Today's writer is Margaret Dauer, an RN living with an autoimmune disease in Boston.
Welcome to Together Apart, a community effort to establish mindfulness, connection, and presence, even when we cannot be physically together. Each week we will feature guest writers from various careers, places, and moments in life to discuss how they are Living More in the time of COVID-19.
After 10 years of living with a rare, severe, chronic autoimmune disease, I have never heard these words more than during COVID-19. At first, it overwhelmed me. I was unaccustomed to this amount of awareness for my condition and concern for my well being. Of course, I felt gratitude for all the people who came out of the woodwork to support me through this crisis as an immunocompromised RN—a double whammy of stress and risk factors during this pandemic—but I couldn’t help but wonder where they had been all this time.
It is a privilege to not have to think about your health until a pandemic, and a hallmark of that privilege to be flawlessly supported through it while you remain healthy. These newly universal feelings of fear and isolation are all too familiar and quotidian for many of us: to experience immense loneliness; to fear getting fatally sick; to be unable to safely go outside; to struggle with regular societal participation. This is the common experience for those of us with chronic illnesses and disabilities that have left us homebound, bedbound, immunosuppressed, and unaccommodated in our ableist society. Needing socially-distanced communication access and support, but not easily receiving it, if we receive it at all.
The world has so quickly adapted to assisting our population to easily stay at home—an action that up until this point has largely been treated as burdensome when asked for by the disabled community. My disease flare is too inconvenient for your strict deadline, for your risk of technological glitches, and for the extra effort it adds to your workday. This denial of accessible communication places a value judgment on my worth in this society; one that is all the more amplified by our readiness to make the same accommodations for the able-bodied and -minded among us, without question.
The moment you begin to fear for your own health is the moment you realize how others must be feeling about theirs. Realizing that maybe you should reach out, when really you should have been reaching out all along.
For this change, though, I am excited, and I am starting to see the shift. For one of the first times in my life, I am being irrefutably supported and obliged through action. Despite the stress, I am living fruitfully. Rekindling friendships through calls and Facetimes to people I haven’t spoken with in years. Taking intentional time for snail-mail that prior had little place in our fast-paced world.
As connection has turned more vitally virtual, curating this healthy space for accessible and honest connection has helped me reassess how I invest my time and energy. This is a practice I often follow when the most debilitated from illness, needing access to the healthiest communities; a very important and often overlooked one being social media. I took it upon myself to revamp my platforms by going through my likes and follows and deciding to only keep what brings me joy and makes me feel cared for. In the place of that negativity, I followed therapists, artists, advocates, and activists who shared their love and beauty with the world.
Many have said it better than I, but what else do we have in times of crisis than art? Seeing and feeling this warmth of global messages validating the legitimate challenges to our health and happiness—that it is okay to not be okay and that beauty can persist among the rough—is a message that I and many have needed to hear for a long time. People are finally taking a step back to recognize that if we do not have each other, we do not have anything, and it is liberating to be included in that revision of thought.
This is an opportunity to expand what it means to make this world livable and accessible for all people. Ceasing this perpetuation of isolation has everything to do with willingness and active participation to enhance clear communication for those in our communities who need it most, and have needed it always. This pandemic poses a chance for us to see ease of connection as a human right and accessibility issue - not just an exception during a global crisis.
