Southard: My Capital Hill sojourn for help
By Chaz Southard/ Sitting In
Friday, June 3, 2005
Editor's
note: 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.
Getting there
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 andJustin 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
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