“Sadly people always believe they will have time later; trauma taught my family tomorrow isn’t promised.” Alisa Hughley 2012
At 16, Carey Hughley excitedly showed his little sister, Alisa, 12, his brand new driver’s license. He proudly explained all the information on the license, including the big heart. “You’re an organ donor?” she asked. “Yeah…I’m not gonna need ‘em when I’m dead,” he said. That answer stayed with her.
At Jordan High School, in Durham, North Carolina , Carey was an athlete, swimming on the team that set the state record in the 200-meter freestyle relay. He was also an artist, musician, song writer and poet.
In 1997 Carey attended J. Sergeant Reynolds Community College in Richmond, Virginia and planned to transfer to another school and study music.
At age 21, his life was cut short when he was shot at point blank range by a fellow student, someone with undiagnosed paranoid schizophrenia. He arrived at the hospital and pronounced brain-dead.
In the hospital, his family faced a difficult decision. Alisa remembered her brother’s wish.
Today Alisa Hughley is a health communication specialist. Her journey into health advocacy started with telling the “world about the lives Carey saved.”
At the Hughley’s church in Durham, a woman had shared her story of dialysis and being placed on the UNOS waiting list for kidneys. At Carey’s aunt’s church in Virginia another woman was near death and on a waiting list. The family directed Carey’s kidneys to each of them. Amazingly the kidneys were a match for both women. The family later learned that Carey’s liver had gone to a 47 year old father of three and one of Carey’s lungs went to a woman who was able to go back to work.
There are 25,000 organ tranplants a year in the US, but every day, 16 people on transplant waiting lists die. According to the US Department of Health and Human Services Office of Minority Health, the rates of diabetes and high blood pressure, two conditions that put peoples organs at risk of failure, are higher among African Americans. African Americans make up 29% of the total candidates currently waiting for transplants yet they comprised 14 percent of organ donors.
Alisa ‘s advocacy focuses on increasing deceased donations among the general public but also among minorities. “Members of the minority communities, both blacks and latinos, are particularly resistant to donation; certainly above a certain age. Minorities don’t realize how many other minorities are in need of organ transplants. I really try to explain how they already know someone on dialysis in kidney failure.”
One of the ways Alisa advocates is by explaining how a person can come to need a transplant. “Hypertension and diabetes can lead to kidney failure…causing a need for dialysis and finally the need for a transplant.”
There are many misconceptions around organ donation, most born of a distrust of the healthcare system. “Many minorities believe their organs will go to Dick Cheney.” She works to dispel myths like organ donors can be denied a funeral or that if organ donation is indicated on a driver’s license medical professionals will be less likely to save the individual in emergency situations.
End of life planning is a difficult topic to discuss. But as a health activist, Alisa believes that it is possible to move people to action by getting them to feel. “Art creates emotion which motivates action. Poetry, or a skillfully told story, can be art. I try to elevate my family’s story to art.”
Elevating end of life planning to be a part of everyday discussion is a challenge. She believes that when Carey shared his decision to be an organ donor, he took the first step in his end of life planning. “Sadly people always believe they will have time later; trauma taught my family that tomorrow isn’t promised.”
Alisa definitely feels Carey lives on through organ donation. But she felt she needed to do more. “Homicide robs victims of their identity. They are obscured by the media‘s focus on the murderer.”
Throughout high school and college Carey wrote poetry in notebooks that he saved. In the hospital where Carey died, Alisa promised her mother that she would publish her brother’s poetry. Grief and life interrupted her quest, but over the course of 12 years Alisa pulled together Carey’s notebooks, his photographs and remembrances to create the book III Gifts.
“His voice was silenced before he could share it. I became his voice. III Gifts gives Carey his identity back.”