Karen and Rob’s first interaction wasn’t exactly a meet-cute, the charming and serendipitous first encounter that often begins a sweeping on-screen romance. Modern love often means online dating – algorithms and photo swiping and text messages instead of handwritten letters. In May 2010, at the encouragement of her girlfriends, Karen decided to take her own chance at modern love, giving herself one year to find the one by signing up for 365 days of Match.com. “If I didn’t find him in that time,” she told me, “I’d chalk it up to not meant to be” and move on with single life.
After spending 31 years in corporate life running a 100-million-dollar company, Karen was ready for a new adventure, “something with less time spent in the head,” she told me, and more in the heart. When it comes to affairs of the heart, signing up for a dating site means cataloging lists of desired traits in a potential mate – a human “wish list,” if you will. But Karen’s list wasn’t a fantasy or something carelessly tossed together. “I had an intention list,” she told me. “And I read that list every morning when I did my meditation, this whole list of qualities I was looking for in a partner.” She was looking for someone with self-awareness who had taken time in life to “do the personal work.” She was looking for someone with a “spiritual side, a kind heart, someone interested in social justice” (at the time, Karen volunteered as a Buddhist meditation teacher in an Oregon prison).
And in the ten months that followed, Karen met some great men, men who took her to farmer’s markets on Saturday mornings or movies and museums. They just weren’t the one for her. So Karen went on with her life. She and her girlfriends spent two weeks backpacking in Costa Rica; she could live her adventure with or without a man. But in March, something curious happened: Rob’s profile showed up in her Match.com inbox. She was intrigued.
Karen and Rob, 2011
“He was so cute,” Karen told me. “He said something in his profile about ‘four chords’ and how he could write a song from that. He mentioned he had Parkinson’s. But it was just one of the most well-written and humorous profiles I had come across, and humor was on my list.” Karen decided to email him back, simply wishing him well and writing, “Your profile made me laugh. Good luck with your search.”
Would They or Wouldn’t They…?
As you’ve probably guessed by now, their first encounter didn’t end there. They spent a month emailing back and forth. And nearly 30 days before her year subscription to Match.com expired, they finally set a date for lunch.
“But he emailed me that morning,” she said, “Saying, ‘I have to cancel.’”
I put my hand to my heart and gasped, “Oh, no!” I told Karen, as if living vicariously, worried he was ghosting her. “Did you think it was over?”
“No,” she said. “He emailed back and said we could reschedule.”
The following week, they met for lunch, carrying all the anticipation of a real life first encounter: would their online chemistry translate offline? “We had lunch at a little restaurant in Lake Oswego, a suburb of Portland that’s actually on a lake,” Karen told me. “When lunch ended, I said, ‘Well, I’ve got to get my walk in for the day.’ I walked two miles every day. And he said, ‘Do you mind if I join you?’”
She didn’t mind. By the time they said goodbye, it had been five hours. “It was the longest lunch I had with any of the people I met online.” She knew it was kismet.
But what about the Parkinson’s?
In her delightful love story, Karen had merely brushed by the fact that Rob had Parkinson’s. “Did it overwhelm you when you read it in his profile?” I asked her. “Did it make you pause?”
“Before Rob, I didn’t know anyone who had Parkinson’s,” she explained, “so I didn’t know much about it at all. I mean, I looked it up; I knew it was a chronic illness. But this didn’t seem to stop Rob. He was doing his music, we were going to music venues during the week to see his friends and their bands play. He was still writing and having these bands perform his music. It just really didn’t seem to be an issue other than the fact that, you know, he shook. That was about it.”
Later, I asked Karen if her intentions came true: did Rob match what was on the list she had meditated over every day prior to meeting him? “He did, he met every single thing on that list; however, I had not put health on the list.” She paused. “My not putting it on there means I must have never even considered it. It must not have been that important to me.” By the time she started considering it more, she was already in love and that was that. Love is a force and, under its sway, we sometimes find ourselves in places we never predicted and we find blessings exactly where we are planted.
How does Parkinson disease affect marriage?
Karen and Rob have been together for over ten years now. “This is the most adult relationship I’ve been in,” Karen told me, where they’re honest with each other, where they put in the work.
“What has surprised you in ten years?” I asked her.
“That you can be your authentic self with someone,” she told me. “And that you can allow them to be theirs.”
She described their relationship as two very independent people coming together, leaving space for the other to have their time alone, to pursue their passions, and to live happily with that balance. “I’m curious,” I said, “since you both seem so independent, do you consider yourself a care partner? Is that a term you’d use?”
“I do,” she said. “Over the ten years we’ve been together, his Parkinson’s has progressed. I do care a lot for him. You know, it used to be that we’d cook together, but he can’t really do that anymore. He can’t be in the kitchen with his walker and move pans. We’re both Italian and we used to make these big Italian meals together. So there’s been that shift…And he quit driving a year after we met, so now I do all the driving. It was an adjustment for both of us because now we have to coordinate our schedules. But we do it.”
At the heart of what Karen was saying seemed to be a gentle and loving willingness to find each “new normal” together, to make adjustments. To allow the shifts and approach them with a readiness to embrace change and find alternatives. Karen also said they have great neighbors who will look in on Rob when she’s away. Having a village of support brings not only lightness to the journey but gratefulness to the heart.
Me, You, and PD: Advice for Loving with Parkinson Disease
I wanted to know if she had any advice for others who may be embarking on a new relationship with someone with Parkinson’s. “Oh gosh, love with Parkinson’s,” she said, smiling and reflecting for a moment. “Well, you need to be very accepting and know that physical things will get in the way. It’s just about being accepting of the person, of who they are, and moving beyond any worry about what might be coming down the road. You don’t need that worry,” she insisted. “It’s too much. Live in today.”
“Ah, the lesson taught by every spiritual teacher,” I said. “Be present.”
“Exactly,” she said. “We just say, ‘Well, today is today’s normal. Tomorrow is a different day.’ Because, with Parkinson’s, one day he might have ten falls. And the next day, he might have none. It really forces you to live in the moment. And that’s probably one of the beauties about it. I mean, it’s a miserable disease. I hate it. But you get to take each moment as it comes.”
Plenty to Love
At the end of our conversation, I wanted to know what Karen loved most about Rob, beyond his diagnosis. Who is Rob, the man?
“I think what I love most about him is his spirit. You know, he just doesn’t give up. He keeps on going and doesn’t complain. And he’s just sweet. Really, he’s just the sweetest person.”
The Privilege of Loving
Sometimes, we have expectations of what love’s meant to be. Love is not a fairytale, and that’s the beauty of it. It’s messy and real and full of uncertainties. It’s the grounds where we’re challenged – and challenged to grow, individually and together. We don’t have to love; we get to love. And no matter who we are, we are all worthy of this blessing.