The first time I went to Washington DC was for a boy. I loved him. Together, we explored DC/MD and Alexandria VA. It was in Alexandria, during a moment of distraction, he rear ended a taxi with our rental car. After he made sure I was alright, he jumped out of the car and started picking up pieces of the grill saying "I can fix this!" - well, I had signed for the extra rental insurance, so we were insured - he didn't have to fix it (that was the first of many rental cars we would damage...). The taxi driver laughed at us and I had never been more in love as the moment he got back into the car and held my hand. He often asked me what I was thinking in the moments before the accident and I would tease him by just smiling and shaking my head. The truth is, as we were driving through the redbrick night of Old Town Alexandria, I was trying to memorize the moments and the feelings, and I possibly could have had some very dirty thoughts running through my head (after all, we were staying together at a hotel for the first time). It was innocent and soul satisfying - everything a first love should be - and then BANG, rsmack into a taxi.
One bright winter day, we walked the Mall with his arm casually draped around me, and I knew that we had found our special place. When I woke up alone back in Boston on the next Monday morning, there was a hole in my heart. I ached. Months later, I flew down to drive with him back home. It was on that road trip away from Washington DC when we realized that we would not be together forever. We sat in a random college classroom in Springfield, Massachusetts when the Space Shuttle Challenger blew up and that night, back at a friend's house, we lay in the dark in silence.
The next morning, we talked and we cried. We had so many years of history but we knew then that we had no hope of a future. He offered me a kidney, but there was to be no marriage proposal. Sigh - it was for the best. He ended up having an addiction to waitresses, and well, I had trust issues and maybe I am just a bit crazy. We would have killed each other before my genetically mutated kidneys ever got me. But that was only the start for my memories of Washington DC.
A few years later, another
It was between boyfriends, on a girl's weekend, when I had the best bottle of red wine I have EVER tasted (and I have tasted a lot of wine over the years). It was one that was poured for my friend Denise's 21st birthday at the Sheraton Observatory Circle. We still laugh and cringe all these years later because we didn't think to make note of what the wine was (the sommelier had recommended it).
So now, in a new century, decades later, I am going back to Washington DC. This time alone, as a lobbyist. I'll be that middle-aged lady having dinner, talking dialysis reform and kidney failure. Maybe one night, I'll wander down to the hotel bar and remember the old days. But, for the most part, I will be in meetings, discussing health care and medical research. I am sure that for fleeting moments, I will gaze at the monuments and remember a boy who held my hand or I'll look at the steps of the Russell Office Building and I'll laugh about the man I called Bear, jumping into the jeep, still sweaty from the gym, driving off to Troy's townhouse and planning brunch. I bet you didn't know that Washington DC, that cesspool of political BS could be romantic to some people. Well, to me, for a few years, it was.
And, as far as the 2010 trip, I am blogging it on IHD. Here is what I have written:
I have to admit, that it was out of curiosity, more than civic duty, when I decided to become a part of the PKD Foundation United on the Hill 2010 http://www.pkdcure.org/tabid/1497/Default.aspx. Sure, I have PKD (second generation - so I've seen it all my life), I'm an American, my vote counts. And on March 1st & 2nd, hopefully my voice will count as well. But I am a hesitant advocate. When I was younger, I spent a lot of time in Washington DC. I have a lot of memories there, and I never imagined that one day I would be going back to the Hill and trying to make change, but look at me now. I would never have been doing this were it not for IHD and all the people that it introduced me to.
Epoman started IHD as a place to share, and it is in that spirit, that I am going to post my journey to DC as an Advocate. My personal agenda is a bit different than the agenda of the PKD Foundation, but the two are complimentary.
Even though this "Diary" may be about Advocacy on the Hill, the truth is, an Advocate is anyone who can help - in any way possible. Almost every post I read here on IHD is advocacy, just showing that we are all in this together and as a group, we change each others lives on a daily basis.
That being said, now back to the event. Tonight was the first conference call, explaining what to expect, some logistics, and an overview of talking points to bring up with the Senators, Congresspeople and their staffs. Even though I live in NYC, I vote in Maine. I am a Mainer, I was born there and went to school there from grade school through High-school. So for me, my meetings will be in the offices of Senator Olympia Snowe (R), Senator Susan Collins (R) and Representative Michael Michaud (D). The PKD Foundation sets up the appointments. There is a day of training on Monday 3/1, and then appointments are on 3/2. There'll be around 100 people going as a part of the PKD Foundation.
For anyone who wants to get involved with any issue that they might have, if you don't want to join a group and go to the Hill, e-mail your congresspeople and let them know what you need. They were elected to be YOUR representatives in Washington, help them do their job. Here is a link http://www.votesmart.org/. By inputting your zip code, you can find out who represents you, you can click on their name check out their stats and under then use their contact information link in the right column, to e-mail them with your concerns.
As a nation right now, we are suffering from Healthcare Fatigue (elected officials especially). It has been a rough and bloody battle and we are still in early days of healthcare reform, but for those of us with Chronic Kidney Disease (and those who love someone with CKD), we are used to fatigue and bloody battles (it is just another day in the life of a CKD survivor).
I'll update this post during the days that I am in DC 2/28 - 3/2. (I may even take some pictures just for the fun of it - Should I try to kiss Justice Roberts? I could swing by the Supreme Court - Susie "Goofynina" would laugh!)
Wednesday, February 17th
Conference call with Kimberly Cantor, Government Coordinator PKD Foundation. Kimberly welcomed us, gave us a pep talk about sharing our story, some logistics about navigating the events of the two days, and general info about meeting with Senators, Congresspeople and their staff. Then she ran down the talking points for the PKD Foundation (I'll go into details of those w/ my commentary when I've gone over my Lobby Package). For now, I'll say that there are 3 big ones: Extending Immunosuppressive drug coverage; NIH PKD Research (including report language); Research under DARPA (the Department of Defense Research and Development (- I know, who knew that disease research was funded by the Department of Defense???))
There will be e-mails and agendas in the next few weeks, I'll get my final appointments, and well, then on Sunday 2/28, I'll be on BOLT bus for the 3.5 hour ride to DC.
Thursday, February 25, 2007
Well, I am in final prep stages for my trip. I foolishly agreed to meet with both Maine and New York. My first time Lobbying, and I take on two states... I guess I am an overachiever (or kinda delusional). The PKD Foundation have their own talking points that I will have to address, but I also have my own agenda. The initial meeting with the staffers and elected officials - is just that, and initial meeting, put a face on the people, make the issues personal. (it is more difficult to say no, when you have met the person asking). I've been working on my own personal position paper (as a voter); researching the members that I will be meeting with, how they have voted in the past, what is public in their biographies, some of the demographics for CKD in their constituencies (like how many dialysis units, and how many offer home hemo) - The PKD foundation has paid researchers to compile their data, and I will be furnished with a leave behind packet for the PKD agenda. I will be on my own with my personal CKD agenda. Well, I am back to doing my homework. There is a snowstorm today in NYC, perfect weather for staying inside and organizing my thoughts.
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