I was interviewed on the podcast “The R Factor ” this last week. You can listen to it here, if you’d like: HERE
I was given the questions to be going to asked early, so if I had a bad day breathing or speaking, I could simply play the pre-recorded answers. As it so happened, my voice was pretty good that day, and most of the interview went a bit off script. Please excuse my language during some of it. After working as a commercial fisherman, and spending over 25 years on Wall Street, my spoken language can be a little “salty”, when I let my guard down.
I do think that there may be some helpful things to be found in both the podcast and the materials I had prepared. So, I’d like to share the prepared materials here:
THE FIVE QUESTIONS FOR BILL
1. Amor Fati – The Foundation
Bill, you’ve talked about living with the philosophy of Amor Fati—loving your fate. For those hearing that for the first time, what does it truly mean, and how have you been able to live that out in the face of ALS?
Actually, when my legs first began to fail, I had two words engraved on the handle of my new cane: Amor Fati: love of fate. In those early days of the disease, they served as an important reminder.
It is a radical idea, and not what you might expect. It is not endurance, that jaw-clenched waiting for something unpleasant to pass. It is not the stiff upper lip, that practiced refusal to feel what you feel. And it is not making lemonade from lemons, the cheerful alchemy that insists bad things can be made good with the right attitude and the right ingredients. Sometimes that works. Often it does not. And when hope betrays us, the fall is harder still.
These are all, in their different ways, forms of running.
Amor Fati goes further than acceptance. Acceptance is simply recognizing that you hold a lemon. Amor Fati is something else. It is bringing the fruit to your lips. Feeling its waxy skin give way under your teeth. Noticing your mouth pucker at the shock. And staying with it. Tasting its brightness. Letting the juice run down your chin. Not enduring the bitterness. Not sweetening it. Loving it. Because the real miracle is that a lemon exists at all, on this madly spinning rock, circling an ancient atomic fire in the deep void of space.
This is participation, not surrender. Amor Fati does not ask us to abandon the work of making the world kinder or to stop striving for what matters. It asks only that we stop clinging to comfort, stop demanding that life be other than what it is. It is fierce, honest, resilient gratitude for what is: the necessary step beyond acceptance.
ALS has been my master class.
For those unfamiliar, the disease is fatal and has no cure. When I was first diagnosed, I was given twenty-four months and told to put my affairs in order. ALS moves through the body like a slow-motion spinal stroke, killing the nerves that carry the brain’s commands to the muscles, rendering its victims quadriplegic by degrees, then taking the ability to swallow, to speak, and finally to breathe. Through all of it, sensation and cognition remain perfectly intact. Every unreachable itch. Every ant crossing motionless toes. Every sensation faithfully delivered to a body that can no longer answer.
It is a little tough to take.
And yet, I am grateful. Grateful for the forced stillness at the end of a relentlessly busy life, and for the time to look at it clearly. Grateful to examine the process of dying with the lucidity and patience this strange disease allows — a kind of dying that, however unwelcome, few are granted. Grateful for the chance to say my goodbyes and to prepare my children for what is coming. For the books that deepened these meditations and cracked open the walls of the body that had become my prison. For five years spent on the shores of death, learning its landscape. For the technology that lets me write with nothing but the movement of my eyes, and leave something behind: a trail blazed through territory all of us must someday cross, though few have been able to speak of what lies there.
Depression lives in the shadows and sometimes blocks out everything. But Amor Fati, this love of what is, this refusal to look away, gives me enough gratitude and purpose to continue.
Not despite what has happened.
Because of it.
2. The “R” – Your Response
This podcast is called The R Zone—the space between what happens to us and how we choose to respond. Very few people are asked to face what you’re facing, with the awareness that time is limited. How have you found the strength, clarity, and composure to respond to this moment with such courage, grace, and honesty?
Our time with these bodies, these minds, and the people we love is not permanent. And that is exactly the point. Impermanence is not the thief of meaning. It is the source of it. Not abundance, but scarcity, gives things their worth.
