A friend texted me the other day while I was lying on my back under the glaring light of my dental surgeon’s chair.
How are you?
I’m still sick. [Attachment: photo of me on laughing gas.]
You have had the (poop-emoji-est) January ever!
[Interpret ‘poop-emoji-est’ as you wish: wasteful, crap-natious, grossest, unbelievably garbage, and so forth.]
It made me lopsided smile through the dental dam, needles, drills, suction, and mind-altering medications. Because she put it quite right. It has been a doozy of a winter.
If you would permit me a moment of painful honesty and at the risk of exposing myself to be less than super-powered, super-positive, super-super Sarah:
I have Celiac Disease, a severe gluten allergy. I was diagnosed in 2002. For the most part, I have it well controlled with diet, exercise, and strict precautions. That said, it’s a lifelong autoimmune disease that has weakened my body’s ability to fight off most passing viruses. I try to keep as far from infectious disease as possible. Hard to do, right? Even harder when you’re a traveling author handshaking, hugging, and sharing meals with reader friends and strangers. Needless to say, I catch things. But never has it been like the winter of 2019.
In the spans of five weeks, I contracted a malicious fever virus, followed by an upper respiratory flu that turned to bronchitis; paroxysmal coughing from infected airways put me on an inhaler all hours of the day and night, unable to sleep, to breathe, to speak, and producing extreme exhaustion, dehydration, and medication induced GI distress. In the midst of this, I could not put off having planned dental surgery: a tooth abscess and a number of cracked teeth. I stress grind… a lot. All of this. In five weeks. That was just the physical. Emotionally, I hit a major low, which was more debilitating than the illnesses.
I didn’t feel like getting out of bed some mornings. I didn’t feel like getting in bed some nights. What was the point? I was miserable either way. Never before had I experienced such an out-of-body pessimism. I couldn’t read: it hurt my eyes. I couldn’t write: it hurt my head. I couldn’t watch movies: too loud! I couldn’t go outside: I’d catch my death of cold. I couldn’t get warm inside: shivering with fever. There were moments at my writing desk when all I could do was cradle my teacup and close my eyes; block out everything else, remove myself from reality, and float in the nothingness.
In the midst of one of those dark moments, I began to think about writers with chronic illnesses. No, I became obsessed with them. It seemed the only Internet search for which I had the strength. I wanted to know their stories. Because I could not imagine if my malaise and suffering continued for months, years, even decades. What I found gave me a whole new respect for many of my favorite authors; men and women who silently bore lifelong diseases, pushed through the depression that comes alongside of extended illness, and created powerful art.
Here are a handful of the many, living and gone, who exemplify endurance and inspired me to speak up about the realities of being a chronically ill, flawed, less than super-powered, human. [Read more…]