These are the words I hear time and again. Most people can’t see my pain, discomfort and limitations. You cannot tell I had a stroke, you can’t see that I am completely blind in one eye, no one can see that my heart and my lungs are damaged and limit what I can physically do. You don’t see that my blood clots so easily that I ingest rat poison every day to stay alive. You don’t see the side effects I endure from the medications or know how horrendous I feel.
FUCK these diseases, all of them!!! The last five years I have struggled to stay in the game. I have attempted to run the business I worked so hard to build and keep the reputation I earned. But I am tired y’all. I can’t keep up. I no longer want to. This last year has done me in.
Do you know how many timesI have heard people say Covid is no big deal because only sick people risk death. That is literally ME! This year has left me feeling disposable and irrelevant. My life and so many of my fellow Spoonie Friends have been discarded by the masses. It feels like shit, everyday we are told we aren’t worth saving.
These images were taken after a recent hospital stay. My body is swollen, bruised, battered, scraped, scarred and exhausted. Some of you may remember I was scheduled to have procedures on my lungs last Spring out in San Diego. That never happened though because covid changed all of our lives.
As we reopen and life resumes I am reminded that I am not nor will I ever be on the same ground as those around me. Health is a privilege I don’t have. Time is a privilege that anyone living with a terminal disease understands is cherished. It is our most precious resource.
These words and these images are more for myself than anyone else. They are raw, unflattering , some would say disgusting… but they are me. This is my body now. This is where my body is today.
It has survived extraordinary trauma and for as much agony as it gives me it also allows me exquisite pleasures. The path to loving our body will never be in how it looks but in how it allows us to live. And even now in it’s mangled mess I am grateful for this body and the life it allows me to have…. even if it’s not the one I imagined <3
