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.
It’s a chilly Tuesday afternoon in Denver as I pen this essay to you. Rest assured that I have other, far more enjoyable items on today’s agenda other than writing About Trump, and yet, I’m once again compelled to do so.
Last evening, I assured my daughter she was witnessing history. Roughly twelve hours later, I’m technically correct but last night did not proceed as forecasted. Early on, I took comfort that FiveThirtyEight predicted a Clinton win — the odds being north of 70% — settling into bed when the former Secretary of State was leading in electoral votes.
This year has been filled with wonderful events, some were expected, while others, wholly unthinkable in early January, have also became reality. One of the more pleasant surprises came in February, when I received a special delivery from Losant (then Structure), a software-as-a-service platform that empowers developers to easily create powerful, reactive, connected applications that can be run on small devices and embedded into our lives.
The process of becoming a parent teaches lessons you never expected to learn. There are, of course, many small nuggets of wisdom that lodge in your brain; the prevailing signs of a wet diaper (thanks to modern technology, diaper wetness can be scientifically verified), and your child’s entertainment preferences (or, how to overcome your fear of acting foolish in public).
Lifting a 14-pound child, radical weather changes, rising levels of acute pain, and emerging chronic fatigue symptoms are changing my daily routine. This is the second post in a series covering what it’s like to live with Ehlers-Danlos Syndrome (EDS), a complex, life-long genetic condition that often causes serious, chronic pain and frequent subluxations among patients.
In four months time, I’ve realized that building a business and raising a child are incredibly similar. Speaking from experience, with a child, it’s nearly impossible for parents to share candid photos of their children and daily activities without being chided for choosing an unsafe carseat, or being schooled on dangers of certain “unnecessary” vaccines.
I wake up, though not by choice. The alarm clock isn’t ringing, and the apartment is quiet. My bedsheets wrap me in a warm, kind hug; and although the bed is comfortable, I’m miles away from a blissful state of mind.