Conversations with my three-year-old, as I prepare to become a bilateral amputee.
Tales of living life to its fullest, even when the healing process is more complex than expected.
At precisely ten o’clock local time on October 23rd, I will be soundly asleep as doctors and nurses lay my dormant body on an operating table. For them, this is another routine procedure.
Pain is a companion. It accompanies me when I rise, only allows brief privacy to shower, and returns with every step, turn, and bend. I tell myself this journey is temporary; not because there is a magical future when I’ll rid myself of the second shadow, but that I now have tools and medication to dim its presence.
I have spent most of 2017 writing long-form non-fiction pieces concerning flaws in the American healthcare system, often attempting to communicate why we, as a country, shouldn’t embrace changes that would severely limit access to care for chronically ill and disabled citizens.
During the last several months, I’ve written much concerning how disabled people are only valuable to the media for their redemption stories, and why it is difficult to attain proper medical care.
I submitted the following essay to The Cannabist last Friday in response to Season 3, Episode 9 of The Cannabist Show. Ultimately, editor Alex Pasquariello decided it wasn’t a fit for their publication, noting in his response that, “as your submission observes and a cursory Google search reveals, EDS is an incredibly complicated medical topic,” and suggested that I submit it as a comment on Facebook.
In order to help you best understand the past few weeks, we begin this post listening in on a recent conversation with my neurologist. “Can you stand?” “Yes, but only for a minute or two, maximum,” I replied, his furrowed brow telling me all I needed to know.
May is Ehlers-Danlos Syndrome Awareness Month, the second I’ve experienced since receiving my diagnosis. This year, I implored friends and acquantainces to submit questions on the topic of EDS and how it affects my daily life.
This past week has been one of the most difficult on record. It began with preparing an application for a position I hoped to fill, while navigating the complexities of my expanding disability with a new potential employer.