Support C.'s Journey to Overcome Long Covid

Hi! It’s Ariel, your disabled UX researcher friend! I have been sick and bedbound with long covid the last year and a half. It has changed my life in more ways than I can describe. One of the things I have learned is the power of community. No one - not one of us - can do “it” alone. Despite what mainstream culture has taught us, life feels better in community ;)

I would like to introduce you to my friend C. They are 21 years old and are one of the most dynamic, creative, quick-witted and kind people I have ever met. Like me, they are also living with long covid. They are 100% bedbound and no longer able to sit or stand, something I know too. Talking and other energy-intensive activities are very limited. (If you haven’t heard from me, that’s probably why!)

We have Myalgic Encephalomyelitis or ME which means our bodies produce less way, way, way energy than other people -- as much as 18x less energy for thinking, showering, standing, talking, moving, writing, etc.

As I write this, our mutual friend C. is facing these serious health issues along with homelessness + food insecurity.

C is 21 and was in college when this all began, just beginning to build her life. Not every family of origin is resourced to support disability. Six weeks ago, C was nearly discharged from the hospital to a homeless shelter unable to walk, stand, get food or use the bathroom without assistance. A good friend intervened. I am writing to invite you to be a part of gathering resources to provide continuing support to C and their caregiver.

Public resources (i.e. our collective tax dollars, doing something good!) will kick in with further support, but it takes 1-3 months. C’s long term safety means money for rent, food, copays and medical care. These resources allow C to focus on her healing for the next 6 months, instead of worrying about being unhoused, which is not appropriate.

In a time of big change, which we are undoubtedly in, it is a gift to have a clear next step. Ways to recognize you are in a position to give:

Consider also that hoarding and the concept of investing in individual resources for the future are part of white supremacy culture. Please join C and me and our community in building a better future than the one white supremacy and capitalism has designed for us. Please consider this as reparations if you are white.

May you never experience the things that C. and I and our brethren with ME / Long Covid have experienced. May you also never experience the results of medical racism, colorism and sexism combined with classism, heteronormativity and ableism.

But please give from the maximum of your imagination, as if you have walked in our shoes, or rather as if you too have lost the ability to walk -- to brush your teeth, to change your clothes, to brush your hair. And yet imagine that you, my friend, have recovered miraculously. Please give from the deepest level of understanding you can muster. This is the time. This is about choosing the future we want.

It takes work to be made visible; it takes incredible strength and courage to survive an illness 99% of doctors don't know how to treat. For that reason, there are no last name or photos to protect C.'s digital privacy. Due to age, C's bank account is shared with family of origin. Funds used entirely to support their needs, at their discretion.

As bell hooks said, “Rarely, if ever, are any of us healed in isolation. Healing is an act of communion.” We are all healing and recovering our interconnectedness with each other. Let's continue on this road together.