Teacher Chantal says goodbye – the battery ran out

Body: 

At age eighteen, Chantal Boonacker (42) was declared to be fully unfit to work because of her muscle disease. The UMC teacher and former Paralympian swimmer ignored this. Now, however, the only option left is to quit. Today - Monday  June 17 - she bid farewell to the university.

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“My body can’t keep up with my head anymore. In late February I was, just like when I was eighteen, declared unfit to work by the UWV. Before that, I had times when I worked three times one hour a week. To manage these three hours, I’d sleep twelve to eighteen hours a night sometimes. I managed to delay it for a long time, but now, my battery’s just run out.

“It started with tingling in my fingers. It turned out that I had an inflammation of the nerves in my elbow. An affliction for people older than forty. I was ten. I had surgery, but then had the same thing on my other side. In the meantime, I developed issues with my knees. Despite surgeries, my strength diminished. My muscle strength never returned to a regular level, not even after working out 25 hours a week.”

Aside from loss of strength, my biggest problem is very low energy

“Doctors aren’t quite sure what’s wrong with me. I know that for the past 25 years, I’ve dealt with 24/7 pain, and am constantly physically deteriorating. When I was 18, I received my first hand-controlled wheelchair for longer distances. Now, I’m 42, and I’m in my second electronical wheelchair. For my limited hand and arm functionality, I’ve got electronical arm support. I am, as they call it, care dependant 24 hours a day. I live in a Fokus home (housing adapted to the needs of disabled people ed.), can get assistance immediately whenever I need it. If you were to put me in bed, walk away, and return two weeks later, I’d still be there. Aside from loss of strength, my biggest problem is a very low energy level. There isn’t enough assistance to help that. We’ve used up everything, there are no resources left.

“I did the last two years of high school at a special education school. At my school, in the late ‘90s, it was common practice for everyone to request welfare for disabled people (Wajong). But I didn’t want to look at what I couldn’t do, I wanted to push through. The remedial educationalist at my school said I shouldn’t aim too high. I obediently decided to check out mbo schools, but they turned out to be too practice-oriented and therefore physically impossible for me to do, so I thought: ‘Ha, I’ll show you what I can do!’ I chose biomedical sciences and it took me nine years to finish. In that time, I participated in the Paralympics twice, and once more later on (she won two bronze medals, ed.) By combining swimming and my studies, I learned to plan very well. That constantly helped me in my PhD track and work.”

The UMC was like a warm bath

“If there’s anything my employer did, it’s thinking in possibilities. In 2014, the Lucille Werner Foundation (in Dutch ed.) presented the UMC Utrecht with a star on the Business Walk of Fame at the Zuidas in Amsterdam for this reason. I had nominated the Julius Centre for this. I was no different than others at my work; the only thing that counted was what I was able to do. When I needed a van that turned out to be too high for the parking lot, they got me a different parking spot. And all the seven doors I encountered in my trip to my workplace were made electronical. I also received an adjustable desk at a time when they weren’t very common at all.

“The UMC was already like a warm bath when I did my final internship for biomedical sciences there. I was allowed to stay for a PhD track. Awesome! I worked 20 hours a week, so I could continue training for the Paralympics. In the summer of 2008, I received three months’ leave so I could go to Beijing. We embraced adjustments whenever they were necessary. After a PhD, it makes sense to continue with research, but with my limited hours, I didn’t stand a chance against the full-time employees. I chose education instead. And when teaching in classrooms became more difficult, I started working for the online Master’s programme in Epidemiology. I could do the work from home, in bed; students wouldn’t be able to tell anyway.”

And still I overcompensated

“For a long time, teaching classes went well, even if I dreaded it sometimes. How would students react to my electronical wheelchair? In my day-to-day life, I’ve encountered some blunt people. Someone once asked me what day care I went to. You’re seen as pathetic. But that fear was unjustified. When a student wanted to ask me a question, I thought: here it comes. But the question was: “Is it true that you participated in the Paralympics?” No questions whatsoever about wheelchairs or disabilities. I never once heard anyone say they were annoyed by my disability. As an emergency solution, we once conducted a workgroup meeting via Skype. No problem.

“And yet, I overcompensated. I didn’t want students to be affected by my disability. In group projects, I gave them a lot more feedback than other teachers did, I learned later. And if I had promised feedback on Wednesday evening, they’d get it on Wednesday evening, regardless of how awful I felt that day. If I had ‘normal people illnesses’, like the flu, it was easier for me to cancel things or delay them than when I had issues stemming from my disability. I thought: students cannot be affected by this, because they didn’t choose my disability.”

Now I don’t know where the turn will lead me

“My limited energy took me farther and farther away from my workplace. Student contact became less; I focused on developing education, coordination, and tests. But I still loved it. Aside from those three hours, I had nothing. All I could do was lie in bed. People said: “Why don’t you quit; you’ll have more time for hobbies.” Or: “Do something fun.” But my work IS my hobby. Things disappeared from my life all the time. I used to swim and study. When swimming became impossible, my work was left. So I wanted to keep those three hours as long as I could. The insurance doctor said: “I understand, but do realise that this means you’re taking away the possibility of building another life for yourself.” She was right, of course.

“So I chose a date to say goodbye. I used to babysit my nephew a lot; he’s seven now. I don’t see him nearly as often. Perhaps I’ll have more time for that soon. But quitting work is still hard. There’s still a little voice that says: ‘but now you’re giving up’. As if you’re failing something. I don’t think I’ll lose that feeling anytime soon. The difference with 2008, when I quit professional sports, is I had a plan then. There was no black hole. You’re on a certain track, you make turn, and end up at a different track. Now I don’t know where the turn will lead me.

“How I look back on my career? Words like pride are difficult concepts, because it feels like I’m praising myself too much. I don’t like that much. I emailed my colleagues saying that I hope that when I look back in a year, I’ll be able to say: I made the right decision. I would hate if that turns out to be untrue. I’m far too young for this, but I still have a beautiful career to look back on. Both in sports and my work at the academy. But it shouldn’t have ended yet. On the other hand, if I’d listened to that remedial educationalist at my school in 5 vwo, I would never have gotten further than sitting behind my windowsill. So yeah, I might be a little proud.”

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