Dream With Us
A couple months ago I was in Miami, preparing for our annual Working 2 Walk symposium. I had lots of meetings with potential sponsors, community members and researchers. And it all went well. But something happened while I was there: I had this odd, perplexing dream. A dream so clarifying and vivid that I couldn’t shake it’s impact. I’ve wrestled with it’s meaning for over a month, and have come to think it holds an encouraging message for those of us in the SCI community. Therefore, as unconventional as it may seem for me to give you guarded passage into my psyche, here goes.
The morning of my first meeting with Dr. Kim Anderson at the Miami Project, I woke in my hotel room from a clear and vivid dream of meeting with Kim dressed in a coral colored polyester outfit (Kim swears she does not own a coral colored outfit but you’ll have to ask her to be sure) at the Miami Project. In the dream she was giving me a tour of the facility. We ended up in a large conference room where she had invited clinicians and researchers to meet with me.
In the conference room, there were two very important and influential researchers that she wanted me to meet: The Pencey Brothers. The brothers were identical twins, bald and approaching old age. But the most distinguishing and memorable characteristic was that one was blind in the left eye and the other was blind in the right. Shortly after introducing me and before we could get beyond the perfunctory pleasantries, Kim got out of her wheelchair and walked out of the room.
Then I woke up.
I’ve spent the last month or so trying to figure out how to interpret this dream. It wasn’t until this past weekend that I landed on something that at the very least resonates with me. And I hope with you.
Last weekend I was driving to our monthly SCI Peer Group meeting. A song of my son’s came across my iTunes playlist that’s called: Never Been To NYC. It’s a piano instrumental that he improvised during a recording session in a friend of mine’s home studio. This was just a few months before his injury, after which he lost the ability to play (with his hands). My friend asked if he had anything else to record and Gabe (pictured left) offered up this beautiful little piece that had been bouncing around in his head. And it was while listening to this improvisation that an epiphany was delivered to me.
In order to improvise well you first need to know the rules; but, paradoxically, not to follow them. You learn the rules so that you can break them. The better you get at improvising the more rules you come up against to bend or break in order to get where you need to go. This translates not just to great art, but also to great relationships, to a great life — and I’ll humbly suggest, to great science. And here’s the connection to my dream: The left eye-right eye of my dream scientists’ represent the left-brain and right-brain metaphor. The data or rules of the left brain — while essential — fall short without the right brain’s creative or improvisational bent. And of course this applies to both the cycle of figuring out how to improvise a life with a SCI as well as figuring out how to cure it.
Now here’s the kicker. If you’re still with me, you can interpret this in a number of ways which all may very well be valid. Pure researchers need clinician researchers (those who see patients too). Scientists need clinicians. Scientists need to challenge the conventions of their own science, and so on. But while they are quite good at creatively figuring out what the rules are, not enough apply their improvisational skills to the rules of the chronic injury. I offer that the scientists need us, maybe more than they might think, because we (those with an injury) are the rule. We are the instrument that is being played, not the rodent, the monkey, the pig, or the petri dish. It’s us. They need to know the rules and we need them to break those rules.
But if they are going to listen to us, then we need to speak. And this is what U2FP is here to do. I hope you’ll join us in speaking up.
Dream with us. Become a monthly donor (at any level) and invest in this work to expedite cures for paralysis.
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Our Advocates in Pennsylvania continue their appeal to pass the PA Spinal Cord Disability Act. Please like our PA CAN (Cure Advocacy Network) Facebook page or go to their website to find out how you can help. We are going to be posting a note that lists the legislators we need you to call and email. Also, please sign our petition, share and ask your friends to sign as well.
In the hope that it will inspire you, our Minnesota effort just passed with a $5 million increase to the MN SCI TBI Research Grant Program (awaiting the Governor’s signature). I’m confident that we can pass the PA Bill as well, but we’ll need you to email or make calls. This is how we speak up and how we can dream together.