Tag Archives: Life

ankylosing spondylitis, spondyloarthritis

The Social Progression of Ankylosing Spondylitis

December 15, 2019 BeingCharis 4 Comments

When I was diagnosed with Ankylosing Spondylitis (AS), my world was upended.

I lived in a state of shock for the first month or so, clinging to hope that the diagnosis wasn’t really what I had.

I talked myself out of it. Or at least I tried:

“I can’t have this incurable disease, can I? Maybe I imagined my symptoms, my pain, my fatigue – all those years of unanswered medical woes.”

I thought these things while also dreading the reality that I knew was true. This disease was with me for life. Period.

And then I learned I wasn’t alone. Everything I was experiencing – emotional, social, physical, medical – was being experienced by millions of strangers I would never meet.

I only realized, years later, the social progression of Ankylosing Spondylitis is something we all experience in our own way. We with the disease have conversations with ourselves, with our friends and family, with our disease community, our doctors, our medications, our side effects.

The social progression with this disease is real and normal and natural, yet lonely all the same. It happens in different ways for all of us, and it continues for the rest of our lives as we adapt and change and grow and … well, survive our own bodies doing their best to survive.

Continue reading The Social Progression of Ankylosing Spondylitis →

disability, poverty

The Privilege of Having Enough

November 28, 2019 BeingCharis 3 Comments

Black Friday, the day that foreshadows how the market will perform through the new year, was actually a dark day in history (in case you didn’t know) representing a large-scale financial crisis because of greedy Wall Street financers in the 1800s.

Gosh, sounds familiar.

Now we’ve reclaimed the meaning of that day, or rather, corporations have reclaimed it and turned it into a day of splurging and materialism. Cash flows from regular folks’ pockets into the wallets of billionaires and executives who source labor from the underemployed and materials from China. I mean, I am exaggerating a little.

A little.

Let’s Back Up a Bit

I used to spend the day after Thanksgiving going on hikes or long runs and enjoying how empty everything was that wasn’t a store. The outside world was my oyster for that quiet, quiet day.

I refused to utter the words “Black Friday” because I staunchly opposed what the day had come to mean: greed and a blatant disregard for the environmental destruction that comes with unfettered materialism.

Instead, I called it Buy Nothing Day along with millions of other environmentalists who human-cott the spending spree that is Black Friday.

On Buy Nothing Day, I distanced myself from over-stressed employees and screaming throngs of people breaking down doors, running people over, and fighting over highly discounted flat-screen televisions. I was horrified by this violence that resulted in mountains of plastic, cardboard, and Styrofoam and; inevitably, piles of broken electronics and discarded toys after mere months of use.

To me, Black Friday represented the worst humanity has to offer – a piling up of vices so-to-speak – and I stayed as far away as possible.

Then My Life Changed

In 2013 I was diagnosed with a disease that runs in my family (Ankylosing Spondylitis) that upended my world and disabled me in a matter of a few years. Continue reading The Privilege of Having Enough →

#sickbody, ankylosing spondylitis, Arthritis, chronic disease, chronic pain, disability, health, sickness, spondyloarthritis

People With Severe Health Conditions Dream of Simple Things

January 7, 2017 BeingCharis 1 Comment

I want to go to the doctor one day and once again check the box on the intake paperwork that says “generally healthy.” The once robotic maneuver of sliding my arm smoothly down paperwork to check off a straight line of boxes is now a chore requiring concentration and an agile hand zigzagging across columns.

Having the opportunity to check that “generally healthy” box would reinstate my self-worth as an able, capable human.

This dream is on my bucket list between trips to Hawaii and Zamibia. But the dream vacations do not get much attention – I’m distracted by the more immediate and unrealistic desire for good health. I’m waiting with open arms, but I don’t expect this invitation will be answered. Continue reading People With Severe Health Conditions Dream of Simple Things →