"I wouldn't use the word hide," said Dr Sue Goldie to NPR, she is a professor at the Harvard TH Chan School of Public Health, who has finally told the world after four years about her Parkinson's. She learned about her diagnosis in 2021. She told NPR, "I think I was really trying to give myself room and time to fall apart, to panic, to think about what it meant for me.” For Goldie, silence wasn’t secrecy, it was self-preservation. She revealed she needed space to understand to first accept that it is happening with her, and secondly to understand how to live with a condition that would alter her movements, her voice, and even her sensing. So she calls the 4-year-gap of not telling anyone as a "process of figuring out how I could be OK."Parkinson's Disease: How Does It Start?We often read about Parkinson's disease, what is it, and what it does to someone. However, what we do not talk a lot about is how it starts. We don't talk about the subtle signals one's body sends. Goldie says it started with a tremor. It was so slight, that it was almost invisible. Then, a running coach mentioned her off cadence. The New York Times (NYT) reports that a trainer noticed her left arm did not lift properly in the pool. Eventually, afterwards, her fingers began twitching. Goldie, then was 50. She was also at the height of her academic career and was newly obsessed with triathlons. She was in fact, training for Ironman races, reported NYT. When tests confirmed Parkinson’s, a degenerative neurological disease that affects movement and coordination, her first reaction was disbelief. Then fear. Would her students notice? Would colleagues see her differently?The diagnosis left her confronting an identity crisis. At what point, she wondered, does a disease become who you are?Sue With Parkinson's, Who Lived Two LivesGoldie began to divide her world. At Harvard, she was the confident professor and global health leader, still producing intricate teaching materials and mentoring students. In triathlons, she was freer, surrounded by people who saw her as an athlete, not a patient.But the effort to maintain that balance came at a cost. As reported by NYT, early mornings were the hardest: walking unsteadily to the bathroom before medication took effect, hiding tremors from colleagues, managing the dopamine pills that controlled her symptoms. “You have no idea how hard it is to trick you into thinking I’m OK,” she later said.Eventually, she could no longer keep it private. “Starting today, I am Sue with Parkinson’s,” she decided. Most of the people in her professional life would learn about it through her story.The Camera For HealingWhen Goldie's hand tremors made writing impossible, she began to record thousands of video diaries. They were often short, unfiltered glimpses of her daily struggle, which were filmed in her office, car, or home. Sometimes, calm, sometimes in tears. Her videos began with a "Hello Sue", talking to her future self. In one video as posted by the NYT from 2023, she confessed, “I’m trying hard to do all this stuff that will help, but I’m not feeling OK... I just need to not be alone with it.”Goldie refused to stop training. Her research had shown that exercise helps manage Parkinson’s symptoms. So, she doubled down, calling herself “an N of 1” — a one-person experiment. She adapted creatively: pink tape on her hands to guide her swim strokes, modified gear on her bike so she wouldn’t lose balance.In 2022, she completed the Lake Placid Ironman, a 140.6-mile challenge. She crossed the finish line after collapsing, crying, and reapplying lipstick. Her small team called her S.F.G., with the middle initial standing for an unprintable word that captured her spirit.As her symptoms progressed, Goldie’s fears shifted from physical decline to the erosion of identity. Parkinson’s, she realized, isn’t just about tremors; it’s about dignity, perception, and the quiet grief of being misunderstood.She worried about whispers at Harvard, about whether others would still see her as capable. When she finally told university leaders, she felt both vulnerable and relieved.Still, her mission remained unchanged. “I can’t change this,” she told The New York Times in 2024. “So what happens when I get worse?”She continued teaching, designing, and mentoring. Her hands might tremble, but her mind stayed sharp. “I want to get things done while I’m still the best me,” she said.
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