Amy and Pat Tomasulo’s living room is extremely neat. A large bouquet of fresh flowers sits on the kitchen counter. The flowers are courtesy of Pat, not because of the interview; they’re a weekly gift for his wife. The entire space is minimal, unfussy, clutter-free and the decor mostly consists of various-sized framed photos of the couple and their extended family.
They are dog people. Penelope, a very sweet two-year-old, chocolate Labrador mix, greets me and my photographer at the door. “Penny” is clearly a lover — her long tail wagging like a fast windshield wiper. She doesn’t mind kissing strangers. There’s a large framed picture on top of a bookshelf of her predecessor, Elle, her face smushed between Amy and Pat’s. Elle has passed on but her gray muzzle smiles down, approvingly.
LAUGH YOUR FACE OFF! When: 6:30 p.m. May 5 Where: Park West, 322 W. Armitage Tickets: $60-$85 Info: laughyourfaceoff.org
The Tomasulos are a great-looking couple, svelte and attractive. They are young and gregarious, unpretentious and down-to-earth. Pat’s gig as morning sports anchor on WGN-TV Channel 9 and the recent addition of his weekly nighttime talk show “Man of the People” keeps him on a tight schedule run with military-like precision. His sarcastic and irreverent antics are relatable and beloved by his fans. He’s a funny man that knows how to poke fun of himself.
Despite appearances, the couple faces an indiscernible battle.The Tomasulos are on a personal mission to help find a cure for trigeminal neuralgia, a chronic pain condition affecting the trigeminal nerve, which is one of the most widely distributed nerves in the head, carrying sensation from the face to the brain. For 17 years, Amy has suffered from the rare disease, which inflicts debilitating, stabbing, electric shock-like pain, often described as the worst pain a human being can experience.
This is the fourth year they are raising money for the Facial Pain Research Foundation research efforts through their fourth-annual fundraiser, Laugh Your Face Off! So far, the fundraiser has raised over $630,000, and this year they hope to break the million-dollar mark in total funds raised. Featured performances include top Chicago comedians, and all the money raised goes toward research for a cure.
“Once we learned there was a group funding research, it was that night we decided, ‘Yeah, we’re doing our own event.’ It was more a feeling of finally having some direction and an end goal rather than just an idea,” says Pat.
I believe if anyone can help find a cure, they can. While so many relationships crumble under the weight of far less heavy obstacles, it seems Amy and Pat are strengthened by overcoming them and the goal they see so clearly.
And the irony that laughter can trigger attacks for Amy isn’t lost on them. “If I talk a lot, it causes an attack. If I smile and laugh a lot, it causes an attack. But laughing is one thing that I love to do, so I won’t give that up,” says Amy.
Seventeen years ago, Amy woke up with “excruciating pain and knew it wasn’t right.”
“There was a constant pain in the left side of my face. It felt like the entire side of my face had been smashed with a two-by-four. There was also a heavy feeling. I ran to the mirror to see if my face was moving… the attacks kept coming. I knew I needed to get to a doctor, because the pain was unlike anything I had ever felt in my life.”
Trigeminal neuralgia affects nearly 400,000 Americans. Many of those afflicted mistakenly seek help from dentists, assuming it’s related to a tooth ache. It’s difficult to diagnose because the pain typically comes and goes, and because many physicians simply have never heard of it or underestimate its severity.
Often this is the most frustrating issue for Pat. “For me, it’s [about] the doctors. Like if she has to go to the ER [and we hear] ‘Do you want some Advil?’ [And I’m like] Are you serious? That’s the most frustrating thing for me, when we know so much more than the doctors.”
While Amy was diagnosed accurately from the start and has great doctors in Chicago, none of the current treatments, including medication and facial surgery, has worked for her. Even worse, she suffers from an atypical version of the disease, where she consistently experiences a base line of pain on the left side of her face, accented by episodes of severe stabbing pain that usually hits a 10 (on a pain scale of one to ten).
Amy has a quiet fortitude. I wonder if she’s more soft-spoken because it’s less painful to speak with less tonal inflection. But she’s also matter-of-fact. Her brown eyes often fixate on a point when she talks about herself. I get the sense she’s the type of woman who gets things done, and I can’t imagine her frustration at her limitations. Her focus is rivaled by Pat’s — both are intense in their own way. Pat, whose television persona never seems at a loss for words, gives her deference, and picks up her sentences when she looks over at him. At the onset of our interview he insists they switch seats so she’s closest to me. He wants her to shine.
