Greg was diagnosed with Parkinson’s Disease on the very day he retired.
I’d been living in Australia for eight years when we met. He was an Associate Professor at the University of Sydney where he worked in curriculum development for the school of medicine. I thought he was the smartest guy in the room and found his intellect and confidence disarming.
He was quiet, modest, and measured next to me, a loud-mouthed, blunt, and loquacious American man. Whenever I speak before thinking, he likes to say “Well, there’s another one for your tombstone” to which I generally reply “I’m tired of being the smart one. I want to be the pretty one!” The truth is, I was neither.
As Parkinson’s progresses, things can become smaller and slower. Some are obvious, like balance, coordination, and cognition. Others, less so, like voice, smell, handwriting, and facial expression. Falls are common. When I struggle with these changes, it’s the thought of Greg slowly receding from me that scares me the most.
I’d seen people I love recede before when I coordinated care for my parent’s dementia. I begged them for years to come to Australia where I could look after them. But they were unwilling to leave everything they’d ever known. Greg helped manage the tyranny of distance by participating in social worker visits, Skype calls and care conferences. My parents adored him. Even through their dementia, they never forgot who he was. He accompanied me on many trips to see them, forsaking more exotic destinations for beautiful Cherry Hill, New Jersey. He even brought them to Australia to visit us. We married in 2012 in New York, long before it was legal in Australia, and my parents threw the reception.
Though shell-shocked by his diagnosis, Greg acted decisively. He immediately enrolled in Parkinson’s classes which combined exercise with cognitive tasks. Exercise suppresses symptoms and makes life more manageable. While watching Greg in one of these classes count backwards while bouncing a ball, it struck me that I might achieve the same thing by asking him to dance.
I learned to partner dance in nightclubs during the disco era from my friend Robert, a legendary street dancer. He encouraged me to audition for a ballroom dancing job, saying “This is your life, not the dress rehearsal!” They hired me and I taught for a decade.
Greg was not the confident dancer Robert was. In our first dances together in the living room, he was reluctant. Clumsy. He cut the first few sessions short, obviously frustrated. But over time, he relaxed. He still feigned impatience, but I could see him enjoying it.
Eight weeks into it, the Sydney Gay and Lesbian Choir advertised for same-sex ballroom dancers. The ad said, “enthusiasm is more important than skill or expertise.” Though quite reserved, Greg agreed to take part in the choir’s stage show, ‘Cheek to Cheek.’
Performing to a large audience appealed to Greg more than performing for our three dogs. We made new friends and enjoyed sharing our dancing with the community. I wish my parents could have been there. In her youth, Mom performed in amateur theatre and once got Dad to join her in a show. When I became a dance instructor, she phoned everyone she knew to tell them. Even in their 90’s, she and Dad did seated dance classes in the nursing home.
After Cheek to Cheek, we entered several local same-sex ballroom competitions and even featured in a commercial for home insurance that focused on Greg’s Parkinson’s and how our dancing helped maintain his functional mobility.
Greg had embraced his inner show pony and suggested we register for the World Outgames in Miami. I choreographed a solo routine for us to ‘Love You, I Do’ from Dreamgirls. It was a labour of love and Greg put everything into learning it.
But we arrived in America to find the Outgames cancelled at the last minute. This was due to financial mismanagement and fraud. I was heartbroken that Greg wouldn’t have his moment to shine.
At the hotel, a frantic dance event organizer was fending off disappointed competitors. He was also blindsided by the news and asked us to contact him again in the morning.
Later, we met a group of same-sex country-western dancers. They invited all the Outgames dance casualties to a social that evening. As we two-stepped and line danced, a group of tireless volunteers worked behind the scenes. They organized a smaller dance competition for us and two days later, we performed Love You, I Do. The audience, largely comprised of our new country-western friends, cheered us on. Seeing Greg in his tuxedo, I thought he’d never looked more dashing. Dance had improved his posture, movement, and confidence. His Parkinson’s was progressing slowly.
We visited my parents in the Nursing Home before returning to Sydney. They watched our routine on the iPad and asked us to replay it every day. We reminisced over family photos, ate Jewish comfort food, and watched old movies.
