(Braintree, MA) Some days you just can’t help but feel as though you are a stranger in a strange land.

Serving the bleeding disorders community as HFA’s Director of Public Policy for State Affairs means spending timing far flung corners of this country. It is an honor to come to your hometown and help actualize a grassroots political agenda that will serve the needs of the community.

Some days however; present greater challenges than others. Last week, I had the distinct honor of travelling to the Research Triangle for Hemophilia of North Carolina (HNC). The chapter聽 under the leadership of Sue Cowell, Executive Director, Richard Atwood,聽 Board President and Leonard Poe,聽 Advocacy Chair all deserve a hardy congratulations for assembling a thoughtful advocacy program.

NC Advocates in Action!

NC Advocates in Action!

As with all things in life, there are those things that occur which one simply cannot plan for. So I got to my hotel and as I was checking in gave the clerk my charge card, after wrangling the card reader, he turned to me in a hushed tone and explained that my credit card had been rejected. Upon my return back in Boston, I found that the card had been somehow de-magnified, presumably while in the air or at the airport. And had this been the only obstacle I encountered during my stay in Raleigh, I might not have given it much thought, or chosen to share it with you in this space. BUT, it wasn’t… and so, I am.

In trying to get to the capitol, the bus had trouble with its hydraulic lift, keeping community members marooned at the hotel. The driver grappled with the gear box then finally called his dispatcher. The dispatcher sent a second bus, only to discover that it wasn’t handicapped accessible. Two long hours later, we were still watching and waiting while the coach hadn’t budged. Eventually, we did wind our way to the Statehouse.

Next, of course is the legislative agenda. The NC House Leadership chose to present the state budget for consideration on this particular day that we all descended on the Statehouse.聽 All House members are assigned to either the chamber’s Appropriations or Rules committee, meaning they were unavailable to constituents during the course of the day, and the primary piece of legislation the chapter was lobbying for had already passed the Senate. So community members found themselves cajoling staff instead of wrangling house members.

By mid-afternoon, the community members’ small group meetings were completed and State Senator Joe Sam Queen was honored with a plaque. The delegation then made its way into the Senate gallery, to be acknowledged by the Senate. Before that could happen the Senators had to finish their other business including a series of floor speeches stretching nearly an hour to celebrate the “unflinching service to the people of the State of North Carolina” of Former United States Senator Jesse Helms.NC Hill Day 2009 Steve2

As afternoon faded into evening, I gathered my luggage and headed off to the airport to catch my 6:55 p.m. return flight for home. As I made way through the terminal I heard a faint, garbled voice and saw a display listing my flight changed from on time to delayed with a new departure time scheduled. As the night wore on 6:55 became 8:10 and then 9:30. 9:30 then gave way to 10:45. Finally, we got cleared for takeoff, and loaded the plane鈥攁 Canadair regional jet. As we were loading I banged my head on the bulkhead… but finally we were headed home so it didn’t matter so much.聽

And then, the pilot got on the PA and said… “we were DELAYED again, due to weather.” And so we sat on the tarmac for another hour only to be told that the flight crew had timed out, and that we’d have to return to the terminal.

I share this experience with each of you not to illicit sympathy. In my time serving the community, I’ve been consistently surprised by the collective resiliency of our community members. Bad things happen to good people. This is not negotiable. It is, an integral part of our humanity. The question has much more to do with whatever comes next. Given the challenges and obstacles we have endured this year with less than a desirable political environment to work in, and with an eye towards all that which has come before- we should take a moment to reflect; and renew our resolve. There are fights this community will be confronted with in the days and weeks to come. These fights– some of our choosing, but more likely, they will have chosen us.聽 My experience with a few setbacks on one particular day could only be considered relatively minor in light of the grand design. These things give us the resolve to fight, to stand up and be counted. Friends, now more than ever we need to rise up and commit to fight these fights in our own interest, for no one will do it for us.

This may in fact be a strange land, a place unfamiliar, unknown, and unkind; but, together we can bring the kinds of change that will improve the lives of all of us.

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