On Sunday, I woke up with a catch in my throat. “But that’s no problem,” I thought. “I’ll just take some extra albuterol [inhaler] this morning and I’ll be fine.” I did that. Felt better. Then decided that I was sick of the garbage accumulating in the kitchen. Rather than thinking, “It’s kind of cold out, that’s an asthma trigger, and I am already weak this morning, so maybe instead of multiple trips carrying things up and down stairs, I’ll ask a housemate to take care of it later,” I went ahead and took out all the recycling and compost.
As I finished my last round, panting, a housemate came home and found me noticeably shaking and breathing heavily. Sitting and trying to catch my breath back.
Two hours later, I went in to work my part-time job. Finding I was stationed somewhere with a lot of standing and talking to people, I went to find a supervisor to move somewhere less active. The supervisors took a look at me and told me it would be fine for me to just go home, and are you sure you don’t want the EMT to make sure you’re okay? Let’s find someone to walk you to your car to make sure you don’t collapse on the way there.
On Monday I got a second letter about a doctor’s appointment my insurance failed to cover. Last week I got my monthly premium bill saying I didn’t owe anything, so I assumed it had taken into account that I am not working and would be covered for insurance. Now I am going to have to spend a lot of time on a phone tree trying to understand what happened. Phones make me anxious at the best of times, and this certainly is not that.
SAD is rearing its ugly head, with the time change and the ugly drab grey days filled with rain. Time to take extra vitamin D and use a sun lamp after waking up. Try to conserve energy as best as I can.
Even just a few months ago, I called this “dealing with health issues”. Or “I have invisible illnesses”. But if I have days where I go in to work and have someone look at me and tell me it’s okay to go back home, then I am more than justified in taking back the word disabled. Disabled in our minds looks like using a walker, or wheelchair, or blind, or something we can see when we look at them. It doesn’t look like days that are fine and then days that suddenly I just can’t breathe. It doesn’t look like a pretty, vibrant young adult (woman) with strong energy and a sharp mind. It doesn’t look like me.
But these are the realities I deal with. I don’t know what it’s like to wake up with a healthy body. That’s never been a part of my reality. And as I’m getting older, my disabilities are wearing down my body. I’m in my 20s. No one expects someone my age to not be able to trust their body and mind. I’ve internalised this mind set so thoroughly that I have barely let myself be comfortable with disabled, and that means I haven’t let my body be what it is.
It’s time for me to take back disabled. To forgive myself for spending most of my day taking care of my body and mind. To not expect myself to do too much, and to understand that things like navigating phones are going to take a lot of energy, and it’s okay to treat myself gently. It’s okay to not be perfect. That’s a hard thing to get used to. After all, we have a social narrative that demands we fit in to how our lives are supposed to look like. Disrupting that is a challenge.
I hope to live up to that challenge.