On Life and Pain

I was four years old, and I missed a day of preschool. A little boy was crying and when the teacher asked him why, he said, “I miss Claire. I’m going to marry her!”

The next day, I told him two things: we couldn’t get married until after college, and the reason I was out sick was that I had Reactive Airway Disease. I can still picture him sitting on a trike (which was inside the classroom, oddly), and thoughtfully saying, “If I had a disease, I would stay home from school.”

That is the first memory I have of explaining one of my illnesses, and absolutely not the last. As far as I know, it was the last time any trikes were involved.[1]

In the last twenty-six years I have been diagnosed with four separate, non-life-threatening, quality-of-life-altering chronic illnesses. First it was Reactive Airway Disease (a type of asthma) and the ever-present chance I would stop breathing. Next it was an anxiety disorder, possibly brought on by a lifetime of taking stimulants and wondering when my respiratory system would have its next fit. Then it was a disc that herniated inside my nineteen-year-old spine, and stubbornly refused to heal, eventually leading to two surgeries, 14 spinal injections, and permanent nerve damage.[2]

As I’ve grown older, I’ve gotten the asthma more or less under control, and no longer live in fear of it. But the nerve damage causes weakness in my left leg, which causes a limp, which means my right leg is starting to suffer. It also causes daily pain, which can be set off by anything or nothing at all and may or may not respond to medication. Am I compensating for this limp well enough? Will standing too long or sitting too long be the trigger today? If I try to go for a drink after work, will my leg refuse to carry me home? Can I get out of this bed today? Will I be able to cook for myself? Am I going to make it across this street without tripping and sprawling out headlong? So on and so forth - a mental multivariable calculus all day long. Imagine the effects of that on a brain that is capable of sending me into tears over the thought of having to reschedule a meeting.

The truth is, though, that I love my life. It’s great in a lot of ways. I have a job with a nonprofit I care about. I recently got into grad school (yay!) I’m in a long-term relationship. I live in a luxury building, even though I do have to sublet the other bedroom AND the living room to afford it. I can still see the city skyline from the window of my crowded place.[3] 

If my hobbies are more sedentary than they once were, if I have to work at a standing desk, if I have to fight for aisle seats at the movies in case I need to stand up and stretch midway through, then I can live with that disability. I do wish I didn’t have to, though.

Recently I was sitting at a restaurant, getting a quick bite before heading to choir rehearsal, feeling absolutely awful. My leg hadn’t given me any peace since the night before. I hadn’t slept much and was worn out completely. The thought crossed my mind, I was having a good week. I’d been on a vacation, I’d seen a whole lot of friends over the long weekend. Yet my body’s weaknesses had grabbed hold of my buoyant mood and drowned me.

As I sat and felt melancholy over my salad (BBQ chicken, baguette on the side), I realized the extent to which chronic illnesses have swallowed my self-image. I think about myself like I’m a collection of defective parts whose warranty ran out last year. But, as I learned once I started actually asking my friends, other people don’t see me that way.

Other people get to know me as the funny woman, or the well-read woman, or the woman stuffed full of random facts. The woman who once struck up a conversation at a lunch counter in an airport that turned into a networking opportunity which landed her a job in another state. That woman has knitted mittens with Morse code in the stitches spelling out “I love you.” That woman once responded to news of a terrorist attack by putting on her EMT uniform and rushing into the middle of Boston to help. That woman can lead literally any age group on a scavenger hunt of any museum in New York City. That woman sounds interesting. I wish I knew her better.

I’ve decided to start a blog so I can write about how chronic pain colors my life. But this blog isn’t only going to be about the pain I’m in. I might also write about my ongoing efforts to watch every James Bond movie and catalog the mortality rate for his girlfriends. I might write about my work supporting New Americans and how Trump’s America has changed my job. My sister/roommate (who sleeps in the former living room) may write guest posts with me about the times when our shared life feels like a sitcom. The point is that I have a life that’s both painful and amazing, and I want to share my thoughts on that.

I hope you’ll read them.

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[1] We did not get married after college, but we did share a laugh about it.

[2] I’ll spare you the details of the fourth, in case we have mixed company here – suffice to say it’s something women can get.

[3] Legally, we are not overcrowded, because overcrowding means there is more than one person per room in the apartment. We, on the other hand, have 1.5 person per bedroom.