Mission One: Complete
Sep 17, 2018 —
The box was too big for Matt's car, so we tried my moms car--a larger sedan. Still it wouldn't fit. So finally we had to put it in the bed of my step-dads old Toyota truck. I say 'we' but who am I kidding? Matt did all the literal heavy lifting. On the way to Kinko's, those Southern storm clouds were darkening across the Northern half of the sky. A small part of me worried it'd start to rain and the box would get wet. But a bigger part of me felt more alive and hopeful than I'd felt in a while. Finally this thing was happening. Let me backtrack.
On Friday morning, (Sept 14th), I sat at my type writer fuzzy-headed after a crappy night of painsomnia and two hours sleep. But I was determined to finish this letter and write the words I felt Francis Collins would ultimately read. Something about that day, despite my feeling like a rotting banana, told me this long-ago set goal needed to happen without any further delay. Time for that damn ginormous box that's been in my living room for months to begin the vital journey to its' intended recipient in Bethesda, Maryland. (The NIH) (Francis Collins) (You get it)
This all took much longer than anticipated-- to finish this part of the project, which I set out to do forever ago. I have to thank you all for being patient, but I want you to know your support and signing of this petition means A LOT, not just in the way of solidarity but in practicality. I truly believe somehow, this will reach a spot, somewhere, that hasn't been touched on our decision-makers end.
Anyway, it was time to finish this part of the job.
The box was filled with two tall stacks of paperfirst, comprising more than 2,300 pages of names. These were our nearly 51,000 signatures printed out. Cushioning and surrounding those bricks of support, were roughly 400 empty pill bottles I've been hanging onto over the years. For months I've painstakingly crossed out all the personal information on every bottle except my name. But that part could be done laying down, not difficult, just time consuming.
On top of that was a brown box, just about the size of a cereal box. Inside were nearly 500 pages of your words--everyone that signed who had something to say. Voices of support for change, personal stories, loved ones stories, people sick for decades still holding out hope, and people sick at the end of their rope. I was surprised how poignant and succinct so many of these messages were. These were the voices our government needed to see and hear (an ongoing need), so that box of papers went on top.
Two envelopes were attached to that box. One was the letter written on my typewriter that looked like a telegram to the president in the 40's on the status of the war. (Not far off, hardy har.) I trusted that the right words emerge out of so many angles I considered taking.
The second letter came from a really incredible, gift of a friend, Matt. He's my (our) healthy ally that has made a lot of this possible. His letter was poignant in a different way, in that it came from someone on the outside of the disease looking in. He watched the toll it took on someone else. Matt also knew about Collins work dating back to the 70's, and he appealed to some of his scientific traditions from the past. It was really an amazing letter, and I will post it in a separate update.
The point is, we did it. We all did it. We hit more than 50,000 signatures. People spoke up. The pill bottles piled up. Our letters were written. And everything made it's way into that box. And on Friday the whole kit and caboodle was taped up, driven in the bed of a truck to Kinko's, and sent to the head of the NIH. Just like that.
With help, we materialized on paper what's been happening essentially all online. This was one of my points in sending a box with everything printed. I wanted something people at the NIH could feel the literal weight of, could touch and carry. Something concrete they could hold in their hands, see the thousands of names demanding change in stacks, and read our actual stories on paper.
This was all possible because of the digital world we live in. But putting it all on paper somehow made this reality, our stories and our voices come to life. It took on a visceral urgency in a way that names and numbers on a screen can't do.
My other point in all of this was to disrupt in a way that was not easily ignored. I wanted to get our demand for changes and personal messages delivered in an unconventional way--that for instance, couldn't be sent to spam. So thank you for providing me with material to disrupt with. A 24 x 24 box weighing in at just under 50 lbs should at least spark some curiosity on their end. So long as someone opens that box, I think something important is going to transpire.
I want you all to know, this mission is far from over. The petition will stay open and running for as long possible. Sending this obnoxiously sized box with the things it contained was just one attempt at reaching the NIH. It's certainly not the last, and I realize it may not work. But to really try always involves taking a risk. If this doesn't work as intended, I can't see it as a failure. It will only make me try harder, and rethink of our next strategy.
So. 48.8 pounds. $100. And a lot of hope and prayers this box reaches the target. Thank you to my healthy ally Matt, for doing so much heavy lifting in all this. And thank YOU, if you're still reading. For signing, sharing, speaking up, and helping demand change.
Out of everything, we cannot underestimate the power of our voices, and I intend for this petition to stay open as one channel where we can come together and say what needs saying. Thank you all who have and continue to.
Much love, (and hope)
Mary, Monty, Matt & Co.
*Sorry pic is sideways, limited orientation for photos for some reason. Also, I'll post a video soon that might better explain what we did. Yall rock. More to come.
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