“I’m so embarrassed,” she said.
“Why? I asked.
“Because I was in plank pose in yoga class and nearly ended up on my face. Everything just gave way.”
I looked at my exceedingly fit mother-in-law thinking, “You’re an 80-year-old woman who just kicked my butt in said yoga class last week. You never walk when you can run, can take a flight a stairs two steps at a time, bend over from the waist to tie your shoe and move like a woman 25 years your junior. A slip in yoga class is nothing to worry about.”
Only it was. It was the beginning of something horrific. That slippage signaled the end of one kind of life — a vigorous, healthy, active and moving one — and the beginning of another: A life with ALS, the disease that causes a slow and inexorable entombment inside one’s own body when the death of motor neurons in the brain cause muscle weakness and eventual total paralysis of every muscle in the body. That includes the muscles that let us swallow. And breathe.
Most people know of ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig's disease) from the Ice Bucket Challenge, the Internet meme that went viral last summer when people all around the world poured chilled water over their heads to raise money against and awareness about this dread disease. But my family and I already knew of it from my mother-in-law’s devastating diagnosis the prior February.
It came for her hands and arms first. In November 2013, ahead of that yoga class, she’d shoveled snow off her driveway herself. By Christmas she was struggling to hold a knife and fork to cut the food on her plate. By February she could no longer wear clothes that required her to close buttons or zippers or pull things over her head.
By July she was no longer dressing herself at all. Her arms were gone, hanging down her sides like lead weights, pulling her formerly always erect shoulders forward into a rounded stoop.
To her losing her arms has been the hardest and most immeasurable loss so far. Because all her life she has valued few things more than the ability to give a hug. It has always been the first thing she did when her children, anyone from her huge circle of friends and even strangers came into her presence and the last thing she’d do before we left.
To her it was the most natural way to show love and the only thing to do when someone was hurting and there was nothing else to be done. It was her loss — and ours — to ALS. And we were to find that the disease works with evil, opportunistic zeal, at times slowing its greed just long enough to make us forget that it’s fatal; and, at other times taking startling leaps in robbing her of even more strength and muscular control.
For her each leap has meant struggle — a struggle to accept that she would no longer be able to brush her own teeth, comb her own hair, touch her own face. That someone else would have to blow her nose, feed her, scratch an itch, move her arms back when they slipped off her lap like falling pieces of wood and straighten out her curling fingers.
Each leap of the disease has been a struggle to redefine what “fight” even means because how do you fight the unbeatable? How do you fight a thing without mercy?
How do you accept the reality of your body’s deepest betrayal after a lifetime of careful, diligent, deliberate and joyful maintenance without “giving in”? For her it has been about being thankful that she can lift her head a little higher than the day before or stand — even if she has to be held up to do it.
The same drive that kept her moving and going to yoga at 80 keeps her moving what she can for as long as she can. ALS is taking her legs now, weighing each one down, making them feel as if she’s standing in vats of wet cement.
It’s whispering threats against her tongue, thickening it on some days so that it’s harder for her to get her words out. It wants to take her voice, a source of soft and immeasurable comfort to an uncountable number of people.
But here’s what it will not take — her ability to love us and keep beating as the heart of this family. Because she is, in her purest essence, love.
And, it will not take her faith. She says that she holds tight to her God. Even in the darkest moments she has the light of the Son. And she is less afraid.
And, believe it or not, ALS will not take her joy in having lived a life full of movement and purpose and embraces and unremitting love. Her name is Laurel and she has ALS.
But ALS will not have her. Because she will always belong to us.
Melvina Johnson Young is a former university lecturer and writer specializing in U.S. history, African-American history, women's history, and gender and cultural studies. To reach her, send email to firstname.lastname@example.org.