Two days after her 27th birthday, a pro team announcement was made this week that Monique Van Der Vorst and all who knew her would have thought completely impossible just two years earlier. Securing a contract with the new Rabobank women’s squad was a twist in the story that nobody could have seen coming back then.
It’s also the latest chapter in a tale which has baffled medical doctors.
“They were totally surprised, because they never thought it would be possible,” she told VeloNation, describing their reaction to her recovery from lower body paralysis. “They were shocked. They still don’t really have an explanation for it.”
Jump back two years, and her life was very different. By then Van Der Vorst had spent over a decade in a wheelchair, having lost the use of her legs in her teens and been given no chance of a recovery. She’d taken up handcycling and carved out a highly successful career, taking two silver medals in the 2008 Paralympic Games in Beijing and winning the overall handcycle category at the 2009 Hawaii Ironman.
Then, remarkably, her time as a paralympic competitor came to an end.
Her path to recovery happened in unusual circumstances, involving an incident with a bike which initially stole away even more of her body’s ability to move. Almost completely paralysed at that point, the turnaround started during her long treatment in hospital.
“One night, I was lying there frustrated because I could only move one hand,” she said. “It was the middle of the night and I started to make a fist to train that hand; then, suddenly, I felt tingling in my feet. I could not imagine what was happening – it was crazy!
“Three months later I started to recover, my upper body started to work better. I trained really, really hard. And then suddenly I could move my leg a little bit to the side, and from then on I trained with everything I could to get more function.”
Her path toward the pro peloton came from that point, and has progressed since. On December sixth she will be one of the riders presented to the media at the Rabobank team presentation in Utrecht. Racing alongside the likes of world number one Marianne Vos in 2012, she will aim to develop into a good pro rider.
As someone with little history in the sport, she admits that she has a lot to learn and there’s plenty of hard work ahead. Still, given what she has been through and bounced back from, it’s clear she has plenty of grit and determination. She’s also got plenty of support, with many fascinated by what is a unusual, inspiring tale.
Van der Vorst spoke to VeloNation this week and talked about her remarkable story, charting her path from full mobility to paralysis and back again. Part I follows; Part II is now available to read here:
VeloNation: Firstly, congratulations on your contract with the Rabobank team. For someone who was previously a paralympic athlete, it’s a remarkable story and something which hasn’t happened before in cycling. What sort of reaction have you got yourself to the news that you are joining the team?
Monique Van der Vorst: I’m just very, very happy that I can make this step in my career. I’m also very happy because while I still have not proved that I will be good in the sport, Rabobank is giving me a chance to develop, to become a good athlete. I think it is one of the best teams to be part of. So I’m very happy.
VN: Has there been a lot of interest in your story from people and the media?
MVDV: Yeah, my phone has been ringing all the time with interview requests from everywhere, including from outside Holland. And I think it’s become big news and it’s great that I got so much support.
VN: Let’s go back fourteen years or so. Can you talk about your background, and when the problems first started arising?
MVDV: Yeah, I was thirteen and I was a normal healthy kid. Then I had problems with walking, so finally the doctors found out that I got a problem with a tendon. So they removed a piece of bone in a surgery and then I could walk fine. But then bigger problems started happening…
I got a disease called dystrophy. That damaged the nerves and I got a lot of pain and fluid in my legs, and a strange reaction to over-use. Then I went to a rehabilitation centre and was trying to learn to walk again. However one of my legs got even more thick [swollen]. It was so thick they wanted to amputate it because it was threatening to my health.
I clearly didn’t want that but it seemed to be the only solution. Fortunately at the same time I started handcycling and because with handcycling you lie down on a recumbent cycle and pedal with your arms, I could get my blood flow up and my heart-rate going. So my body started to recover.
Gradually the fluid went out of my legs. However when that happened my leg was totally dead, paralysed. I could not move it, I could not feel anything….I just couldn’t feel my leg any more. So, they thought the nerve was damaged.
VN: You ended up in a wheelchair as a result of that… it must have been extremely difficult to handle…
MVDV: It was horrible. When I was thirteen all my friends were normal, so thirteen is a hard age when you are suddenly in a wheelchair and you are different. It was not only that fact that I was in the wheelchair, but I also saw cases that were way worse than my situation. So it was generally a very hard time.
After that I went back to school and people were talking about things that are totally different to where I was with my head. It was not easy. I think it took me three years to find other things and to accept my disability.
What helped me then was the sport of handcycling, because with that I felt freedom. Finally I could move myself independently - I couldn’t drive a car then - and it gave me self-esteem. I could see that I was getting stronger and was able to do things. That helped me out of the downwards spiral.
VN: What happened after that?
