Until I Say Goodbye

By Susan Spencer-Wendel

12 min read

Why does it matter? Because joy is not a feeling — it's a practice, and dying taught one woman how to do it.

Most people, handed a terminal diagnosis, assume the story is over. What remains is either a fight or a farewell. Susan Spencer-Wendel, a Palm Beach courthouse reporter with ALS eating her muscles from the inside out, refused both scripts. What she built instead — deliberately, methodically, with the same forensic instinct she brought to a decade of courthouse work — was a year of living so specifically that joy became not a mood but a practice. Not a bucket list. A discipline. The difference matters: bucket lists are about places and events; what Spencer-Wendel discovered is that the thing worth chasing is the exact texture of a moment, chosen and witnessed with full attention, traded consciously for the muscle it cost her to get there. This book is the evidence she collected. It turns out that question has a specific answer — more useful, and stranger, than anyone expects.

The Decision You Make in a Burger King Parking Lot Changes Everything

Susan Spencer-Wendel is sitting on a parking barrier outside a Burger King in Miami, smoking a cigarette, one hour after a neurologist named Dr. Ashok Verma informed her — with what she would later describe as chirping, party-invitation cheerfulness — that she had ALS. Her husband John is inside ordering a Whopper. She is forty-four years old, a court reporter for the Palm Beach Post, the mother of three sons, and she has just been handed a sentence that typically runs three to five years from first symptom to death.

What she decides next is the entire book.

She runs a quick audit of forty-four years: rarely sick, three easy pregnancies, a job she genuinely loved, a husband who will, she already knows, be late to her funeral. She thinks about Lou Gehrig standing before a packed stadium in 1939, declaring himself the luckiest man alive after being diagnosed with the disease that now bears his name. She had always wondered whether that speech was sincere or just the performance an athlete gives when tens of thousands of people are watching. Sitting alone on a concrete barrier in a fast-food parking lot with no audience at all, she finds out it can be sincere.

She makes three commitments to herself: no bankrupting the family chasing experimental treatments; no clinical trials where she might receive a placebo; no desperate Google spirals hunting for someone willing to offer false hope. The philosophy is less about fighting ALS than about not letting the fight consume whatever time she has left.

What she decides instead is this: ALS will take her hands, her voice, eventually her ability to swallow. It cannot take her capacity to write. She is a journalist. She will spend whatever time she has building, in her words, a garden of memories — something her children can inhabit after she is gone. Joy not as consolation prize but as the actual plan.

ALS Doesn't Take Your Life — It Takes It Layer by Layer

ALS doesn't ambush you. It decommissions you, one specific capacity at a time, so gradually that you spend months improvising workarounds before admitting anything is gone.

Susan Spencer-Wendel's disease had a particular cruelty to it: it came for her hands first, and she was a journalist. The degradation followed a precise sequence. She lost the ability to hit the letter 'p' — not typing in general, just that one key, her pinkie no longer reaching. So she hunt-and-pecked with six fingers. When she could no longer lift her own laptop, she asked colleagues to retrieve it from her bag. She started missing deadlines, then missing more of them. She began lying awake running the same math: she was occupying a slot that could go to someone with two working hands, in an industry already gutted by recession. Being a court reporter wasn't what she did. It was what she was.

The clearest image of what that cost her comes not from the newsroom but from a staircase outside a prosecutor's office. Her leg buckled mid-step, and she went down hard — no arm strength to break the fall, blood running down her left leg by the time someone helped her up. The prosecutor, a man who had always regarded her with barely concealed contempt, took one look at the wound and offered to reschedule. She refused. She understood in that moment that she would never be more capable than she was right now. Every day going forward was a withdrawal, never a deposit.

That insight — no later, only a diminishing now — is the real architecture of her story. She goes on to lose yoga, then her car keys (pulled over on a quiet road, handed them to a friend without drama), then the ability to swim in her own backyard pool, where she inhales water during a casual attempt to float and discovers she can no longer lift her head. None of these losses arrive with ceremony. They slip away one by one, small and specific and irreversible, the way charms disappear from a necklace. And it is exactly this accumulation of the ordinary that makes her philosophy legible: she isn't choosing joy in spite of tragedy, but with a complete accounting of the cost.

Trading Muscle for Memories Is a Real Transaction, With Real Costs

Wreck Beach answers that with precision. Susan descends four hundred stairs to a Vancouver shoreline with her friend Nick and his girlfriend, planting her weaker left foot first on each step, then following with her right, pausing on benches to rest, gripping Nancy so she has something to catch her fall. She makes it to the bottom. She is immediately too exhausted to cross the polished stones to the water's edge. She sits on a driftwood log in the wind while Nancy covers her legs with a blanket and both of them quietly wonder whether the fire department will need to carry her back up. Eventually they help her to the fire, where Nick and his girlfriend tell the story of how they met — he kept coming into her flower shop until something clicked — and the sun sets, and Nick photographs Nancy standing in the golden light. It is, by any measure, a beautiful afternoon.

The climb back takes more than an hour. Nancy grips her elbow on every step. At the top, Susan cannot walk to the car. Nick drives around to collect her.

