Help me hold my heart as I navigate disability

TL;DR I’m asking my network to help me take extended time off work to heal from several chronic health issues (made worse by the stress of our racist, sexist, and expensive health care system), in order to avoid permanent disability and unemployment.

As some of you may know, my health has been in freefall since early 2022. In the aftermath of a viral infection, a non-epileptic seizure, and a bike accident that left me with a concussion and back injury, I’ve been dealing with post-exertional malaise (PEM) flareups that have left me bedridden or homebound for months at a time. The “post-exertional” part means that *any* use of energy, even to sit up in bed or feeling upset or anxious, can leave me with brain fog, body aches, light and sound sensitivity, migraines, excruciating eye pain and blurry vision, heart palpitations, lightheadedness, and more. It’s like the worst hangover or flu I’ve ever had – but without warning and no hints about when it might end. The root cause of PEM is unknown, but the leading theory is that it can literally be caused by burnout.

In addition to my body, my mental health, spirit, and heart are affected by all of this – which in turn affects my work. Because I do mission-based work that intersects deeply with my own identities and communities, I have no choice but to put my heart into everything I do. In asking for your help, I’m asking my network, my friends, my colleagues and readers and ex-bosses(!) to help me hold my heart. Although it has absolutely gutted me to have to leave my beloved Jersey City and now Philadelphia, I’m moving home to Kansas to be with community who can help me care for myself (at a slower pace and lower cost of living) — but I’m hoping to stop working or reduce my output significantly by July before I go.

I’m asking now because I’m at the very end of my (dangerously frayed) rope and, to be honest, I’m scared. I’m in such deep “energy debt” and in such poor health that I’m terrified that if I don’t take this time to rest and heal I’ll become permanently disabled to the point of being unable to work ever again. I’m asking you all because I don’t have family or generational wealth to fall back on — but also because I’ve seen so many of you show up for me and others at work and in life. I’ve struggled to ask for help for as long as I can remember, but I’m hoping that if you’ve engaged with, benefitted from, or respected my work in the last decade or so, you’ll show up for me, too.