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.
“Yellowish-Orangish.”
“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.)
Yes, I would say you have yet another superpower! Thanks for sharing!
Your musings above followed by the insightful analysis of your friend’s painting below once again have me on the verge of tears. Your writing is honest and earnest. May I suggest to you “All the Beauty in the World” by Patrick Brimley? (When you have an opportunity) In audio format, the author himself reads the text which I found to be particularly poignant. I thought of you often as he articulates his own grief. Please let me know if it resonates with you as well. Love, Den
Thanks Jim, I take some comfort in knowing that I am not alone in my disruptive sleep patterns. Although my dreams are on a much more primitive level, I do have a recurring dream where I have my voice back. I realize I have regained my speech and talking a blue streak like my old self. Maybe soon I will appear on stage with you. Pat
Amen to All the Beauty in the World
Jim told me about this dream and I said there’s a poem. Also a symphony. Also an example of what we can’t teach in med school. Jim teaches colors and the names of the colors are poems. Cornflower blue. We can’t teach it except by calling attention to the vividness of such holy moments
Amen to All the Beauty in the World
Dr Ogan, yes, you will be our doctor forever. I could hear your voice talking to my kids in your office as I read about you talking to your patient. It warmed my heart ❤️. Thanks for sharing.
So grateful that you have found a way to continue to share your beautiful perspectives and wisdom with the world. You and Peggy are a gift to so many of us. Wishing you a peaceful night’s sleep and more amazing dreams.
Dear Jim & Peggy,
Eye gaze typing is a remarkable adaptive bridge. Can we imagine what the adaptive tech will be for adjusting bedcovers and repositioning a breathing mask at 2 AM. Will there be a tiny flighty robot hovering over your bed to keep you tucked in.
Jim, the dreams you shared are delights. Doctors should all be wearing cerulean blue sweaters. The names of colors on Crayola crayons: iconic, such a classic part of our childhood. Your brain, as you posit, may be “remodeling”, but it is holding close things you love like color and children and music.
Peggy & Jim, wishing you both a Happy Valentine’s Day.
Your ability to come along side those who are struggling with calming love and grace brings me to my knees. It always has. You see into who people are. And are not afraid of the struggle. I feel that is how you open the door for wholeness to happen. Love you to the moon and back!
This article was beautifully written, like music itself. As with others who were the “parents of your little patients”, the exchange between your dream self and the little girl immediately brought to mind many kind and thoughtful exchanges with my kids. Especially Sean, who had unique challenges that you helped him put into words and address- I can still see your quirky smile as you felt genuine humor in an exchange with him.
I also wanted to say, in comment to the other article mentioning physicians who had made a serious medical error, how that humility and honesty can be a gift not only to the patient and yourself but to any of us “outside observers” or readers (in this case) of the encounter.
I recall once, on a visit to your practice where we were talking in the little office with the comfy sitting area. You got another call that you needed to go take, and came back visibly shaken. You shared that you were involved with a young adolescent patient who was going through a challenge that you couldn’t really help with. I saw a little bit of magic happened as you dealt with that feeling and processed it- and within a few moments had resolved to reach out to a colleague who was perhaps equipped in a different way for this particular issue. The relief or sense of hope that I saw in that moment showed me your deep human compassion for others.
Thank you, again and again for the lessons you have taught and continue to teach us.
The dream of the young patient who knows the specific differences of color but is lagging in reading skills…love this, and how you handled the situation. Just as you would have when you practiced, Jim. 🙂
Read together, both your latest blog and the article on the “turbo-charged life” offers all of us a guide and the encouragement to develop that “super-sense” for the “vibrancy and joy of life” – wherever we find ourselves in our lives – working, retiring, healing, celebrating. Such wisdom for each of us to live each day aware of both the pain and suffering of life, but also the incredible joy and beauty. And each day to allow our lives to be “actively seeking beauty, engaging in gratitude practices daily, setting aside time for contemplation, receiving the kindness and love of community, finding ways to make the world better” – thank you, thank you, you for these wise and kind reminders…
It is a story filled with hope. I value how no matter your physical abilities subside your passion to serve grows stronger.
Helen is sick right now–the limp body, red-cheeked, high-fever type of sick. I remember calling you the first time we had a child taken down by a virus like this. You listened, paused before speaking, and then asked, “This is your first time dealing with a high fever like this, right?” And you patiently walked me through what to expect and what to do. I recalled your reassuring voice and guidance as I have been caring for Helen tonight. You will always be useful to me.
And here’s something I cannot explain . . . after throwing up, Helen (who is now seven years old), told me how she thinks of colors when vomiting. She then proceeded to run through the colors she was thinking of while throwing up. You are one with the seven-year-old girls and colors!
Reading your dream account of your patient examination teleported me back to a beautiful time observing you examine and converse with lucas… or many times over the years ! A beautiful image!
The vividness of your dream accounts is amazing, Jim. I’ve known you as a family friend, not a doctor, but I could feel your bedside manner from here. As an adult navigating the post-pediatrician world, I wish I could have you as my doctor! The care you bring to your dream patients and your writing is palpable.
This is such a beautiful piece of writing. Thank you for sharing your dreams. I was absolutely riveted. And I love that you are having work dreams where you can be reminded of your compassionate care and lasting impact for countless families.
I imagine it’s a slow and laborious process to create your blog posts. I’m so grateful you’re continuing this kindness and gift to all of us.
Love, erika
I can hear your kind, playful, and patient voice as you relate with the seven-year-old girl about colors. It reminds me of our trips to your office with our young kids. Sometimes their pressing questions came up or, more often, our parental anxieties. You have reassured countless kids—and parents—through their moments of concern.
I imagine that doctor visits are not usually something the whole family actively looks forward to—but with you, we certainly did. We continue to talk as a family about how fortunate we were to have you as a guide in our children’s first years of life. Thank you for continuing to share your gifts and wisdom. You are a blessing!
Ir’s a lovely piece. Thank you.
Reading this transports me right back to your office. I can remember conversations you had with each one of our boys – and more frequently me – immediately putting their minds (or my mind) at ease. In a very matter of fact manner, you’d lay out a simple explanation and plan and just like that, everything would seem lighter. I do hope you know how very useful you always have been and how incredibly useful you continue to be.
I so appreciate the effort I’m sure these posts must require – thank you for sharing.