Chapter 1 #2
A year before, Sabrina and Malcolm had gone to Paris to celebrate New Year’s when their children left after Christmas with their own plans.
They always stayed at the Ritz in Paris, and had a favorite suite that felt like home to them.
There were adjacent rooms for the children when they went as a family, which they did in the summer when they spent a week together at their favorite hotel in the south of France.
The children never missed it. But the New Year’s trip to Paris was a romantic tryst for Malcolm and Sabrina.
Sabrina was startled when Malcolm tripped and twisted his ankle on the front steps of the Ritz.
He was very athletic, played a lot of tennis, and had never done that before.
He dropped a thermos of coffee at breakfast a few days later, when helping himself to a second cup, and a bottle of champagne when pouring a glass for each of them on New Year’s Day.
She had an uneasy feeling about it. There were no other mishaps on the trip, but he fell at the Bel Air house one afternoon at the pool.
She nagged him to go to the doctor after that, and he brushed it off.
It was a busy time in the office, and he felt fine.
It took two more minor incidents in February, when she noticed he had difficulty holding a pen when he was signing something, and his speech seemed slurred one morning, which worried him too.
He finally saw the doctor and had a battery of tests.
Sabrina worried that he might be having small strokes, which could account for his falling, and his loosening grip and dropping things.
He was only fifty-three years old, and they were two years away from his retirement plan.
But he had a high-pressure job and it took a toll.
Malcolm’s doctor was thorough, ordering more exams and MRIs, and sending him to a series of specialists.
He had electrodiagnostic tests, including electromyography and a study of nerve conduction velocity, extensive blood studies, hormones, thyroid and parathyroid studies, X-rays, another MRI, a spinal tap, a myelogram, a nerve biopsy, and a neurological exam.
The doctors left no stone unturned. Neither Malcolm nor Sabrina was prepared for the diagnosis that resulted from the extensive tests.
Malcolm’s primary physician delivered the news as gently as he could.
Malcolm had amyotrophic lateral sclerosis, more commonly known as ALS, or Lou Gehrig’s disease.
Neither Malcolm nor Sabrina admitted it to each other, but they recognized it was a death sentence, with an agonizing descent into hell ahead.
They had no idea how or why he had gotten it, and there was no cure.
It was a degenerative disease which would affect his motor skills.
Eventually his nerve cells would be destroyed, and he would no longer be able to speak, swallow, or breathe.
The end would come on a ventilator, with his mind still intact.
The average length of survival was three years.
Dr. Farber said that some people lived for five or ten years with ALS, and a rare five percent lived for twenty, which was something to hope for.
And Malcolm might have periods of “arrests” or “reversals” when the disease would stop advancing, or improve for a year or longer, which happened in one percent of cases.
The odds were not in Malcolm’s favor, even applying his theory that good things happened to good people, which he certainly was.
But for the first time he and Sabrina had to face the fact that bad things happened too.
Even very bad things sometimes, and this was one.
They were both in shock when they got the diagnosis.
Sabrina drove them home. Malcolm no longer felt comfortable driving, and as soon as they got home they both burst into sobs and clung to each other.
It was the worst nightmare either of them could imagine, and his motor skills were already affected.
There was no way of telling how long he would live, and in what condition, whether or not he would have an arrest or reversal, or how fast the disease would move, or if he would be one of the lucky one or five percent who could live ten or twenty years.
In twenty years, he’d be seventy-three, still too young to die.
Malcolm went back to work the day after the diagnosis, and Sabrina spent the day at home crying. Nothing worse could have happened, except if he had died suddenly. But he was facing an agonizing end. He was very brave about it, and more worried about Sabrina than himself.
The disease was merciless, and its advance relentless.
By the end of February, he could no longer walk, was in a wheelchair, and had lost the use of his hands.
He had explained the situation confidentially to the chairman of the network, who was heartbroken for him.
The diagnosis and prognosis were so cruel.
Malcolm said that he would be retiring imminently, and made strong suggestions for his successor. The governing board was devastated.
Malcolm and Sabrina asked the children to come home for the weekend, and told them the news.
They were as shocked and heartbroken as their parents, and they tried to be positive that he would be one of the lucky ones.
But Malcolm’s luck had run out, after a perfect record until then.
It was a tearful weekend with the children, who tried valiantly to be brave for their parents’ sake, and gave vent to their worst fears when the three of them were alone late at night.
Malcolm gave his resignation to the network at the beginning of March.
His speech was difficult to understand, and failed entirely within a month.
He used a computer he could manage, and then an iPad, to communicate with Sabrina and his doctors.
The disease advanced at a galloping rate.
Sabrina was with him every instant. She hired nurses in April to help move him, but she cared for him herself with infinite love and tenderness.
He could still breathe and was spared the ventilator until his final days.
The children came home in May and spent the last three weeks with their father.
They were all with him, quietly around his bed, touching him, as he looked at them gratefully and with regret, and died in Sabrina’s arms in June.
The end had not been painful but it was infinitely sad, and the hardest thing any of them had ever lived through, and the most agonizingly adult experience his children would ever have to face.
One of the last things Malcolm had written to Sabrina on the iPad was that he wanted her to buy an apartment or a house in Paris.
It was the last thing on her mind in his final hours.
Coco had seen what he wrote, and smiled.
Their father had been a remarkable man—even at death’s door, he thought of everyone but himself.
The network offered whatever help they could, but there was nothing they could do.
Sabrina’s gallery manager helped her make the funeral arrangements, and her children did what they could to support their mother and each other.
She was dignified and strong for them. They left after the funeral, brokenhearted, but Lizzie and Justin had to go back to school, and Coco had to get back to work in Milan.
Their schools and Prada had been compassionate about their being absent for their father’s final days, but they couldn’t extend it any longer.
Sabrina had to manage on her own after they left.
She felt paralyzed with grief and could barely get out of bed.
Malcolm had lived four months after the diagnosis and degenerated at lightning speed.
It was a mercy for him but intolerably painful for her.
She couldn’t imagine her life without him.
She hadn’t been to the gallery in two months, and had no desire to go there at all.
Hallie, the gallery manager, took care of everything, and came by the house to check on her.
She could tell that Sabrina wasn’t eating.
She had lost a shocking amount of weight by July, and the family canceled their summer trip to the south of France.
No one was in the mood for it. The children came home for a week in August, and it was a very dark time.
They were all worried about their mother when they left, but they couldn’t stay.
They had lives and obligations in other cities.
Sabrina tried to put a good face on it, but the truth was easily visible in how thin she was.