Sunday, April 28, 2013

Voices in our Heads

Yesterday, I attended a brain injury conference at the rehab.

While I tend to be cynical about intentionally-uplifting events (especially if they rhyme), I ended up getting a great deal out of the day in large part due to the opportunity to interact with a group of peers I have not distinctly sought to embrace – other brain injury survivors. As much as I have long been struck by the nuance and variety of recovery experiences (as noted simply by witnessing a small sample of patients at the rehab), this was the first time I was able to connect myself with such a varied group – especially given the fact that the term "brain injury" can cover everything from stroke to physical trauma (e.g. car accidents, falls).

The morning workshop focused on "surviving" as it concerns common problems related to TBI:

  • fatigue
  • memory issues
  • depression/anxiety

The afternoon workshop covered "thriving" from the perspective of building "resiliency" through:
  • positivity
  • living to learn
  • opening your heart
  • taking care of yourself
  • hanging onto humor

One way I would summarize the event is to paraphrase and expand on Edmund Kean's adage (or, possibly someone else's):

Dying is easy. Living (including comedy) is hard.

I'd also say that thriving in one's life is a matter of degrees and certainly not limited to those of us elite enough to have suffered a brain injury.

By that I mean that my while I have notable PS (post-stroke) accomplishments...:

  • going home from the hospital
  • Finding new ways to relate to my kids
  • walking with a straight cane
  • returning to work
  • walking with no cane (infrequently)
  • passing my driver's test
...those major accomplishments don't overshadow the smaller ones – like the fact that I put on a button-down shirt for the conference (with my one good hand!) and did not require a spotter.

One of the strongest common themes I detected in people's recoveries – regardless of the cause – was the need to rediscover, reclaim, and/or re-invent one's identity after brain injury. Once again, I have to count myself as lucky in not ever particularly losing my sense of self. There have certainly been times when I've felt like I've needed to prove myself over again and live up to my former life, even while trying to grow beyond the confines of that identity; but I still know who I was (BS) and am (PS).

Another consistent theme was the fact that brain injuries are not often visible. They may be more apparent for some with considerable speech or memory issues, even a gaping head wound, but I know I've struggled with the story I tell with my personal appearance:

  • I keep my hair cut short, in part to wear my cranial scars with pride:
    • This gives an accurate depiction that I have suffered some sort of physical trauma (via surgery).
    • But also gives the false impression that I may have sustained a head injury in an accident.
  • I often wear my leg brace on the outside of my pants:
    • This provides some explanation for my cane and limp.
    • But also gives the false impression that there's something wrong with my leg.

Why should I care what people think is "wrong" with me? I shouldn't and ultimately don't. But I think I do on some level want to legitimate my slow pace and preferential parking. Part of the value of my story comes from others' understanding of how I got from there to here. Certainly, if anyone asks (which they rarely do, even kids), I'm happy to explain.

It was important and useful to share those common struggles, and I hope to continue doing so through a support group run by the same organization – Brain Injury Voices. As a networking opportunity, the event gave me the chance to praise the value of all my various support systems – whether family, friends, co-workers, or this very virtual space I've carved out. It's my hope in the coming months to volunteer at the rehab and promote just these sort of social networking tools and outlets (Facebook and blogging) as a way to help those struggling through challenges like mine feel little less disconnected.

Beyond that technological gravitation, I was reminded of the potential use of Google Glass to support those who may have memory issues caused by brain injury (imagine if you could be told by your glasses where you had left your checkbook or keys hours earlier). Not sure what would happen if you can't find your glasses, though.

my other idea for a memorization compensation technique (though, again, I have been spared some of that deficit)  is to turn recall into a bit of a trick and game. God knows I get no end of pleasure out of remembering things that Jamie doesn't, simply because it infuriates her so, though she often blames it on her own brain injury ( "Mommy Brain").

Contributing to a conversation in a large group like this also reminded me how much I've changed as I've aged. In my youth I was shy and reserved and rarely spoke up in class; but at some point in my 30s, that changed. I specifically remember a first aid class I took in 2004, where I fully realized my desire and inclination toward being a smart ass. At one point I remember raising my hand and asking the unsuspecting teacher when I should pound on my CPR dummy's chest and scream to the sky, "Don't you die on me!" (Once again proving that everything I know, I learned from TV, probably M*A*S*H).

At work I am known to be first in line for "self-check moments" in order to keep from interrupting others and blurting out some snarky remark (it doesn't always stop me). It is certainly not my intention to be disrespectful but merely to lighten the mood, and I attribute it more to a compulsion to follow the tenets of comedy (where timing is everything), more than any impulse control issues related to my stroke.

Needless to say, while always being courteous and raising my hand before I spoke (though in a room full of brain-damaged people, the moderator has to be quick to call on people before they lose their train of thought), I was not bashful about expressing myself; and I like to think I positively contributed to the conversation.

I heard a motivational speaker once say that people fear public speaking more than death. I think I was once one of those people. Interestingly, I suppose the fear of both those pastimes could be attributed to fear of judgment; though I do periodically console myself now into brushing through more mundane panic-inducing situations like speaking in front of a group with the thought that I have in many ways already met my maker and that the opinions of a group of people (which I suppose would also include the readers of this blog) pales in comparison to loss of the ability to express those thoughts at all.

Continuing on the line of paying it forward, I've been extremely intrigued by the recent announcement of the NIH BRAIN initiative, though my offer to volunteer my services has as yet gone unanswered. All I know is that I find my brain an interesting hunting ground and would relish the opportunity to have it scanned with an eye toward healing and capability, instead of for the damage and anomalies for which it has generally been analyzed over the past few years. I'm no doctor, but I do feel a certain amount of expertise when it comes to how my brain works and do have the somewhat unusual advantage of available images (both CAT scans and EEGs) from before and after my stroke. Though my neuroplastic healing is as much faith as it is science, I would like to see an objective picture of how my neurons have rerouted and regrown that matches how I feel my brain has healed.

I know I'm kicking my kids asses at National Geographic Channel's new series, Brain Games. So that feels pretty good and must count for something. Coming home from the conference gave me the opportunity to once again talk to Wyatt about  aneurysms, strokes, seizures, the different jobs parts of our brains perform, and comas. That never feels particularly good. His brain's had to mull far more dark subjects than mine ever did at his age. My hope is only that he grows up to have a balanced perspective on life -- once the brain damage of being 8 wears off.