I want him to know I am not lonely, I have ghosts, I have my illnesses, I have a mouthful of half-languages, & blood thick with medications, doctors line up to hear my crooked heart

― Safia Elhillo, The January Children

I am not lonely, I have ghosts, too. I have Turner syndrome. I have more nightly medications than can fit in one weekly dispenser where the day’s compartments are marked by their letters. I have a team of heart doctors that keep an eye on my dilated aorta.

When I was diagnosed at the age of 15, I did a little reading about the life expectancy of someone living with Turner syndrome. I remember learning that only 2 percent of babies that have Turner syndrome are born alive. I remember feeling that life is miraculous. Beyond that, I remember the age 35 jumping out. I don’t remember the source. Genetic understanding was so new in 1987. I remember thinking anything beyond the age of 35 would be bonus years. That is a huge weight to carry as a teenager — a ghost you might say.

The ghost of my diagnosis silently followed me for years as I dated, studied, worked, and lived. Relationships thrived and withered. Accomplishments and failures occurred. The ghost was and is right behind me.

It feels more accurate to say the ghost is inside me and my years are about living in the truth of it all. Living in hope not inevitability. Let me explain. Prognosis often yields a sense of inevitability, and inevitability provides a strangely comforting sense of clarity and security. Hope requires something bigger than clarity and security. I choose hope. I live with a healthy chip on my shoulder that defiantly yells, “Oh Yeah! Watch me.”

To be honest, I struggle with loneliness. The ghost is always here and I have a hard time dealing with the ghost. I want to peacefully invite the ghost to walk with me, to turn my ghost into an ally of sorts. Sometimes isolation and denial are quieter, easier paths than making friends with the ghost. Something inside me tells me a relationship with my ghost is not optional.

What I what everyone to know: I have tried giving the ghost the silent treatment. It does not work. It oozes and shifts and breaks things. The more I make peace with my ghost, the easier it is to navigate my days. To pay attention. To breathe. To love. To surround life in the profound gratitude each days deserves.