Doors open for you in Diest when you're with Marieke Vervoort.
Go
to a restaurant in this pretty Belgian town, and all the diners know
her. They come over to congratulate her on winning two medals at the
2016 Rio Paralympics; she raises a glass to a family celebrating a
birthday.
For a few hours, she's the life and soul of the party.
But,
at 37, the Belgian wheelchair racer suffers such pain she wakes her
neighbours by screaming in the night. As she watches her precious,
fiercely defended independence dwindling,
she has planned her own death.
Euthanasia
is legal in Belgium, and eight years ago Vervoort signed the papers
which will, eventually, allow a doctor to end her life. It's not that
she wants to die. She wants to live. But she wants to live on her terms.
'My mind says yes, but my body cries'
It
is three months since she won silver and bronze at her second
Paralympics and Vervoort is still the toast of Diest, where a large
billboard bearing an image of her face declares the town is "so proud"
of her.
We're greeted at the door of her specially adapted flat
by Zenn, Vervoort's assistance labrador. Nurses come in four times a day
to tend to Vervoort's medical needs, but Zenn gives her mistress an
extra degree of independence, fetching items and helping her dress. She
is, most of all, a mood-enhancer.
"When I'm happy, she's happy," says Vervoort. "When I'm mad, she's
scared, and she goes to sit in another part of the house so she's not
bothering me. When I'm crying, she'll come to lie down with me, lick my
face, hug me.
"When I'm going to have an epileptic attack, she
pushes her head between my knees. She is saying to me, 'Marieke, you
have to lay down. Go to a safe spot because something is going to happen
to you.'"
The walls of her flat are crammed with framed photos
and paintings of her winning moments, while medals, trophies, and
bottles of champagne jostle for space on cupboards and counter tops.
Her
achievements have been hard won. A progressive, incurable spinal
condition, diagnosed when she was 21, ravages her body and no two days
are the same.
"I know how I feel now, but I don't know how I'll
feel after half an hour," she says. "It can be that I feel very, very
bad, I get an epileptic attack, I cry, I scream because of pain. I need a
lot of painkillers, valium, morphine.
"A lot of people ask me
how is it possible that you can have such good results and still be
smiling with all the pain and medication that eats your muscles. For me,
sports, and racing with a wheelchair - it's a kind of medication."
Just
getting to the start line in Rio was an achievement. In 2013, a racing
accident left her shoulder so badly damaged a doctor told her she would
never reach the top again. To that, as to so many setbacks in life, her
response was a defiant hand gesture.
"I turned my bed into a gym - physio, elastic belts," she says.
"I was doing my own physio, my own exercises. After the rehabilitation, I broke three world records."
She went back to her doctor and thanked her for telling her she would not reach the top again.
"You gave me the power to fight back like an animal," she told her doctor. "You make my mind only stronger."
The silver medal in the T52 400m in Rio came after 30 hours of
violent sickness and a day on a rehydrating drip in the Paralympic
village. The bronze in the 100m came after a bladder infection sent her
temperature soaring.
She said they were medals with two sides - happy and sad.
"I
can't imagine a better way to end your career, but also there's a side
of sadness, to say goodbye to the sports that I love," she explains.
"Other
people stop with their sports because they say they don't want to do it
any more. I have to stop because my mind says yes, go further, you
still can do it. But my body cries, says help, stop training, you break
me."
| Marieke's major medals |
|---|
| 2012 Paralympics: Gold (T52 100m) and silver (T52 200m) |
| 2015 World Championships: Gold (T52 100m, 200m and 400m) |
| 2016 Paralympics: Silver (T51/52 400m) and bronze (T51/52 100m) |
'A living hell is not the life that she wants'
To
get a fuller picture of the athlete known as 'The Beast from Diest', we
travel to see her close friend Lieve Bullens, the woman Vervoort calls
her 'Godmother'.
Ask Vervoort's friends and family to describe
her and they will use a variety of adjectives. Determined, independent,
joyful, stubborn. I would add funny, thoughtful and a terrible back-seat
driver.
The constant threat of an epileptic episode and her
deteriorating sight mean she is no longer allowed to drive her car,
emblazoned with her picture, fist punching the air after another race
win. I take the wheel. It's clear my caution is damaging her image as
Belgium's fastest woman on three wheels.
"You are driving like an old woman! Ha ha ha!"
Bullens welcomes us into a house which is part home, part Buddhist
retreat. Large windows overlook the winter garden, drums and
dreamcatchers are suspended from the ceiling. The open cooking range has
been converted into a candle-laden altar. It's the perfect place to
recuperate from the stress of the car journey.
Vervoort met Bullens, a mental coach and therapist, when competing at the 2007 Hawaii Ironman triathlon for para-athletes.
Triathlon
had become her passion when the onset of her disease made her reliant
on a wheelchair. She was para-triathlon world champion twice, but in
2008 her condition deteriorated to such an extent she had to give up the
sport.
It was the lowest point in her life. The pain was
agonising, the loss of independence insupportable. She told her friend
she wanted to kill herself.
"She said 'there's no point in living, no point in going on because it's too hard, it's too bad'," Bullens says.
But
Vervoort's psychologist recommended she speak to Dr Wim Distelmans, a
leading palliative care expert. He suggested an alternative option:
euthanasia.
Euthanasia - in which a doctor intervenes to end a
life - has been legal in Belgium since 2002. It is available only if a
patient has an incurable condition, is in unbearable pain, and is able
to make a rational decision to request it, and even then two doctors
have to agree it is the correct course of action.