“Early on, I was a little more angry about it. Not like why me— I never said, why me? — The fact that I couldn’t fix it, and I couldn’t get it fixed made me angry,” Amy says. “But then I learned to live with it. It made me see things differently. There are no really good days, but [there are] better days. I don’t take any of those for granted.”
Triggers can be wide and varied and often involve simple every day necessities and tasks.
“It’s so sudden. Sometimes there are triggers like wind, or light touch, eating, brushing your teeth, you can be doing literally nothing and it comes on,” she says.
Cold weather is another factor, and Amy just doesn’t go out in the winter. Summer isn’t any simpler for her to navigate, either.
“People love a breeze — who wouldn’t on a hot day! In the summer it’s 90 degrees [and] people are like ‘Oh God, this feels so good.’ And I’m cowering in the corner,” she says, her eyes sparkling. Her sense of humor shines through, even though it’s at her own expense.
Amy and Pat met in Rhinelander, Wisconsin, six months after her diagnosis. Pat, originally from New Jersey, was working his first TV gig as a broadcaster. Amy was from Southwest Florida but moved to Rhinelander to spend time with her brother, mother and stepfather, and work for their business while she figured out what was next.
That “next” for Amy would include Pat. They met in a bar and the feelings were instantaneous. “I don’t think either of us had thought we would have met our future soul mates,” says Pat, and they’ve “been in contact every single day since then.”
Amy told Pat right away about her diagnosis, and she says, “He was right there, he went through all of it with me.”
“That’s what made her so special to me. That was what drew me to her more than anything, just her resolve,” he says.
That resolve includes a daily emotional and mental battle against a very isolating disease. How is someone nice and friendly when they are in constant, often, excruciating pain? How do you make plans? How does it affect your relationships — family, friendships and marriage?
“It’s hard when you constantly don’t feel well,” Amy offers. “You don’t want to be weak and you don’t want to let the disease win. You don’t ever want that to happen but I have a few days that I slip up. I always want to stop myself from letting it happen. It’s just letting it win. It’s so much easier to let that happen or just to be nasty, not even nasty, but just unpleasant. It’s harder to be nice and fight like that. I have to do that for me. I have to. Because it shows that I’m winning in at least one area that I can control.”
The Tomasulos have lost some friends along the way but most understand that the best way to be supportive is to be flexible. Amy never knows when she will feel well enough to go out. And then there are the triggers when she does venture out: ceiling fans, air vents in cars and restaurants and wind conditions.
Amy admits it’s exhausting. Even planning for a vacation can be daunting. “I’ll never be able to go to Hawaii,” she says, with enough conviction that I’m convinced she’d never want to go anyway. I’m sure she’s quite good at making her loved ones feel like she’s not missing out.
Sure, not being able to go to Hawaii or get a facial may not sound like the end of the world. But just think about constantly having to be aware of which side you sleep on, or whether you can just go on a picnic or to the beach.
The couple seems as aware of their privileges as they are of the obstacles ahead. To me, they seem the most in-sync couple I’ve ever met. Their world view is aligned and so are their goals, and how each informs the other in terms of growth.
“I’ve been accused of being too sarcastic but there’s a prism through which you see things, when you see what real issues every day are,” Pat says. “I know my tolerance for nonsense has decreased about tenfold in the last couple of years, especially. I probably speak my mind a little bit more than I used to because it’s hard to… and I try to — me more than her — I try to check myself, because you can’t expect everyone to understand, unless you live with it every day. There are people who are experiencing far worse than she is physically — far, far worse than we are together. So, we’re cognizant of that too.”
Pat tells me that he hasn’t touched the left side of Amy’s face in 17 years, and it’s an accomplishment to walk the dog together half a dozen times a year. But I have a feeling it’s less about what they can’t do together than what they can.
“We put in the time. There’s obviously that love. But I also think it’s our normal. We’ve never known any other circumstances or any other scenarios,” he says. Jokingly adding about himself, “This is a whole bag of issues unto itself! Her issues are more justified than mine.”
“He’s an amazing guy, the sweetest guy I’ve ever met in my life. Best man I’ve ever met in my life obviously — caring, attentive, loving. It might help that we don’t see each other that much.”
They both laugh.