One sweaty Tuesday morning in August, I walked into an endocrinology clinic in New York City’s Flatiron district. I spent fifteen minutes in the lobby, twelve in an adjoining office and seventeen in a dressing gown, listening as the doctor reviewed options for my diagnosis – surgery, which I didn’t need, radioactive iodine, which I wasn’t ready for, and drug therapy, which I’d start the next day. Some key terms – autoimmune, hyperthyroidism, goiter – made sense, and I walked back out into the daylight less than an hour after I’d walked in. The next morning, I started swallowing pills for a disease I suddenly had, that I hadn’t heard of 24 hours prior.
I didn’t go into work that day, or for the rest of the week. I passed my time alternating between thoughts of “It’d be really convenient if I didn’t have to go to work again” and “Thank God I have a job.”
The thing about Grave’s Disease is that if you passed me on the sidewalk, you wouldn’t think there was something wrong. You wouldn’t say to yourself, “You know, I bet she has a weird autoimmune disease, that one. Look at the slight staring quality of her eyes. See there how her elevated heart rate pulses uncomfortably.” No, that doesn’t happen. No one thinks that. I don’t look sick. Sometimes I don’t feel sick. Sometimes I even forget there are things I’m not supposed to do, or eat, and then I suddenly feel TERRIBLE and remember – ah, yes. That. That manageable thing I have that is not a tragedy, but rather a perennial rock in my shoe.
There was a fair amount of fuss when I was started showing signs of illness, followed by a fairer amount at onset of treatment, followed by what I deem the omnipotent Raised Eyebrow regard for my condition.
A loved one calls to ask, “So, how are you feeling?” and I can actually sense their eyebrows. I can feel them through the phone. They are raised at me, wary and untrusting, knowing I am not healed from this incurable nuisance but that we’d all prefer I felt as fine as I say I do. Sometimes my reassurance is the truth.
Last night at dinner, on the final eve of the year 2014, I heard myself bring up Grave’s Disease, unprompted, two different times. Why was I speaking about illness at a public restaurant (versus the private confines of the Internet)? How did autoimmune disease work itself into light conversation with strangers?
If you enjoy writing things down to understand them, and are fortunate to have friends who support this practice, you may receive handwritten cards in the mail from time to time musing on such. I received one in December that pondered the following:
“I wonder how you are doing, if illness has created for you a before and an after.
In cataloging what happened – what is happening – to your body, how are you understanding the damage? It can be scary to be rent from your own flesh.”
I was equal parts touched and terrified by the letter’s text. All of my flesh, (#blessed), is still attached, but there are moments when I panic and wonder if today will be the last day I have the normal amount of protrusion in my eye sockets.
It’s a funny thing, to have a chronic condition. For someone with tendencies seared in compulsion to process and metabolize and reflect, the idea of having to let go of sense and continually work with and around something is new. Is uncomfortable. But this is part of where I am. And in time I’ll look back and see it was part of where I was. It’s what helps make up (some of) the stories I tell. It’s part of what fuels uncontrollable anxiety and part of what assuages the need for utmost control.
Happy new year, to you.
Oh honey, I can relate. Chronic back pain also got me plenty of expressions that pretty much said “umm, we all have back pain sometimes, stop being such a baby.” I also have a before and after, since my back has never been 100% again, but in my case the after now feels totally normal, and luckily there are far more good days than bad. And for the record, my raised eyebrow in response to “fine” is not because I want you to feel better for my sake but because I want you to be honest and vent when the answer is that you’re actually not fine!
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