Then it was March 2006 and from one day to the other, I couldn’t walk anymore. I got crutches and went to the local doctor. In May 2006 I was officially diagnosed in a hospital with CRPS in my left foot and lower leg. A really painful disease. Always a really cold leg/foot that’s always discolored purple/blue. The slightest touch (even from a little breeze or water) is really painful.
I can’t wear shoes, socks or anything. Only a soft pantalon for protection.
In 2007 they sent me to a rehabilitation centre to train on trying to touch it and walk a little. Later it became harder and in a week of time, my foot turned to the inside, toes crooked, constant cramps and couldn’t move my foot.
Next diagnose: Dystonia.
When I have an attack of cramps it is really sharp, I get spasms and it can last for hours. But I now have medicine and the attack only lasts about 30 minutes.

I take 22 pills a day, and still have a constant score of 8 on a pain scale of 10. I stayed in treatment until august 2008, then I stopped because they couldn’t do anything for me anymore. I ended up in a wheelchair.

In 2009 I was admitted twice to the hospital and I got Ketamine. It can reduce the pain of CRPS, but it didn’t work for me. In 2010 I tried injections of Magnesium for the dystonia. It did help a little, but it’s still a study, so I can’t continue to use it for now. At the end of May 2010 I got cramps in my other leg/foot too. At first I could let go of it when I tried. But in 3 days time, it stayed and I couldn’t move it anymore, just like my left foot.

So here I am, 2 dysfunctional legs.

I can’t twirl any more like I want to. The first year I was depressed. At first (with only one diseased leg) I continued to twirl a little, standing on one foot and leaning on 1 crutch. But as you can imagine, that didn’t work at all.

When I got that wheelchair, in 2008 I saw a beautiful opportunity! I didn’t have to balance anymore on one foot to twirl; I could just do it in my wheelchair!
I began to practice some things. Of course I can’t do every thing. But I can do a lot of rolls, contact material and even a spin!
I am really glad with my supportive twirl team! They accept me! Those people are so important to me! They help me and support me! They are just like family! On Thursday evenings I teach kids how to twirl and if I have energy enough afterwards I twirl a little bit myself. Those Thursdays and competition days are the most exciting moments!

Last year our team organized an international competition. At the end of the 2nd day, they surprised me! They thanked me (in front of all the twirlers and public) for the things I do for our team with a check of €100, for the foundation of CRPS. So sweet they did that!

I’m now waiting for my sports wheelchair! It will be a lot better. In theory I even can do a 2 spin! That chair turns a lot faster!
When I became sick I was heartbroken, I couldn’t do the one thing I wanted to do anymore, twirling! Through time I began to look in a more positive way. Looking for what I can do, instead of what I can’t. I think that’s the most important lesson learned.

Everybody has dreams, sometimes they get destroyed, but that doesn’t always have to mean you can’t do it anymore. Always keep on looking if you can adjust your dreams or replace them by better ones!

I am really glad I didn’t lose friends when I got sick. You hear so many sick people who have lost friends due to their diseases. So I think I’m really lucky. I even met some people who I wouldn’t have met if I didn’t get sick; important people in my life. I’m so grateful I have a really supportive and loving family and great friends.

I don’t know if I will ever cure. In theory, I could maybe be walking and twirling in 2 years time. It’s also possible these diseases stay for the rest of my life; but I’m sure that will never happen. There are so many studies for this disease. They keep on inventing things.

You have to be positive! You can be sad and grumbling, but that will not cure you! Being happy would not either, but it makes life a lot more beautiful and fun!

That is exactly what I’m doing at this time in my life. Although the pain takes all my energy away, just relaxing with friends, shopping or something, everyone likes that, but I enjoy it just a little more, because I’m so glad I’m still able to do that. I think, even though I’m sick, I’m really blessed with this life.

Sometimes it’s hard, like the situation with my closest friend of 12 years. We twirled in the same team for years.
She went to another team where she could reach a higher level. In that time I got more difficulties with training because of the pain, so I had to take steps back. My dreams and plans were: Going international, being on the national team and dance education. While I had to take more and more steps back, she got better and better. She has achieved those 3 things now. Sometimes it’s so hard, because it’s everything I wanted. Because we are so close and care deeply for each other, I’m extra proud of her. At least one of us has achieved these things! This is one of the examples of what I still struggle with. This, and watching people twirl; that makes me want that too! I can’t stay sad though because it’s so beautiful to watch!!

Here’s a video of what it is like to live with CRPS. Even though I think you know what it is like to have constantly a lot of pain.
Personally I think it’s set up dramatic. But all of it is true. They say it can feel like a limb is on fire. But there are 2 different types. One ‘hot’ type and one ‘cold’ type and I have the last one.

Enough of me. I just wanted to say how much I admire you. You are so strong. And I am sure you can do a lot of things again. “Don’t give up your dreams, only replace them by better ones (or do them different)!”
Everything you did in your past has already touched lives (and most important, touched hearts too) and you really make a difference.
I don’t know how your situation is exactly at this moment. If you will ever be able to continue circus or twirling again. But even after the accident, you still touch lives. Every twirler I know here in Holland knows you and looks up to you! You inspire me (and others)! And even if you can’t continue circus or twirling, you will always be touching people’s lives. Because you are an artist, but I think mostly because of your strength and belief.