Showing Up For The Party!

6792724_sWhen I was a little girl, my mom taught me the importance of showing up for the party. Boy, was she right!

As I muse over my experience at Dystonia Advocacy Day, I ponder the significance of our actions. While we volleyed many an impassioned speech, I can’t help but wander to the conclusion it all comes down to showing up. Implanted with medicine pumps and medical devices, toting our loathsome pills, a few sporting motorized scooters or walking sticks, Dystonia hailed to D.C. armed with an arsenal of war stories to announce our presence.

Tasked with a day of legislative sorties on Capitol Hill, putting ourselves out there is no small matter. Showing up means summoning the courage to relive our most traumatic moments with a series of strangers, some paying only polite attention to our deepest frustrations. Showing up means risking an emotional bottleneck that messes with the best-rehearsed oration. It entails listening to nasty words like “sequestration” and watching life issues we battle every day transformed into talking points in a gridlocked budget process. Showing up denotes enduring a hectic, stressful schedule that wrecks havoc with our Dystonia for the same cause. It makes a simple but profound statement how we need help from our government to enjoy our freedom to move. Showing up is worth 1,000 pictures times 1,000 words…I can only hope mine were fully understood but I know my attendance was duly noted.

I must give mention to Team NY, which certainly “showed up” for business. After lending 2 of our crew to switch-hit for NJ, we comprised 3 Dystonia ladies, 1 husband and 1 father determined to wield our expertise. After all, Congress has much to learn about Dystonia. We opened our hearts, laughed our way through our emotions, swooped in to support one another, even caught a ride on the exclusive underground train. Talk about tired; by the end of the day, we could barely remember our personal details!

Here’s to fellow troopers Allison London, Ron Hersh, Denise Gaskell, Greg Gaskell, and members in absentia, Rachelle Robert and Christina Pepi, who were with us in spirit. Traipsing through the Halls of Power with the top soldiers in the state made my day!

If you plan to change the world – or even one small corner – start by showing up for the party!

Dystonia Advocacy Day, May 1, 2013
Capitol Hill, Washington, D.C.
  • National Institutes of Health (NIH) appropriation of $32 billion, a necessary increase to allow continued funding of important research programs.
  • Active support for the Dystonia research portfolio at NIH including the Dystonia Coalition and participation of Dystonia researchers in the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative.
  • Inclusion of Dystonia as a condition eligible for study in the Dept. of Defense (DOD) Peer-Reviewed Medical Research Program.
  • Long-term solution to the Medicare Sustainable Growth Rate (SGR) formula that adequately reimburses physicians and ensures patient access to quality care.

19 responses to “Showing Up For The Party!

  1. Bruce Gelfand

    Beautiful, Pam… Bravo!


    • Bruce, So nice to see you here and thank you for the compliment. Dystonia Advocacy Day lies dear to my heart and I wouldn’t miss it for the world. Particularly with a little-known condition like Dystonia, we have to stand up and announce our presence. I was telling a teammate that no matter what we say, just being there makes a profound statement. Of course, I always have plenty to discuss! Hope all is well with you. Enjoy the rest of your weekend. -Pam-

  2. Thanks, Pamela! Sounds like a most worthwhile adventure….

    • Susan, Thank you for following so faithfully. Advocacy Day was an amazing experience and I feel lucky for this opportunity to make my voice heard for the Dystonia community. -Pamela-

  3. Audrey Silver

    I can only imagine the amount of strength it took to “show up”. I’m in awe!

    • Hello Audrey, Thank you. The most strength I had to muster was making it through a long day. I needed a nap after our 2nd of 7 meetings (lol)! I already reveal my personal details to the world in this blog so that aspect was a piece of cake! -Pam-

  4. Thank You Pamela for putting into writing just how important & emotional our day was. Having you by my side as part of Team 8 certainly was a pleasure. I will show up & party with you for Dystonia anytime!

    • Denise, I must tell you that receiving your comment absolutely made my day…and made this post well worth writing! Team NY sure gave them our hearts and we really couldn’t ask any more of ourselves. I had such a wonderful day with you and the rest of our group, all that walking and talking well worth the effort. I’ll also party with you – and Greg – for Dystonia anytime, hopefully next year! -Pamela-

  5. Bruce Ashkenas

    Next year I want to go around with Team NY. You guys have fun.

    • Hey Bruce, Lovely to hear from you…and meet you in Washington! You can party with Team NY any day of the week! We wrote the book on how to have fun, though we hardly have a monopoly over you Southerners! Hope all is well with you and that you are enjoying a beautiful day. xxoo, Pamela

  6. I could read you tiredness and hope in your Muse Pamela. I sincerly wish you all the best in your endeavours. If you fail, this time, it won’t be due to lack of effort on your part.

    • Hello Murray, I was certainly tired at the end of Advocacy Day but my spirit was uplifted to have made my contribution and it was wonderful to greet old friends and make new ones. It’s such a rare opportunity to gather together in one place and felt a bit like a family reunion. Thank you for all your comments; for me, the comments are the highlight of posting. -Pamela-

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  8. Great post Pam! Thanks for the mention! We missed Team NY!

    • Hey Rachelle, Of course I had to give due credit to my fellow New Yorkers who joined me for Advocacy Day! Team NJ was lucky to have you and I look forward to collaborating with you on Team NY next year! You and Christina undertake such wonderful work for Dystonia and Parkinson’s at Bachmann-Strauss every day. Truly, we are all lucky to have you! -Pam-

  9. Pam, I can only say, you are simply good.
    The call to the participation is a dream. Further in such a way.

    • Franz, I’m well aware of all you do to support patients with Dystonia in Germany. All I can say is job well done. You are a dear friend and I’m thrilled to have met you on my journey. Stay strong and keep on going! -Pam-

  10. Great job Pam,
    I knew that you would emerge as one of our leaders. I know it takes time, patience, pain, persistence, and dedication….

    • Pepe, You are one faithful friend when it comes to commenting and I’m grateful for that gift! All I can say is that I do the best I can to give back. Advocacy and awareness are critical undertakings and I feel the need to make my contribution after years of silence. We all have our own journeys and this is where mine has taken me. -Pam-

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