Sunday, October 27, 2013

In Blog I Still Trust

This past Tuesday I had the honor and privilege of attending and speaking at the 4th Annual Conference on Defining Moments in Brain Injury. Whenever I am entrenched in this community of which I am an involuntary member, I'm struck by how broad a spectrum Traumatic Brain Injury (TBI) covers. Not that it's a competition, but I believe the term is somewhat skewed toward those who have suffered physical trauma due to an accident and/or impact. Although my injury has been just as physically and emotionally traumatizing (after all, my brain attacked me without provocation), I'm thankful whenever I hear stories like that of the keynote speaker's bicycle accident and subsequent PTSD, that I had the luxury of sleeping through my event.

While I hope to soon share a video of my presentation, I thought I would at least summarize it now in the very medium it covers (how meta).

At around 4 o'clock in the afternoon (unfortunately late for a notoriously-logy audience of brain injury survivors), I was one of two speakers on a panel entitled, Through the Smog with a Dog and a Blog (never mind that where I come from, dawg and blog don't rhyme). The general idea was to present different strategies for brain injury recovery. My co-panelist, Rorie, has trained her service dog, Ziva, to provide stability and retrieval assistance (among other things) after sustaining a brain injury from an icy slip and fall in her driveway. And I bet you thought I was the dog. I'm afraid my contribution was the obvious one. After trying to rally the crowd by regaling them with my college streaking story (relevant since the previous workshop covered humor as a resiliency builder), I started with a mind map of some of the problems/challenges posed by health crises at large and brain injuries in specific:

  • The need to communicate news in an efficient way that doesn't tax patients or family members.
  • The need to seek tangible support from friends and family.
  • The need to feel connected to yourself and others (that's especially true for those with brain injuries, since the condition can be a literal disconnection of neural pathways).
This is the mind map of those basic points:







My solutions, of course, are encapsulated in this blog, which has been the primary source of information about my experience from discovery through catastrophe and recovery (communicated by email or the web, whatever your personal preference and without having to manage who told who what when. It has also been a place to ask for help (decorating, raking, rides, just about anything). We have been so blessed to have so many people who want to help, but it can actually be stressful coming up with tangible requests. And the blog was a great way to manage that. Most important for me -- post-stroke -- the blog was a place for me to find my voice again, figuratively and literally, to re-discover myself, and confirm that I'm still me. Also, to help me be heard when my physical voice cannot carry. My first new-brain blog post (written two weeks after my stroke, one day after arriving at New England Rehab, and one handed on my iPod Touch) is all about reclaiming my rightful place and the importance of the blog in getting me that far in my early recovery. Thankfully, it was also a place for Jamie to connect and vent and plead when she needed to. The other important, unanticipated benefit of the blog has been the opportunity to shed light on what is often an invisible injury (much as I like to show off my scars and brace). I've done that here through my brain scans and by describing the work I've had to do.

While this blog has captured some of the greatest horrors and tragedies of my life, it also embodies some of my greatest triumphs and accomplishments (not least of all an opportunity to share my experiences and make some people laugh in a forum I'd never have had the opportunity to do so if it weren't for my brain cloud).




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