How many times have you lost track of that truth? Forgotten gratitude for the people in your life, for your health, for the bare miracle of there being anything at all? The color fades from ordinary days. The people we love become annoyances. One day of drudgery bleeds into the next. Nothing shines because we have forgotten — quietly, without noticing — that it is all going away.
Faced daily with my own death, refusing to run or look away, how could I respond in any other way? Gratitude. Strength. Clarity. The composure that comes from seeing the world as it actually is.
Radiant.
Grief finds me sometimes. Sadness for what I have lost, for experiences I will not live to have. But it passes, and what remains is gratitude — for what is, for what has been, for what I still have and still feel. I have been given this life. The people in it. Even this disease.
The horror, the beautiful. All miraculous. All one. All fleeting. All becoming new.
All is well.
No matter what comes.
3. The Message – What Matters Most
When everything else gets stripped away—titles, plans, the future—what becomes crystal clear. If you could share one message with the world right now, something you know people tend to avoid or overlook, what would you want them to truly understand about life?
Oneness.
A few springs ago, I drove my wheelchair to the stream at the end of my yard and found one of the earliest mayfly hatches of the year underway. From years of fly fishing, I recognized them as blue-winged olives. To the delight of the fish below, they had emerged from the water and were flying just above the surface during their single day of life before mating and dying.
Watching, I began to wonder how something with such a short lifespan perceives the world. For a spinner mayfly, temporary things may seem permanent. When a passing cloud blocks the sun, the world becomes permanently dim. The brevity of their experience distorts their perception, like a snapshot of someone mid-jump, forever suspended in flight.
In our few years, we suffer from the same distortion.
Buildings, trees, animals, and other people—much of what surrounds us—appear permanent and separate. Even in the middle of summer, it somehow feels impossible that stifling heat and lush green could become frozen and barren.
What appears permanent and separate is not. We know this. We see it in the world around us and feel it in our own bodies.
To watch anything long enough is to witness it transform into something else. The universe flows: seed into sprout, sprout into plant, plant into fruit, fruit into the animal that eats it, animal into its offspring and the hawk that takes it, hawk into soil when it falls from the sky. Everything depends on everything else; everything becomes something else. The forms we perceive as separate, the things we love or hate, desire or avoid, cling to or discard, are temporary configurations of this flow. Not permanent. Not separate. One.
Like the mayfly, if our lives were longer, or if we simply paid closer attention, our vision would be clearer. Instead of separate things, we would perceive one vast, flowing sea. Waves rise and fall. The surface churns white in a storm or lies smooth and glasslike. But it is always one. Always moving. Always becoming. Always the sea.
In this universal flow, what matters most are our actions. A kind word, neglect, a helping hand, or an act of violence alters what becomes. Each shapes the current, bringing suffering or happiness in ways we cannot fully imagine. This is not an abstraction or theory of ethics. It is how the universe, of which you are as much a part as anything else, is shaped, harmed, or made to flourish.
Strive to see clearly. Have compassion for those who cannot. Be kind.
4. Fear of Death – Reframing the Unknown
So many people carry a deep fear of death but don’t know how to even talk about it. From where you sit today, how has your perspective changed, and what would you say to someone who is afraid of dying?
What you feel is natural. It is encoded in the oldest parts of us—primordial, animal, overwhelming. Our culture recoils from death as the body recoils from flame, and this fear is not weakness. It is ancient. It deserves tenderness.
In my own long crossing toward peace with my fading, I have not always offered that tenderness. Too often, I pressed what I had discovered, still blistering, still charged, into the hands of those struggling in waters I have not yet fully crossed myself. I called it love. But there was carelessness in it, too.
Whether you speak of death with the casual tone of someone scheduling an unpleasant errand, or with the urgent fervor of someone who has found something precious and cannot rest until those they love hold it as well, the effect on a listener may be unkind. You cannot throw a bar of gold to someone struggling to keep their head above water; they will only sink faster.
A drowning person does not need an answer. They need air.
What those we love most need—what I may once have needed, before my fear slowly dissolved—is not the treasure. It is patience. Presence. The quiet grace of simply swimming beside them.
