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Nineteen Months Later – An Update

September 1, 2022 /

It’s been nineteen months – nearly twenty – since I was infected with SARS-COV-2/COVID-19/”covooties”. Here’s what’s on my mind lately.

First, let’s get the most popular question out of the way: No, I’m not recovered or recovering. But I am learning to adjust my life to live within the limits of my illness! And that is no easy feat. I’ve made some improvements as I’ve learned how to pace, plan, and prioritize activity; and as I’ve added medications and other strategies for symptom management of a couple of my 30+ symptoms; and as I’ve discovered which activities and situations are most likely to trigger Post Exertional Malaise. This summer, I drastically cut back on advocacy activity, and thereby cognitive exertions, and that has meant being able to leave the house more often, take care of backyard plants, and generally feel less sick! So, I’ve improved a bit – I have not recovered.

The reality of living with illness that has no cure and little to no treatments is that you spend a lot of time waiting. Waiting to be believed and understood. Waiting to access appropriate medical care and effective treatments. Waiting to have funds to pay for equipment and supports that aren’t covered by public or private health insurances. And above all, waiting, hoping, dreaming of a cure! Research is happening and growing, but it takes years for effective treatments to become readily available. I’m not hopeless. I am realistic, though. My life is different than expected and will continue to be. I no longer have a neuro physio position – it was permanently filled by someone else this summer – and if I don’t miraculously recover to working in some capacity, I will no longer be an employee of our provincial health service. Capacity to work is a measure we all understand as individuals, and is of high priority in our capitalist society. It’s not the most important thing about living or our identities, but there’s no way around it: work is central to most of our lives.

What if you can’t work, though? I am not able to work at this time, and maybe not for a long time. Maybe I’ll never be able to manage working. Only time will tell! My cognitive capacity limits me greatly. Even writing this blog is taxing for me (I’m so brain foggy right now and need to take a break!) When I engage on a work task that involves problem solving, critical thinking, organizing and analyzing information, I peter out very quickly. A recent example is a literature review I worked on for 2 hours. My symptoms started at 30 minutes. I should have stopped at 1 hour. I pushed through to the 2 hour mark and that resulted in being sick with my cluster of Post Exertional Malaise symptoms (it’s not just debilitating fatigue – there’s more!) for the rest of the day. I was collapsed on the couch because of 2 hours of work that I did from home, with my feet up in long sitting, in a quiet environment with little to no interruptions. So… I’m not exactly employable in the usual sense – especially the way employment usually exists for Physiotherapists! Clearly, I’m not anywhere near my previous full time, frontline, clinical healthcare job. I don’t know that I ever will be. Maybe I’ll eventually be able to work in some capacity. If I am, it will be at significant cost to other things in my life. I am so incredibly far away from the life I lived, let alone a return to the career I had. That’s been a lot to process and grieve these last months. It’s also been challenging to try to ask others to see how ill and disabled I am. People really love to find creative ways to say, “I don’t believe you.”

Sometimes I find myself in a meta moment of incredulity, and think to myself, “Is this really my life?!” But accepting that, yes, it is indeed my life, is actually helpful. Acceptance gives room to make the changes you need to make. It gives room to plan appropriately, and dream anew.

Acceptance also allows for divesting from and unlearning all of the ableist and capitalist assignments of “value” that we impose on ourselves and others. Because the truth that ableism and capitalism don’t want me to celebrate is this: I am valuable as a human that exists outside of the workforce! To capitalism, I don’t have value because I can’t produce for it. But we don’t have to buy into that thinking. Please, can we stop buying into that thinking? My very existence is valuable – and so is yours. Humans are innately valuable! We are not burdens when we cannot earn income; when we cannot live independently; when we cannot or do not perform or fit in all the boxes that our society deems “normal”. The freeing thing about this illness and disability experience is learning to divest from ways of thinking and being that say I’m not worthy – and that’s just the tip of the iceberg. Now, don’t get me wrong. I can’t fully divest from capitalism – I still gotta eat! It’s a luxury and privilege to have the capacity and access to unlearn and learn this stuff. But knowing to my core and in my bones that I am not defined by a job title, or by my abilities or inabilities, or by any type of production or performing; knowing that I am not wasted potential, or burdensome, or incapable of living joyfully as a Disabled and chronically ill person – that is FREEDOM I cannot do without now that I’ve tasted it.

 

A freeing reading list:

The Body Is Not An Apology by Sonya Renee Taylor

Skin, Tooth, and Bone: A Disability Justice Primer by Sins Invalid

Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha

The Wisdom of Your Body by Hillary McBride

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