My Capital Hill sojourn for help
By Chaz Southard/ Sitting In at the Tri-Town Transcript
Friday, June 3, 2005
Note from the editor of the Tri-Town Transcript: Chaz Southard, frequent contributor to the Tri-Town Transcript, writes here about the three days he and his family were in Washington, DC to join the rally on April 12 for passage of The Christopher Reeve Paralysis Act. Southard, a Topsfield resident, suffered a spinal cord injury in a diving accident off Plum Island just over two years ago. Since the rally, Southard reports that 22 representative and three senators have signed on in support of the bill, including Sen. John McCain who just added his name as cosponsor last week. On Wednesday, Massachusetts Congressman John Tierney wrote a personal letter to Southard, adding his name as another cosponsor of the bill. Southard was scheduled to meet with Tierney while in Washington, but had to cancel due to illness and fatigue. Tierney's letter, sent as a follow-up to the canceled meeting, "really made my day," said Southard. For more information, visit www.chazsouthard.org
This was the first time my family and I went away since my injury over 2 1/2 years ago - and it took a lot of planning, preparation, thought and physical labor on my family's part to get this thing rolling. I wasn't feeling well and suspected I may have had a urinary tract infection (which was confirmed when I got home) but this was something I had to do, not just for me but for all paralyzed people. It was just too important.
The day before the rally
Monday afternoon [April 11] we checked in and headed down to one of the conference rooms where we were educated by the officials from the Christopher Reeve Paralysis Foundation on what to expect the next day. This briefing was followed by a few speakers. One particular lady, a retired police officer, left these words echoing in my mind ... "Rats are walking in Miami, rats are walking in California, rats are walking in New Jersey, and here I sit ...there are so many promising therapies - right now - sitting on shelves gathering dust because of lack of funding for research - this is morally wrong!" There were other wonderful inspiring speakers, a professional magic show and of course "ProfessirX" (www.professirx.com) performing his beautiful tribute to Superman.
I later spent some time mingling with comrades who shared my goals. It was quite refreshing to finally put faces with the many people that I've been corresponding with online who I only knew by first name or funny nicknames. It was a unifying moment. Boy, I was exhausted but stoked from the maelstrom of excitement, education, hope and newfound camaraderie. I headed up to the room. Tuesday, April 12, was going to be the big day.
Well, it turned out the best way for us to get to the rally location was to maneuver our way through several blocks through Washington, DC rush-hour traffic. We were not alone and were met up by a few other wheelers and we all rolled together through the chilly 50-degree, windy weather. After about a 40 minute arduous wheelchair parade, we arrived to see fresh white blossoms, and rose-colored cherry petals floating in the air with the sound of Bob Marley's song "Never give up the fight ... Get up! Stand up!" resonated throughout the lawn on Capitol Hill. There before me was a sea of wheelchairs, friends, family, television crews and a stage full of dignitaries with the US Capitol building gleaming ivory white in the background. I was overwhelmed at the realization of this truly historic moment.
I sat in the sun for a little while, seeking respite from the chilly winds, took a deep breath and absorbed the scenery. There were paralyzed Americans of every age, every color, every religion, surrounded by their families and other loved ones. The positive energy was magnetic and there was also a loud and hopeful feeling when we chanted "Cure Paralysis Now."
Sen. Hillary Clinton made a fabulous, sincere and humanistic speech and was followed by Christopher Reeve's young widow, Dana Reeve. Legislators present included Rep. Jim Langevin, Sen. Tom Harkin, Sen. Lindsay Graham and Rep. Jerrod Brown. Also there was preeminent neuroscientist Dr. Wise Young, Marc Buoniconti and Justin Richardson, all emceed by Betheny Winkler of Oklahoma who had spearheaded the rally. ProfessirX again brought the house down, bringing tears to Dana Reeve's eyes.
