Spinal cord patients will gather to urge lawmakers to pass paralysis act
All Chaz Southard was looking for that August day in 2002 was a little respite from the heat. After chatting with a few lifeguards on a crowded Plum Island beach, the experienced surfer walked torso-deep into the Atlantic and plunged hands-first into the cool, salty sea.
A strong undertow lifted his feet, and his head struck a sandbar created by the changing tide. The collision affected his fourth cervical vertebra, bruising his spinal cord. Although he remained conscious, he lost all feeling below his neck and was at the mercy of the current, until several people pulled him to safety.
A few hours later, when Southard was supposed to attend an Allman Brothers concert, his family gathered at a Boston hospital where they learned he might die. If he survived, they were told, he would never walk or live independently. Southard and his family spent the next nine months in hospitals in Boston, Denver, and Atlanta, where they all learned how to live with his injury.
Now 25 and paralyzed from the neck down, the Topsfield resident is helping with the first national rally for a cure, organized for and by paralyzed Americans. On April 12, the Southards will travel to Washington, D.C., to encourage lawmakers to pass the Christopher Reeve Paralysis Act, which would provide $300 million to research paralysis over the next three years.
The Southards also hope the rally will reinvigorate interest in the plight of paralyzed Americans, which many believe has faded since Reeve died in October.
”It was like the air went out of the balloon,” said Chaz’s father, Chuck.
After Chaz’s accident, the Southards’ life and home were transformed. Chuck modified their house so that Chaz can maneuver his electric wheelchair on the lower level. Chaz relies upon his father, mother Julie, and 22-year-old brother Corey to shave, feed, clothe, and bathe him each day.
”A spinal cord injury devastates a family,” Chuck said. ”It’s more emotional for the siblings and for anyone who cares about the person. That’s why they call it a catastrophic injury.”
Through months of intensive exercise and therapy, Chuck helped Chaz increase strength in his upper arms. Though Chaz cannot use his hands or fingers, he can move his shoulders enough to operate his chair. That enabled Chaz to achieve his primary goal after the accident: to scratch an itch on his face.
”My main goal was to read a book, but then being able to scratch my face became my first goal,” said Chaz, who received a degree in environmental science from the University of New Hampshire three months before his accident.
Chaz and his family deal daily with other, less visible aspects of the injury. Chaz experiences sporadic muscle spasms and nerve pain, which is partially relieved through drugs. He cannot control his body temperature. His blood circulation may decrease, and he is at a higher risk for diabetes and obesity. His body needs to be shifted regularly to avoid pressure sores. His blood pressure is checked routinely.
“Certain friends of mine became closer, and some I have not heard from in a while,” Chaz said. ”My girlfriend left me.”
Once beloved by the children of friends and family, Chaz now sees youngsters shy away from him. He can’t tell if they’re shy or suspicious of the wheelchair. It is difficult to maneuver his wheelchair through once-favorite romps like Harvard Square, never mind thresholds or the beaches he had hoped to help preserve through the environmental work he prepared for at college.
Voice-activated computer software gives Chaz access to the Web and e-mail. But that, too, has limitations. He must work in total silence, ”otherwise the door shutting or my dog barking or a family member shouting or asking for me will be picked up by the computer,” he said.
Chaz cannot be left unattended. His neck becomes strained at movie theaters because he has to sit in the first row. He attended a Phish concert, only to have people kick his chair. He overheard one man complain about a wheelchair in everyone’s way.
”It was very discouraging,” Chaz said. ”Plus, I couldn’t see. So I stepped away from the whole music concert thing.”
Now, Chaz concentrates on appreciating the beauty that surrounds him and translating it into poetry and paintings. He reads works of the Dalai Lama. He researches cures and quality-of-life issues for paralyzed people, writing editorials for local publications. He posts much of his work at www.chazsouthard.org/blog. Chaz also corresponds regularly with others with spinal cord injuries, via www.sciwire.com and www.CureParalysisNow.org.
It was through the Internet that Chaz learned of the rally, spearheaded by Betheny Winkler, a 45-year-old quadriplegic from Oklahoma. US Representatives Michael Bilirakis of Florida and Jim Langevin of Rhode Island, who became paralyzed after a gunshot wound, are among those reintroducing the Reeve bill in April.
Written in 2003, the bill would dedicate $300 million over three years at the National Institutes of Health to research paralysis and expand activities at the NIH to improve the quality of life for those living with paralysis.
For many, attending the rally poses challenges. Many participants have a difficult time traveling by car or air, and handicap-accessible hotel rooms are limited. Restricted finances are another issue, Winkler said.
”Disabled people are on limited incomes, anyway,” said the former lab technician, who has not worked since tripping nearly five years ago.
She said she would like to see a resident from each state at the rally, so that every legislator can have an opportunity to speak with a constituent. Senator John F. Kerry agreed to speak with the Southards.
”He’s keeping Christopher Reeve’s spirit alive and well,” Kerry said of Chaz. ”Chaz is a living and breathing reminder that one of the best ways to honor life is to cure debilitating diseases and paralysis.”
The rally efforts have been endorsed by the Christopher Reeve Paralysis Foundation and Dana Reeve, Christopher’s widow, who will speak at the event. Marc Buonoconti, son of NFL Hall of Famer Nick Buonoconti, will also speak. He broke his neck in a high school football game 20 years ago.
Roughly 280,000 Americans suffer from spinal cord injuries, and 78 percent are male, according to statistics from the National Spinal Cord Injury Database. The average age at injury is 38. About half of the injuries are caused by automobile accidents.
While many believe that embryonic stem cell research holds hope for spinal cord injuries and other debilitating conditions, the proposed law steers clear of that divisive issue.
Federal funding is limited to stem cell research on existing stem cell lines. Opponents of expanded stem cell research believe that it would be a gateway for unethical procedures such as human cloning.
While the obstacles to a cure remain high, Chaz Southard and his family say the stakes are too high to give up the fight.
”This will be cured,” said Chuck Southard. ”We will be working on this as a family and beyond. We will not be going away.
”We live the reality that only the people with spinal cord injury know, and that reality is unacceptable.”
By Maureen Costello, Globe Correspondent