Marieke Vervoort - the Paralympic champion who chose her time to die

 Marieke Vervoort of Belgium celebrates as she wins gold in the Women’s 100m T52 Final at  the London 2012 Paralympic Games at Olympic Stadium on September 5th, 2012. (Photograph: Gareth Copley/Getty Images

Champagne flutes were hastily unpacked from boxes, filled to their brims and passed around the room. Dozens of people stood around inside Marieke Vervoort’s cramped apartment, unsure of what to say or do. This was a celebration, Vervoort had assured her guests. But it did not feel like one.

Eleven years earlier, Vervoort had obtained the paperwork required to undergo doctor-assisted suicide. Since her teenage years she had been battling a degenerative muscle disease that stole away the use of her legs, stripped her of her independence, and caused her agonizing, unrelenting pain. The paperwork had returned some sense of control. Under Belgian law, she was free to end her life anytime she chose.

But instead, she just went on with it – seized it with new vigour, even. Within a few years she reached uncharted heights in her career as a wheelchair sprinter, winning a gold medal at the Paralympics. She became a celebrity at home and abroad, appearing in the pages of international magazines and newspapers, sitting for interviews on television shows. She travelled the world telling her life story, unspooling it as an inspirational narrative.

Marieke Vervoort wheels through her hometown of Diest, Belgium in the months before her death. Photograph: Lynsey Addario/New York Times
Marieke Vervoort wheels through her hometown of Diest, Belgium in the months before her death. Photograph: Lynsey Addario/New York Times
Being around her during that time sometimes felt like one extended, indefinite goodbye

But she still had that paperwork. And now, after more than a decade of uncertainty and pain and joy, of opening her private life to friends and strangers and reporters, of inspiring others, of vexing them, of wishing for the end of her life and at the same time fearing it, Vervoort had invited her loved ones to her home for the most heart-wrenching of reasons: In three days, she had an appointment to die.

“It’s a strange, strange, strange feeling,” her mother, Odette Pauwels, said as she scanned the party. Vervoort’s guests sipped their drinks and made small talk, struggling to oblige her request for everyone to be happy. There were toasts. There were wails of anguish. There was, also, a faint feeling of uncertainty in the air – an unspoken question of whether this really was the end, a nanoscopic hope that it might not be. Almost three years had passed since two journalists from The New York Times – the photographer Lynsey Addario and I – began spending time with Vervoort to chronicle the end of her life, to observe a top athlete taking control of her destiny in an extraordinary fashion. Being around her during that time sometimes felt like one extended, indefinite goodbye.

She had come close to scheduling her death on multiple occasions, but had always switched course, found a reason to put it off. Something would come up. Conflicts would emerge. There would be another date to look forward to, another reason to live.

Her friends and family had observed this tug of war longer than anyone else, the endless seesawing between her mounting pain and whatever small fulfillments she could experience in however much time she had left. “You’re still hoping something else would happen, that she would change her mind,” said Jan Desaer, one of Vervoort’s best friends. “You know the date, but you’re denying it. You don’t think it’s real.”

This time, Vervoort, 40, seemed resolved. Over the previous week, she had been discussing the procedure with a degree of clarity and seriousness that those who knew her best admitted they did not often see. “I’m looking forward to it,” she said of her death. “Looking forward finally to rest my mind, finally have no pain.” She paused. “Everything I hate will be over.”

The pain

The guests who came to the farewell party in Vervoort’s apartment in Diest, a tranquil town 45 minutes by car east of Brussels, were surrounded by reminders of her achievements: four medals from the Paralympic Games strewn over a beanbag chair; Champagne bottles from earlier celebrations lined up triumphantly atop the refrigerator; shiny trophies standing sentry along a windowsill.

On a wall beside her kitchen table were three framed pictures of her strapped into a sleek racing wheelchair. In the first, her face is snarled in effort. In the second, her biceps bulge as she punches the air with joy. In the third, she smiles broadly with a gold medal in her hand.

