His daughter had been moved to the intensive care unit. And so he sat there next to her, a powerfully built man with shoulders like a linebacker who, day after day, watched over his little girl.
Sandy was 29 years old, the youngest of his three daughters. The one who was most like him: stubborn, smart and analytical. Even now, with the tangle of tubes that kept her breathing, he couldn’t help but think she looked beautiful, with her thick dark hair and her green-gray eyes.
She had been a happy and healthy teacher in the Evanston school district when, in June 2009, a rare neurological disorder left her paralyzed and unable to speak. Now, the only way she could communicate was by blinking her eyes.
Driving home from the hospital, Rick Jarosz wept in the car. But he would never break down in front of his daughter.
On one of the first days in the intensive care unit, when her system was shutting down and no one could say what would happen next, he made a promise. “I will never cry next to your bed,” he told her.
He was her father. If she couldn’t walk, he would be her legs. If she couldn’t speak, he would be her voice.
In the evenings, before he left, he kissed her forehead, leaned close and whispered: “I love you, I love you, I love you.”
Doctors battled the disease with state-of-the-art technology and powerful drugs. But in the end, it was a family’s love that might have been the most potent medicine of all.
“As a physician, it’s a beautiful thing to see. Even in silence, you could see that (Sandy and her father) had a strong, amazing and beautiful relationship,” said Dr. Mario Affinati, an internist at Advocate Lutheran General Hospital in Park Ridge. “In a situation as critical as this one, the family is as important as the medical team. You need to feel the presence of family and people who care for you. It puts you in a place where you can heal.”
In 2009, Sandy Kozlowski was busily going about her life as a middle school teacher. A creative and energetic woman with a big smile and quick wit, she helped run the musical at an area high school, directed the choir at church and gave piano lessons to kids on weekends.
But one afternoon, she felt a tingling in her fingers and legs. Within a few weeks, the tingling had turned to numbness.
Doctors diagnosed her with chronic inflammatory demyelinating polyneuropathy, a rare neurological disorder that attacks the myelin sheath — a fatty covering — around nerves.
By Thanksgiving, she could no longer walk. Soon after, she lost feeling in her arms.
By Christmas, she was paralyzed. She couldn’t swallow, and she struggled to breathe.
For a few days after doctors inserted a breathing tube, she could squeeze someone’s hand. But soon, she lost the ability to squeeze.
The disease was pulling her away. Away from Mike, her devoted husband, who slept in a chair beside her hospital bed every night. Away from her mother, Bonnie, who came every day after work. Away from her sisters, Jenny and Shelly. And away from her father.
Rick Jarosz, 60, had watched his daughter’s deterioration with a growing sense of helplessness. A tall, gray-haired man with a ruddy complexion and a gregarious personality, he was the oldest of eight brothers. He never finished college, but with a knack for business, he started a small, successful company that manufactured plastic electronic parts. His daughters called him MacGyver, after the 1980s television character because he was always fixing things.
Now, more than anything, he wanted to fix Sandy.
This was the daughter who, when she was just a toddler, would wait for him on the front step. At 10 years old, she challenged him to chess matches and played duets with him on the piano. Her smile, he thought, was “like sunshine.”
She had been married only two years when she was hospitalized. And if the illness had been a test, Mike had shown the power of his love. For weeks, he refused to leave Sandy’s side. But he had a job as a carpenter and eventually had to return to work.
Then it was Jarosz who stepped in as Sandy’s daytime caregiver.
In those early days, he had come up with a way for Sandy to communicate. Though she could not speak, she understood everything that was going on around her.
In a slow and measured tone, Jarosz recited the alphabet. “A, B, C …” he said.
When he reached the first letter in a word she wanted to say, Sandy blinked.
Jarosz wrote the letter in a green spiral notebook. Then, he started again. “A, B, C …”
Blink by blink. Letter by letter.
It was tedious, laborious, heartbreaking.
A phrase like “ITCH MY NOSE” could take 10 minutes.
But without her father, Sandy couldn’t even say that much.
Jarosz translated her blinks for the doctors and, month after month, kept her connected to the outside world.
At night, Mike would return from work to sit sentry next to her bed.
Eventually, they came up with a shorthand. “SX” meant she was having trouble breathing and needed more suction. “V” stood for Versed, a pain medication.
Sometimes, Sandy would blink quickly, almost fluttering her eye. That meant: I love you.
Doctors used every weapon in their arsenal. High doses of steroids. Rounds of cyclophosphamide, a drug typically used in chemotherapy. Treatments using blood products such as plasma and immunoglobulin.
“She was sicker than anyone I’ve ever seen,” said Dr. David Sager, who has practiced for 33 years and who directed Sandy’s care. Some of the treatments were a long shot. “But when you’re looking at someone this sick, you’ll do anything that you think might work.”
Sandy had been diagnosed with lupus, an autoimmune disease, in 2008. The symptoms had initially been mild. But Sager believed that the attack on the myelin sheath was a manifestation of the lupus. In theory, Sandy should have been able to bounce back; the body can regenerate myelin.
Yet, for months, even the most aggressive treatments couldn’t halt the progression of the disease. She underwent MRIs, CT scans, spinal taps and nerve conductivity tests. There were days when her blood pressure and heart rate would go through the roof, sending the nurses scrambling to bring her system under control.
It was January 2010 when, inexplicably, the doctors noted an improvement in her labs. The disease that had appeared out of nowhere was now, just as suddenly, making a retreat.
One afternoon, Sandy blinked out a message to her father. “FEEL MY SHOULDER.”
Jarosz slipped his hand under her back.
Feel what?
“TWITCH,” she blinked.
At first, he felt nothing.
But a few days later, he felt it. A tiny movement, so subtle that it was easy to miss.
Sandy could flex her muscle.
In March, she was strong enough to sit up. In April, she was able to turn her head.
In May, Jarosz was working in his company’s warehouse when the cellphone rang. He could see that it was a call from the hospital.
“Hi, Pops,” said the woman on the line. Her voice was raspy and weak. It was Sandy.
Jarosz’s eyes welled with tears. It was the first time he had heard her speak in five months.
“What made her better? Was it the arc of the disease or the treatment? The real answer is we don’t know,” said Sager, the doctor who directed Sandy’s care.
Sometimes, survival depends on more than just medications and doctors.
“To survive an illness like this, you have to have an incredible will to live, and you have to have people around you that help support that will within yourself,” Sager said. “This family was a perfect example of that.”
Nearly two years later, Sandy is back at home, living in a split-level house with her husband.
She is busy with physical therapy and doctor’s appointments. But Wednesday afternoons are for her father.
“He’s a constant,” she said. Having him in the hospital meant “I knew that I wouldn’t have to fight to be heard. I knew that I wouldn’t have to worry.”
On a recent day, she arrived at the restaurant first, rolling off a Pace bus and zipping through the door in her electric wheelchair. A minute later, her father arrived and kissed her on the cheek.
Sandy’s mom and her 3-year-old niece, Samantha, came along too.
Over salads and shrimp tempura, they talked and talked.
Sandy used two hands to spear a piece of grilled chicken. Her hands are still weak, but they are getting stronger. Doctors hope that she’ll eventually be able to walk again.
“When I couldn’t speak, you guys were my lifeline,” she told her parents.
After lunch ended and his daughter rolled out the door, Jarosz leaned back in his chair. He talked about the months his daughter spent in the hospital and her long fight toward recovery.
“My thing,” he said, “was to be there when she needed me.”
