Three days before the 4th of July in 2016, Alice Lipowicz woke up with the worst headache she'd ever had and a weird tingling sensation. "We were getting ready for our wedding, we were writing a musical—I was having a great summer," she tells SELF. But, because it was a few days before the Fourth (and a weekend), she couldn't see her usual doctor. And ER doctors missed what turned out to be a serious case of shingles that left Lipowicz with severe vision problems for months. But she was able to use that time to tap into her creativity—and write an entire musical based on her experience.
"Shingles is caused by the varicella zoster virus, which is the same virus that causes chickenpox," Talia Swartz, M.D., Ph.D, assistant professor of infectious diseases at the Icahn School of Medicine at Mount Sinai, tells SELF. The key is that, even after your bout of childhood chickenpox has passed, the virus never actually leaves your body. "The virus can live dormant in the nerves for years after somebody has had an initial case of chickenpox," she says.
Although this isn't a huge problem for most of us, the dormant virus will be reactivated in a third of people who've had chickenpox. This becomes more likely if your immune system is already weakened in some way—after cancer treatment or if you're on long-term steroid medications, for instance. When it's reactivated, the virus causes shingles rather than chickenpox, which is usually identified by its characteristically painful, blistering rash. According to the CDC, about half of all shingles cases occur in those above the age of 60, but it's possible to get it earlier than that.
Because the virus has been hanging out only within certain nerves, it only causes a rash on that part of the body when it reactivates, Anne A. Gershon, M.D, professor of pediatrics at Columbia University Medical Center, tells SELF. "You can get it anywhere, but it tends to reactivate only on one side of the body," she says.
Most commonly, the rash wraps around one side of the stomach. But it also often shows up on the shoulders or back. And, in about 20 percent of cases—including Lipowicz's—it can affect the eyes, Benjamin Bert, M.D., an opthamologist at Ronald Reagan UCLA Medical Center, tells SELF. According to Dr. Swartz, that happens when the virus affects one of the cranial nerves, which can also cause a rash on the scalp, forehead, or face.
Lipowicz's rash showed up a few days after she first had her headache, which made it easy for doctors to finally diagnose her with shingles. But it presented another problem: The best treatment we have for shingles is antiviral medications, which are at their most effective when taken in the first 72 hours of an infection, Dr. Bert explains. Because Lipowicz started taking these medications after that window had passed, she was at risk for a more serious and persistent battle with shingles.
"For the first month, the pain was the biggest problem," she says. "But after a month, it invaded my eye and light sensitivity became an even bigger problem... I could not bear light in my right eye." This level of light sensitivity, Dr. Bert says, is an indication that the infection is truly affecting the cornea or other eye tissues—not just the area around the eye or eyelid.
To make herself more comfortable, Lipowicz put up dark curtains in her room, wore sunglasses indoors, and turned the brightness on her computer all the way down. Going outside required two pairs of sunglasses and a light-blocking umbrella. But it still wasn't enough: "I couldn't stay on the computer for very long, I couldn’t read... I started playing solitaire, but that was boring," she says. "So I started listening to musicals."
After listening to Les Miserables "probably 15 or 20 times," Lipowicz says she woke up one morning with a brand new song stuck in her head—so she had to write it down, sing it, and record it. "It took about four hours to get all the words and the music right," she says, "and that had been the best day that I'd had so far." From there, she kept writing, singing, and recording until she realized she had enough to make her own musical inspired by her experience.
One song captures the frustration of trying to convey that experience to her concerned friends. "I didn't know what to say because I didn't want to express just how scared I was," she says. "You don’t want to freak people out, but you want to tell the truth." Another number, which Lipowicz describes as "macabre waltz," delves into the feeling of being forced to "dance" with her illness as if she were a captive.
The full (now finished) show, titled My Beautiful Darkened World, explores the highs and lows of being isolated by her illness. The musical premieres August 18 in Silver Spring, Maryland, and Lipowicz will be performing alongside Taunya Ferguson, Carlic Huynh, and her partner, pianist Paul Rosenberg.
Today, Lipowicz says her condition has improved; she's much less sensitive to light and can go outside with only one pair of sunglasses and a hat. (She's also looking forward to finally having her delayed wedding ceremony next month.) However, it's important to remember that the level of damage that Lipowicz experienced isn't necessarily common. According to Dr. Bert, of the 20 percent of shingles patients who experience eye-related symptoms, only between two and nine percent have lasting issues.
The best way to protect yourself from both chickenpox and shingles is with a vaccine. The chickenpox vaccine is recommended in two doses for kids, but if it wasn't available when you were a child (it became standard practice in 1996) you can get it as an adult if you still haven't had chickenpox. Starting at age 60, though, the CDC recommends that adults receive the shingles vaccine. As Dr. Gershon explains, this contains the same virus as the chickenpox vaccine, but is about 14 times more potent. Another shingles vaccine is currently being evaluated by the FDA which doesn't contain the live virus, she says, meaning it can be given even to patients with already-weakened immune systems (e.g. cancer patients).
To help raise awareness of all of the complexities of the disease, and how much researchers still don't know, Lipowicz started a Shingles Awareness website and Facebook page. "Since I didn’t know about it," she says, "I want other people to know about it."
Related:
- What Is Shingles, Actually?
- Yes, Shingles Is Contagious—Kind Of
- 8 Eye Problems You Should Probably Get Checked Out
You May Also Like: Is Apple Cider Vinegar Really THAT Good for You?