The triptych captures the moment when Vervoort catapulted to national fame: the finish of the women’s 100-metre final at the 2012 Paralympics in London, where she dramatically held off a late surge from the defending champion, Michelle Stilwell, to claim the gold medal.

Paralympic athletes rarely enjoy anything close to mainstream renown, but Vervoort captivated Belgian sports fans with her displays of power on the track and charmed them with her unadulterated screams of elation beyond the finish line. Her colourful personality helped, too – as did the presence of her loyal sidekick, a service dog named Zenn.

Marieke Vervoort is helped by her nurse into a tour bus seat while fulfilling her dream of visiting Japan, in Kyoto, April 2017. Photograph: Lynsey Addario/New York Times
Marieke Vervoort is helped by her nurse into a tour bus seat while fulfilling her dream of visiting Japan, in Kyoto, April 2017. Photograph: Lynsey Addario/New York Times
All the while her pain grew, often feeling like a muscle cramp coursing through her entire body

Soon, those fans learned of the melancholic story behind her competitive success, and of the debilitating hardships that lay ahead. What had begun for Vervoort as a happy childhood – loving parents, a younger sister, long days playing sports on a dead-end street – had grown complicated by her teen years, when the pain that plagued her for the rest of her life first appeared. It emerged initially as a tingling in her feet. The tingling over the years turned to pain, smouldering up her legs, sapping their strength. She spent her teens on crutches. At 20, she was in a wheelchair.

Doctors were bewildered. They attached labels to her worsening condition – reflex sympathetic dystrophy, progressive tetraplegia – and noticed a deformity between her fifth and sixth cervical vertebrae. But they could never fully understand why the pain had started, or why her eyesight was failing, or why she was having intermittent seizures. All the while her pain grew, often feeling like a muscle cramp coursing through her entire body.

With her childhood dreams of becoming a teacher derailed by her precarious health and the uncertainty that accompanied it, Vervoort, by her 20s, had come to find some meaning in sports: wheelchair basketball, scuba diving, triathlons. But the constant pain and fear eventually plunged her into deep depression. At age 29, she determined her disease was too heavy a burden to bear. She began hoarding pills at home. That was how she would end things, she thought.

As a last resort, a psychiatrist suggested she speak to Dr Wim Distelmans, the leading advocate for doctor-assisted suicide in Belgium. The right to end one’s life with the assistance of a doctor has been legal in the country since 2002, available to patients who exhibit a “hopeless” medical condition with “unbearable” suffering, including mental illnesses or cognitive disorders. No country has more liberal laws for doctor-assisted death than Belgium, a country of 11 million people, where 2,357 patients underwent euthanasia in 2018.

Until then, Vervoort said, the prospect had never crossed her mind. On her best days, she still had an almost childlike embrace of life, an impish sense of humour and visions beyond a fledgling athletic career. People were drawn to her, to her jokes, to her easy, squealing laughter. She was the mischievous ringleader of a large, loose association of friends she christened the Dafalgan Club, named after a brand of dissolvable painkiller. But their preferred fizzy medicine, they said, was Champagne.

Marieke Vervoort, whose long-planned euthanasia was ultimately still more than a year away, weeps to read a farewell letter from a friend during a hospitalization in Diest, Belgium, January 2018. Photograph: Lynsey Addario/New York Times
Marieke Vervoort, whose long-planned euthanasia was ultimately still more than a year away, weeps to read a farewell letter from a friend during a hospitalization in Diest, Belgium, January 2018. Photograph: Lynsey Addario/New York Times
I just wanted to have the paper in my hands for when the time comes that it’s too much for me

And even as the choice to undergo physician-assisted suicide had become more common in Belgium, there were still many, including Vervoort’s parents, who were philosophically uncomfortable with it. But she kept the appointment with Distelmans, and he, after a close examination, granted her the preliminary approval to end her life. He added, though, that she did not quite seem ready to follow through with it. She agreed. “I just wanted to have the paper in my hands for when the time comes that it’s too much for me, when, day and night, someone has to take care of me, when I have too much pain,” she said in one of a series of conversations we had over three years of reporting. “I don’t want to live that way.”

