MIAMI — Janet Reno sat in a wheelchair with a blanket over her knees, her fingers curled inward so she could not shake hands. She was skinny — very skinny — almost unrecognizable as the prosecutor who had shot to fame as President Bill Clinton’s attorney general, the first woman to hold that position.
Her family had consented to let us meet Ms. Reno this summer for an article about a Parkinson’s fund-raising event she has long participated in. They agreed because one of us, Marilyn, also has Parkinson’s, and the article was to be as much about her journey coming face to face with what her health is likely to look like a few decades from now as it would be about Ms. Reno.
But after that first meeting, Ms. Reno’s sister, Margaret Hurchalla, fiercely protective of her health and privacy, did not show up for the second interview. Ms. Reno’s niece, Hunter Reno, politely explained that her family feared that an article on the former attorney general’s disease would overshadow her professional contributions.
The decision reflected her family’s wish for her to be remembered for her milestone achievement as the first female attorney general, not for being a poster child for Parkinson’s. But it also reflected Ms. Reno’s own attitude toward her disease — that it not define her.
“She never wanted to talk about that,” Donna E. Shalala, the former health and human services secretary who served in the Clinton administration with Ms. Reno, said on Monday. “Janet was at her best talking about justice and fairness and equity and human rights. Those are the things she cared deeply about.”
Ms. Reno was just two years into her tenure in 1995 when she was told she had Parkinson’s; she died of complications of the illness on Monday. She finished her term in office and ran an unsuccessful bid for Florida governor seven years after her diagnosis.
At first, she turned down invitations to be a spokeswoman for the disease, but later she worked to raise awareness with activities like touring a new center for movement disorders at the University of Florida, where she appeared in 2011 in a wheelchair. She was an honorary chairwoman for a signature Parkinson’s fund-raising event here, Moving Day Miami, for the past few years.
But she continued with other activities unrelated to her illness. She appeared on “Saturday Night Live” in 2001 and did a voice-over for “The Simpsons” in 2013. She continued to kayak.
“She never invited discussion about herself,” said John W. Kozyak, chairman of the National Parkinson Foundation and a friend of Ms. Reno’s for 30 years, who had helped arrange our meeting. “It took a lot of courage to stay in the public limelight when she had Parkinson’s.”
Michael S. Okun, the foundation’s medical director and Ms. Reno’s neurologist at the University of Florida, said she was a willing advocate for patients before a more recent deterioration in her health. He said she always “lit up the room” with her warmth whenever she waited her turn in the waiting room, refusing to be treated like a V.I.P.
“I remember when she drove through Florida in her red pickup, campaigning during the primaries, she was adamant she wouldn’t be defined by Parkinson’s,” Dr. Okun said. “She had Parkinson’s, had a tremor and some other issues, but it wasn’t going to stop her from being a great advocate for the public and doing the job.”
“She and Muhammad Ali were the same phenotype,” he added. “They would rise to the occasion no matter how severe the tremors were. They were public servants.”
At the first meeting, Ms. Reno sat at a long, wooden table in the screened-in back porch of her Miami home — the one her mother had built that is a throwback to old Florida, with no central air-conditioning and a tiki hut in the back. A little alarm went off on a pill-dispensing machine when it was time for her to take medicine.
She had three round-the-clock caregivers, including one who slept in the same room beside Ms. Reno’s hospital bed.
A newspaper was spread in front of Ms. Reno and her sister. Ms. Reno occasionally pointed to something in the paper that interested her, but could not articulate what. The Parkinson’s had rendered her voice an inaudible whisper; her sister did all the talking. They seemed to communicate telepathically, as Ms. Reno’s eyes darted back and forth to her sister.
Janet McAliley, a former longtime member of the local school board who has known Ms. Reno since she graduated from law school in the 1960s, said Ms. Reno began having difficulty talking about a year ago. She would try to say something, but it was difficult to understand, Ms. McAliley said.
And anyway, she added, Ms. Reno was more likely to have said something about immigration or social justice than about Parkinson’s.
“She never talked with me about that,” Ms. McAliley said. “I think there were many different causes that she favored. She just had a big universe.”
The event Ms. Reno was set to promote, Moving Day Miami, will be held this Sunday. A team will march in her name.
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