I’ve often found that the words you write are less important than ones left behind. Yesterday evening, as the Republican-controlled Senate attempted to ram through a 400-page, vastly unbalanced tax reform bill, I furiously tapped out a Tweet that wouldn’t be sent.
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.
July 26, 1990 won’t be soon forgotten. On that day, President George H. W. Bush signed what White House staff publicized as as “the most sweeping civil rights statute since the 1964 Civil Rights Bill.
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.
Over breakfast this past weekend, I described a group of folks predisposed to become engineers as “naturally curious.” Like any intellectually stimulating field, it draws a unique group of tinkerers who often think in ways that allow them to step through a given problem, reducing complexity along the way.
If healthcare reform is a stage play, the curtain rose anew in November, 2016. The audience, hopeful if unsure, beheld a ragtag group of players flanking our most ill-advised main character.
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.