“There’s a darkness upon me that’s covered in light.” –Seth Avett
In the course of my dis ease journey, I have tried to be honest about my experiences both good and bad, days of darkness and days of light, pleasant breezes and rainstorms. I say “tried” because in all honesty, my truthiness score is probably in the 90% range, mostly due to the omission of certain facts and details and not by speaking actual falsehoods. So, I must now admit to you that the last three months have been more darkness than light, more rain storm then pleasant breeze. Don’t get me wrong, I have had moments of supreme happiness, wonderful times with family and friends, but as I feel the physical effects of ALS compounding upon themselves, as I am more and more aware of my inability to mitigate the symptoms in any way that is more than palliative, I recognize an emotional hood, often dark and debilitating, pulled over my vision. And even on a sunny January day, life can feel grayish, like the yellowed air of a city that over relies on coal to cook and heat and light.
I have never bought into Cartesian mind-body duality, so the overall effect of this gritty sulfuric vision is integrated–psychological, emotional, social, physical, always physical. I suppose my friends in the counseling world would say that perhaps I am depressed. But this integrated effect is not depression. I think there is a better word, a better way to frame this holistic overarching ALS filtered life. I prefer to think of it as diminished. In spite of all the emotional, social, intellectual joy that I feel, the fact is that the physical overwhelms, playing a cruel trump card.
Parenthetically, my former administrative assistant Mavis would probably remind me that I often suffered the symptoms of seasonal affective disorder at this time of year, even before my ALS. She would ask me, “Why do you think it isn’t SAD? Hmmm?”
Taking stock of the physical, there is much that reflects diminishment.
Sleep is inconsistent, mostly due to the fact that I must lie on my back, unable to move unless Ev moves me. This results in searing, burning sensations in my feet and psychological feelings of being trapped, unable to mitigate the pain. If I can sleep through this it is a good thing, but there is always the chance that a bad night is ahead: Diminishment.
My torso and my neck have weakened to the point where in the evening I must be very careful about the angle of my chair or my head will tip forward, and I will be unable to raise it. And my legs are now completely useless. I have no physical capability that would allow me to meaningfully use my legs or feet in any way: Diminishment.
My breathing is also affected. I am not able to cough or sneeze with any authority. I am unable to force air out of my lungs in a sudden fashion. Likewise I am unable to get the breath support underneath my voice that would allow me to project in a meaningful way. I yawn often, and I can nod off at the drop of the hat. My energy is way down: Diminishment.
The drug trial in which I participated for the past 18 months has been declared a failure, so we still have only one drug that has shown any efficacy toward treatment of ALS. Forgive the pun, but this one was a hard pill to swallow. Of the 3 to 5 most promising treatments in testing, two look to be washed out and a third lacks the financial resources to take to phase 3. It is physically disappointing and psychologically frustrating: Diminishment.
I no longer type over any length of time. This blog is my first totally dictated, including most of the editing. I’m sorry for that, as the dictated voice sounds so different to me from the one that emerged from my hands just a few short months ago. But with typing, a single paragraph can take hours, and neither my hands nor my arms can functionally maintain the distance from the keyboard that is required for any meaningful time devoted to the task: Diminishment.
My arm and hand weakness means that within the past week Ev and my caregivers have actually begun to feed me full-time. I am not looking forward to communicating this fact to my lunchtime friends. They come so cheerful and hopeful, and knowing that I will have to communicate my inability to feed myself, feels so disappointing to me. Usually, I cannot reach my head or legs to scratch–I can feel the itch, just not do anything about it: Diminishment.
Yet, diminishment is not depression, overarching weakness is not an overwhelming loss of strength, drugs are only the first line of treatment, and I am not dead yet. There are stabs of remarkable lightness, underscored by the lights of family, friends, and breath.
At the encouragement of friends and family I started adaptive yoga the day after Thanksgiving, first on Fridays, and now Monday evenings. Adaptive yoga allows a person with disability to find centeredness through restorative and strengthening poses and breathing, always breathing. During each session, the darkness lifts for a few moments, my sense of breath increases, the compacted feeling that comes from progressive physical loss and over-reliance on mechanical wonders such as power chairs mitigates into light, reaching out beyond the confinement, and even though I find myself conscious of another loss and another each week and each, I am also aware of divinity within, each of us communing through Holy Spirit in breath and pose and selfless friends and teachers lifting us into divine spaces. Invariably, joy and tears combine for me each session.
And then there is church. I go to sing the old songs in ways that will never approach my old ways. I go to contemplate and to pray and to meditate and to think upon the great metaphysical questions. I go to greet friends and to receive kisses and hugs and smiles and yes, a little bit of cooperative mourning from believers and curmudgeons alike. A smile from one of my former choir members is always a shaft of sunlight in the roiling clouded darkness. And like yoga, I go to church to mix laughter with tears.
And when my family descends upon our condo for cooking, filling the place with redolent spice and roasted garlic poblano smells, meats and wine and beers and passion–passion for eating and passion for each other–I am filled. Animated discussions, laughing loving appreciation for music, awe for artistry, or irritated disgust with NYT columnists, blowing their arguments to smithereens, lift me into tears and life over ALS. Even when we just kick back with a movie or a game, all I need is the being of family.
All of this is to say that I get Seth Avett’s profundity. The Avett Brothers embraced darkness and light through their own support of a colleague and friend until he died from ALS.
If you want to call this depression, please know that I cannot. For me, it is life ordinary, pulling back and pulling in of life lived large. And even though it is dark in the space, I know that light exists, and that there will still be times where my spirit will soar. It is hard not to think about death and leaving and loss and grief and pain. As I diminish, as I wind down, as I slowly circle back, how could it be otherwise?
See, it is just living until I die, or the last 10% of my truthiness.