In 2015, MPs in
the UK rejected the Assisted Dying Bill, which would have allowed some
terminally ill adults to end their lives with medical supervision.
Bullens was the first person Vervoort told about her decision. She is also the person she wants with her when she dies.
"I
immediately supported her," Bullens says. "She is stubborn. She knows
what she wants. But she also knows what she doesn't want. A living hell
is not the life that she wants.
"I immediately had the feeling it
was something that she could control, and if she had control of her
life, she would live longer. The pain is always there. She doesn't have
to wait for the pain to have an end for her life. She says to the pain -
I decide when to go. Not you."
In the hall of Bullens' house is a
wall upon which friends and guests have written inspirational messages.
But, until now, not Vervoort. She puts that right. It's a painful
process, as her hands are beginning to fail her. Bullens knows it's a
precious moment.
"The woman who's writing it is forever in my
heart," she says. "She's not forever physically. It's a peaceful thought
that she will go in a beautiful way, and not a hard way. In a strong
way."
| What is the law in Belgium? |
|---|
| Belgium, like the Netherlands and Luxembourg, permits euthanasia |
| A patient's suffering must be constant, unbearable and the illness must be serious and incurable |
| Since 2014, a terminally ill child in Belgium may also request euthanasia with parental consent but extra assessment is required |
| An adult does not have to be terminally ill but must be mentally competent |
| A child seeking euthanasia must be terminally ill and mentally competent |
'I'm a real rich girl, even with this miserable, ugly disease'
Jos
and Odette Vervoort are no different to many proud sporting parents,
travelling extensively to support their daughter. They get out a photo
album of memorable moments on Copacabana Beach, Sugarloaf Mountain, and -
the highlight - Vervoort being presented with her silver medal and
getting a hug from Princess Astrid of Belgium.
They've watched
their sporty child grow into a world-beating adult. Like all parents,
they know they need to let their child go. But for them, letting go
means having to support her decision to end her life with euthanasia.
"She's
always been independent," Jos says. "When she came in a wheelchair, she
was frightened she would live all her life as a disabled person with
mum and dad under the same roof.
"You can see her situation, you
are realistic, and you say yes, if she feels better with [the decision
to choose euthanasia], I can live with it.
"In the beginning we knew it was a decision for the future. Now we know the future is coming near.
"It may be a question of months, a question of years. But we see as she becomes more dependent, it becomes more difficult."
Her parents don't know, and she doesn't know, when the moment will come. What is clear is she is not ready for it yet.
She has given up wheelchair racing and taken up indoor sky diving -
the vertical wind tunnel allows her battered body a sense of precious
freedom - with the aim of doing an unassisted dive from a plane.
She
wants to fly in a stunt plane, and bungee jump from a bridge. She
loathes not being able to drive her car, but her friends, family and
Zenn give her much to live for.
"I'm the richest girl in the world," she says.
"I'm a real rich girl, a really lucky person, even with this miserable, ugly disease which I hate."
Is she afraid of dying?
"No,
if you asked me 10 years ago, do you want to do a bungee jump - are you
crazy? I'm not afraid any more. I risk everything, and I love it, to do
all these things, because I'm not afraid to die any more," she says.
"To me, death is peaceful, something that gives me a good feeling."
'I was thinking about how I was going to kill myself'
Vervoort's
fridge is well stocked. Not with food on the day we're there, but with
sparkling wine. She opens a bottle before dinner. It's part of her pain
relief.
We go to eat with her at a restaurant in Diest, where she
is the guest of honour. She recommends the sizzling beef and the shrimp
tagliatelle, both delicious. It's a great night.
The next day we
arrive to do one last interview but find Vervoort curled up on the
couch, exhausted and barely conscious after a pain-racked night.
She called the nurses in the early hours to administer morphine. Zenn keeps close to her mistress' side.
It's
hard to believe this is the irrepressible woman we spent the previous
day with, and a stark reminder of how unpredictable her illness is.
But 40 minutes later, she wants to talk again. We talk about the reason she chose euthanasia over suicide.
"If
I didn't have those papers, I wouldn't have been able to go into the
Paralympics. I was a very depressed person - I was thinking about how I
was going to kill myself," she explains.
"In England, I hope, and
every country, they will look at euthanasia in another way - it's not
murder. I'm the best example. It's thanks to those papers that I'm still
living.
"All those people who get those papers here in Belgium -
they have a good feeling. They don't have to die in pain. They can
choose a moment, and be with the people they want to be with. With
euthanasia you're sure that you will have a soft, beautiful death."
The conversation finishes in gales of laughter when Zenn, sensing the mood, decides to lighten it by passing wind.
Seconds
later, Vervoort's eyes roll backwards. She's having an epileptic fit.
We hit the red button and medical staff are there within a minute. It's
become part of her life.
A couple of hours later she is in
Brussels, giving a motivational speech and saying yes to selfies and
autographs for anyone who wants them.
She is determined not to
waste a second of the life she has remaining. She has planned her
funeral, and it involves a lot of sparkling wine. She also knows what
she wants her eulogy to say.
"I prepared everything. I wrote to
every person who's in my heart. I wrote to every person a letter when I
could still do it with my hands," she says.
"I wrote texts that
they have to read. I want that everybody takes a glass of Cava, [and
toasts me] because she had a really good life. She had a really bad
disease, but thanks to that disease, she was able to do things that
people can only dream about, because I was mentally so strong.
"I want people to remember that Marieke was somebody living day by day and enjoying every little moment."
