Stroke Survivor Uses CaringBridge as a Way of Expression to Avoid Depression

Allie Levine was in the beautiful, chaotic, busy time of life. With three of her four girls grown and living on their own, she was immersed in the activity of her youngest daughter’s senior year of high school and planning her oldest daughter’s wedding. She was also coaching cheerleading at private schools and an all-star gym in her town of Chattanooga, Tennessee.

It was a life she’d dreamed about when she first came to Chattanooga for physical therapy school, met her husband, and settled down.

And then one day, the life she’d known came to a screeching halt.

“I had been having some difficulty with swallowing, and my doctor thought it might be acid reflux,” Allie recalled. “By the end of the day, I had already been contacted by a surgeon at Vanderbilt University Medical Center in Nashville.”

An aneurysm had started to form, and Allie needed surgery. She wasn’t new to health challenges. While she was in physical therapy school, she had a cardiac emergency that required open heart surgery to repair two congenital heart defects. “They were able to get it under control, and it wasn’t that big of an issue,” Allie said.

Until now.

Allie went into surgery to repair the major blood vessels that were causing the aneurysm. When she woke up, she couldn’t talk.

“I had a stroke,” Allie said. “We’re not sure if it was during the surgery or when I was in recovery, but I woke up and something felt really off for me. I tried to communicate and realized I couldn’t speak.”

The stroke affected her entire left side, including her vocal cords. She was left unable to do any of her normal, daily activities, and couldn’t speak above a slight whisper. For an active woman in her late 40s, it was a devastating blow.

“For myself and a lot of stroke patients, it’s the loss of control and the helplessness,” Allie said. “You’re more concerned about your family having to care for you, and at the same time, they’re doing the same thing. They’re more worried about you than they are themselves.”

When Allie entered the stroke rehab facility, her family was her biggest motivator, along with one big event on the horizon.

“I told them that the first of my four daughters was getting married later that year, and it was my goal to be able to dance at her wedding. It connected me to normal life. It made me feel like I wasn’t just the patient. I was alive, finding things to connect me to my old life.”

Still, the days and nights were long and isolating for Allie. She was the youngest patient by decades in the stroke unit and often felt the loneliest at night. With her sleep pattern disrupted by the stroke, she was up the majority of most nights. And while she couldn’t yet speak above a whisper, she could certainly write.

“I knew a lot of people wanted to know what was going on— they’d been calling my husband and girls asking questions,” Allie said. “I had friends that had CaringBridge pages, and I knew that while it might take me a long time to type, I could at least keep people updated. I couldn’t express myself through talking, so CaringBridge became the only outlet I had.”

Allie started writing, and her community started showing up. “Once people realized the severity of what we were going through, they started a Meal Train for us. That was a huge relief for me,” Allie said. “Even though my kids and my husband were capable, it was nice to know my family was taken care of when I couldn’t be there to do it myself.”

Not only did CaringBridge serve as a way to provide instrumental support to Allie and her family during her recovery, her CaringBridge page became a source of information for other stroke survivors.

“It went from my friends and family to a community of new friends,” Allie said. “It came full circle to where it was a tool for others to reach out to me, so people could see what the journey is like, because once you get out of rehab, everything is different.”

Everything was different for Allie. Upon returning home, she felt as though she had lost her identity. She wanted to be honest about her days— the good, the bad, the ugly. She used CaringBridge to put it all out there.

“When I was writing, I was able to say a lot of things that other stroke survivors were probably thinking, but didn’t want to say out loud,” Allie said. “I thought— I’m just going to tell my truth. Sometimes it’s encouraging and sometimes it’s frustrating, but it’s all part of it. That’s why CaringBridge has been such an important tool in my recovery.”

There were thousands of people visiting and reading her page. It became a way for her to not only keep her community updated, but it also provided her an outlet to express herself, to say the things she was thinking at 2 a.m. when it was quiet and her mind was racing.

“I heard someone say that expression is a way to stay away from depression,” Allie said. “On CaringBridge, I could say things I didn’t even want to say to my family because I didn’t want to make them feel any more stress or pressure. It really was a bridge between us. Through reading, it made them feel less scared. I was still in there. I was the same person and they could still talk to me.”

Nearly two years into her recovery, Allie continues to deal with both milestones and setbacks. While the process is frustrating and Allie tires of constantly feeling like a patient, there are great moments in between the chaos— one great moment in particular.

Allie was able to dance at her daughter’s wedding.

“It wasn’t pretty, but I did it,” Allie said, smiling. “I had fears leading up to the wedding, because I was using a cane. But when the day came, it was just such a beautiful thing, seeing your child find their person that’s going to take care of them and see the start of their new lives together. I could’ve been wearing a burlap sack and it wouldn’t have mattered. Joy just takes over.”

Joy, heartbreak, and everything in between. Allie’s not just a stroke survivor but a woman embracing life in all its fullness, living each day with purpose and passion.