sickness

by

Bedroom.

A view from my bed [ID: Hazy photograph of a window illuminated by vibrant red and purple lighting. In the center there is an electric candelabra sitting on the window sill, slightly obscured by sheer curtains.]

2011 was the year I began distancing. By which I mean, I began a life lived from my twin bed, fueled by goldfish crackers and electrolyte drinks, seldom able to access the outside world. It wasn’t mine to call home anymore.

I was drowning in conditions that these doctors hardly knew about. I had no choice but to become my own doctor, nurse, and historian. More than anything, I became my own community.

The outside world was stolen from me by sickness, uncertainty, and administrative violence – this world was never built for my survival. Such predicaments were met with constant calls to push through – go into the world anyways, risk it all for a “normal” life. They said adapting to it would make me better. It wrecked my body and my mind. Being bedridden was extraordinarily taxing and painful in a way that cannot be understood by those who have not been fully immersed in it in this way, yet. But I am inseparable from my bedroom life, I am made of soft pillows and the world I built among them. 

Continue reading →
by

She bought him a catfish body pillow. Seriously.

Trigger warning: cancer, illness, hospice mention, food mention, weight mention

When you lose a parent as a young kid, you have a lot of questions. “Did daddy like ___?” “Would he like this band or that band or this food or this ____?” I often wonder now if it was hard for my mom to constantly get these questions from me that I only asked because I was insatiably curious and I knew remarkably little about who my dad was personally. A lot of what I remember about my dad (and about my childhood in general) comes in images and in imagined scenarios of how I believe things would have gone. I don’t have many truly genuine memories of my father, but the ones I do have I treasure and actively make sure I never forget. One thing I know for sure about my dad was that he was stick thin. I remember him crossing his bony legs in the morning in his bathrobe as he read the newspaper and drank his coffee. My mom told me that his legs were so bony that he had to sleep with a pillow between them; my aunt even bought him a catfish body pillow (my dad loved to fish, so it was a perfect gift) to put between his legs. It looked like a catfish. Seriously.

Continue reading →