September is Spinal Cord Injury Awareness Month. But what does the word ‘awareness’ mean? The Merriam-Webster dictionary defines awareness as “the quality or state of being aware: knowledge and understanding that something is happening or exists.” Pretty obvious, right? But to me that isn’t enough. What I always get caught up on is whether or not that awareness changes you, and - more importantly - how it changes your behavior.
That’s why I always think of proximity in relation to awareness. I’m of the opinion that proximity to this injury is the critical piece that’s still not spoken about enough.
I have a son with a SCI, so my proximity to an awareness of spinal cord injury is pretty damn close. Family close. Intimate. The further away you get from this awareness-proximity relationship, the harder it is to care as deeply about the impact of this injury. I’m not saying you have to have an injured family member to care. But ask yourself: if you were to wake up in a world turned upside down by some disaster affecting your family, where would you go and who would you protect first?
Disaster themes are an apt metaphor here. I’m thinking of the Netflix show, Stranger Things. Like the Walking Dead, or the Matrix, Stranger Things is a story about a community in distress. And how that community acts to survive, care for each other, and protect each other in the midst of a reality that no one else understands: an Upside Down world that no one is even aware of. I don’t think it’s too much of a leap to say that spinal cord injury is our Stranger Things.
In that show, one kid has a traumatic experience that thrusts him into the nether world of the ‘Upside Down’. Then, the people around him (his family and community) respond and inject themselves into this alternate reality to help him make sense of it and get out. Sound familiar?
Everybody else is going about their business, doing what they do. And very few people know what happens in our Upside Down world. But of course, we do. Because we have the injury, or love and/or know someone who has a SCI. That’s the easy part. The harder part is finding sufficient awareness to see that we are all connected and this injury affects all of us.
Our job at U2FP is to pull as many people as possible into this Upside Down world of SCI. To get doctors, clinicians, scientists, companies, funders, regulators and community members to inject themselves more deeply into the dirty details of this alternate SCI reality; to speak frankly and honestly about the challenges of living with a SCI as well as treating this injury. And then we try to keep all of these stakeholders coming back, bringing their colleagues and friends so we can form a growing alliance.
This is not just U2FP’s job. It's also yours. Who is close to you that needs a nudge to better understand the realities of this Upside Down? What can you do, say, or express that will raise awareness but also transform you, them and grow a movement for change.
Please join us.
PS - I will be doing my part to raise awareness and support for our Upside Down by running Rightside Up in the Medtronic Twin Cities 10 mile race. Please consider making a donation on my fundraising page to get this old man to the finish line
PSS - Consider increasing your proximity to solutions for SCI at our 18th Annual Science & Advocacy Symposium on October 20-21 at the Hilton Minneapolis. Hear the latest cure science and advocacy strategies from a wide array of stakeholders. We've still got discounts available, which you can find here on our registration page.