by Jessie Arnold
Like many of you, I struggle with a myriad of chronic illnesses — from fibromyalgia to connective tissue disorder to Sjorgren’s. The latter two are autoimmune disorders, which makes me worry that the cytokine storm that characterizes COVID-19 would be especially virulent and deadly for me. Meanwhile, my husband deals with high blood pressure, a major risk factor for complications with the disease.
It’s especially important I practice good hygiene when I have to go out, and assisted by Pandemic Pal, I acquire and utilize the best PPE I can find. I sanitize credit cards with disinfectant wipes after I hand them over at the pharmacy. I wear the best masks I can get hold of when I go anywhere, especially to the hospital. I wash my hands for 20 seconds when I get home.
But a lot of my time will be spent at home. Recently, my home state of Texas has begun opening up, but I won’t be able to participate in that safely. A hair salon or nail salon (which have been blamed for outbreaks in California) seem like a nightmare scenario to my worried mind. I continue to stock up, reasonably, on supplies that will help keep me safe at home.
So here I am at home, trying to feel inspired. Trying, actually, not to let social media make me feel like my life is useless. I don’t even have one “gig,” let alone the side gigs hustle culture tells us we are supposed to have.
If you’re on social media, you’re seeing a lot of bread baking, gourmet meals, internet-based workouts, and home renovations going on. And it’s great — people are finding ways of filling the time during lockdowns that are meaningful to them. But for disabled people during the pandemic, this might seem overwhelming. Because there are days — weeks — where making a gourmet meal is out of the question, when I ache waking up in the middle of the day. And internet Zumba? That has always been out of the question.
One post I saw recently said something to the effect of, “If you don’t come out of the pandemic with a new skill, you never lacked time, you lacked discipline.” Ableism is everywhere, but this takes the cake. It assumes a world where resources like energy and health are boundless. Of course, some of us were basically quarantining to begin with, just putting one foot in front of the other. Were we invalid all along? Are we just a collection of the skills we attain?
It is helpful to remember Maslow’s hierarchy of needs. If our needs that are lower on the pyramid are not met, the most basic being physiological needs like food, shelter, and health, we are in no condition to work on our higher needs, the highest being self-actualization.
The work ethic that tells us we are only as valuable as what we produce is wrong. If you are suddenly unemployed or have been at home for some time, you are valuable. You are valuable by virtue of being alive. We can cultivate the spirit of patience within ourselves, treating ourselves as we would an ill friend rather than with the harshness with which we often regard ourselves. We can shut out unhelpful social media, block judgmental people, and meditate when things get overwhelming.
Therefore, sure, when I have the energy, I learn a few words of Spanish, make a cake, go for a walk. But I also take solace sitting outside in the sunshine remembering dark times when I didn’t think I’d make it to enjoy such an afternoon. I am fed, I am housed, and I am fulfilled. I hug my dogs, I tease my husband, and I remember that life is not in what I accomplish, it’s in the love of being alive that I have wrought.
Read more from Jessie at Jan Copywriting.