This is what I have tried to do in my writing. But in the raw, unguarded moments of daily conversation with those I love most, I have been far less skillful. Grief and joy alike, in their rawness, can do harm. I know this. I carry it.
Each of us must swim these waters for ourselves. But if you are willing, let me ask you a few questions as we go:
What is this self whose loss gives rise to our fear?
Can you find it? Is it the body? The senses? The mind? The stream of thoughts and perceptions that flows through us each day?
Where did these things come from? Are they fixed, or always in motion? What are they made of? Where does the self end—and where does the world begin?
Does the self truly exist as a separate thing? Or is it, like a wave, part of something so vast it has no name?
If that is so—what, then, is our true nature?
Can it be born?
Can it die?
Sit with these questions—not to answer them, but to let them open you.
The wave does not mourn what it was a moment before it breaks. It has never been anything less or more than water. As it slides back across the sand, it returns to what it never truly left.
5. Lessons Only This Could Teach
You’ve lived a full and meaningful life, but this chapter has revealed something deeper. What are the lessons, the truths, that you could only have learned by going through this experience?
There has been such depth in what this disease and the forested valley where I live have taught me: gratitude, focus, patience, and the ability to let go. This forced stillness, this intimacy with dying, has opened a quality of reflection that my life before the diagnosis, busy with travel, conversation, planning, learning, striving, leading, working, would not have easily allowed.
In many ways, a life once defined by motion has narrowed to this chair, these three downstairs rooms, and six acres of lawn, woods, and stream. Last month, I noticed that the app I use to track my active son’s whereabouts also showed that I had not left this address for 5 full months.
And yet, how surprising that the aperture of my vision has widened even as my world has narrowed. Not through travel, experience, adventure, or the presence of others, but through bare, deep attention to the very small. Revelation came not on some exotic mountaintop but on my back patio, paralyzed and in a wheelchair, quietly sipping coffee as birds visited the feeders.
Toward the end of last summer, it had become my habit to open the automated patio doors with my voice, go outside early enough to watch the bats return to their roost by the chimney, and meditate as the rising sun warmed the slate. On one such morning, a yellowjacket wasp took a particular interest in my paralyzed, yet fully sensate, right hand.
Powerless to shoo it away, I chose not to panic or call out for help but to make it the focus of my meditation, even if it ended in a sting.
When an insect colored like a warning traffic sign, one that has stung you many times before, crawls slowly across your skin, legs gripping, body probing, antennae tapping, while every instinct in you tightens against the urge to recoil, it is an extraordinary anchor to the present moment. Especially if, like me, flying stinging insects have always made you irrationally uneasy, ever since being stung by surprise as a young boy enjoying a piece of fruit on the swing set.
The wasp hung from the tip of my little finger. I felt the barbs of its six legs grip tight. It explored my palm, moving back and forth as if searching for something lost. At my thumb, I felt the two points of its jaw probing carefully under my nail. As it crawled through the narrow spaces between my fingers, I felt the hard segments of its body, one by one. It moved from my palm to the back of my hand, stepping carefully among the hairs of my wrist and forearm.
Then it flew away.
I sat in the warming sun, listening to the birds, grateful for this disease, for this valley, and for the life within it that continues, relentlessly and even unpleasantly, to teach.
OPTIONAL BONUS QUESTION
6. Presence Without False HopeWith ALS, there’s no clear path to recovery. And yet, you seem fully present—still living, still engaging, still giving. How have you been able to stay grounded in the moment without relying on hope for a different outcome?
When I received my diagnosis, the doctors were perhaps overly cautious about offering false hope. They told me plainly: You’re going to die from this—likely within two years. There are no effective treatments. It will disable you first, then take your ability to breathe. We’ll do what we can to keep you comfortable.
For me, hope has little to do with circumstances. Hope is about intention. It is will, bounded by reality. It isn’t an escape into a preferred future or a deeply desired fantasy. It’s the force within you, in this moment, that compels you to keep going, to do good in the world, and to refuse to give up.