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Taking Control

In Vervoort’s telling, the papers allowed her to wrest back some control of her life. She no longer feared death because she could hold it in her hands at any time. Newly empowered, she said she found herself approaching sports with a different level of focus. She reoriented her nascent wheelchair racing career from triathlons and marathons toward sprinting. She thrived.

The pain was still there, deepening. But she also imagined herself using it as fuel for competition. Her days were no longer consumed with dark thoughts of how her life would end. Mentally, she felt free. “Because of those papers,” she said, “I started to live again.” Unencumbered by old anxieties, she produced an extended run of excellence in her small corner of wheelchair sports. She became known as the Beast from Diest.

Along with the gold medal she won at the 2012 Paralympics in London, she took home a silver in the 200-metre event. After that came three gold medals at the 2015 world championships in Doha, Qatar, and then two more medals – a silver in the 400 and a bronze in the 100 – at the 2016 Paralympics in Rio de Janeiro.

Marieke Vervoort finishes a glass of cava alongside her euthanasia doctor, Wim Distelmans, her close friend Lieve Bullens, and family on her final evening, October 22nd, 2019, in Diest, Belgium. Photograph: Lynsey Addario/New York Times
Marieke Vervoort finishes a glass of cava alongside her euthanasia doctor, Wim Distelmans, her close friend Lieve Bullens, and family on her final evening, October 22nd, 2019, in Diest, Belgium. Photograph: Lynsey Addario/New York Times
It was a stunning sight: a world-class athlete sitting before a room of journalists, serving as an advocate for euthanasia

The victories changed her life. Suddenly in the spotlight, she blossomed. A year after the London games, she was named a Grand Officer of the Order of the Crown by King Philippe, one of Belgium’s highest honours. She gave motivational speeches to corporate audiences and picked up sponsors. One of them delivered meals to her home. Another gave her a car with her picture on the side. She went on shopping sprees at the Belgian headquarters of Nike.

It was under more inelegant circumstances, however, that she reached her highest point of fame. During the Rio Paralympics in 2016, her life story became distorted and sensationalised through a sort of morbid game of telephone. A newspaper in Belgium had reported that she was considering physician-assisted suicide. The report was picked up by other news outlets, first at home, then abroad, and incrementally simplified and sensationalised. Her decision to undergo doctor-assisted suicide was not only possible, but imminent, the story went, until those watching her in Brazil were convinced that they were observing the final days of her life. ‘‘I’ll go for gold, then kill myself,’ says Paralympian hopeful,” one British tabloid headline blared during the games, manufacturing something Vervoort had never said.

Embarrassed, she decided to correct the assumptions at a news conference. No, she said, she was not planning to kill herself immediately after the competition. But, she added, it was true that she would do it one day, and that knowledge was helping push her through her pain and depression. More countries should allow doctor-assisted suicide, she said.

It was a stunning sight: a world-class athlete sitting before a room of journalists, charismatically serving as an advocate for euthanasia. Her vivid accounting of her life and worldview – not to mention her quick humour while surrounded by microphones and bathed in the television cameras’ bright lights – immediately inspired a new round of international news media coverage. “I don’t want to suffer when I’m dying,” she told the reporters that day between smiles. “I want to go in a peaceful mood, in a peaceful way, with the people around me that I want, the people that I really love.”

I first contacted Vervoort in the fall of 2016, a few months after she returned to Belgium from Rio, and only a few weeks after I moved to Berlin as the New York Times’ European sports correspondent. An email turned into a phone call, which quickly turned into a trip to see her in Diest. She was eager to share her story. Over the ensuing three years, she allowed Addario, our photographer, and me to document the final chapter of her life.

We visited Vervoort at her home and in the hospital, followed her on errands around town and on trips overseas. She opened hidden corners of her life to us, revealed vulnerabilities that even those closest to her never saw. We had countless calls on the phone and over FaceTime, shared meals and traded jokes. We helped push her wheelchair when needed. Many, many times, we watched her cry.