MVDV: Well, I went into handcycling at fifteen and won basically everything. I qualified for the Paralympic Games in Beijing in 2008. I was training in the US for that and I got hit by a car when I was training. There I got a spinal cord injury, incomplete at C4, and from that moment my both legs were paralysed.
That was just before the Paralympics. I got a lot of damage to my neck, so I had to wear a neck brace in the Olympic Games. I was in a coma and had all kind of problems with my memory, so, it was a really bad accident. But I had one goal and that was to take part in the Paralympics, so I had to put my emotions and everything away to one side to reach that goal. I did that, taking two silver medals there.
VN: How did things progress after that?
MVDM: After the Paralympics I had to recover. In 2009 I felt good again and later that year I did the Ironman in the handcycle category. I won, taking the men’s class, and I am still the only woman who ever finished the Ironman in the handcycle…that is pretty cool.
The start of the recovery:
VN: Regaining the use of your legs may be due to an accident you had. What happened?
MVDM: I was training in Majorca in 2010 for the next season and there on the first training day I got hit by a bike and fell out of my handcycle. I got horrible spasms like electric shock, like when you put a defibrillator on someone’s chest. The doctors in the hospital didn’t know what was going on because my legs were paralysed and they couldn’t find new damage. So they sent me home.
I went to hospital in Holland and it was a horrible time. The spasms were continuing, coming from my lower back. Both legs were going up and down, shaking. There was a lot of pain too. When I put pressure on my back, I had less spasms but when my back relaxed it would spasm again. So when I was lying in bed I got them.
I spent three and a half months in the hospital and I became even more paralysed because I could only use one hand. So, as you can imagine, I was very frustrated by that.
VN: So, after having problems with your legs, your upper body was becoming paralysed as well?
MVDV: Yeah, but they think that was because of exhaustion. I lost a lot of weight because of the spasms, and I couldn’t sleep any more because of them. They thought my body was totally exhausted, and believed that was the cause.
One night, I was lying there frustrated because I could only move one hand. It was the middle of the night and I started to make a fist to train that hand; then suddenly I felt tingling in my feet. I could not imagine it was happening – it was crazy! We did all kinds of testing but there was no function yet.
Three months later I started to recover, my upper body started to work better. I trained really, really hard. And then suddenly I could move my leg a little bit to the side, and from then on I trained with everything I could get more function.
VN: Obviously this case is very unusual…when you started regaining sensation and then movement, what was the reaction of the doctors?
MVDV: They were totally surprised, because they never thought it would be possible. They were shocked. They still don’t really have an explanation for it.
Ever since that day when I got a little bit of movement my doctor really supported me and stimulated me. He arranged rehabilitation and made sure I could train as much I wanted to in the hospital.
VN: Looking back over the years, do they think the paralysis was a spinal issue? Is there a chance that a vertabra was pushing on the spinal nerves, or do they have any theories?
MVDV: There were two injuries. The spinal cord was injured for two and a half years. But my left leg was not paralysed because of my spinal problem, but also because the nerves just below the hip was damaged when I was young.
About the spinal cord injury, they said it was incomplete and so there is always a chance that you could recover from a spinal cord injury. However they said it wasn’t expected in my case because I had been without any movement or sensation in my legs for so long.
They have no explanation why my left leg started to work. Maybe the nerve grew over the years, because nerves can grow. Nobody knows, maybe the spasms brought some kind of shock in my body. I was pretty close to dying, it was like an emergency for my body… We don’t know…
VN: So when were first able to start trying to stand on your legs?
MVDV: That was in July of last year, 2010. I could walk three steps in July, but that was very little. It took me until November to build it up to five or ten minutes walking, and then after November I went out of the rehabilitation centre and I trained a lot. It was basically mostly on the bike because walking gave some problems as my legs were too week. Gradually I built it up.
VN: When you say you were doing something on the bike, was that indoors or was that out on the roads, on a normal bicycle?
MVDV: It was both. I went to the gym a lot, so I trained indoors a lot. But I was also on the roads. I had a bicycle from the Dutch Cycling Union, and when the sun was out I was riding my bike.
VN: Had you ridden a bike before your problems started? When you were young, did you have a bike?
MVDV: Yeah, everybody in Holland has a bike! So I rode one too. When I was twelve, I got a bicycle from my aunt, so I was just starting with my bike when the problems happened…
In Part II of this interview, now online here, Monique Van Der Vorst talks about the psychological effects of this huge change in her life. It’s been largely positive, but there has also been an end to something she loved, as well as some big adjustments to make. She also gives her thoughts about building a new sporting career as a cyclist, joining the Rabobank team, and her expectations and goals.