Maeve: Maeve: Hi, I’m Maeve Marsden, and you’re listening to Queerstories. This week, Joe Levitt moved to Australia from America in 1996 at the age of 36. He recently retired from work in clinical trials, but has also been a dance instructor, flight attendant, registered nurse, pharmaceutical rep, and bartender. When not contemplating what to be when he grows up, he can be found biking, swimming, at the dog park, or dancing with his husband. He performed this story in Sydney.
Joe: 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 and the school of pharmacy. 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, the loud mouthed, blunt, and loquacious American. 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.
With Parkinson’s, things become progressively slower and smaller, like handwriting, balance, voice, smell, facial expression, and thought processes. 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 hoped I’d have the strength to be there for him, like he’d always been there for me.
I’d seen people I deeply love recede before, when I managed care for my parents’ dementia. I’d begged them to come to Australia for years where I could look after them, but they were unwilling to leave everything they’d ever known. Greg helped me manage the tyranny of distance. We set up social worker visits, Skype calls and care conferences, and my parents adored him. Even through their dementia, they always knew who he was. He’d made many visits with me 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 America, long before it was legal in Australia, and my parents threw the reception.
Though shell-shocked by his diagnosis, Greg acted decisively. He enrolled in Parkinson’s classes combining exercise with cognitive tasks. Exercise suppresses symptoms and makes life more manageable. One day, while watching Greg in one of these classes, it struck me that I might achieve the same thing by asking him to dance.
I had learned to partner dance in night clubs during the disco era from my friend Robert, a legendary street dancer. He encouraged me to apply for a ballroom dancing job and I ended up teaching for a decade. I can still hear his mantra “This is your life, it’s not the dress rehearsal!” Robert was the first friend I lost during the AIDS crisis in the 80s.
Greg was not the ferociously confident dancer Robert was. In our first dances together in our living room, he was reluctant. Clumsy. He cut the first few sessions short, obviously frustrated. But eventually, he relaxed. He still feigned impatience, but I tell he was enjoying it. Eight weeks into it, the Sydney Gay and Lesbian Choir advertised for same-sex ballroom dancers saying that “enthusiasm is more important than skill or expertise.” Though quite reserved, Greg agreed to participate in the choir’s stage show, ‘Cheek to Cheek.’
Performing to a large audience appealed to Greg more than performing for an audience of our three dogs. We made new friends, shared our dancing with everyone who attended. Shortly after this we answered a market research survey that lead to us dancing in an NRMA home insurance ad. At the audition, Greg mentioned his Parkinson’s and how we practiced for Cheek to Cheek in the living room. They loved this, and they featured our story. It was great fun and the $1500 did not go astray either.
Following two local dance competitions, we decided to compete at the World Out Games in Miami, visit Disneyworld, and see my parents. I choreographed a solo routine for us to Love You I Do from Dreamgirls as a special gift.
It was a labour of love and Greg put everything into learning it. But we arrived in America to find that the Out Games had been abruptly cancelled due to financial mismanagement and fraud. I was heartbroken. The Out Games dance organiser was madly making calls while fending off other disappointed competitors. A group of same-sex country western dancers invited us to their social dance being held that evening and as we two stepped and line danced, a smaller-one day competition was organised. We got to perform our Love You I Do routine.
Seeing Greg in his tuxedo, I thought he’d never looked more dashing. Dance had improved his posture, movement, and confidence.
We organised an earlier arrival to Disneyland and we unexpectedly landed in the middle of their annual gay weekend. We attended their Riptide party at Disney’s waterpark, where we partied with 6000 friendly patrons, drank gin, danced, went on water rides until midnight.
The next morning was red t-shirt day, where our community descend on the magic kingdom and it was epic. A sea of red, and a few confused families who didn’t get the memo.
At the nursing home, my parents were thrilled to see us. One day Greg brushed mum’s hair in the sunshine. She made protested noises but soon was contended and fell off to sleep. I was moved by this profoundly. We’ve never been a touchy feely family, but the next day Greg insisted I brush her hair. It was an intimate, tactile and caring gesture, and I brushed her hair every day after. We looked at family photos, ate Jewish comfort food and watched old movies. It was hard to say goodbye to them.
We returned to Australia during the marriage equality debate. Before the trip we had written a letter to parliament sharing our experience with discrimination in Greg’s super scheme. Greg feared that if he died first, I wouldn’t be recognized as his legal beneficiary.
The scheme didn’t accept binding nominations. Instead they required extensive and intrusive proof of our relationship that was not required of married couples. Greg asked me to help him prepare these documents and submit them in advance, but the pension repeatedly refused them.
“How can they get away with this?”, Greg asked, pacing angrily. With each bureaucratic, paperwork defeat, I threw documents and swore loudly. We felt powerless and defeated, but the marriage equality debate had breathed new life into our resolve. Sadly, tragedy put this battle for equality on hold – my father had passed away.
I wrote his eulogy on the plane, thinking about showing him the video of our Love You I Do routine just 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. I thought 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 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 superannuation inequality. The thought of someone calling Greg an old dancing queen on the street or worse was horrifying.
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 that September and I was proud to dance with him on the national broadcaster.
When parliament ultimately changed the Marriage Act we watched the result live on TV with friends. It was hard to breathe. We screamed, cheered, we cried. I felt a combination of adrenaline-fuelled excitement and an exhausted release of tension that had built for months. A group of us went out to dinner that night, 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 that meal.
After this, we again submitted our relationship documents to Greg’s super scheme. This time, the response was much quicker. It said, in part:
“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. Things escalated quickly, and I became familiar with a recurring cast of characters that shared our home. One memorable 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!” He spoke of a boy on the balcony with a knife and described a smell of ‘rot and decay’ in the air. I stayed on the phone with him and arrived home to find him in the bedroom having barricaded himself in with the sofa. I drew a bath and sat with him until he was calm.
One of Greg’s drugs had set off the hallucinations. Thanfully, they slowly resolved.
During this time, a Nurse familiar with our history said, “dance with him.” It realised then that we hadn’t danced together in months. So just as it started years before, we began dancing again in our living room. It was intimate, tactile, and caring – just like brushing someone’s hair. It brought a 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.
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