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Why am I running a marathon?

May 18, 2012

Because it’s there.

No, that’s not it at all. I never do anything for such a deep and noble reason. I do like to test my endurance; I’ve trained for a marathon, I’ve done sprint and olympic triathlons and even toyed with the idea of a half-ironman.

But this time I’m doing it because I’m haunted.  Not by ghosts or goblins or childhood traumas, but by a piece of paper.  It sits safely and benignly in a thick manilla folder amongst hundreds of manila folders in my doctor’s office.  Dated April 2010, it says:

Diagnosis: Severe rheumatoid arthritis…[she] is at high risk for total disability unless aggressive treatment is initiated.

High risk of total disability.  High. risk. of. total. disability. This is the phrase that runs like a train, churning through the back of my mind haunting me and echoing back as I make decisions:  what food to eat, how long to sleep, what medicine to take, how much attention to give my body, my mind, my life.

And it’s not an abstract idea. Two years ago I watched my body in a slow descent I never thought possible: first my feet, then my shoulders, then my fingers, then my knees.  Then, in a period of two weeks, my body collapsed in on itself; I watched as almost daily more joints succumbed, finally landing in the ER as my ribs (who knew there were joints there?) started to flare and it hurt to breathe.

Before finding relief, I needed help getting out of chair; rolling over in bed took several minutes as I moved in little incremental movements, relying on muscles more than bones. If I happened to wake up in the middle of the night, I’d force myself to go to the bathroom as I usually needed a 20 minute lead time to get out of bed and didn’t want to be stuck in an emergency.  And getting out of bed wasn’t the end of the ordeal.  Getting up from a toilet seat usually included me rocking and then throwing myself at the bathtub, then using my elbows and my legs spread eagle as I inched my legs back to standing.

I was in denial about it for a shockingly long time. I remember sitting in my car in the driveway, talking to my mom, asking her if she really thought I was “that sick.”  Sick people cough and sneeze, don’t they? Sick people have tumors or constant pain (RA usually gives you a surprising amount of relief during the day, enough to make you think you imagined your inability to roll over the night before).

But then, one day as my husband was folding laundry and I was laying on the sofa, I said something snarky and he tossed a sock at my face. It stayed there. No body part worked enough to remove it. I had to lay there and wait for him to come take it off.

I’ve taken a sip of “total disability” and live in fear of its return.  I spend a lot of time scanning my body, testing what feels good, what’s hurt, what’s hurt for awhile, and what has hurt for too long?  How does that compare to where I am in my infusion cycle?

So why am I running a marathon?

Because I’m running in the other direction of “total disability.” Every step, every mile, every goal I reach is running far, far away from that little piece of paper. I imagine it as giving that diagnosis and everything it haunts with me the big, one-fingered salute over my shoulder as it eats the gravel my sneakers kick up.

And yeah, it’s there.


(sorry for the blurry picture, I felt like a fugitive spy taking a photo of my medical record)


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