Living with Lyme disease

It wasn’t that she struggled to remember the names of her daughters’ friends. It wasn’t that she would forget to pick up her children after soccer practice. It wasn’t that she couldn’t remember the current year or how to count coins. It wasn’t that her foggy mind made her the family outcast. For Sylvia O’Connor, the worst part of Lyme disease was the pain, she said.

“Imagine if you slammed your hand into a car door and you could not extract your hand. You’re talking about pain that’s beyond pain — and you’re living with it,” O’Connor said.

For 40 years, O’Connor, has endured symptoms of Lyme disease, an illness that’s transmitted by the blacklegged tick. The signs weren’t always present. When they were, they were sometimes invisible to others. So, over those years, she was able to get married, have four children and involve herself in neighborhood groups, such as the gardening club.

Her “beautiful life” carried her through the painful, sleepless nights and the extreme fatigue that followed, O’Connor, who lives in Manlius, said. “I had these four gorgeous daughters — and they were beautiful to look at, bright, fun, very creative.”

The 64-year-old compares the years of suffering to a play. When the curtains were up, Lyme disease took over her life. And when they would close, she’d be back on her feet again, she said.

During the symptom-free days, O’Connor learned to play the fiddle. She took creative writing classes at Le Moyne College and at the Downtown Writers Center. She wrote poetry and began putting together a memoir. She sewed sparkling gems on her daughters’ extravagant, colorful Irish-dance dresses. She cooked breakfast, lunch and dinner for her family every day.

In 1974, O’Connor went on a camping trip near the Canadian Shield. At 24 years old, she had a lot of energy, so she and her friends spent the first day diving off rocks and swimming. The next morning, she noticed a large lump on the top of her head, which looked like she “had been hit with a baseball bat,” she said. That’s when she suspects she caught Lyme disease.

After she returned from a week of camping, she woke up the next day with the left side of her face completely numb, she said. For months, her face drooped. Drool ran out of the side of her mouth. She would accidentally bite the inside of her mouth. She lost her smile, leaving her feeling very insecure. “All of the sudden men aren’t looking at you anymore, all of the sudden you’re a freak,” she said.

Eventually, the paralysis disappeared. She didn't experience symptoms for years until 1987, after she gave birth to her third daughter. That winter the numbness returned, though less severe, and left after a week. But then, severe headaches and back pain developed. She couldn’t stand loud noises and her “brain felt bigger than her head,” O’Connor said. These symptoms waxed and waned for the next two years.

Family Ties 

On Jan. 1, 1990, while she was pregnant with her youngest daughter, she entered the chronic stage of Lyme disease, O’Connor said. So, for Carolyn O’Connor, 24, her mother’s illness was all that she knew. “In some ways, I was really lucky because she was too sick to work, so she was home a lot. We spent a lot of time together. So, she was a really big support for me in a lot of ways.”

But there were times that her mother wasn’t always present. Some days, Carolyn O’Connor would return home from school and find her mother napping. She watched as her mother started creative projects and never completed them. As a child, she couldn’t understand why her mom wasn’t the best role model, like her friends’ parents, Carolyn O’Connor said.

“Their moms would be up and engaged and remembering and so involved in their lives. But my mom wasn’t like that. She just really wasn’t that involved in what I was doing.”

She has a good relationship with her mother today, Carolyn O’Connor said, because she understands that her mother’s shortcomings stemmed from the disease. But that wasn’t always the case. She and her sisters often thought that their mother was pretending. “It sounds like this can’t be real. You can’t really be that tired. You can’t really forget these things,” she said.

In 1997, when Carolyn O’Connor turned 7-years-old, her mother had received her diagnosis and began recovering from the chronic stage of Lyme disease. As her mother’s condition improved, Carolyn O’Connor began to notice positive aspects of her mother’s personality, such as her creativity.

“Who she is today is just being able to do things and solve problems and fix things,” she said. “I think that’s really incredible and kind of a dying art in people today.”

During her suffering, O’Connor vented through writing. One day, O'Connor became so frustrated with the pain that the words for her poem, "Lyme Disease Get Out of Me," came to her.

Leaded muscles, weighted muscles, immobile muscles, please move. Two hours, three, time slips away, sometimes tears, sometimes kids, sometimes the phone, sometimes my husband, brushes past the air that binds me. 

Strong Bonds

Lyme disease never interfered with O’Connor’s relationship with her best friend, Liz Moran. “She tried to manage it and not have it interfere with too much. She would rest in the afternoon if we were going to do something. She would ask for help, but not a lot,” Moran said.

Throughout their 30-year friendship, they’ve watched each other’s children grow up and have supported one another during hard times, such as family illnesses and deaths. Their mutual love for the outdoors brought them together, Moran said, and O’Connor’s positive outlook kept them close. “She is loyal, and loving and intelligent. And her value system is very much based on family,” Moran said. 

Both of their parents live far away, Moran said, so every year their families spend the holidays together. On Thanksgiving, the two families share dinner at O’Connor’s home, and Christmas takes place at Moran’s house. Their tradition has earned the two women nicknames:  O’Connor is known as the “Queen of Thanksgiving,” and Moran is dubbed the “Queen of Christmas.” “We were living in this area without a lot of extended family support, so you make your own network,” Moran said.

Moran’s husband, Marco Coronado, was the first person to suggest that O’Connor might have Lyme disease. Coronado has worked as a veterinarian in Cazenovia, New York, for more than 30 years. In 1995, O’Connor described her symptoms to him. They matched what he had seen in animals and had read in medical literature about humans, Coronado said.

“They’re acute at one point, but they can become chronic,” he said. “They can really hide in the system, and then come up again, depending on your immune system.” Taking Coronado’s advice, O’Connor found a new doctor who contacted the National Institute of Health. After filling out the paperwork and getting examinations, she received a diagnosis. The doctor then prescribed her antibiotics. After taking the medication, the pain and fear subsided. Stairs were no longer impossible to climb. She could run again. 

After her recovery, joy replaced sorrow. So, she returned to her prose poem, “Lyme Disease Get Out of Me,” which ends on a happier note.

Four years on medication and I pick up the bow of my fiddle, close my eyes and play traditional Irish music at the Limerick Pub surrounded by friends. My hands, fingers, shoulders and arms all respond, my feet tap and my mind remembers tune after tune.