It was an undulating process, intellectually and emotionally. Her parents and close friends told us that seeing her in pain forced them to confront their feelings about her decision, and I was forced to probe my own. At times I wondered – as others did – about her real intentions. She declined to let us view her medical records or speak with her doctors to learn more about her condition. Other times, even as we were committing time and effort to documenting her final days, I found myself hoping she would pull back from the brink.

She asked me more than once when she might see our finished article. I needed more than one attempt to explain, awkwardly, that we hoped to follow her through the end of her life – that, ultimately, she would never read what I would write about her life, never see all the photographs Addario was taking of her.

Eventually, as she told us on many occasions, she came to trust us. She made clear over time that she wanted people to see the full picture of her life, the pain and sadness and toil hidden behind the inspirational images and motivational talks, the profound loneliness beneath the jokes and laughter.

While accompanying Vervoort on a bucket-list trip to Japan in the spring of 2017, I watched her simmer with anger and embarrassment one afternoon after being forced to crawl along the floor of a crowded tour bus that was not equipped for wheelchairs, so many sets of eyes watching her. That night, she left a group dinner 15 minutes early so that she could board the bus before anyone else.

A year later, on another night that lingers in my memory, I sat in her apartment as she lit two dozen candles and brought out packs of pre-made sandwiches, which we washed down with cans of soda. Vervoort had hosted a parade of visitors throughout the afternoon – a local journalist, nurses, her parents – and now, nearly alone, she was trying to soothe herself. We sat on her couch and talked about her past relationships: how she began dating women when she was 30, how those relationships had fallen apart, and her belief that, perhaps, she was happier without a companion.

“I’m alone,” she said, matter-of-factly, “but I like it.”

Descent

The Rio Games brought her a new rush of attention, and it was obvious she enjoyed it. She welcomed every interview, every television and radio appearance. She became an object of fascination in the Belgian tabloid press and was trailed by a documentary film-maker. She posted minute details about her life on a Facebook page followed by tens of thousands of people and talked openly about her desire to have a museum built to memorialise her life.

The mesmerising spectre of mortality hung over everything, creating a tension that could not be ignored. Her celebrity came with a dark twist: the prospect of her dying brought her more renown than she ever imagined, and yet it would, in time, bring everything to an end. Many athletes endorse shoes or soft drinks; here was a gold medallist effectively endorsing doctor-assisted suicide.

If the Rio Paralympics were a launching pad for her fame, their aftermath, her official retirement, would symbolise a turn toward the dark and inevitable. The pain intensified. She had long travelled with a rattling green toolbox of pills, but by mid-2017 she was openly addicted to morphine, taking several doses daily. Her days, once filled with training and appearances, became a blur of hospital stays, pain treatments and drug-induced naps.

“This is a difficult period for her,” her father, Jos, said in late 2017. “Last year, she had sports. Now, most of the time, when we see her at her house, she’s laying down on the couch, sleeping.” By the time she returned from her trip to Japan – which had been paid for by a radio station that had been tracking her story – Vervoort was relying heavily on a circle of friends who were beginning to function more like caretakers. “It was always bad; now, it’s very, very bad,” said Patricia Doms, one of several friends who drove Vervoort around town after she grew too weak to do it herself. “It’s hard to see as her friend.”

Those closest to Vervoort could see her eyes sag under the weight of the drugs she took to ease her pain. They heard her speech slur, filled in the gaps when she would forget entire conversations, sat patiently when she nodded off mid-sentence.

Her parents cried at seeing her suffer. But they also lived in fear of receiving a telephone call that something had happened to her, or that she had made concrete plans, at last, to undergo the procedure. Their stance on physician-assisted suicide became more complicated as their daughter inched toward it.

“We don’t support it,” Jos Vervoort said, “but we understand it.” They were among those who held out hope that she would change her mind. Some days, their daughter was her bright old self. She tried picking up new hobbies. She spent time with friends, peppering them with sophomoric jokes, filling the spaces around her with laughter.

