It is April – a week after my appointment with the geneticist, and I am meeting with the surgeon and his entourage again. I am once again standing in a pair of paper shorts and I find myself chattily filling in yet another doctor about my medical odyssey. The surgeon listens, seemingly wide-eyed, because this story is nothing if not interesting.
You’re not the typical EDS patient, the physician’s assistant, Jonathan, interrupts, With our other EDS patients, the surgeries fail. Your right hip is still intact. You had a great outcome! Anyway, I thought you had Rheumatoid Arthritis.
They think I was misdiagnosed, I say, aloud. In my head I say, Shut up, Jonathan. This is my story.
That’s the other thing about All This: I have spent ten years being told that I have RA; injecting myself with Chinese hamster ovary derivatives; taking chemotherapy drugs; doing all the weird and horrible shit RA patients are supposed to do. In the beginning, I did it with a sort of maniacal devotion to my ex husband, who told me he couldn’t love a woman with “claws.” He was so concerned about my appearance that we did everything it took to prevent my joints from ever becoming deformed. Then it just became habit – if you’ve ever sunk a syringe into your thigh, it becomes easier over time until eventually, you don’t even notice how freaked out people are by the sharps container on your kitchen counter.
Apparently, I didn’t need to do any of it. I am not suggesting I ever wanted to have RA, nor am I suggesting that I miss it, but it suddenly feels very weird to Be One Thing for a decade, and then suddenly Not Be That Thing. To have to live your life with a set of clear and somewhat onerous limitations, then poof, one day that all disappears.
The PA nods when I say I was misdiagnosed, because as he speaks, I am bending my thumb all the way back to my wrist in order to make a point.
The surgeon and I schedule a reconstruction of my left hip for Monday, May 9th, and I decide to run a 5k two weeks before surgery because I do not know if I will ever run again.
Before my first hip reconstruction, I ran the Big Sur Marathon – a bucket-list race – because the Pacific Coast was where I lived out the last days of my first marriage, and the first days of something else, and it was where I trained for the 2009 NYC Marathon. It was an incredibly stupid idea, but I figured, if I never ran another marathon, running a slow, painful race in the place where my Whole Heart resided was the way I wanted go out. My bestie eee was there, and so was Smplefy, though I barely saw either. I wanted to have Highway 1 as my Triumphant Finish, even if it meant crawling across the line (which I did).
I have no special affinity for the Jersey Shore, but it is a friend’s birthday weekend, and we are running together as a group and having a fun dinner after. If I never run another race, I want to remember that my running career ended with my toes in the sand, on the shores of both the Pacific and the Atlantic, with the people I love all around me. We are all confident that if it were just the hip I would be back up and running by the Autumn. But since we do not know exactly which gene is the faulty one yet, I do not want to expect to be running by September and then find that I have the type of EDS where my vascular system might rupture at any moment.
As a matter of course, I do not tell anyone I am about to have another joint surgery, except for a handful of close friends. While I know exactly what to expect with a hip repair, I do not know what I am getting myself into with The Rest of This; I barely know what EDS is. I do not have a lot of answers for myself, let alone to give other people, and I hate the idea of being challenged or grilled by well-meaning or pushy friends and family. I am dreading any/all of the following:
-This could have been prevented if you’d just stopped running!
-You shouldn’t worry about this, and you and Paul should just be focused on having a family now!
-So how did you do this to yourself?
-Why did your doctor misdiagnose you?
-Tell me more about [This Thing That I Know Little to Nothing About].
I play out each comment in my head, trying it on for size – trying to separate curiosity from blame. I am afraid of answering wrong; I am afraid of looking like a fool because for a decade, I so confidently managed the RA I thought I had, and told people how they should manage their RA. I thought I knew what I was doing.
I want to be healthy; I do not want to get hurt again.
I want you to be happy.
I want that too.
So I run the race on the Jersey Shore, and I take my shoes off in the sand, and if it is my Last Race Ever, I may not be fully satisfied, but I will be happy.