May 30, 2017: Gritty mechanics

Matt and I sent almost fifty text messages to each other on May 30, 2017. We emailed. We even had a phone call thrown in for good measure.

We had plans to make, logistics to coordinate, and schedules to discuss.

Before the long weekend, I said we had one glimmer of hope and we grabbed for it. That sounds easy—and somewhat idealistic—and completely ignores the fact that in order to grab that one chance of hope, we had to fill out paperwork, and beg for overnight shipping, and spend hours waiting on hold. We learned—I learned—that the gritty, all-too-bureaucratic mechanics of grabbing hope look a lot like the daily tasks of an administrative assistant.

On May 30, 2017, we started the two-day process of collecting everything Columbia needed to schedule an initial consultation.

I think I’ve mentioned that the process is tedious. We needed medical records faxed or emailed from Duke, Hackensack, and Morristown. We needed MRI CDs shipped from Hackensack and Duke. We needed pathology slides. (What’s a pathology slide? Without getting too technical, after surgery or biopsy, a piece of the diseased tissue is removed and placed into a glass slide for examination under a microscope. The slide helps confirm a diagnosis. At least it did in Matt’s case in June 2016.)

The slides were the hardest to track down. They were made in Morristown, but at some point, while we were gathering second opinions in 2016, we sent slides to Sloan, Hackensack, and Duke. I vaguely remembering being warned against sending out the slides to too many different doctors, but I no longer recall why that was problematic. That half-remembered warning prompted a dozen text messages and a sarcastic comment or two.

The words for today didn’t come quickly. I reviewed all the emails and text messages, came up with fragments of memories that I pieced together into an account of the day, and then…started scrolling Facebook. The story felt flat. Maybe it’s because I’m writing about data collection, but I think it’s because I can’t stop thinking about where we were two years ago today.

I have a faint idea of how I’ll handle the posts in the upcoming days, to share our 2016 story and remain true to 2017. For now, there’s not much to share about 2016, except this: we weren’t in a good place. We were falling apart and we didn’t know why.

We couldn’t guess the impossible life we were about to enter. We couldn’t understand why it felt like we were already hanging over some edge with no safety net below. I don’t know exactly what we did on May 30, 2016, but I remember the heartache and shame and terror of believing my marriage was dissolving.

When I look back at May 30, 2017, the frustration of trying to get medical release forms emailed, records faxed, and slides overnighted has a prominent spot in my memory. But I also remember emailing pictures of H back and forth, and spending too much time discussing which one was the best to represent him at his pre-school graduation. I remember Matt forwarding me an email he sent to a new friend and rolling my eyes at his recycled jokes, which he was proud to share with a new audience. I remember thinking last year at this time that Matt would have had little patience for graduation pictures, or fifty text messages, or new friends, and look how far we’d come.

On May 30, 2017, I remembering looking back on where we’d been the year before and being grateful for how far we’d come, for how much we’d fought and how much we’d regained.

No shame in admitting I’d be a terrible administrative assistant.


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