My friends tell me they also have trouble sleeping through the night. Age, they say, or their bladder, or the dreaded foot cramps that send them hopping to the kitchen for mustard.
Sleep woes are common among the ALS crowd. Impaired mobility aggravates muscle stiffness and involuntary spasms. The inability to adjust the covers or change position makes it hard to settle into a relaxed, deep slumber. Adding to the disruption, I use a noninvasive ventilator to help improve the quality of sleep. The infernal ventilator mask has a way of needing to be repositioned midway through the night. In our house, in our bed, this means Peggy waking up with the lights on, to make it right. I have to say every night begins with the same hope of not awakening Peggy more than once. Let’s just say that hope springs eternal.
The saving grace of disrupted sleep for me has been the repeated opportunities to drift back into dreamland. For some mysterious reason, my dream life since developing ALS has become much more fun and vibrant.
Sliding gently back to sleep I hear the music first. Schubert. The Great Symphony in C major. Likely the second movement. As I find my feet in the dream, my whole body smiles. I am playing third chair bass in a sold-out, ornate hall. I can feel the heat of the stage lights penetrate my scalp to the skull. Lefty glides up and down the neck of my instrument, instinctively landing on the precise spot for a golden, resonant tone. The pizzicato line requires Righty to hook the bow with pinky and ring fingers while plucking with the index and middle fingers. The thick metal strings buzz flirtingly against my fingertips. The body of the bass is nuzzled against me with a familiar spooning comfort. I glance across the orchestra as the timpanist finishes a crescendoing roll, his mallet still in the air from its last stroke of the drum.
Our eyes meet and speak:
“Hot damn, we are making some music tonight!”
“Hot damn, we are the music tonight!”
Work dreams have changed a bit since ALS forced my retirement two years ago. Now, I find myself in the middle of some conundrum with the sudden realization that I no longer have a medical license. Time and again I abruptly end the encounter with an apology that creates a firm limit—the way a therapist says ‘sorry, our time’s up for today.’ This dream is a bit more forgiving.
Walking into a vaguely familiar clinic, I am greeted by many colleagues who have never worked together in real time. I soon realize that they are short staffed and I am filling in. We chat briefly, standing in front of a closet full of cerulean blue, oversized cotton sweaters, which people are donning like a lab coat or choir robe before hustling off to see their first patient.
I wander halls in a literal fog, unclear about where and how to begin, ultimately entering an exam room through the door that appears before me.
Sitting on the exam table facing me is a 7-year-old girl, whose deeply concerned expression is framed by a bounty of strawberry blonde ringlets.
My patient wastes no time.
“I’m going to be a second grader and I’m not going to be able to use the pictures to help me know all the words.”
“OK,” I say, sitting down and moving a bit closer. “What else?”
“I don’t know all the colors. Green is not always just green. Yellow can be yellowish with a different name.” Eyes wide, eyebrows raised, hands clasped and resting in her floral print lap, my patient awaits my response.
I slide in a tad bit closer, settling into a flow I know and love. Nodding, I agree with her about the colors.
“Age old problem,” I say.
Tapping a blossom on the print of her party dress (without question, her choice for the visit) I ask gently, “What color do you say this is?”
She looks up with a furrowed brow, “There you have it. The flower is blue but not precisely blue.”
“Right you are,” I reply. I suppress a smile, feeling affection emerge for my new patient. “Some would call it cornflower blue.”
Touching another bloom I ask, “How about this one?”
The print dress transforms into a shimmering canvas; the colors vibrate.
“How about butterscotch?” I offer.
My patient smiles and nods. I enjoy the simple pleasure of being trusted and useful.
“Ok, here’s what we are going to do. Your mom is going to buy you a big box of crayons for you to use instead of your markers. The names of the colors are on the side.” (Another casualty of virtual learning during the pandemic?)
“And try not to worry about the reading. That’s just the way it goes with learning to read. I think you will be just fine.”
This dream lingers into the day with me, and I savor it. Partly I enjoy feeling the flow experienced with my charming patient, and partly I am grateful to continue feeling useful.
Neurobiologist Ithai Rabinowitch at the Hebrew University of Jerusalem studies neuroplasticity in microscopic worms. “Humans are vision-dominant, but the worm is touch-dominant. That’s their eye. They just have an eye all over their body,” says Rabinowitch. Using the worm model, Professor Rabinowitch has discovered the brain “actually remodels itself, giving more real estate to other senses when one is missing.”
Our “super-sensing” roundworm, Caenorhabditis elegans.
Could it be that my brain is remodeling? Perhaps the vibrancy and joy of my dreams are the new reality of my brain since developing ALS. Could it be that a neuro-degenerative, neuromuscular condition like ALS is giving way to a super-sense in my dream life?
(This post is dedicated to my friend and mentor Danny B.)