‘I am a chronically ill mother. When you see me, when you talk to me, you don’t notice me. But yes, you almost always see me in a scooter. It gets completely confusing when I get up from there. Then it turns out that I can just walk, and not even with difficulty, or shuffling – no, just, walking.
“If you see people with disabilities in the media, then there is usually clearly something wrong with them. You see that they are mentally or physically different from – say – ordinary people. I am such an ordinary person, and then again I am not, and yet I am!
“Standing and walking quickly tire me to death. I also have constant pain. I am only 42 years old; or already 42 years – what are you saying, at this age? Since 23 years I live with very little energy. It started after the birth of my first child. I was tired, dead tired. At first you think: oh well, hormones confused due to pregnancy and childbirth, broken nights – it will pass… But it did not pass.
“After a year I ended up in a medical merry-go-round. ‘Really, we can’t find anything.’ Only in the last five years has there been a diagnosis: orthostatic intolerance. This is often accompanied by chronic pain and fatigue.
“The contradiction is: I am limited in my options and at the same time I have to do my best to participate in this society. At parties, people walk together happily. I always sit. So I often sit all alone, looking at the backs of people talking. If I go to a festival, I know that I have to be there well in advance; otherwise I can’t get through with my scooter. And sure enough, just before a performance starts, people stand in front of my sniffer. Am I the asshole again asking if they want to step aside.
“Always that struggle. Always on the defensive, showing that I’m there too.
“In the meantime, I am also just a mother. My youngest children are 11 and 14 years old. When we moved to a new neighborhood I consciously registered for the parents’ council. That immediately gave me a reason to participate and talk. At their previous school, conversations with parents in the schoolyard often literally crossed my mind. I looked up from my scooter, I was often only involved in a conversation when I said something myself. There was probably no evil intent, apparently that’s how it goes when you’re in something like a wheelchair.
‘Fortunately, I am mentally quite strong. I keep going, I’m not giving up. We simply go to the Efteling, to a museum, to the forest, even if it costs so much extra time and effort.
“My daughter recently gave me a mug with a quote from Tolkien: Courage is found in unlikely places† For me, a cup of tea is such an ‘unlikely place’ – a moment of reflection: ‘Well, we’ve had that again; muster up the courage to do the following.’
“I love Tolkien’s work. fantasy, Yes. Get away from this weird, real world for a while.”
A version of this article also appeared in the newspaper of 7 June 2022