Jenna’s Style: From Spina Bifida to Stylish Butterfly

JENNA 

“Imagine zipping up a winter jacket…but the zipper skips.”

Jenna used this metaphor to explain how Spina Bifida occurs. She was born with this birth defect that occurs in the womb, shortly after conception.

“The spine tissues do not connect fully to protect the nerves in the spinal cord. This leaves an opening in the spine, exposing the nerves and leaving them vulnerable. Because these nerves (in the opening) are exposed, they get damaged and the functions that those nerves control are affected. So, for instance, I don’t have a lot of control of the muscles below my waist, but I have some,” she shared.

“My situation is mid-serious in terms of how it has impacted my body.”

In addition to Spina Bifida, Jenna was born with hydrocephalus.

“As a healthy person, your brain knows how to make fluid to bathe your brain, keep it nourished and hydrated. With hydrocephalus, the brain does not know how to drain this fluid. I have a shunt, which is a pump that goes into the ventricle of the brain and pumps the fluid from your brain (down a tube) and empties into your abdomen.”

What drew me to Jenna was her confidence, kindness, and sense of humour.  We met at a nominee recognition event for the YWCA Women of Distinction Awards three months ago. Within five minutes of talking to her, I felt like I had known her for years.

A few years ago, Jenna graduated from university with Bachelors in Social Work degree.

“I wanted to be in a helping profession to support people based on what works for them,” Jenna explained.

Aligned with this goal, Jenna started a business called Phoenix Attitude: an online platform that provides people with a “far better experience with the medical system- gaining more control, efficiency, effectiveness, and emotional support.” Users can register for a ‘Medical & Motivation’ account to keep track of their symptoms, doctor’s appointments, medications, medical procedures, and more.

“Phoenix Attitude is about appreciating where your strengths are, accepting support when you need it, and moving forward.  At a time when someone may not be feeling their best, it’s a tool to build confidence and understanding that they have more control to impact the outcome of their health than they realize.” Jenna explained.

For the past two years, she has also volunteered at the Spina Bifida and Hydrocephalus clinic at a local hospital and Canuck Place. Through her involvement, she was invited to join the board for the Spina Bifida and Hydrocephalus Association of BC. Last year, Jenna was asked to deliver the keynote presentation at the national Spina Bifida & Hydropcephalus Association conference in Vancouver. This year, she spoke passionately at TEDxYouth@SJS.

When I asked Jenna how she dresses to accommodate her busy schedule, diverse commitments, and unique needs, she shared some excellent fashion tips.

  • I wear to play! Since I work with kids, I have to run around with them. I don’t want to feel concerned with the superficiality of how I look…around kids especially. At work, I wear big t-shirts, comfortable pants, and a smock over top when I’m at the hospital.
  • When I’m not working, I like to wear pieces that are fitted and accentuate more of an hourglass figure. When you’re in the chair for a long time…the body can settle so the figure becomes box-shaped. So, I like wearing things that are cinched in to fight that. I like to wear my jeggings (jean-leggings) from IZ Adaptive. They are designed for people who are sitting down, so they have a unique pattern. The waist stays evenly around. No one can tell that they’re adapted clothes!
  • For formal wear, I love the ideas of optical illusions, colour blocking, and stretchy fabrics. There is lots of upper body movement for wheeling. If I don’t have something that can move with me, it loses it shape quickly, which doesn’t end up getting you your bang for your buck. Formal wear can be expensive!

Jenna also wears a stunning, vibrant red-orange lipstick that coincidentally matches the flames on her wheelchair and the Phoenix Attitude logo.

Quick Questions with Jenna:

What may our readers be surprised to learn about you?

I have Spina Bifida L3, L4, hydrocephalus, and I’m a second degree black belt in Shotokan Karate. Starting at age 4, I was trained by world champion karate instructors who did not cut me any slack. They did not bat an eyelash when they wanted to train me, which included a willingness and openness on both of our parts to adapt the training so I could still excel and get what I needed out of it. I competed in tournaments and was very innately driven.
A girl in a wheelchair feeling confident in karate…not what you would expect! Well, Karate helped me with anxiety issues and confusion about how to belong. It was one of the only places where I didn’t get bullied. It made me feel pretty powerful.Untitled design (2)

What has helped you feel better emotionally along your journey?

I have a dog named Phoenix, and she promotes activity – getting those endorphins going. With a social work background, I’m appreciative of the concept self-care, and Phoenix is very healing in that way. She is a distraction when things are tough. She’s been helpful for a lot of the physical, emotional, and spiritual issues. But aside from her, I’ve also learned to seek support when I need it. Over the years, that support has taken several forms, including medical intervention and support from a psychologist. Hopefully in revealing this, people will know that it’s okay to seek and accept support that works for you.

Where do people stumble with their understanding of Spina Bifida?

It’s important for people to understand that Spina Bifida is almost like a lottery system. One case is not going to be like the next.  You can receive as much information as you want, but always take it with a grain of salt because what each person is dealing with is going to be different… and you don’t want to make assumptions. I always encourage people to educate themselves and to ask questions.

What would you say to others who are going through a similar challenge?

I’m a proponent of figuring out what you need and what works for you. It’s important to recognize that your health journey could be longer and different than you expected.  I’ve learned that I must take care of my own health before being able to help other people. So, I keep resources and support systems in place for me to stay healthy.

“At the end of the day, I don’t agree with fake it ‘til you make it,” Jenna expressed.

“There will be hard times, so you’re allowed to grieve. And there will be great times, so celebrate! To me, life is like a karate tournament: I may feel really nervous, but I have to go on no matter what and simply do the best job that I can. That can be transferred to self-confidence. Put yourself in circumstances that you feel confident in, and that’s going to draw people toward you. When you find your niche, it builds your self-confidence. It’s amazing how the right people come into your life.”