LOGINIt's my third year living with ALS, and my 11th day since losing the ability to speak completely. My wife, Renee Sutton, bursts into my hospital room with a lawyer and a notary in tow, gripping a so-called expert report that concludes all of my symptoms can be faked. She throws it onto my bed. "Miles, you're really a hell of an actor," she says. "You had me fooled for three years. Today, you're finally going to tell the truth." I look at her and open my mouth, but no sound comes out. She shoves a divorce agreement in front of me. "Sign it. Admit you faked your illness to swindle marital assets. You're not walking away with a single cent." I look down at the pen, then at my right hand lying motionless on the sheet. Her eyes hold nothing but a cold sneer. "Still faking? Fine. Keep faking. "Back then, you told me you didn't love me anymore, and I believed you. You said you wanted to marry that older woman, and I believed that too. "Now you've circled back and landed flat on your back, needing someone to take care of you. Did you really think I'd go soft on you again?" A nurse rushes in from the hallway and forces a writing board into my stiff left hand. "Ms. Sutton, he had a tracheotomy just yesterday! This board is the only way he can speak!" Renee stares at the board. Her expression slowly shifts as she lowers her head to look. Scrawled across it, in two shaky words, is my answer. I pour the last of my strength into every stroke. "I'm sorry."
View MoreSix months later, in winter, inside the ICU of City General Hospital, the numbers on the heart monitor began to fall off a cliff. Oxygen saturation dropped below 60%, and the ventilator let out one high, piercing alarm after another.Dr. Marsh stood at the bedside, watching every reading lose all meaning for resuscitation. She checked the time."Call it," she said.A nurse stepped forward and switched off the ventilator and the monitor. The alarms stopped, and the only sound left in the room was the faint hum of the equipment's cooling fans.Amelia stood at the bedside in a sterile gown. She picked up a damp cloth and slowly wiped my face, smoothed down my hair, and then drew the white sheet up over my head.Outside the room, Renee stood in front of the glass window. Over the past six months, she'd stepped down as CEO of Sutton Group, sold off all three of her properties and every share of her private stock, and put the money into the national ALS research foundation.Julian's se
Renee reached for the tablet on the desk. Her fingers brushed the metal casing with a sharp clink, but her grip failed, and it slid across the surface.She stood without picking the foreign medical papers back up and walked out of the office. She headed for the stairwell, skipping the elevator, and climbed the fire stairs one floor at a time until she reached the ninth floor. She stopped outside the ICU, in front of the glass window.Inside, I lay on the bed. A thick tube ran from the opening at my throat to a ventilator standing half my height beside the bed.A feeding tube ran through my nose, and an IV pump pushed yellow nutrient fluid in a steady rhythm. Months of lying still had wasted my limbs down to almost nothing, the bones visible beneath the skin. My hospital gown hung loose over deep hollows where muscle used to be. An eye-tracking screen was mounted directly above the bed.The ICU door opened, and Renee stepped in wearing a blue sterile gown, a mask, and shoe covers.
Renee walked out through the doors of the holding facility. Sunlight spread across the pavement outside. She made her way to a green trash bin at the curb and doubled over as her stomach seized violently. She leaned over the bin and was sick in the liner.She threw up three times until nothing was left in her stomach but yellow bile. She pulled a handkerchief from her jacket pocket, wiped the corner of her mouth, and dropped it into the bin.Then, she got into her car, started the engine, and drove toward the hospital.Renee returned to City General Hospital, but instead of going up to the ICU on the ninth floor, she went straight to the neurology office on the eighth. Dr. Marsh was reviewing an EEG report. Renee pulled out a chair and sat down across the desk from her."Dr. Marsh, there's an experimental ALS drug currently in Phase 3 trials overseas. I've already arranged a medical charter flight and a team of specialists from overseas. I'll cover every cost." Renee pulled out s
Renee's fingers tightened around the papers, and they crumpled slightly with a soft, folding sound.The ICU's automatic doors slid open, and Dr. Marsh stepped out, pulling off her mask."His blood pressure's stabilized, barely," she said, looking at Amelia. "But the fall caused a second injury to his cervical spine, and it's irreversible."He's lost his ability to swallow and to breathe on his own completely. From here on, he'll need a feeding tube to eat and a ventilator just to keep his vitals going."Renee walked toward her. "Dr. Marsh, I want to transfer him overseas, somewhere with the best equipment available."She pulled out her phone.Dr. Marsh blocked the doorway. "Ms. Sutton, his condition right now can't survive any kind of transport. And according to the authorization document Mr. Bennett signed three days ago using an eye-tracking device, all medical decisions are now entirely in Ms. Bennett's hands. You don't have visitation rights."…At the city police departmen
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