Stephen hadn’t shown up to Tuesday golf league in over a month. We thought he’d found better things to do or maybe been caught up with work. The usual stuff. His answer stopped me in my tracks.
Kaley’s Mom has MS.
My mind immediately goes to the bad places—the worst places and scenarios. Even though I know more than anyone that the level of severity of the MS that took my mother’s life falls into the top five percent of people diagnosed with the disease, the same feelings swarm over me every time I meet someone who’s parent has MS Fear, terror and overwhelming sadness for the individual and the family. And strangely: guilt.
Do we talk about this enough? The feelings that arise in these situations? Let’s talk about the guilt. I know the general trajectory this woman’s life is now going to take. I’m trying to do the math – if Chad is 35, maybe his wife is 30, and her Mom delivered her at age 25, so that would make her mom 55? Could she be older? A diagnosis like this over 55 would be rare, right? But date of diagnosis means nothing sometimes—many people with MS suspect they’ve had “something wrong” for years, even decades, so her progression might be further along than we think. They’re going to need a cane, absolutely. Maybe a walker. Soon, a wheelchair, maybe a mobility chair, a Hoyer lift, a ramp, they’ll need to widen doorways, eliminate trip hazards, and what about grocery shopping? What’s the plan for that? And what about driving? And what about, what about, what about….
What role do we—the knowing ones—play?
There was a guy at work once. His Dad was diagnosed with ALS and given three years to live. Tops. And while he ultimately lived another four-and-a-half, his trajectory went exactly as expected. Full-on paralysis from the neck down, eventually affecting his vocal chords and speech. He started choking, as typically happens. He died surrounded by loved ones in his hospital bed at home.
I was roughly twenty-eight during that time, two years out from experiencing my own mother move her remaining good hand for the last time, six years away from the day she, too, would die in her bed, in my sister’s home filled by loved ones. I felt my colleague had confided in me, and that I had a job to do. I’d just read a book called “Blindsided: Lifting a Life Above Illness—A Reluctant Memoir” by journalist Richard Cohen. In the book, Cohen describes his lifelong struggle with multiple sclerosis, his first bout with colon cancer, a loving marriage to Meredith Viera, the effect of illness on raising children, and the nature of denial and resilience, all told with grace, humor, and lyrical prose. And while my colleague’s father had ALS, not MS, the struggles were similar. My copy was sullied with notes so I bought him a new one, wrote a note in the blank first page, and delivered it to his desk.
The delivery was received with an uncomfortable mix of surprise, confusion and ultimately embarrassment on my part. He opened the cover, by passing the note and nervously flipped the pages back and forth. He told me he hadn’t read a book in years but would certainly dig in later on. He put the book face down on his desk, stood up, clapped his hands and without looking at me suggested we round up the others for lunch. It was Friday, after all.
I learned a valuable lesson that day, which is basically this: you have to meet people where they’re at. Just because you have a degree in psychology and are otherwise overly in tune with the pain and suffering of the world, love reading and overanalyze everything—more information is better than none at all, you figure—doesn’t mean others are willing to talk, even if they’re in a similar situation to you. Just because someone tells you their Mom or Dad has MS or ALS or Parkinson’s or Crohn’s, doesn’t mean they’re giving you an invitation to dive into their psyche or the privacy of their family—it doesn’t mean you need to try and fix things. After all, who gave you that authority?
As the years went on, my colleague’s father’s story terrified me to the point of nightmares. I couldn’t imagine my mother not being able to walk, move, get out of bed nor communicate. She wouldn’t be able to use her Google voice assistant, the one that writes the emails, the emails that replaced the hand written letters and cards she so loved to send. I spiraled into paranoia in those later years, cutting her food into tiny pieces, hovering over her as she ate, encouraging more liquids. What are we going to do if you start choking, Mom?! My anxiety over the unknown pushed me to the point of yelling at my dear, kind mother, who could only sit with her head down, frozen in her own body. I can’t let it happen, Mom. I won’t.
For many of us, the most terrifying part of progressive disease lies in the unknowingness. You can wake up one day with blindness in one eye. You might trip and fall. You might lose the ability to walk, or hold your grandson, or tell your daughter you love her. Any number of things might happen to you, none of which you’ll know until they actually happen. But knowing the other man’s story—did it help in any way? Did it make the journey any more clear?
I’m a planner. Financially, logistically, emotionally—I thrive on budgeting and calendaring and making all of the pieces fit together. I’m also a futurist—I love contemplating the trends and possibilities of the next five, ten, even thirty years. Not knowing how long my mother was going to live, or the level of care she would require, or when the money was going to run out caused what I can only describe now as a prolonged state of anxiety interspersed with periods of panic. I longed for a roadmap—an a, b, c of the way this was going to go down, and by “this”—yes—I mean my mother’s life and death.
We all know inherently that the future is impossible to predict. This is perhaps the best and worst thing about being mortal. On the one hand, a blank canvas presents limitless possibilities. We can do, see and be anything we want—at least we’re told. On the other, you could step off of the curb tomorrow and get hit by the proverbial bus. (Sidebar: I find it humorous how often this scenario is used in corporate settings. i.e.: What if Shannon gets hit by a bus tomorrow? Who’s going to deliver the weekly TPS report?) As humans, we seek connection, we bond with those who understand us, we strive for knowingness and, above all, purpose.
These past few days, I find myself thinking about Kaley—this person I’ve never met. Will I ever meet her? What help or guidance might she need? Does she want to talk about what’s going on with her Mom? Or is it me that needs to talk about what happened with mine? I imagine the two of us sitting down over coffee somewhere halfway between our homes. It’s finally springtime in Michigan and the sun shines in full glory onto the picnic table. I’m grateful for this and for my sunglasses, which provide a layer of protection from both the UV rays and the intimacy of our discussion. Kaley takes a sip of her latte and watches a man in a power mobility chair cruise by. Kaley, I might say, I’m here for anything you need. What do you want to know? How can I help?
Kaley, I might say, where do we begin?