“Through the hourglass I saw you, in time you slipped away
When the mirror crashed, I called you
and turned to hear you say: If only for today, I am unafraid
Take my breath away….”
Mama always told me not to look into the eyes of the sun, but Mama, that’s where the fun is.
ALS clinic at Barrows Neurological Clinic is a one-stop medical extravaganza. Every two or three months, we devote an entire afternoon seeing a neurologist, a physical and occupational therapist, a speech therapist, a respiratory therapist and if needed, people like “the wheelchair guy.”
With neither treatment nor cure for ALS, the doctor takes more of a supporting role in this cast (although he does write the all-important prescriptions). The headliner this time was Brandi, the respiratory therapist, who charts the even more important numbers that measure Jamie’s ability to breathe.
Her numbers provided specificity to what we already knew: Jamie’s respiration has taken a sharp and serious nosedive. Dr. Ortega didn’t need numbers to see the deterioration. He noticed immediately, by the way Jamie uses his body to breathe. You’d notice it, too.
Jamie can’t cough or sneeze. His wonderful, infectious laugh has disappeared. He is tethered to the BiPAP machine more frequently. He takes quick sips of air after three or four syllables, and some days he can barely muster the air to speak above a whisper. People draw close to catch what he’s saying.
Losing his ability to communicate — to converse — is by far the worst, the most terrifying scene in this play. Jamie can’t imagine himself in the world without engaging others, and conversations have been his sweet spot. He would rather pick up the phone and invite you to a verbal dance than correspond. He’s not a Luddite — he’s fine with email and texts. But those are methods for information delivery. Conversations are relationships. Connection. Satisfaction.
This dramatic turn of events has made for interesting conversation around here, including one that centered on his active resistance to taking prescribed narcotics.
Jamie lives in two places now — the wheelchair and the bed. He has long complained of aches and joint pain stemming from his inability to move his limbs. The doctor told us that a low dose of oxycodone would not, as Jamie feared, leave him in a vacant stupor. It would help him be more comfortable in his body, and also would help relieve some of the anxiety produced by what the brain feels as “air hunger.”
Still, he said “no” every time I suggested a dose.
As a child of the 60s, Jamie did his fair share of what he calls “better living through chemistry.” When drugs were illegal and forbidden, he enjoyed experimenting. Now that he could legally get pills to make him feel better, he stubbornly refused to take them. I didn’t get it. I was tired of fighting him. Was this just his “rebel” nature manifesting?
The ensuing conversation got so interesting that I turned on my recorder.
“Life is not always comfortable,” Jamie told me. “Why should death be?
“For me, it goes to the notion of pain and suffering, because they’re not the same thing,” he continued. “If I’m taking [painkillers] so I can move my shoulders, or so that my knees don’t ache and my feet don’t hurt, I get that. But in some ways, that is the only connection I have any longer to the pain of life. Everyone is so afraid of that pain. Everyone is so afraid of being uncomfortable.”
After a pause, he referenced a lyric from “Blinded by the Light.”
Mama always told me not to look into the eyes of the sun, but Mama, that’s where the fun is.
“Looking into the eyes of the sun is being able to look at things in their most honest and austere form,” Jamie said. “And that is where the excitement and the learning is. But it’s also painful. I’ve spent of my life trying to embrace that pain. It’s why people think I’m so edgy. Why would I expect to die any other way? Why would I want to die any other way?”
Knowing him the way I do, Jamie’s lines made sense to me. Doing things the hard way, and pushing through the pain and discomfort of that friction, leads to fire. In yoga, this is tapas. Enduring the fire means purification, strength, resilience. Our consulting work has been about encouraging people to draw closer to the fire, to stop backing away.
From the beginning of this ALS journey, Jamie has been determined to be aware and alive to his experience. But his comments started me wondering about the Buddhist notion of pain and suffering. Did he make a distinction between pain, which is inevitable, and suffering, which is optional?
“To reject painkillers because you see it as the easy way out, isn’t there also an element of choosing suffering there?” I asked.
Wasn’t it possible that by alleviating some of the physical pain — which has been extraordinary — he could be more present to what actively dying has to teach him? Without such physical discomfort, perhaps he would be more aware of the love that surrounds him, of the gifts and graces we are receiving along the way? Mightn’t it make him even more receptive to the greatest teacher we’ve ever had?
He was quiet for a moment. “Well, I guess I’ve thought if my knees and feet didn’t ache so much, or if I could sleep all night, that this emotional numbness would have to accompany that. And now I’m seeing that maybe it doesn’t have to. ” He began taking his medicine.
Just one year ago, Jamie was driving, walking, riding his bike. He puttered around the house, cleaned the kitchen after I cooked, petted Bodhi when he was in a lap-cat mood. In delight, he could unleash his beautiful guffaw. We could walk to our neighborhood restaurant holding hands.
And it was almost a year ago exactly that a mild, two-mile hike left Jamie so physically consumed — so out of breath — that he had to get a ride back to the place we were working. The harbinger.
The speed of this journey is, indeed, leaving us breathless.