an expiration date,” I added. “It’s just that your expiration dates aren’t visible like mine.”
Their nodding, first energetic and encouraging, now slowed.
“You,” I said slowly, “could go at any time. A car accident. Maybe one of those terrible cancers that kills you in a few months. Wham!”
Let me tell you, if you ever want to smother a lovely ladies’ tea, suggest that any one of them could be dead soon.
Looking at their expressions, which ranged from horrified to frightened, I knew I needed to pivot.
Weather is always a safe choice, especially during springtime in the Pacific Northwest.
“So can you believe all this sunshine?” I asked, sounding as enthusiastic as my disease permitted. “The flowers are popping out all over. It’s so cool.”
The table was silent.
I wondered if my girlfriends were thinking about their own deaths, my death, or how to escape this weird situation as quickly as possible. I decided that being transparent was best moving forward.
“Look,” I said, “I’m so sorry. I have no idea how to handle this news any more than you know what to do with me.”
One by one, my friends nodded.
“Some days, I know the diagnosis is true, especially after a day of stumbling over words, when I have to work so hard just to form the right sounds or to even just swallow goddamn water.”
I stared at my hands, not wanting to see their sympathetic eyes.
“But there are other days when I’m convinced there must be another explanation. I can’t leave my husband behind. I mean, who’s going to make sure that he takes care of himself and that the cats are fed? And what about our kids and grandkids? Who’s going to cheer them on and plan the big family parties? And then there are the grandchildren I haven’t even met yet.”
I took a deep breath and then said it, the bottom line: “How could this happen to me?”
I hadn’t even finished speaking when I saw a response waving like an imaginary banner in the sky outside our café table. “Really? Why not you?”
A long life is not guaranteed — even in modern times — and there is no written contract that we’ll live as long as our parents, which was an unconscious assumption I had carried that deluded me into thinking I’d live comfortably into my 90s.
So now, just a few months shy of my 70th birthday, I have a decision to make about managing the reality of my medical situation. Do I spend whatever time I have left dying a little bit every day until I’m finally gone? Or do I find a way to choose happiness over fear and seek soul-satisfying moments of good humor and grace?
Who wouldn’t pick the latter?
For me, choosing happiness takes many forms. I look for something that makes me laugh. I tell those close to me I love them, sometimes just in the form of silly emojis. I seek beauty and gratitude wherever I can find it: in the trees, the moon, the chatty birds, the arms of family and friends.
Every morning I say, “Thank you for today.”
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About the Author
Beverly Hilliard
I too have bulbar onset non familial ALS. Diagnosed Jan 2024.
I too choose happiness. I can no longer speak or swallow well.
Tube feedings are my best friends. People say I look great...so there is that. I take one day at a time and do the best I can for my husband and family..