Here is the biology her physical therapist, Kathy, has already explained: in a healthy person, exercise tears muscle fiber down and the body rebuilds it stronger — that's the entire mechanism of fitness. In an ALS patient, that repair signal is broken. Muscle that tears simply disappears. Susan is explicit about what happened on those stairs: she left permanent capacity on them, and she has never walked correctly since.

Kathy had already warned her after the Yukon trip — the effort of traveling is accelerating the damage. Susan's response, then and after every subsequent trip, was a flat refusal. Within a week of returning from Vancouver, she had booked Hungary, Cyprus, and individual trips for each of her children.

Neither reckless nor simply heroic — the section holds both at once. The beach was genuinely beautiful, the trade was genuinely real, and Susan knew the exchange rate before she took the first step down. What you're left with isn't a lesson about courage. It's Nick raising his camera, the golden light on Nancy's face, and the full knowledge of what that photograph cost.

Every Loss Breaks Open Something the Healthy Life Had Sealed Shut

The clearest evidence is John. By the time Susan has lost the use of both arms, he is dressing her every morning — working through buttons, zippers, clasps, the arcane female engineering of slippery underwear and brace buckles — while quietly falling apart. He pulls over between pharmaceutical sales calls to weep. He starts yelling at the kids over trumpet practice and sketchbooks. One morning, dressing Susan, he cries through every single fastener. His Jamaican boss diagnoses this with admirable directness: 'Sometimes ya just need a bump, mon.' John starts Wellbutrin. He cries less, yells less, laughs at television commercials again — though he also notes, with some grief, that the medication keeps him in a box, cutting off the highest highs along with the lowest lows. Survival has its own costs.

Then one night, loosened by a few drinks, John admits something he's been ashamed to say aloud: after Susan dies, he wants to go back to school to become a physician's assistant. He frames it as a confession. Susan receives it as a gift. She is, by her own account, thrilled — because a man with a new vocation is a man with a future, and building his future is exactly what she has time left to do. So she starts studying anatomy. Not abstractly — practically. She learns the names of bones and joints so she can direct John to scratch the precise spot on her arm. He is, in effect, practicing on a real patient. She is launching him.

What the losses keep unlocking are capabilities the ordinary, busy, two-handed life had no reason to develop. Before ALS, John was the man who came home to a household already running. Now he is the household — the scheduler, the bather, the one who knows which bra hooks on the loosest notch. And somewhere in all that intimate, exhausting labor, he discovers he wants to spend his life doing medical work. The caregiving didn't diminish him. It revealed him.

The Old Man Who Lost a Son and Is Still a Million Percent Happy

An eighty-two-year-old man with one tooth and a cane sits down in a plastic chair and proceeds to dismantle every excuse Susan Spencer-Wendel has ever made for bitterness. His name is Savas, and he is the last elder of a Greek Cypriot village that has shrunk from hundreds of people to sixty-eight — the youngest of whom is forty-two, recently married, unable to have children. Savas stayed when the Turkish military invaded in 1974. He watched his neighbors leave. He lost a son in the fighting whose body was never found, not dead, not alive, just gone. When Susan asks whether he's glad he stayed, he doesn't hesitate: a million percent happy. No caveat, no performance of acceptance, no visible effort. A million percent.

Fifty years is a long time to choose happiness. He has had plenty of reason not to. You could argue that Susan's philosophy — joy as the actual plan, not the consolation prize — is something a journalist constructs on a good day, a posture held together by willpower and deadline pressure. Savas doesn't give you that exit. He has a missing son to justify bitterness and a vanishing community to confirm that nothing he chose mattered in the end. He is still a million percent happy. The peace is not performed. It's just there.

Panos provides a different kind of proof — not that peace can hold across decades, but that identity can be inherited from someone you never met. When Susan opens a manila envelope in a city park and sees her birth father's photograph for the first time, the recognition is almost forensic. She catalogs the shared features: the deep-set eyes, the thick straight brows that needed professional intervention to prevent a single caterpillar across her forehead, the nose with the slight bulb at the tip that becomes a fat mushroom from any low angle. She had spent her whole childhood unable to find her own face in the people around her. Here it is, finally, in a man who died in 2002 not knowing she existed. Everyone who knew him used the same word: fearless. He would swim out past the point where anyone on shore could see him. He would help anyone, go anywhere, face anything. Susan takes the word and keeps it — not as tribute, but as inheritance. Fearlessness, it turns out, is something you can receive from a father you never met, reconstructed entirely from other people's memories and one photograph in a park.

You Won't Know What You Love Until You Make a List of the Little Things

Joy is a practice of directed attention, and the proof is twenty-three lines on an iPhone, dated March 2012, found in the notes app of a woman who can no longer wear heels because ALS has taken her gait. The list doesn't open with courage or acceptance. It opens with smokin' hot four-inch heels and the specific feeling of wearing them. Then: the dog licking her face, the dryer vent emitting warm soapy air, Chinese potstickers steamed not fried with soy sauce and little green onions, the weight of a dog's heartbeat through the mattress, a head scratch. Brand names appear — a skinny chai latte from Starbucks, cream and sugar in morning coffee — because the list isn't aspirational. It's forensic. It maps exactly what a specific human being loved, at the level of temperature, texture, and flavor profile.