Meeting with Sen. Kerry
After the rally, we went to Sen. Kerry's private office and conference room with just 15 minutes to spare and collect ourselves. We were warmly greeted by Julie Wirkalla who had made the arrangements for us to meet the senator. We had others in wheelchairs join us in the meeting. Liri of Malden came with his dad and brother and Rob came from DC. Dee from Marblehead had made the trip to DC for the rally to represent the wishes of a good friend and Joe Brisena from Virginia came for his son, Jay, an army reservist who had been shot in the neck in Iraq two years earlier.
When Sen. Kerry opened the door he projected a calming, sincere and humanistic demeanor and settled the room's anxious vibrations. He set aside his crutches - he was recovering from recent knee surgery - and made his way around the room shaking every person's hand and looking you right in the eye. He is very human, very real, incredibly compassionate, bright and articulate.
He looked me in the eye and asked me about my story. I told him how I was injured, how I went from having goals like catching a good wave to surf to instantly have a goal to just breathe on my own. I told him that there are many promising therapies, which are not controversial, that are sitting in laboratories collecting dust, like us trapped in a time capsule.
Sen. Kerry confirmed that we were looking for $300 million over three years to help find a cure. He explained that he had just come from a meeting where our legislators were voting on preparing to pass a tax cut for the top 2 percent of the wealthiest Americans that would cost lost revenues of $29 billion a year and would contribute to the deficit. "How is this right?" my Mom asked, adding "What we can do to help?" Sen. Kerry listened intently and explained the only reason that the Christopher Reeve Paralysis Act might not pass was purely financial. The keys, he said, would be "Networking, writing and spreading awareness."
Chance encounter with Dr. Wise Young
After another elevator trip down to the ground level of the Russell Building, by chance we ran into Suzanne Poon and Dr. Wise Young. We conversed for awhile and updated them on our meeting with Sen. Kerry, explaining that the senator was looking for a way to convince Congress about savings and how a cure would ultimately save taxpayers. Dr. Young is so modest, easy-going and speaks with an uptempo, a clear, jazzy beat. My father asked him what would be the cost savings for the country with, say, the restoration of hand function for a quadriplegic. Wise easily relayed a few numbers, factoring in the loss of employment, social security payments, personal care expenditures, medical supplies, and tax revenue. Hand function could easily be worth over $1 million per person over the course of one's life, he said. Wow!
The trip was very successful, energizing and memorable yet, very difficult on my body. (Note: During the trip, Chaz was battling two different infections, which contributed to fatigue, muscle spasms and neuropathic pain.) And as I write these words, I know in my heart that my family, friends and I are doing everything we can to help preserve Christopher Reeve's legacy, to spread awareness and enlighten a collective consciousness that the central nervous system can - and will - be regenerated. I'm also left with the feeling that I'm not alone in my efforts, struggles and thoughts, and I am supported by a wonderful group of crusaders and soldiers, who will help make paralysis a thing of the past.
To all reading this: please act now
I also had a further realization on how important, influential and powerful politics play in our lives. I would never have thought that one single soul, one phone call, one e-mail or a donation could have any effect upon greater humanity. And I ask anyone who reads this column to please contact their US senators, representatives and political affiliates and their state legislators to urge the passage of the Christopher Reeve Paralysis Act.
Every one of us has a voice, a vote, a say and a choice in what happens in the world around us, whether it concerns a political, environmental, economic, or social issue. Call your legislators for the three-year-old girl that I met who was paralyzed by a brain tumor. She dreams of being a ballerina. Call them for the paralyzed veterans. Call them for the person who will be paralyzed in 41 minutes after you read this. Call them for young soldiers who are fighting in Iraq. Call them for all the innocent bystanders who are victims of violence. Call them so you and your family can help change history.
To contact US senators to urge them to support the Christopher Reeve Paralysis Act (and find out more about the bill), visit www.christopherreeve.org. Click on "Take Action" on the right-hand side of the page. To contact your US representatives, visit www.house.gov and click on "Write Your Representative" on the left-hand side of the page.
Visit Chaz's Web Site: http://www.chazsouthard.org/wordpress/
Article posted in Paralinks with permission from Chaz Southard