Crazy Creole Lobbying Mommy

By Brooke Abbott

This past March, I had the honor and pleasure of joining CCFA as they participated in The Digestive Disease National Coalition’s Public Policy Forum and Day On The Hill. It was everything I expected and not anything like I expected at all…all at the same time. Still with me? Okay.

Advocacy. Why advocate? It sounds like a something a bunch of complainers with a lot of time and money do. They march and walk, picket and scream. Complain about everything and anything the government is doing wrong. Umm…yea, no, not exactly. Advocating is just a fancy way of saying, I am taking a stand for this cause or person or yourself. When you are laying in that hospital bed in pain, it’s about time they call in a specialist and you plead your case to the nurses and slew of doctors as to why you don’t need to see an emergency room doctor, but the gastroenterologist on call. You are advocating for your patient’s rights to see the doctor you need to see. Going to Washington D.C. and advocating for legislation affecting IBD patients and caregivers is the exact same thing. You are pushing for the proper change for yourself. But you are making a greater impact because in the medical field, they know the faces of IBD. But members of the legislative and executive branches are not too familiar with the many faces of Crohn’s & Colitis. Your story could literally change the way America sees IBD. It can change the way life begins after diagnosis. It can change a life from ending after diagnosis.  Advocacy is crucial.

So, there I was, arthritis flare up and all. Feeling the brewing of pouchitis slowly percolating. Sitting in a wheelchair in LAX waiting to board the jet way for a red eye to New York and then the connecting shuttle to DC. A looming snowstorm warning hanging over my head, but there I sat with my cali winter suntan and fragile joints. Never had I advocated in such an official capacity. I’ve always spoken my mind, but usually in a fundraiser & casual dinnerish type of occasion. Never had I been given specific laws and representatives to target. And never had I been so determined to make a difference. Not that anything else I’ve supported has not been important; it’s just that this completely changed my life. It changed my life totally and completely and if there was better awareness, education and healthcare support for it…it may have never changed my life at all. I don’t ever want another mother & child to go through what me & my mother and me & my son have gone through because of Ulcerative Colitis. And as I sat on the shuttle plane from NYC to DC, listening to Sara Bareilles’ song, Brave, I realized just how much power I had. I knew that those couple of days would change my life and force me to look at myself differently.

Before my surgery, I felt completely powerless. I lost everything except my son. I lost my career, my relationship, my home, my income and control over my own health…everything…even part of my sanity and ability to control my crying. When I came through the surgery and started to feel better physically, life started to look a little sunnier. And then I heard the odds I beat to make it out of my surgeries and well, I started to feel like Super Woman. Then looking back on my life pre-surgery and getting through each day living an active life with the amount of pain I was in, I realized I have always been, Super Woman, in a way. I say all of that to say, there was no way I wasn’t going to turn down an opportunity to stand up for myself and other IBD patients, just because of a little joint pain. I know there were people at that very moment who were feeling as helpless as I used to feel and needed someone to stand up for them. Who was I to say no? Especially at a time when we are in election season and Congress is listening. The song was blaring in my ears and I was getting pumped. I had a job to do, an opportunity to stand for something and make real change. When that plane touched down 45 minutes later, I was ready.

The idea of advocating on the hill can be quite scary, I’m sure. I mean we all know that we have our own personal stories of triumph & sorrow. That we have insight on the day-to-day needs of a patient and understand what may need to be done. But that doesn’t mean that everyone is up to date with legislation or that everyone can speak legislative jargon. I mean the process of Congressional governing can be intimidating if you are the average American who isn’t a political science major and isn’t glued to The Post, Drudge, CNN or C-Span. I think the word advocacy brings the idea of a heavier definition that doesn’t even really exist. Advocacy is really just standing up for a cause. I went into the DDNC public policy agenda review forum without knowledge of any kind of legislation outside of the IBD Research & Awareness Bill that Sen. Majority Leader Harry Reid has been pushing for years that is the reason for the passing of the IBD Awareness Week in December. So needless to say I was a bit nervous when I stepped into the conference and met people who had made multiple trips up to the hill re: IBD advocacy. Well, this is where greatness of the Digestive Disease National Coalition comes into play. Not only do they have a really caring, compassionate, driven staff, but also their job is to stay on top of the major legislation regarding digestive diseases and to hold these representatives accountable. They created a readable, well-organized agenda with the bills & resolutions that were currently on the floor or in committee. They grouped you together by state, contacted and made appointments with your representatives for you. You were allowed to pick three pieces of legislation that were closest to you and your personal causes. This was great, because it makes the legislative language easier to interpret and advocate for. Dale Dirks & Terrell Baptise over at the DDNC give such a great quick and easy “how to advocate” run through for everyone. There is nothing hard about advocating on The Hill. Unless of course, you decide to do it on the day Washington is supposed to get the most snow it’s gotten in like a million years or something. And you find yourself lost wandering in all white snow on Capitol Hill…you know…unless of course, you’re me.

Yes, as my mother would say, I pulled a “Brooke” in Washington D.C. when it was one of the coldest, snowiest days in the history of the Nation’s Capitol. Me, little Ms. Sunny Southern California, in all of my arthritic, pouchitis flare up glory, wandering around in a blizzard, in a city that is confusing enough to navigate in on a warm sunny day. Basically, what should have been a ten minute walk from the Dirksen building to The Liaison Hotel ended up being about a 45-50 minute walk with a detour from the Longworth building…yea…no, it’s not really a detour…I was just extremely, extremely lost in a city that was shut down and covered in 10 inches of snow! And by the look on the Capitol Police Officers faces, most people know not to walk by themselves around in a blizzard in a city where the streets don’t run in a straight line. But, you know I was feeling a little liberated which led me to feel fearless. And then I just ended up feeling…frozen! But all is well that ends well! I made it back to the Senate offices with enough time to attend our lunch hosted by the DDNC and head over to our House appointments with CCFA VP Laura Wingate. And the thirty-minute walk Laura & I took from Russell to Longworth with the snow attacking us from several directions, created a bonding experience that neither of us will ever forget.

Now because of the snowstorm, a lot of these offices were closed but we were able to see some assistants. Putting a face with the folder of information we were leaving behind. What happened inside of me though, was amazing. You see because I didn’t get to complete my mission, I will be back. It lit a fire in me that I’ve never felt before. I came to a full realization that all hope was not dead. There was a way to fight this disease and I had an opportunity to help make change that will actually benefit real patients. So, I’m not stopping. And I don’t have to go all the way to Washington to do so.

CCFA and the DDNC both list their legislative goals on their websites for you to use when calling or writing your local representatives on behalf of patients. Oh yes, you can do this from your home. The CCFA offers a great packet you can download that helps with going over the basics, links to your local House & Senate Reps, and legislative goals for the year. They have made it easier for us to do everything we need to do to combat IBD. I think you should give advocacy a try. Things like the Colitis & Crohn’s Caucus & IBD Awareness Week have come out of legislators knowing what we need. You can make a difference! A real difference! The time is now! Hopefully I’ll see you in June with the CCFA or next year with the DDNC. Maybe you can keep me from getting lost in the snow again!