Posts Tagged ‘going public’

Uphill After an Ice Storm Without Ice-Storm-Appropriate Footware


Tomorrow, an article is coming out about my family and our gene written by an amazing investigative journalist – but I’m not supposed to tell you who it is – like that time I was on the Ricki Lake Show and I couldn’t tell anyone because they wanted it to be a secret. (That show got canceled. I see no lessons have been learned.) On Sunday I am giving a Tedx Talk at the TedXGowanus about my family and what it means to be a founder population for a one-in-a-billion mutation.


I’ve been trying to get a platform for this story for 5 years – as anyone with a rare disease will tell you – because my sister and I are in the fight of our lives for resources and attention. But this moment in time (and also yesterday’s blizzard) has me thinking about something that happened to me almost 20 years ago. It feels almost like it was a parable that was designed for exactly this moment.

It begins with an ice storm – 

I was going to college in Boston, which is where many of us first become familiar with the weather condition known as the “ice storm.” At the time of this incident, I knew about ice storms, enjoyed photographing the way the light glinted off an ice-encased tree branch or walkway, and generally liked when they warranted a snow day in particular because of an ice-encased walkway. So I was not, in this moment, uninitiated.

Tufts University: The offending pathway is to the left of these very steps.

On this brisk afternoon, I was making my way across campus. I know I wasn’t wearing ice-storm-appropriate footwear because…well, hang on…we’re getting to that.

My footwear was not a vanity selection, because I am a lot of things, but vain-about-my-footwear is not one of them. Chances are, I had opted for whatever shoes were not covered in my collegiate hoarding problem. Seriously – ask college friends – there had to be dead cat carcasses under that mound of clothes, mostly-empty food containers and pre-internet papers –  in 20-year-old Joselin’s dorm room.

Eventually on my walk, I arrived at a sort of crossroads: The gateway at College Avenue, across the street from the Engineering Building. I lived around the corner from these steps, to the right. Now, this gateway possessed three pathways. The main one took you down a wide set of campus-regulated de-iced steps to a broad, double-doored gate at its bottom. To either side, narrow cement pathways lead down, each to its own single gated doorway.

I always took the path to the right because it saved me fifteen steps getting home and to a heavy pot and cigarette smoker, those fifteen steps are meaningful. On this day, in those shoes, I should have made a different choice. I should have taken the marginally de-iced central pathway. But instead I made what will heretofore be known as:

Awesome Decision #1.

As I took my first treacherous step down the icy passage, I could not yet know that all hell was about to break loose in my just-post-teen-years, like Dylan breaking up with Brenda for Kelly on 90210, except on ice and without kissing.

The good news for my late-adolescent humiliation spectrum was that I was basically alone. There wasn’t anyone around. Classes that hour had not yet ended when I slipped on the path for the first time, then slipped a few more times getting up again. But eventually I figured out how to use the momentum of my slipping to at least careen in the right direction. I was so completely focused on the ice immediately in front of me, that I didn’t notice, as I slipped and fell and slipped getting up only to fall again, that the gate at the bottom was shut…and locked…with a chain.

This is roughly what I looked at the time, except in a puffier coat.

As I stood staring at the locked gate – there to warn people who might think to walk up – that the path was in fact frozen and unnavigable (thanks for the heads up!), I was near tears.

I had two choices. I could climb across to the central gate, but that would involve scaling ice covered bushes and eventually a brick wall to get onto the steps and out the main gate. Or I could climb back up the path from where I’d so recently – and daintily – fallen.

I decided to climb back up. A decision we will now call:

Awesome Decision #2.

To be clear, there was no climbing. “Climbing” invokes an image of a body, nimbly hoisting oneself using the actual muscles of the miraculous human form. I was crawling. And mostly completely at the mercy of ice and gravity. So like, up an inch, down a foot.

Now, this would have been fine, or at least a mere tree-falling-in-the-woods personal koan, if classes could have stayed in session for like the rest of the day. I would have continued my slow and steady momentum, unfettered. But then a literal flood of biblical proportions made up of an entire student body appeared from every direction.

So, I did what any cool kid would do. I stood up and pretended like suddenly all the ice had melted and I was going to get back to the top of the hill like a civilized human being. One foot in front of the…WHOASHIIIITTTT!!!!

So, now, this nightmare is suddenly happening – with an audience. I am slipping and clawing and occasionally shouting out expletives beyond my physical control. I am praying that I don’t break anything as I eat pavement to both my left and then to my right. I pray that I don’t cry and that no one asks me if I need any help. Actually, mostly I just pray, probably out loud, that no one notices (that Jerry Lewis is performing some physical comedy to his or her immediate right). But I am not invisible. So everyone notices.

Not to put too fine a point on my metaphor but up until now, my family has been slipping up our own icy medical pathways and falling back down again in relative privacy. So it’s scary.

Going public is really scary.

Eventually I literally crawled my way back up to the top of the path, hands and knees, and the silent admonishment of my peers – or maybe it was their silent glee – makes me in turn horrified that this actually happened, and also (thankfully) on occasion, deeply, deeply amused.

So, I shook myself off without meeting a single eye and paraded casually down and out the main gate.

I did what I thought I had to do to get home that day. And I made it home. No broken bones, no permanent scars. And a funny little inside joke I have with myself (and now you, person who accidentally got tricked into reading this blog). It wasn’t graceful. It wasn’t cool. But it makes me wonder, if I had asked for help that day when I really needed it, would I feel better about it having happened…or worse?

I don’t know.

I guess I’ll have to get back to you…