Not every story has a happy ending

David Yon, December 2019

I have never met or followed Marieke Vervoort. But her journey through life raises questions we all want to see answered.

“It is too hard for my body,” Marieke Vervoort told reporters in 2016. A terrible, incurable and degenerative disease was and had long been at war with her mind and body. “Each training I’m suffering because of pain. Every race I train hard. Training and riding and doing competition are medicine for me. I push so hard – to push literally all my fear and everything away,” she said.

She took great solace in the fact she had secured her “papers” in 2008. These “papers” gave her the right and the process for ending her battle with pain and suffering on a day she chose. Amazingly, after getting her  “papers,” Vervoort transformed herself from a so-so marathoner and triathlete into a medal phenom in the sprints winning a gold and silver medal in London (2012), three gold medals in the 2015 World Championships in Doha, Qatar followed by a silver in the 400m and a bronze in the 100m wheelchair race in the 2016 Rio Games.   She also became quite the celebrity in London, and it carried on through Rio.

But with the conclusion of the Rio games in 2016, it became clear that the formula of training hard, riding her wheel chair, and competing for gold medals, no longer produced medicine strong enough to “push her fear and everything away.” There would not be a repeat performance in the Tokyo Paralympics in 2020. And without another goal to drive her training the future became unbearably bleak. There is no doubting Marieke Vervoot’s toughness. Her pilgrimage through the spectrum of pain from tingling feet to pain so intense as to leave her unconscious began at the age of 14 when doctors tentatively diagnosed a rare (less than 200,000 cases diagnosed in US each year) disease known as Reflex Sympathetic Dystrophy (RSD). An incurable degenerative disease.

During her earliest years, before she knew anything about the disease, Vervoort was active in sports. Almost immediately, however, she found these activities caused her severe pain and agony at times.  By the time she turned 14 she was depending on crutches to move around. She was in a wheelchair by the time she turned 20.  The pain continued to get worse. While the name probably did not matter much to her, several sources refer to RSD as an older term used to describe one form of Complex Regional Pain Syndrome (CRPS). Both RSD and CRPS are chronic conditions characterized by severe burning pain, most often affecting one of the extremities (arms, legs, hands, or feet). There are often pathological changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch.

At age 29, she began looking for a way to end her life by suicide. A psychiatrist treating her at the time suggested she speak to Dr. Wim Distelmans, the leading advocate for euthanasia in Belgium. The right to end one’s life with the assistance of a doctor has been legal in Belgium 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. 

Of course, nothing is that simple, certainly not deciding when and how to die. Euthanasia may have been legal in Belgium but there were still many, including Vervoort’s parents, who were generally opposed to it. Nevertheless, after his examination, Dr. Distelmans granted her the preliminary approval to end her life by euthanasia. Doctor and patient agreed however that 2008 was probably not the time to move forward with it.

 

“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 once said. “I don’t want to live that way.”

The pain was still there, even getting worse. But buoyed by the new found feeling of control, she also imagined herself using the pain as fuel for competition. Mentally, she felt free. “Because of those papers,” she said to the public, “I started to live again.”

She jumped into wheelchair sports with a new intensity and became known as the “Beast from Diest” (her home town). In addition to her medals, she checked bungee jumping, sky diving, traveling in a race car and more off her buck list.

Following the Rio Games, however, Vervoort announced her retirement and once again reiterated her support for euthanasia after seeing her physical abilities deteriorate, including the gradual loss of her eyesight.

 

“If I didn’t have those papers, I think I’d have done suicide already. I think there will be fewer suicides when every country has the law of euthanasia. I hope everybody sees that this is not murder, but it makes people live longer,” she told reporters many times.

 

In the summer of 2018, Vervoort decided it was the right time to end her life and decided it was time to use the papers she had received in 2008 (and renewed in 2013). She was 40 years old and, without the peace intense training brought, the bad days not only outnumbered the good days but became a constant presence making life unbearable. The frequency of seizures was increasing. Her need for constant care began to overwhelm all else. A date for Vervoort to be euthanized was selected, allowing enough time to hold a goodbye party.

 

For three days friends and family came to say goodbye. And then it was time. The time of death was recorded as 8:15 p.m. No one will ever know whether it was the right time; certainly, to have succumbed in 2008 would have been premature and Marieke Vervoort’s story would have been on the last page of the paper.  On the other hand, if it was true that the knowledge that she had control of her death was the only way those years could have been possible then that is an important lesson.  

We all want to have a say in when and how we leave this world. Perhaps, Vervoort’s case provides some answers.  Maybe it just raises more questions that cannot be answered. Whatever, it is worth a review to learn what might work for each of us.  While there was a lot written about Vervoort the piece written by New York Times’ reporters Andrew Keh and Lynsey Addario is a good read.  They spent almost three years following the events and producing their story.  

 

 

 

 

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