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VOICE OF THE CURE

Dear Friends,

I received an email this evening telling me that a quadriplegic friend of mine died early this morning. He was only 32.

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There's a long pause here to reflect what I was feeling when I read the message.

I don't know the circumstances surrounding his death, but I don't really have to know that. In some way, his injury was the cause - whether directly or indirectly. The question I’ve been asking myself all day today is: do you love your fellow SCI folks?

I include family members without injuries as 'folks’. Not just because I'm one of those, but also because I assume we all know an injury happens to the family. Normally, when I tell a personal story in one of these posts it involves my son, Gabe, and our family.  But this time it involves a friend.

When I first received the email, I was shocked and saddened; then, in a strange and subtle way I somehow felt responsible. Not responsibility in the sense that I'm somehow at fault, or even that our advocacy efforts have not delivered the cures that may have staved off his untimely death. My feeling of responsibility comes in the form of a sense of family. He is a part of my family of SCI folks - and I love my family. Of course I love my son and it’s that love that drives me to advocate for cures. But my reaction to my friend's death makes me realize that because I love my son, I kind of have to love everyone.

I called my friends who know him better than I, and we told some stories about him, cried a little, laughed a bit and held each other in love and solidarity as best as can be done over the phone. When I hung up the phone I again reflected on that question: do you love your fellow SCI folks? I recognized that earlier feeling of responsibility as the answer. Yes I do.

I’m meditating on this question of love because I believe that that's what this effort to find cures is all about. I could get angry in response to his death and become even more adversarial than I sometimes am in this advocacy work. But I realize that anger wants to tear things down, when what we want is to build.

And love wants to build.

But don't misunderstand my use of the word love. Love here, is not soft or timid. Love is hard. Love is resilient. Love can’t be thwarted. Sometimes it’s forceful, but love is always building. In this case it’s building a wide bridge - one we can use to cross from the world we know to the one that could be.

And I think we want what this love - this unique, persistent love - wants. We want to build a movement that is fueled by our love for one another, our empathy for what each of us knows that no one else does, and the knowledge necessary to get where we all want to go. People with SCI. Moms. Dads. Sisters. Brothers. Spouses. Kids. Friends and Lovers.

And building this movement, together, constantly brings me back to that initial question: do we love our community? I think we do, hard as the road can be. So let's get busy because time's a wasting.

 
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