For Scout O’Donnell, creativity has always been part of her life – whether it was in the form of playing guitar, writing poetry, fashion design, or taking photographs. However, it wasn’t until she was diagnosed with hydrocephalus at 18 years old and had brain surgery that she found her true calling – using fashion to help others impacted by medical conditions.
“I have always been a very creative person. I learned how to play guitar, I wrote a book and every day when I would wake up my first thought would be ‘what poem am I going to write, what song will I write?’” Scout explained. “After my last hydrocephalus surgery, I rediscovered an old journal of mine and saw that it was all about fashion. I realized that I needed to return to what I’ve always loved and what made me happy – fashion.”
So she launched Aneka Scout Style + Design, a project that combines her love for fashion and her desire to find a cure for hydrocephalus. Through this project, Scout is offering a free one-hour express styling session to anyone who’s feels like revamping their wardrobe or finding a new look. In return, she is asking for a suggested donation to the Hydrocephalus Association. She is also hoping to raise awareness about hydrocephalus through her styling sessions.
The project launched in January with a photo shoot in New York City, with the help of several well-known models including Juliet Doherty and Djouliet Amara, who have modeled for major brands like Chanel and Sephora. Fashion photographer, Carly Matsui, donated her services for the shoot.
While anyone can schedule a styling session with her, Scout hopes people with hydrocephalus and other chronic conditions will sign up.
“When you live with hydrocephalus, you never know how you’re going to feel when you wake up. When I was lying in bed sick because of my shunt malfunctioning or from a pressure wave, I found that getting out of bed and putting on my favorite outfit made me feel immediately better. Wearing clothes I look and feel good in does wonders for my confidence and happiness. Through Aneka Scout, I hope to share this practice of self-care with others living with chronic illnesses,” Scout said.
Eventually, she hopes she can also provide personal shopping services for clients – especially those who aren’t comfortable shopping at stores or malls where there is so much stimuli like loud music and bright lights.
“Since my diagnosis, I’ve learned that shopping is a privileged experience; those suffering with neurological issues can’t comfortably withstand all the stimuli and energy shopping takes. I am lucky to say that after my last shunt revision, I have finally returned to being the person I was pre-hydrocephalus so I work to share my privilege with others by shopping for others who cannot,” Scout noted.
A Family Affair
When Scout received her diagnosis, she was all too familiar with what it meant to live with this condition. Her great grandmother had hydrocephalus, as did her mother’s cousin. In addition, a year prior to her own diagnosis her grandfather was diagnosed with Normal Pressure Hydrocephalus (NPH).
“Despite that, I never really thought much about it. I remember when my grandfather had surgery, but I didn’t pay attention to it,” she said.
So, even when her doctor couldn’t figure out why she was feeling so sick, it didn’t occur to her that she might have hydrocephalus. In fact, she was misdiagnosed four or five times.
While her doctors don’t know for sure what caused her hydrocephalus, they think she may have had enlarged ventricles her entire life and that a rare side effect from her oral contraceptives may have led to the hydrocephalus. Soon after starting to take the birth control pill, Scout developed a rare brain disease known as pseudotumor cerebri, also known as intracranial hypertension, or false brain tumor. She became very ill and was rushed to the ER. That’s when a cat scan was performed and they diagnosed her with hydrocephalus.
Lost and Found
Scout had brain surgery to have a shunt placed to treat her hydrocephalus in June 2018. While the shunt did its job of draining the excess fluid in her brain, it also drained her creativity.
“I was known in high school as being highly creative – always writing or in the music room playing guitar. But, when I woke up from my first surgery in 2018, for the first time ever I didn’t have any creative desires or thoughts. Days, weeks and then months passed and they never came back. My notebook slowly moved to the bottom of the pile near my bed, my guitars feel horribly out of tune, and my shrine lost its precious energy,” she says.
While it seemed like the surgery had been a success, even six months later she still had no energy, no drive and coasted through each day just trying to get by. Then in October 2019, she began experiencing horrible pain her head and neck, followed shortly after by a petit mal seizure.
Scout saw her doctors who were unsure why she had a seizure.
Soon after, Scout had abdominal surgery to fix the shunt tubing. For Scout, the best result from the surgery was that her creative drive mysteriously returned.
“After months of my shunt malfunctioning an only performing at half capacity, I finally had my creativity back and felt like I had myself back. You can see it all over my face and even my own parents were shocked at the happy, creative person I am today compared to how I had been the past year,” she said.
Ready for a style consultation? Visit https://www.anekascout.com/ and fill out a request form for your free one-hour style consultation with Scout! Consultations are done remotely or in person.