The late winter world outside my window lies brown and still—bloodless and motionless.
Dark thoughts gather like storm clouds as I sit in my wheelchair, unmoving. They spiral tighter: why me, failing hands that once held children, each breath shorter than the last, one final dream of salt water against my skin – hopeless, trapped in these three rooms, her silence, money, the disease’s relentless march, why continue, too weak – even for suicide.
Their weight presses down on my chest. Each breath becomes a battle against an invisible, crushing force. Anxiety and depression settle in with winter’s patience, wearing me down, waiting to choke the light from my eyes.
Then, I remember something from another life.
In healthier days, I studied Brazilian Jiu-Jitsu, an art developed by a small, elderly man who made his name wrestling giants. Beyond its endless techniques lie three essential principles: space, frame, and leverage.
Pinned on my back beneath a larger opponent, these principles offered escape. A slight turn of the hips creates space to move where none existed. His sprawled limbs frame his body on top of me like table legs, but trap one ankle and pull his wrist close on the same side, and the physics shift. Buck my hips upwards and toward his trapped limbs, and his unbalanced weight betrays him. An elbow wedged against his hip becomes a frame of unyielding bone, preventing recovery. His mass flows like water, and with the certainty of the tide, our positions reverse.
Now, the opponent wears no face, but those same principles still balance the fight when darkness pins me down.
Space comes first. These spinning thoughts crush, crowd, paralyze, and panic. Instead of resisting, I watch them pass: fear, doubt, despair. I name each one, and in naming, I find a breath of distance.
Next comes framing. The mind wanders, lost in shadow-lands of futures that never come and pasts that never return. Stories of what might be and what might have been. Fictions. Reality lives only in this heartbeat—the drip of a faucet, dust motes spinning in kitchen window sunlight, a breeze dancing in the treetops, the scent of your own skin. So, I plant my attention here, framing my mind on the reality of this present moment’s solid ground.
Finally, leverage. Each dawn, I search for small wonders: morning light painting the valley gold, a chickadee’s fearless song piercing winter’s silence, the perfect spiral of a sleeping cat. Dark thoughts cannot hold their grip against a mountain of gratitude for such ordinary miracles. After all, we ride a sphere of rock and water spinning through space around an ancient fire, while billions of other fires burn in the vast dark. What terror can endure before such wonder?
This wrestling seems endless. Sometimes, darkness pins me down, helpless with my back on the floor, my heart racing against my ribs. But then I remember—space, frame, leverage—and escape once again.
5 Responses
Dear Bill
I’ve been reading your journal for a week now and I’ve been struggling to find the words to let you know the impact it’s had on me. But I surrender – I’ll never find the right words. So
I’m hoping you remember me from projects we worked together back in your Wingspan era and beyond. Your intellect, work ethic and wonderful sense of humor buoyed me as we slogged through thankless projects. I loved working with you. I’ve followed your career progression occasionally through LinkedIn and was pleased to see your successes – so well deserved.
So your recent LinkedIn post about your ALS diagnosis brought me to your journal. And to my knees.
Your journey is unimaginable- and I’m awestruck by your attitude and meditations. You are as amazing a human being as I remembered- only more so. I thank you for sharing your journal – and it’s important to me that you know it is helping me. My daughter passed away suddenly 2 years ago. Another unimaginable event. One that makes living often unbearable. I live only for her children now. And to speak about my beautiful daughter.
I’ve been depressed and angry.
Reading your journal entries has inspired me to look for a different path and perspective. I can’t explain it, I don’t have the words, but I am so blessed that you do.
So all I can say is that I love you. And that you will be remembered- by those whose lives you touched along the way and by your children and the grandchildren you haven’t yet met.
With respect and gratitude- Judy
Thank you.
Good analogy with sports. It’s just easier to fight when you know you can win, if not that time then the next. But it’s a completely different thing when you’re fighting something where there’s no winning and where not only you lose but also the people around you.
I wish you peace.
Thank you for your thoughtful and kind comment.
Unfortunately, you’ve described the human condition: it is in our nature to die. There is no possibility of “winning.”
But there is the present moment—full of wonders—that can be “won,” again and again, in every moment you live.
There are two parts to my reading your insights. One is the truly amazing writer that you are—a style so unique and moving. The other is the wisdom you are imparting of what the long slide to death means to you and thus a window for your readers. Thanks with all my heart and peace and courage to you.