I have always felt on the outside of the status quo so it never mattered that much to me that my queerness never fit into any of the available boxes. It didnʼt matter to me if I passed as straight or cis. When I got sick, suddenly how I looked was all that mattered to everyone around me, “You donʼt look sick.” is what everyone including lovers and strangers said. No one could see what was happening within: the excruciating pain, the exhaustion and dysphoric malaise. All the outward signs – the circles under my eyes from pain induced insomnia or the puffy face and neck from prednisone – get attributed to me instead of my illness. Thereʼs an ongoing struggle to turn inside out until my witnesses (invited and uninvited alike) get what disability really is. Now trans identity and disabled/crip identity are sewn together in me ~ picture how Peter Pan sewed his shadow to his feet, thatʼs how it looks. As I encounter middle age, these identities burn into me. All my wrinkles are crip queer wrinkles.
No one chooses disability and no one karmically deserves it. I see my privilege much more starkly now that so much has been stripped away and I forgive myself daily for all that I didnʼt before and still donʼt now understand.
My life has happened inside and sometimes hiding behind magic. I have been treated to depths of meaning and deep drinks of emotive luxury I could never have dreamed. The lesson learned was to aim with clarity of intent but also openness to discovery because wonders beyond imagining arrive in that graceful space.
Thereʼs nothing delicious about being chronically ill but there are wonders and Iʼm striving to remain alive to those.
Chronic Illness Queerdo
Gender Id/Pronoun : Genderqueer/Non-Binary/Post Gender: They Them Theirs
Age : 45 years old
Location : San Francisco
