It’s another week of electrocution.
Today, it’s my left side, zapped by live wire, spasming every time I think it’s OK to stop holding my breath. It’s my sacroiliac joint, screaming.
They say a solar flare is a sudden flash of brightness from the sun. My body is the sun, on fire, flaring bright. Continue reading What the Flare? Ankylosing Spondylitis In Distress.
Juno.
Last night I slid into bed next to you.
I formed my own blankets around the perimeter of your body so my covers wouldn’t be too heavy on top of you.
I slid a sheet over you and up to your neck and placed a stuffed sloth on your other side, so you’d feel safe, warm, and cocooned in love.
You were in the middle of the bed, stretched out from the tips of your furry Maine Coon paws to the fluffiest end of your tail, with your confused, exhausted face trying to find an acceptable semblance of peace and comfort within the echoey plastic orb of the protective cone around your neck.
Your dissent collar, if we wanted to be funny. Continue reading To My Chronic Cat, Who’s Incurable. Just Like Me
Burning Man saved my life when I desperately needed a reason to keep living with chronic disease and disability. I owe it for reminding me what it means to be a whole human.
I return each year to the event in Black Rock City, a city that rises from the dust and becomes Home to around 80,000 temporary neighbors for 8+ days each summer.
Yet I risk a lot by simply showing up because of my Ankylosing Spondylitis (AS).
My medications severely dehydrate me, I’m at greater risk of sunburn and heat stroke, and symptoms can flare without warning especially if I push too hard. I don’t know what it’s like to not have pain; inflamed lungs make breathing difficult even without inhaling fistfuls of dust; debilitating fatigue can suddenly overwhelm me; and my body is weaker every year, making it difficult to explore without a chaperone lest I become unable to make it back to camp.
In a city where survival is part of living, my decision to be there is radically dangerous and bold.
The reality that every Burn could be my last as my body deteriorates is an unsettling feeling. I don’t want to stop going to Burning Man, but I also fear the inflated odds that I could have a health emergency in the middle of a desert with no access to cell reception or internet.
And during my third Burn, those odds almost won. Three times. Continue reading Worth All the Regrets | My Third and Sickest Burn
Since Zach’s vlog announcement of his Ankylosing Spondylitis (AS) diagnosis in September 2017, the video has been viewed over 4.9 million times (as of time of this publication).
In part one of this series I talked about Zach’s story’s impact, the validation that came with his diagnosis, and lessons learned living with a disease that is always beneath the surface.
In part two I dive deeper into Zach’s decision to announce his diagnosis on YouTube, his approach to coping with AS, and whether he calls himself an advocate. Finally, I’ll share his exclusive message to the AS community.
Before I continue, I want to clarify that I am neither doctor nor medical professional. None of the following should be taken as diagnostic, medical or treatment advice. Please consult with your physician before starting, stopping, or changing treatment.
Let’s get started.
BeingCharis 