Sunday, May 11, 2014

Policy Wonks

There are rare and precious pockets of time in our lives -- time insulated from reality and which create a simpler, focused alternate reality with a select community of membership. For me, I think the first time I recognized that unique brand of experience was "6th Grade Camp" (a week-long sleep-away camp when I was in [you guessed it] 6th Grade). A number of summer programs I did in high school would go on the list as well; freshman year of college; Jamie and my honeymoon in St. John;  the summer Wyatt was born (during which Jamie was on maternity leave and I was on unemployment after my teaching position was eliminated), since we had nothing to do except take strolls down the road, sit by the pond, and focus on being freaked out by parenthood; college reunions. And on some level I would even count my months in rehab as one of these pockets, for all the relationships I nurtured and the focus I was allowed on healing.

This past week in Washington, D.C., was another such chance to shed some of the concerns of daily living (don't know how I survived three days without being screamed at or screaming at anyone), be pampered by a hotel microcosm and enjoy having all my needs met within a square mile radius of the lobby (if not in the lobby).

We, the members of Brain Injury Voices, were afforded the opportunity to focus our energy and, yes, our voices on speaking about very personal issues with people we could normally not easily access. A very busy Sunday through Tuesday shaped up thusly:

  • Flew in Sunday afternoon. Air travel gave us a good opportunity to get our routine coordinated -- me in a wheelchair while my left-hand entourage cared for my luggage (I'm one of the most physically disabled of the group).
  • Sunday dinner in one of the Washington Hilton's excellent restaurants (paid for through the vast generosity of many donations).
  • Early Monday morning breakfast and Hospital Award for Volunteer Excellence (HAVE) ceremony with members of the American Hospital Association. While delivered right in the hotel, this event did give me my first opportunity to ride on an escalator since my stroke. That personal achievement and our group's award are emblematic of all we've been able to accomplish in spite of (and because of) our brain injuries.
  • Monday's lunch, also courtesy of the AHA, was most noteworthy for the keynote speech by "pay czar" Kenneth Feinberg (more about that another time).
  • Monday afternoon gave me and some members of the group a chance to talk with a representative of a disability insurance Political Action Committee. While I may have to walk a thin line of conflicted interest when it comes to disability advocacy, I've realized more and more how important and advantageous my unique perspective (as both a disability insurance claimant and employee) 
  • can be in influencing both public and private policy changes on brain injury, disability income protection, and return to work.
  • Monday dinner was with the Brain Injury Association of America, which shed a lot of light on the need for work to bring attention to some of the unique challenges of brain injury (an often "invisible" condition) and build awareness toward easing those challenges, including the reauthorization of the TBI Act (which I didn't even know existed).
  • Tuesday was our most politically-charged day -- a visit to Capitol Hill and meetings with staff from Senator Angus King's (I-ME) and Representative Chellie Pingree's (D-ME) offices, with about a mile-long walk and secret subway ride through the Congressional catacombs between lobbying sessions. These conversations renewed my faith in our political system.

All of this hard work came after equally-difficult weeks of fundraising and planning (though, fortunately -- because the itinerary was mapped out by brain injury strategists -- there was plenty of rest time built into the agenda and ample accommodations made for and support provided to those of us who needed it).

Why is it we "practice" things like politics, law, medicine, and religion? Maybe because they're all activities without definitively successful outcomes? Parenting should definitely be added to that list. Hell, living, period, should be on the list. I, for one, am a practicing human being.
My first attempt at a "Scalpie" in Senator King's office (not sure how he procured that sign).

Then I thought it might look better without the nose.
Proof of Legitimacy

We got everything we could have wished for, and more.

Sunday, May 04, 2014

Flying. High now

Guess where I'm blogging you from.

There's Wi-Fi on the plane to Washington, DC, and I have the world's smallest Bluetooth keyboard paired with my smart device.

We'll, I did. Now I'm about to go to sleep in the Washington Hilton on this first night of the Brain Injury Voices Does Washington tour. There's plenty to come and will be plenty to tell, but I'll tell once it comes.

Good night.