The list's power isn't its sentimentality — it has almost none — but its precision. The entry 'When no one is screaming at home' sits right between the orchids and the white wine, a raw admission that domestic life under a terminal diagnosis is still domestic life. 'Clair de Lune' earns its place only because it connects to her sister; the beauty is irrelevant without the specific memory attached to it. This is what the big adventures — the Yukon, Cyprus, the northern lights — were always pointing toward. The trips weren't the point. The attention was. And the list ends where it begins: not with a lesson, but with an image. A dog's heartbeat through a mattress. Close enough to feel.

The Conversations You Avoid Are the Ones Your Children Are Already Having Without You

The lights go down inside the theater. Susan is sitting beside Marina, her curled fingers finding her daughter's hand in the dark. They are watching Wicked — flying monkeys, green-skinned heroine, the whole spectacle — and Susan has chosen this deliberately, chosen a place where you don't have to talk, where the dark does the work. She hasn't told Marina anything on this trip. No discussions of illness or death, nothing to disturb a girl who found elevator small-talk about pizza genuinely awkward.

Then Marina leans over and starts singing along. Not mouthing words — singing, softly, the farewell duet between the witches: it well may be that we will never meet again in this lifetime. Susan's heart pounds. Marina knows every word. She has been carrying this song around, which means she has been thinking about exactly what neither of them has said aloud.

This is the real climax of the book, and it isn't grand. A fourteen-year-old is singing in a dark theater while her mother quietly wipes her face. When the show ends and Susan asks why Marina was crying, the answer is the simplest thing in the memoir: 'Because you were, Mom.' Not because she'd decoded the lyrics, not because she'd absorbed the full weight of the diagnosis — because she was watching her mother. The daughter has been reading the mother all along. Susan's response is a single private resolution: no more crying in front of her. Which isn't denial. It's protection. The last form of caregiving available to her.

The blue cornflower tattoo Marina wants on her ankle — the international ALS symbol she found herself, without telling anyone she'd been researching — is the same revelation arriving earlier and quieter. Marina rolls her eyes at dictionary definitions but she has been looking up her mother's disease in private. She wants it permanent, under her skin. She already knows.

What Susan discovers across all of this is that the conversation she thought she needed to have was already happening. Her daughter was absorbing it through proximity — through the wheelchair van, the curled fingers, the mother who wept once at Wicked and then decided no more of that. You don't have to name a thing to transmit it. You have to show up, present and awake, for the ordinary evening that turns out to be the one your child remembers. That's the practice the whole book has been describing: not the Yukon or Cyprus, not the grand gesture, but the attention you bring to whatever room you're already in.

The Last Finger, the Last Letter, the Last Word

Somewhere off Captiva Island, eleven-year-old Aubrey is thirty feet in the air, harnessed to a parasail behind a speedboat, looking down at figures on the beach the size of thumbnails. He was terrified at liftoff. Then his cousin adjusted the harness, and he felt it hold, and the terror dissolved into something else entirely — silence, green water shading to blue, the whole coast spread beneath him, one errant flap of fabric beating in the wind. His mother is not watching from the sand. She can no longer walk on loose sand. She is on a balcony above the house, unable to see him, imagining all of it.

Susan had arrived on Captiva with a plan: bury her prized lion's paw shell in the beach, let Aubrey discover it at sunset, give him the same rare thing the children in his favorite novel spent the whole story searching for. A perfect farewell scene, scripted and staged. Then she realized what the shell actually means in the story — that finding one guarantees a lost parent's return. She is not returning. The Hollywood moment she'd constructed was the wrong gift entirely. So she let it go, stayed on her balcony, and watched her son come back from the water flushed and stunned, holding his thumb and forefinger an inch apart to show how small the people on the beach had looked.

You cannot manufacture the moment that matters. You can only be present enough to receive it. What Susan Spencer-Wendel built across the months she had left wasn't a series of grand experiences but a practice of directed attention so precise that even her farewell had a specific address: an iPhone wedged into a useless curled hand, one right thumb moving letter by letter — M-A-R-I-N-A, A-U-B-R-E-Y, W-E-S-L-E-Y — tapping out the names of her children with the last finger that still obeyed her. The book you just read is the result of that tapping. The goodbye was already complete before she stopped breathing. It just needed someone awake enough to notice it was happening.

What the Last Finger Knows

The list on her iPhone — the potstickers, the dryer vent, the dog's heartbeat — wasn't a document of acceptance. It was evidence of someone who had trained herself to notice, specifically and without flinching, what was actually in front of her. Joy is not a reward for surviving hard things. It's a skill, and like most skills, you only develop it through deliberate repetition. That training is available to you right now, today, before anything forces the question. The ordinary Tuesday you're inside at this moment contains more than you're currently registering: the temperature of whatever you're drinking, the particular weight of the room, the face of someone who will not always be there. You don't need a diagnosis to start paying that kind of attention. You just need to decide that what's already here is worth it.