Sunday, August 16, 2009

Negotiating Tourette's in a relationship

From The NY Times Vows section:

Before asking Anne Miller out on an official first date, Michael Davoli knew he had to make two major disclosures. “I was terrified how she might react,” he said. “I didn’t think she would break up with me, but it was one of those things. You don’t know. You can’t help but be afraid.”

A friend had introduced them at a concert in fall 2005, and they happened to see each other again the following February when he was coincidentally moving into the same Albany apartment building where she lived.

They recognized each other, and she immediately offered to watch his beloved Weimaraner on the stoop while he and his father hauled boxes to the third floor.

Within the week, he locked himself out of his apartment, and because she was the only person he knew in the building, he knocked on the door of her second-floor apartment. She used a credit card to jimmy his door open.

“She’s hot, my dog likes her and she picked my lock,” he thought. “That’s pretty cool.”

Less than a month after he moved into the building, they were sitting on her couch. “I like this girl,” he remembered thinking. And then he told her.

“I have this condition,” he said, explaining his Tourette’s syndrome, a neurological disorder that was first diagnosed when he was 9. For Mr. Davoli, now 34 and a lobbyist for the United Federation of Teachers in New York, Tourette’s manifests itself in a combination of physical tics including constant eye-blinking, head-nodding and rapid arm movements.

“I wanted her to know I may never be able to hold her hand in the way I would want to,” he said. “I needed to know she’d be O.K. with that.”

His case is considered mild, and he doesn’t usually have verbal tics. As for his physical tics, his mother used to help him make light of them by giving them nicknames like “the chicken” for when his arms flapped. Over the years Mr. Davoli has made various adaptations to compensate, often by stretching his arms and legs when he feels a physical tic coming on. But there can be problems with how others view him.

“On one occasion in high school a girl slapped me because she thought I was winking at her,” he said.

Ms. Miller, now 32 and a producer in Manhattan for AOL, was at the time a reporter for The Albany Times Union. She responded to the Tourette’s disclosure first with a journalist’s curiosity and then with an already infatuated heart.

“I hadn’t really noticed anything — so clearly it wasn’t that big of a deal,” Ms. Miller said. “To me it was, ‘Who is this person?’

“I had a huge crush on this guy with beautiful blue eyes.”

Two weeks later, in his apartment, after a couple of great dates, he revealed his other potentially deal-breaking issue: he is an avid follower of the rock group Phish. He has made pilgrimages to 183 of the band’s concerts since 1992, and attending the shows often means traveling, camping and following the group in much the same manner that fans pursued the Grateful Dead.

“Tourette’s is a pain, but it doesn’t make life unbearable,” Ms. Miller said. “The Phish thing is far and away something more we have to negotiate than the Tourette’s.”

But Ms. Miller has her own imperfections.

“She’s the messiest person I’ve ever met in life,” Mr. Davoli said of the woman who never closes the kitchen cabinets and loses her keys regularly. “I have to pick up after her.”

But he also has obsessive-compulsive disorder, a common condition for those with Tourette’s, leading to excessive tidiness. “If I didn’t have to pick up her stuff, I’d still have the O.C.D. compulsion and I would end up reorganizing the kitchen cupboard. Her being messy is helpful, in a way, for preserving my sanity.”

In fall 2007, Mr. Davoli, who grew up in Syracuse, was considering a new job and moving to New York City, which was creating stress. He started to develop vocal tics for the first time, including involuntary humming. “For the first time in my life, I’m breaking down in tears,” he remembered. “I’m a lobbyist. I’m paid to talk, and all of the sudden I’m faced with this inability to communicate. It was horrifying.”

Ms. Miller reassured him that they would get through it together.

“It’s hard to sit next to the person you love and want to put an arm around him, but you can’t because he doesn’t want to be touched when his muscles are so tight,” she said.

As his stress decreased, the vocal tics subsided.

“She held my hand and she helped me,” he said. “I thought, ‘I want to marry this girl.’ ”

Ms. Miller and Mr. Davoli are avid baseball and college basketball fans. (“Going upstairs to ‘watch college basketball’ became a euphemism” for something else, she said.) One day in April 2008, after attending an Orioles-Yankees game at Camden Yards in Baltimore, he proposed. She was completely taken off guard and didn’t answer but jumped at him. “Can I take that as a yes?” he asked.

Ms. Miller’s mother, Hannah Miller of Salisbury, Md., said that Tourette’s was a nonissue. “My husband was more concerned that Michael was a Yankee fan,” she said, adding, “Michael’s smart and so is she. He challenges her.”

Three days before their wedding in Rehoboth Beach, Del., Mr. Davoli flew to Denver for a Phish concert. He was back in Rehoboth Beach 36 hours later.

Thunderstorms rolled through on Aug. 2, drenching the couple’s plans for a beach wedding. But Ms. Miller and Mr Davoli (he in a skullcap with a Phish logo) were beaming anyway as they stood before Rabbi Steven Saks and their 80 guests, who had gathered inside the Henlopen Hotel on the boardwalk.

“I couldn’t decide whether to cry or laugh,” the bride said afterward. “I was so happy. I didn’t know how to keep it in. I just kept winking at him.”

The newlyweds kissed, embraced and moved effortlessly through the crowd.

Mr. Davoli, who sleeps with his back to Ms. Miller to avoid kicking and bruising her during the night, has only one wish for their future.

“I would love to fall asleep with her in my arms, just once,” he said.