Secret Fader

The Politics of Terror

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. During the intervening months, four radically different pieces of healthcare legislation have also entered the stage, each scoring progressively worse on issues of public health. For the disabled and chronically ill, those months have been pure terror. Many have felt betrayed for the promise of lower health insurance premiums, but it’s difficult — and dangerous!...

Shades of Rare Illness

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. This language is familiar to any disability or rare illness advocate....

Casual Ableism

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. “Are your legs really that weak?” I quickly retorted. “If you’ll look at the chart, the purpose of this visit is to investigate possible small fiber neuropathy in all four limbs, plus muscle weakness and numbness in my lower extremities....

What I Wish You Understood (About My Chronic Illness)

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. However, I failed to realize that the world I’ve come to inhabit since I stopped going out regularly is radically different from the world as experienced by most of my able-bodied friends. Every trip is now a great expedition: I leave the apartment, consistently with a mobility device and yet, most aborted trips are due to lack of access....

Becoming Disabled

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. By Thursday, I had fallen twice and hesitantly accepted the loan of a wheelchair from Children’s Hospital. We were there for an unexpected surgery on my daughter, Sloan. I wanted nothing more than to be present for her in that moment, and my disability came between us....

About Trump

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. I already captured emotions present the day after; the purpose of this note is to explain what has already been written. This is an open letter to everyone I know with a heart that yearns for freedom, justice, unity, and decided Donald Trump was ultimately best equipped....

History in the Making

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. None of this softens the blow of waking up in Trump Land. Pundits and polls alike were both incorrect....

Losant: the IoT Platform for Everyone

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 devices then serve as our main interface to the application, which in turn, interfaces with Losant....

Dads Change Diapers, Too

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). The bigger challenge is learning to live with the responsibility of guiding your precious child....

Life on the Inside, Part II

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. Granted, pain has a normal place in my life. I plan for it, and always keep medicine on hand; but even though I expected this as the logical evolution of my condition, it doesn’t make it easier to swallow....