One day, Greg brushed Mom’s hair in the sunshine. She protested but soon made contented sounds and fell asleep. This moved me profoundly. We’ve never been a touchy-feely family, but the next day, Greg insisted I brush her hair. It was an intimate, tactile, caring gesture and I brushed her hair every day after.
We returned home during a renewed push for marriage equality in Australia. The public debate was divisive. Homophobic posters, graffiti, and online posts appeared everywhere. We attended rallies, donated what we could, and signed petitions.
When the ‘Yes’ camp called for a letter-writing campaign, we wrote to Parliament about discrimination in Greg’s retirement pension.
The trustee required extensive and intrusive proof of our relationship that was not required of married couples. Greg asked me to help him gather and submit these documents in advance. He feared that if he died first, they wouldn’t recognize me as his legal beneficiary. But the pension repeatedly refused them.
“How can they get away with this?”, Greg asked, pacing back and forth. With each bureaucratic, paperwork defeat, I threw papers and swore. We felt powerless and defeated, but the marriage equality debate breathed new life into our resolve. We channeled this renewed energy into our letter to Parliament.
But tragedy put our efforts on hold – My father passed away.
I wrote his eulogy on the plane, and thought about showing him our Love You, I Do routine just a few short weeks earlier. Mom slept through the funeral, something I knew to be a coping mechanism but was no less excruciating to watch. Later, she told me “My friend died.” I brushed her hair, thinking I’d never heard her say anything more intimate.
On my return, Greg said that our letter to Parliament had led to a call from the ABC asking us to appear on their current affairs show, the 7:30 Report. Our dancing and his Parkinson’s had come up in the conversation, and they wanted to use it. I was reluctant. I feared a backlash that could stain our dancing. To me, the issue was the pension inequality. The thought of someone calling Greg an old dancing queen on the street or worse horrified me.
Greg said he’d spent too much of his life kowtowing to bullies and thought it was important to do what we could. The segment aired in September, and I was proud to dance with him on our national broadcaster.
Parliament changed the Marriage Act to include same-sex couples in 2018. We watched the result live on TV with friends. It was hard to breathe. I felt a combination of adrenaline-fuelled excitement and an exhausted release of tension that had built up for months. A group of us went to dinner and drank way too much. We had a table on the street and our community was out in force. Knowing glances, smiles and cries of ‘Yes!’ accompanied the meal.
After this, we again submitted our relationship documents to Greg’s pension. This time, the response was quick. It said, in part:
“Based on the documentation provided, if the relationship is continuous up to the date of Mr Ryan’s death… Mr Levitt would be approved as the eligible spouse… We wouldn’t expect that we would need to request any additional documentation…”
Our dancing had played a role in the win. Greg felt relieved and vindicated. But through our victories, the effects of Parkinson’s remained with us.
Greg told me he’d been hallucinating but had kept it to himself. We were in bed, and he whispered to me there was a woman on the couch. He said, “be quiet so she doesn’t hear us”. I stared at the ceiling until morning.
I became familiar with a recurring cast of characters that shared our home. One day, I was shopping when Greg phoned in a panic. The orange woman was in the house, he said. She was screaming “I’ll kill you! I’ll kill you!” while a group of men yelled “Fight! Fight! Fight!”. He described a boy on the balcony with a knife and a smell of rot and decay in the air. I stayed on the phone with him and arrived home to find him in the back bedroom. He had tried to barricade himself in with the sofa. I drew a bath and sat with him until he was calm.
It turned out one of Greg’s drugs had set off the hallucinations. Over six months, we adjusted medications, attended rehab, and saw a counsellor. By Christmas, they were gone.
During this time, a Nurse familiar with our history said, “dance with him.” It hit me that we hadn’t danced together in ages. So just as it started years before, we began dancing again in our living room. It was intimate, tactile, and caring – like brushing someone’s hair. It brought joy and normalcy to an upside-down world and reminded us that we were there for each other.
We don’t know what lies ahead. But we dance.