Dear friends and collegues.
I feel like my energy is constantly drained and I can hardly recharge. If I do one thing I cannot do something else that I wanted to do. I have to make decisions what to prioritize and what to skip – and these decisions are sometimes so hard! There are so many things I want to do, but feel that I don’t have the energy for.
I am not even sick, just very pregnant and mother of an energetic differently abled two-year-old. In fact, the Pediatritian told us today that he is now in the development stage of a one-year-old. So at least he is taking things slowly, taking his time to do everything his own way.
I sometimes feel that there is pressure on me from the outside to do more, but actually I think it is internally – I mean internalized – because as I can see with my son there is no wrong way to do things, but we all have to find our own way to do them. It becomes painful when comparison enters the field. The Pediatritian compares him to other children his age and finds a difference. At some point he will probably compare himself to other children his age and will find a difference. This can be a painful moment – or a strengthening one – which I hope it to be for him – and I am thinking about how I can make it that way for him. Firstly by not comparing myself with others. Secondly by not comparing him with others. Thirdly by giving him absolutely the time that he needs – and not put pressure on him to be faster, better, bring more effort.
This feels like a transition already into one of our next topics, where it is about temporalities and futures of differently abled people.
But what I actually wanted to write to you about, is my exhaustion.
I like the way Christine Miserandino describes it in her essay The Spoon Theory” (www.butyoudontlooksick.com/the_spoon_theory). Christine Miserandino lives with a chronic autoimmune illness and one day she explained the use of energy ressources to a friend – by using spoons as a measure. For a chronically ill person there is only a certain amount of spoons they can use per day, whereas a healthy person has an unlimited supply. For the sick person this results in having to make very conscious choices, as you have to plan your day and how many spoons the different tasks of the day will use up.
For example taking a shower and washing the hair will take up a spoon, also deciding on what to wear and getting dressed – tasks that don’t take up much energy in the morning for a healty person. In fact half or even more of your spoons might already be used up by lunchtime. Depending on what you did the previous day, there might be a few spoons more or less you can use today.
Whereas I don’t have chronic illness and I was always able to push myself still a little bit further, the experience now is of a similar kind. — At this point in writing I am wondering whether it is presumptuous to put my exhaustion into context with the exhaustion of a chronically ill person. As a white, able-bodied, healthy and pregnant woman, I still get a lot of support and acknowledgement from my surroundings and from society in general. I am hopeful that there will be times when I will again have enough energy to do the things I want to – maybe not all of them, but most of them. And maybe I will be able to prioritize in a different way by then, having learnt from this time and this sensation, like learning from a crisis situation, learning that something cannot go on like before, that something needs to shift.
For a chronically ill person this hope desn’t exist. Their condition is here to stay, will maybe even deteriorate. The condition might not even be visible, to they might be confronted with “But you don’t look sick!” (see butyoudontlooksick.com) or different kinds of comments and advice. This demands a different kind of dealing with it (and probably each person will find their own) – and it demands even stronger that something will change in the surroundings and in society – to make it possible to live well with a chronic illness or to be differently abled. Changes of politics, of architecture, of attitudes; more respect, solidarity, willingness to listen would be some of them.
So finally I feel in a way more able now to ask, to listen, to offer support, – because my experience has brought me a little bit closer to what it means not to have enough spoons for the day.
“It’s hard, the hardest thing I ever had to learn is to slow down and not do everything. I fight this to this day. I hate feeling left out, having to stay home, or not get things done that I want to. (…) When other people can simply do things, I have to attack it and make a plan like I am strategizing a war.” http://www.butyoudontlooksick.com/the_spoon_theory
// This text was also published in the 3rd Zine of the Feminist Health Research Group “Being in crisis together” — http://www.feministische-recherchegruppe.org