Michael was kind, witty, gentle, and given to endless amusing quirks. He’d wear his tortoise-shell reading glasses at the very tip of his nose and, often, drive the long route home, simply because it was more scenic. And he’d often respond in, at most, casual French idioms or “buzz” phrases as he was neither a scholar, nor a Frenchman:
“Mais oui!” or “Zut alors!” or that American catch-all, “Mon Dieu!”
In the summer of 2001, he was quickly becoming increasingly symptomatic of the dreadful terminal illness, Progressive Multifocal Leuko-Encephalopathy. That mouthful of a term is usually shortened to the very kind and pragmatic initialism, PML. His disease had robbed him of any cognition, his ability to communicate, his motor skills, and an entire lifetime of joyous memories and dear friends.
Essentially, all he was indeed able to do was eat and walk, although both activities need qualification here. He no longer sensed any taste, only temperature, and he could no longer chew. Walking was strained because he was somewhat paralyzed on his left side, which meant that he dragged one leg while he held one arm. He had just turned 49, but didn’t really understand the concept of birthdays or their celebrations.
Usually, he was incredibly good-natured and resigned to what was happening, if he indeed had an inkling as to such. His frustrations were many but he was nevertheless easily distracted. You can only imagine, friends, what his days were like: empty and void of an ability to express. I would make him as comfortable as possible and just pray that any torment would stay dormant and that he not be in any pain.
However, one such late August day, Michael was restless. He painfully shuffled from room to room, knocking things over as he’d brush by. He found a tool box, mustered the strength to lift it, and hurled it against a window. Casualties included one window, a couple dozen terra cotta floor tiles, and both a scattering of nails and a smattering of gadgetry all over the kitchen floor. He knocked over lamps, books, mementos, anything within his strained reach. Whether from intention or accident, his anger was spiraling into fury.
I was finally able to calm him down a bit. I held him tightly so he could feel my heartbeat and hear the timber in my voice. I never really knew at what point his understanding of my words stopped, for his stares were sadly always empty. But talking at least gave me some hopeful comfort. I gave Michael his afternoon dose of thorazine and prayed that it would soon take effect and his rage, subside.
He followed me into the bedroom where I cajoled him into getting into bed, with my hope that he would soon be able to sleep. After ten minutes or so, he’d close his blue eyes and I would head back to the kitchen to start restoring order to the chaos.
No sooner was I uncomfortably stooped as I scooped nails, he walked back in, yet again. Trembling a bit. I took his hand, led him back to the bedroom, and again was able to get him ready to nap. Again, I waited a reasonable amount of time and then returned to the mounting “clean-up” tasks in the other rooms.
Perhaps, my optimism was unwarranted as we repeated those “steps one-through-three” at least a dozen times. At that point, I got in bed next to him, urging him to just stay still for fifteen minutes. That was all I asked. I felt certain that such would be all the time needed for the medicine to calm him enough to grow drowsy and, at last, sleep.
But, no! Fifteen minutes later, he stiffly sat up and started to head into the next room. I was beside myself. The day of frustration, bedlam, and such agony had awakened an anger in me. Before I knew it, I had forgotten my role as a dutiful, compassionate care-giver. I grabbed Michael by the shoulders and just yelled, as if in an unleashed last attempt:
“You need to get some rest, dammit. For goodness sakes! What, am I speaking French or something?”
Terrified at my outburst, he looked at me and simply said: “Oui!”
We looked at each other and I held him. I couldn’t cry for he’d have no comprehension of my “tears!”
I just held him, assuring him: “I love you, Michael!”
He quietly replied: “love”.
Somehow we both understood that moment: each with so much to feel, to express, yet couldn’t. Those were the only two words he spoke at all that day. On many a day that summer, he uttered none at all.
And with those two simple words (seven letters, total), he was able to finally sleep as I regained my focus and hope, at least enough to get me through that very long day.
That, my friends, is the moment of joy or hope that I humbly offer you today. This anecdote was never intended to evoke melancholy or sorrow, but rather to emphasize the power of one singular instant in time. And this instant with Michael was both timely and wondrous as it gave us each a craved morsel of hope, dignity, and humor.
The Universe (whatever that may be), keeps a keen eye, takes care of us, and gives us the strength to always do what we must.
A Baker’s Dozen of years later, I can now share this particular memory, although my cerebral search engines are known to falter and sputter these days.
“Je peux enfin penser à l’été et sourire.”
(Image: “Skyscraper 5” by Julie Heffernan, 2012.)