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Social Distance - A Twisted Rite of Passage for the SCI Community

Social Distance - A Twisted Rite of Passage for the SCI Community

It’s been a strange few weeks for us here at U2FP, as I’m sure it has been for all of you. The impact of the Covid-19 pandemic and its effect on our lives and work are profound. Our staff and board members are engaging in a number of difficult conversations as we plan and anticipate the unfolding events ahead. 

It started three weeks ago with our decision to cancel in-person meetings for all of our staff; 3 of whom have spinal cord injuries. 

Like many of you, I’ve also received cancellation notices from a couple of SCI meetings that I was planning to attend (and many others I couldn’t attend), as well as the general slowing down of so much of our collaborative work. Understandably, research scientists and clinicians are undergoing significant, if temporary, shifts in their work right now.

Despite all of these adjustments, it really took hold for me when my son (who has a C5 SCI) and I made the decision to practice “social distance” from one another. 

My wife still works a few days a week in an Emergency Department, so there’s no realistic way for me to ensure that I wouldn’t expose him to the virus. This was a difficult - but correct - decision for us to make, especially during this time of widespread isolation. 

But it got me thinking of all of you. I hope you all are having similar difficult conversations in order to protect yourselves. If you haven’t yet, please do. 

So many of us in the SCI community have had plenty of experience with this so-called ‘social distance’ (I prefer the phrase ‘physical distancing’) over the course of the injury. It’s a kind of twisted rite of passage that has both caused significant pain and significant strength. Of course, as a family member my ‘physical distancing’ was different; short-lived and far less comprehensive than my son’s. But most of you - in a weird irony - have already lived through the fear, anxiety, pain and loneliness that comes in tow. And some of you live with it still. 

So I encourage you all to use that earned strength in the coming months. Use this time of necessary physical distancing to strengthen your social connections however you can. 

  • Talk with each other. 
  • Share with each other. 
  • Create connections where they weren’t before. 
  • Support each other.

And to all our partners and friends in the research community: thank you for your work, especially as it becomes increasingly difficult within your institutions.

And to our clinician friends and partners, whose work is especially essential right now: thank you and stay safe!

In our most recent staff meeting via video conference, after sharing all of our physical isolation stories (some funny, some not), we spent much of the time exploring how we can best use this slow-down to continue and grow the influence of our work: to cure paralysis through advocacy, education, and support for research. 

You’ll be hearing from and seeing (via video) each of our staff members in the coming weeks. They’ll be sharing their experiences of quarantining, what they’re working on and what they’re thinking about. So, stay tuned.

The paradox for us at U2FP is how this health crisis is ramping up our resolve to work for cures despite so much of the world slowing down all around us. Our community - the SCI Community - is at an altogether different level of risk. That needs to change. And we can and will continue to change it together.