Team Jennifer: Jennifer Pownall says her family has been her greatest support group. Pictured are (from left) her sister, Shannon; niece, Dannilyn; husband, Ed; and niece, Sarah.
People seem to know a lot about various medical conditions nowadays, and it’s not just because the medical community is doing a better job at explaining them to their patients.
Charity organizations and activities like Alex’s Lemonade Stand, the Race for the Cure, the AIDS Memorial Quilt and the Ice Bucket Challenge not only raise millions of dollars for medical research and the care of the ill, they raise public awareness about their targeted afflictions. In other words, as a community we have learned more about childhood cancer because of Alexandra Scott and become more conscious of ALS, aka Lou Gehrig’s disease, because of those freezing water videos on Facebook.
West Torresdale resident Jennifer Pownall is trying to create a similar buzz for a condition very near and dear to her heart and her mind — brain tumors. About nine months ago, Pownall, a 42-year-old St. Hubert alumna, learned that she has three brain tumors. Fortunately, they are benign. Nevertheless, they have impacted her life in ways she never could have imagined. And she’s just one of about 700,000 Americans who have them.
Her first big event will happen on Aug. 14 when she hosts Minds Matter 2015, a beef-and-beer-style fundraiser at Cappy’s Cafe in Mayfair from 7 to 10 p.m. The community is encouraged to attend and support an important, often overlooked cause. All proceeds will be donated to the National Brain Tumor Society.
“I was going to Jefferson Hospital every three months, now it’s every month, and I look at the kids and the babies and I know they’re there to get treated for brain tumors,” Pownall said, explaining her inspiration for wanting to help. “I see the tragic side of it. Your brain controls everything. My brain can tell me to stop breathing. It can tell my heart to stop beating. Once you accept the reality, you can either boo hoo about it or you can do something about it. I want to help other people.”
Looking at Pownall, you’d never guess she had brain tumors. On a recent weekday afternoon, a news reporter visited her home, a neat twin on Linden Avenue, where the slender, stylish woman spoke fluently and energetically about her younger years in Kensington and Tacony. Folks from the neighborhood may remember her by her maiden name, Bird. She’s particularly proud of her grade school alma mater, St. Ann’s.
Pownall described her lifelong love of classic rock music and her spirited teenage years.
“I was what you’d call an adventurous youth, a wild child,” she said with a wry grin.
Pownall also spoke in adoring terms of her husband Ed, her adult son Ryan, her sister Shannon and Shannon’s girls, Sarah and Dannilyn. They’ve been her resolute support group throughout her illness.
Although Pownall has taken a few days off from time to time, she continues to work full-time for the Pennsylvania State Employees’ Retirement System, where she has almost 17 years of seniority. She tries to stay upbeat around the office, often joking with co-workers about her medical issues. Even longtime colleagues don’t sense how serious they are.
“People always say, ‘You don’t look sick,’” Pownall said.
Little do they know.
It all began three years ago or more when Pownall started experiencing blurred vision, persistent leg and foot cramps, pins and needles sensations in her hands, shakes and severe headaches.
“I was trying to self-diagnose for two years,” she said.
She eventually sought a medical opinion last August. That visit to her family doctor led to four months of testing during which a variety of specialists offered varying opinions on the cause of her problems.
“At first, they were trying to pass it off as anxiety, which I do have, but I knew it wasn’t (the cause),” Pownall said.
She was tested for multiple sclerosis, stress, thyroid problems and sinus infections. In one painful test, an electromyograph (EMG), the technician essentially pumped electric current through her body to detect possible nerve damage. Using magnetic resonance imaging (MRI) testing, a doctor finally discovered the tumors. In scientific terms, her condition is known as meningioma. Elizabeth Taylor had the same diagnosis, as do Mary Tyler Moore and Sheryl Crow.
Pownall’s tumors sit on the outside of her brain, rather than internally. Two are on the right frontal lobe and one on the left.
“Whatever part of the brain they sit on, that affects a different part of the body,” Pownall said, adding that her tumors may affect her reasoning, behavior, memory, hearing, vision and “pretty much everything.”
The tumors are benign, but may become cancerous. They are pea-sized but may grow, slowly or very rapidly. On the other hand they may stay just the way they are indefinitely.
Surgical removal is an option, but Pownall has chosen a management program involving medications. Unfortunately, a more recent development has been causing her new problems. Starting in April, she began to feel increased pressure in her head.
“The pain was like the worst toothache I’ve ever had times a thousand,” she said.
It would last for 24 hours, then lessen, then flare up for an hour or so here and there. The first bout prompted her to go to an emergency room, where they suspected a sinus infection and gave her prescriptions for antibiotics and pain meds. The pain subsided.
In late June, the problem returned. She saw a family doctor and a specialist. While waiting for a follow-up visit, the pain became acute, so she went to the ER again and got a new diagnosis — trigeminal neuralgia. Essentially, her tumors are affecting nerves in her brain that, in turn, are messing up her central nervous system. She and her doctors are still working on her new management program.
Emotionally, she’s been getting a lot of help from her family along with online communities of fellow brain tumor patients.
“I find it comforting to talk to other people who have this. It’s comforting that other people get what I’m talking about, they know what it’s about,” Pownall said.
One of her new contacts can take credit for sparking the activist inside Pownall. In May, another patient asked her to be a guest speaker at a fundraiser in Bridgeport, Montgomery County, called Brain Fest. Pownall gladly told her story and resolved to organize her own benefit.
Mike Capobianco, a longtime personal friend, helped Pownall get her concept off the ground by offering his bar for the event. Cappy’s is at Frankford and Longshore. Pownall began canvassing the area for donors.
The manager of Chickie’s & Pete’s on Robbins gave a pile of goodies including T-shirts, glassware and gift cards. WMGK gave tickets to a Van Halen concert and a Steve Miller/Doobie Brothers show. Some of the other gift baskets will feature items from Adventure Aquarium, the Camden Riversharks, Dave and Buster’s, the Phillies, a hotel at the Gettysburg National Military Park, Zitner’s Chocolate, Mealey’s Furniture and the Beer Outlet at Franklin Mills, among many others.
Tickets to the benefit cost $45 and include open bar and buffet. There will be plenty of music and laughs, too. Contact Pownall via [email protected] to get involved.
Pownall hopes this is the first of many fundraisers in her future. She’s already working on an idea for a social media-based campaign in the same vein as the Ice Bucket Challenge.
“But it’d be much cooler and more fun,” she said.
“I’m going to keep doing these because this is so much more fulfilling than any job I’ve ever had.” ••
Spreading the word: Jennifer Pownall has a condition known as meningioma — meaning she has three brain tumors. The West Torresdale resident is now striving to raise awareness through fundraising efforts, including a beef-and-beer planned for Aug. 14 in Mayfair. MARIA S. YOUNG / TIMES PHOTOS