Marieke Vervoort embraces her parents, Odette Pauwels and Jos Vervoort, before her euthanasia, at her home in Diest, Belgium, October 22nd, 2019. Photograph: Lynsey Addario/New York Times
Marieke Vervoort embraces her parents, Odette Pauwels and Jos Vervoort, before her euthanasia, at her home in Diest, Belgium, October 22nd, 2019. Photograph: Lynsey Addario/New York Times
Her doctors were struggling to co-ordinate a date, and she was convinced that they were finding reasons to stal

But increasingly the fundamental demands of daily life were provoking in her an obscure weariness. She fell unconscious at a child’s birthday party in late 2017 and left feeling helpless and embarrassed. She sneered at people who accused her – often in the online comment sections of news reports about her – of exaggerating her pain or faking it for publicity. She found herself lacking the strength to respond to friends’ messages.

The Paralympic champion was withering in plain sight. “I really try to enjoy the little things,” she said. “But the little things are getting so little.”

Picking a day to die, though, proved difficult. Beyond the grand, existential questions, there were more banal conflicts such as birthdays or unexpected family illnesses that regularly popped up to complicate the scheduling. Her paperwork lapsed – it legally expires every five years – and she was forced to renew it.

“I want to die,” she told me once in the summer of 2018. “I pray to die. But it’s so hard to say, ‘This is the day I want to go.’ Choosing a day is already dying a little bit.” She wrote dozens of goodbye letters to friends and family members. She planned her funeral. She said she did not believe there was an afterlife, but confessed she wished she could view the ceremony from above.

By this fall, it became clear she was growing impatient. Her doctors were struggling to co-ordinate a date, and she was convinced that they were finding reasons to stall. “When they tell me the day,” she said,” I will be the happiest person on earth.”

The End

Vervoort convened her so-called goodbye party at her apartment on short notice for a Saturday in October. Barring a last-minute postponement, she was scheduled to die the following Tuesday. The night of the party, with dozens of people in her home, Vervoort barely moved. She wore a loose orange sweatshirt, and her hair – short, spiky and bleached blond at the height of her athletic career – was matted to her head in her natural muted brown. She stationed her wheelchair outside her bedroom, and one by one her guests crouched down to meet her eyes and squeeze her head, whisper into her ear. After the party, she asked to be returned to the hospital; the unending stream of visitors and roiling waves of emotion had become too much.

Three days later, on the Tuesday, her parents drove her home, this time to die. She asked that they swing by the pet store so she could buy treats and stuffed animals for Zenn and a second service dog, Mazzel. They were set to be adopted by friends of hers. They stopped at the pharmacy to pick up the euthanasia drugs, which by law the family must purchase itself.

Back at her apartment, another small group of people gathered to say their goodbyes, but Vervoort seemed only partly aware of their presence. She sought out and held her nephew, Zappa, her sister’s first child, who was less than a month old. She had scheduled her death for after his birth, so that she could meet him. Then she climbed out of her wheelchair, lay on her couch and fell asleep.

When the doctor, Distelmans, arrived two hours later, most of the guests were gone. Vervoort was sipping cava and munching on Maltesers chocolates, a guilty pleasure. She offered him one. Distelmans and another doctor wheeled Vervoort into her bedroom, where pictures of her in her racing days had been taped to the door, and helped her into bed. She spent a final moment with her parents, her godmother and two of her best friends.

“Are you sure you want to continue?” one of the doctors said. “Yes, I want to continue,” she said. The time of death was recorded as 8:15 p.m. The doctor touched a stethoscope to her skin. The family called the undertaker. The next morning, Jos Vervoort awoke to find he was still talking to his daughter. “Where are you now, Marieke?” he said. Slowly he forced himself out of bed. He eventually ventured into town. It was cool and sunny. He stopped himself at a newsstand. His daughter’s face beamed from the front pages of half a dozen Belgian newspapers, her name in the headlines one final time.

Jos Vervoort bought a copy of each one, went home and laid them out carefully on the family’s kitchen table.

– New York Times