In the words of Emily Dickinson,
“Hope” is the thing with feathers — That perches in the soul — And sings the tune without the words — And never stops — at all —
And sweetest — in the Gale — is heard — And sore must be the storm — That could abash the little Bird That kept so many warm —
But hope can be distorted—misused, almost like a drug. It becomes a way to avoid what must be faced. At that point, it’s no longer hope at all, but fantasy.
For the first two years after my diagnosis, I did my best to hide the disease. Over time, though, it became impossible to conceal, and I had to address it directly with my company. As a leader, I needed to communicate a sense of hope in what felt like a hopeless situation. It wasn’t easy.
But, in writing that message, I believe I answered your question as clearly as I can:
———- Forwarded message ———
From: William Martiner Date: Sun, Jul 16, 2023 at 7:02 PM
Subject: Purposefully, usefully, gratefully, mindfully, and as well as possible for as long as possible
To: Avenue One Team
Since early in 2021, I’ve held a secret.
I held it because I didn’t want to add to the overload of creating our company. I held it because I was afraid of what its impact might be. And, if I’m honest, I held it to make it a little less real for myself.
But now it’s time to spill the beans. So, listen up. I only want to say this once.
In February of 2021, I finally got the third medical opinion that the limp in my right leg was caused by the exceptionally rare neurological condition that ended the lives of people like Morrie Schwartz, Stephen Hawking, and Lou Gehrig.
ALS (aka MND, Lou Gehrig’s Disease, or Charcot’s Disease) selectively impacts the nerves that allow your brain to tell your muscles to move. Senses and cognition are generally uninvolved. There’s no pain. There is just the progressive loss of function until it reaches the muscles involved in breathing. It’s terminal, typically within five years, and has no cure. Medicine doesn’t know what causes it, or really much about it. There are no drugs in development that are likely to significantly change my course.
To borrow the opening lines of The Martian, “I’m pretty much fucked. That’s my considered opinion. Fucked.”
So, now what?
Well, my progression has been relatively slow, and ALS generally moves at the same pace throughout its course. So, I’m sharing this with you now in the full hope of being that one dinner guest who announces that they can only stay a few minutes as the first drink is being served and then lacks the good taste to leave before the dishes are put away.
I am committed to doing this as usefully and as well as I can. If nothing else in this life, I am a profoundly stubborn man. And, I will remain engaged with this thing of ours, of which I am so proud.
For as long as possible, my plan and my role will be unchanged. I will have the same focus, projects, opinions, peeves, and proclivity to blather on. In fact, the only rational response to this situation I can think of is to just put one foot in front of the other, to solve the engineering and logistical challenges my body now presents, and to carry on.
That said, not a day passes that I don’t marvel with gratitude for the people and resources that have somehow materialized, as if summoned by some strange synchronicity, since I got sick.
This gratitude extends to the astonishingly rare opportunity I have to wrap things up in the slow, lucid, contemplative way that this disease sits you down and demands. When you have an unpleasant roommate like this for as long as I have, you eventually make your peace. To be sure, it’s ongoing work. But, more and more, I’m embracing the adventure of scouting the path ahead with wide-open eyes.
After all, it’s unlikely you will be as lucky.
You see, you are dying too, ever since birth. This is not an abstraction; it’s entirely possible that you beat me to the punch. You might not have the time left that I do and, when you face it, you’re probably not going to get five years to meditate on it.
The truth is, you are every bit as fucked as I am. We all are. We always have been. I’m just now in better touch with the fact that so many work so hard to avoid – until it’s too late to either die or to live well.
So, what can you do?
First, I don’t want your condolences and I definitely don’t want your pity – I find nothing more depressing. You don’t need to say anything and let me free you from any burden you might feel to respond to this email.
Aside from that, the best way that you can react is just to follow my lead and just keep on keeping on. Nothing has really changed.
I can assure you that I am still the same douchebag I always have been, and would appreciate continuing to be treated as such. The only practical difference is that I’m now considerably less concerned with my resume than I once was, and now I’m an even worse dancer.
Regardless, I have resolved to live purposefully, usefully, gratefully, mindfully, and as well as possible for as long as possible. And I applaud your courage to do the same.
Carpe Fucking Diem,
Bill