March 1, 2005

...And the life you lead after that

(picture of me in my late teens, warming up in the ballet studio)

“There’s the life you live, and then there’s the life you live after that.” – from the movie, The Natural

I’ve returned from my trip to DC and this quote from The Natural is stuck in my head because I feel like that is what I was there to do – tell the legislators and staff that life I led before RA and then the life I lead now that I have been diagnosed. I will be writing about this more and more, I am sure. But for now, I want to share this picture, which illustrates more than I could ever say.

I’m really worn out. But over the next days I will write in full about my experience on Capitol Hill, which I’m pleased to report was very enjoyable as well as eye-openeing. Things work differently on The Hill.

I’d like to thank all the people I’ve met with over the last couple of days, including the following:

From Deborah Pryce’s office, Shiloh Roehl
From Pat Tiberi’s office, Adam Francis
From Steven LaTourette’s office, Ryan Berger
From Sherrod Brown’s office, John Sawyer

These legislative directors and aids were all kind, knowledgeable and sincere. They listen to our stories and request with interest and compassion. They were helpful and informative.

I’d also like to thank Abby from Senator De Wine’s office and Neil from Senator Voinovich’s office for meeting with us and for listening and sharing their thoughts and recommendations.

I also am very thankful to Senator De Wine for meeting with us, and in particular listening to my story and for agreeing to look at the newly introduce Arthritis Prevention, Control and Cure act sponsored by Senator Bond’s and Senator Kennedy’s offices.

In the next couple of blogs you will hear stories about three days of meeting with legislative offices and connecting with other patients with arthritis.

I want to offer a couple other thank you’s to the folks I met and worked with these past few days:

Stephanie from Oklahoma, David from Indiana, Marty and his mom from Pennsylavania, Lori from West Virginia (A Mountaineer Is Always Free!), Jennifer from Maryland, The fabulous crew from the Ohio Valley chapter of the Arthritis Foundation, Monica from California, Leona from Florida, and all the others. You are all fabulous and have importantly have wonderful heartfelt stories to tell.

I also want to thank Glade Pauley from Hudson Ohio, who I was privileged to attend every legislative visit with, who was ceaseless in his ability to be generous, helpful and compassionate. You were tremendous!

And most importantly to Joanna, who got me into this (yeah!) who is a wonderful woman, and accomplished veteran on the hill, and who is beautiful in every way.

I must rest now, but the stories to come this week will make you think, make you feel and hopefully make you want to be involved.

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