Brick By Brick, An AIDS Clinic Pushes On

Thirty bricks bear the names of the first patients who died from AIDS-related complications in 1995. Hundreds of spots nearby are blank, waiting to be inscribed with the names of donors who will keep today’s HIV+ residents alive.

That’s the aim of a new brick garden dedicated at a ceremony Thursday morning at Leeway, the state’s only free-standing nursing home for individuals living with HIV or AIDS.

Located at 40 Albert St., Leeway maintains 30 skilled nursing beds for patients who need constant attention, 30 residential beds for those who need a steady supply of medication, and 41 supportive housing units for those who can live, for the most part, independently.

According to the most recent count by the Connecticut Department of Public Health, 10,400 state residents are living with HIV. Of those, 269 were diagnosed in 2016, just a tad lower than the 277 new cases in 2015.

Since only direct medical care is reimbursed by the state, the facility’s director sees the new brick garden as a fundraising vehicle that can support patients’ quality of life.

“We are not reimbursed for going to the theater, for going to the Green to hear a concert, for going to Mystic to take a look at the white beluga whales,” said Heather Aaron, Leeway’s CEO. ​“All the other things that make your and my life, we don’t get reimbursed for that.”

Aaron hopes that one day the entire wall of bricks in the new garden will be filled up. But she said it’s a challenge to convince donors to open their wallets for those with HIV/AIDS.

“It’s very easy to give when an ad comes on TV for St. Jude’s” children’s hospital, she said. ​“With the stigma associated with the disease, who do you write the check for? A lot of people want nothing to do with those ​‘bad people.’ But they’re wonderful people, artists and musicians, loving, poetic and smart people, just like everybody else.”

Politicians did turn out in numbers on Thursday to show their strong support for keeping Leeway’s funding going.

Lt. Gov. Nancy Wyman, a longtime advocate for Leeway, called it the best nursing home in Connecticut. She presented the staff with a plaque certifying their five-star status from the Centers for Medicare & Medicaid Services, the top ranking.

“Leeway has done an unbelievable job of really bringing together people who need and want help to become a community of their own,” she said. ​“The residents of Leeway, you make it special.”

The medical care has kept people like Donna Maine healthy. Maine was diagnosed with AIDS in 1992 after a sexual encounter. She said that nurses helped her through two bouts of pneumonia, stomach problems and kidney failure during the 15 months she lived at Leeway. She’s now down to just one medication — a major change from the cocktail of drugs she had to swallow decades ago that left her with nerve damage and wasting syndrome.

On Thursday she wheeled around a walker to talk with staff and patients at different tables. She patted her belly and stood up to wave her arms, as the Davis Street School Band performed a soulful rendition of Andra Day’s ​“Rise Up,” this generation’s civil rights anthem.

Living at Leeway does have its ​“ups and downs,” Maine said. ​“We have our own room, space and peace.” She enjoys Bible study and group sessions. But even as she was taken care of, she watched five other patients succumb to the immune-ravaging disease.

Maine’s course of treatment can be traced back to Catherine Kennedy, who founded Leeway more than two decades ago. Surrounded by red roses and pansies, with a fountain at its center, the ribbon-shaped garden that opened on Thursday is dedicated to her memory.

“When the HIV/AIDS crisis ravaged Connecticut, you had the prescience when others looked away. You promoted courage over fear, conviction over indifference, and compassion over rejection,” Jeffrey Busk, a one-time Leeway resident who now serves as the board’s patient advocate, remembered of Kennedy. ​“We all humbly say thank you.”

Born in 1947, Kennedy ​“knew a lot of hardship” during her youth in a shipbuilding town near the Scottish border, her husband said Thursday. She put off college to get a job in the insurance industry, married a professor and eventually moved across the Atlantic with him in 1983.

Shortly after arriving in New Haven, they noticed the spread of HIV/AIDS, particularly among poor people of color. While her husband taught history to Yale undergrads, Kennedy attended classes at the business school to understand how long-term care could be provided to patients with chronic conditions.

Kennedy eventually quit her insurance job, found a shuttered fabrication plant in the Cedar Hill neighborhood and opened Leeway in 1995.

“She wanted to learn all she could,” Mayor Toni Harp said. ​“Inadvertently, she began teaching us. So many valuable lessons remain applicable and timely today: that HIV/AIDS patients should receive good care and abundant love, not scrutiny; that they are to be treated, not stigmatized.”

James Earl Jones, an author and current Leeway resident, was asked to write a poem for the garden’s dedication. He didn’t know much about the founder before, but researching Kennedy’s life changed his perception of the facility. Jones said he finally understood why the staff are so kind, why they care so deeply about his success. ​“I can see her vision,” he said.

“How could she have known / A beginning with no end?” Jones read. ​“A seed that has finally grown / To help hearts that need to mend.”

Jones entered Leeway two years ago. ​“I was a wreck,” he said. In 1985, he watched his sister die of AIDS, and in 2000, while incarcerated, he found out he had the disease himself. ​“I kept it hush-hush,” he said.

For a while, a secret jailhouse support group that he led kept him going; even after he got out, he still passed along medical studies and magazine articles to those in lock-up. But after a time, he started using drugs and forgot to take his medication. ​“Sometimes, I just didn’t care,” he said.

Leeway gave him ​“stability” that he hadn’t had before, Jones said. He started a weekly get-together for residents in the independent living units, and he helps lead an arts and crafts group with writers, painters and other creatives.

Soon, Jones said he thinks he’ll be able to move into an apartment of his own in Bridgeport, where most of his family is. He’s compiled vignettes from his life into a book he calls, ​“Wishful Thinking.” No longer consumed by the task of just staying alive, he’s set his sights on getting the manuscript published.