Nicholas Young

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Posts about chronic-illness

Professional Jeopardy

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 can cope with discomfort, lost sleep, and isolation well enough; but chronic illness’ true crime is stealing life from beneath my feet....

Commuting While Disabled

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. Last June I discussed the increase in my pain levels due to an advancing genetic condition, after I wrote an introductory post introducing you to Ehlers-Danlos Syndrome. To say I’ve spilled ink is an understatement; I even took you deep into my life with chronic illness, writing my own personal frequently asked questions addressing what I wish you understood about my fluid, but still disabling condition....

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....

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....

Life on the Inside, Part I

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. Rising, I realize what woke me: first, I feel it in my neck, shoulders, upper back, and knees. The remaining body parts — hips, hands, and feet — all begin to play their part in a symphony of tension and pain....

Painless Keyboarding

What is your first thoughts in reaction to the term “mechanical keyboard”? Nostalgia? The obnoxious “clicky” sound you hoped to leave behind? If you’re relatively young, you may have no recollection of this product at all. If you’re a programmer, whose hands are on a keyboard for hours each day, then maybe, you’ve grown quite fond of these devices. A few weeks ago, I was happily pounding away on my Apple keyboard — but even after years of use, it never felt right....