Rolling Up and On: Jenny Smith's Story

Jenny Smith
Kentucky
Improving Quality of Life

Jenny Smith has always been a competitor. Whether she’s on the river or the rugby court or the pageant stage, Jenny plays to win.

“I love the joy and the satisfaction I get from athletics,” said Jenny. “It’s been a big source of stress relief, and a way to channel my emotions.”

But for Jenny, sports are bigger than herself: they’re about community and collective growth.

“When I started playing competitively, I was around other people like me, and I got to learn from them,” she said. “That’s when I really started learning what independence could look like for me.”

Now, 30 years after sustaining a spinal cord injury and being paralyzed from the chest down, Jenny is a multi-sport para-athlete, and she’s an advocate for others striving to live full, productive lives in the face of their own traumas.

EXPERIENCING AND ADAPTING TO INJURY

Jenny had been a gymnast since she was three years old, and the roundoff back handspring layout should have been an easy no-brainer. But the grass was wet, and her feet slipped out from under her. She landed hard, face-first, and heard a pop.

“I lost all feeling and movement,” she said. “I told my friends not to move me, because I knew I had broken my neck. I knew immediately.”

Doctors confirmed that Jenny had sustained a C6-7 spinal cord injury, leaving her paralyzed from the chest down and without the use of her hands. The next few months would be filled with intensive rehabilitation, as she would need to re-learn day-to-day activities like writing and feeding herself as well as long-term care management strategies, like catheterization and bowel care.

Still, Jenny was determined to keep her life as close to typical as possible, and she credits that determination for a lot of her success.

“I was in rehab from July until mid-October, but even then, I was continuing to live life,” said Jenny. “My teachers came up to the hospital to tutor me, and I eventually got to go to school one or two classes a day, even while I was in inpatient rehab.”

Jenny finished high school, and attended college at University of Louisville, where she earned a bachelor’s degree and then a master’s degree in counseling psychology. In addition to her formal education, she learned how to better advocate for herself and her health, even with unexpected obstacles thrown her way.

One of the first obstacles: spasticity due to the spinal cord injury. For many spinal cord injury patients, the injured spinal cord fires off wayward messages that trigger uncontrollable muscle spasms. These can be small twitches and jumps, or they can be more severe: For Jenny, her hands would ball into fists so tight, her fingernails left indentions on her palms. Her legs would shoot out straight in front of her. Medication did little to control these spasms and the side effects were discouraging.

“I was completely drugged out on four different medications,” she said. “I would fall asleep in the middle of class. I was ready to have my spinal cord completely severed – or do anything that I thought might help. I was willing to do anything to make it stop.”

So, she talked to her doctor, who recommended she enroll in a new research study for an implantable drug delivery device. In short, a small pump would be implanted into her abdomen, and a catheter would run from the pump into the spinal fluid, administering medicine directly to the spinal cord and stifling errant spasms.

“Before I had it implanted, we tested it through an epidural,” said Jenny. “It was miraculous. My legs were still. So, I had the surgery. Without it, I couldn’t have lived life like I have.”

Today, Jenny lives in freedom from spasticity and oral medication dependence thanks to the innovative device. And she’s found other medtech solutions to address other health challenges.

After experiencing slippage and leaks with her Foley catheter, she talked to a specialist about a procedure to enable catheterization through a stoma, or a small opening in her belly. When she realized she had regained as much function in her hands and arms as she was going to – and knew she wanted more capability – she turned to surgeons for tendon transfers, a procedure where the tendon of a functioning muscle is moved to a new position, so it can perform a new action.

In short, she took total control of her care. Then, she began to take total control of her independence.

A GLIMPSE INTO THE POSSIBLE THROUGH SPORT

Although Jenny was managing her injury well physically, she was still internalizing discomfort, doubt and shame mentally. Then, she rediscovered her love of sport and opened the door into an entirely new way of life.

“I was very reserved, and I hadn’t really accepted my injury yet,” Jenny said. “Being a perfectionist, I didn’t want to do something if I didn’t do it well. So when my hairstylist told me one of their clients wanted to coach wheelchair tennis, I didn’t really want to say yes. But for whatever reason, I said yes, and it started a journey.”

Jenny started playing with nerf balls, and then, as she built up arm strength, graduated to real tennis balls. Soon, she was traveling for tournaments. She was meeting other disabled athletes, and those athletes were doing things she never imagined were even possible.

“I had never been taught that a quadriplegic could possibly transfer [move one’s body from one place to another] completely independently, or get dressed alone, or travel alone,” Jenny said. “And, these new people could really level with me, tease me and say things that an able-bodied person can’t.”

Soon, while she was away from home at a tennis tournament, Jenny got her first real taste of the independence she had seen others embrace.

“I had a caregiver arranged to help me get ready for the night,” remembered Jenny. “It was 10:30 p.m., and she still wasn’t there, and I knew I needed to get moving. So I transferred into the bed completely by myself. I just broke into tears. My friend walked in, and asked me what was wrong, and I told her I had transferred by myself, and she started crying too. Then I found out that another friend had orchestrated the whole thing, stopped the caregiver from coming in to force me to do it. And I’m glad he did.”

With her newfound liberation, Jenny dove even deeper into the para-sports community.

First, she tried adaptive rowing, which she now considers her favorite sport.

“It’s definitely my sport of choice,” Jenny said. “It’s different in that I’m out of my chair, I’m in nature on the river. And it’s different in that there are so many disabilities included in para-rowing: people with intellectual disabilities, people with down syndrome, amputees, people with visual impairments. It’s a great group of athletes.”

She also became involved in wheelchair rugby.

“It’s a rougher sport than I was used to, and it’s the first court sport I played versus my individual sports,” Jenny said. “I had to consider, ‘Am I going in the right direction? How am I meshing with my team?’ I also had to get used to seeing mostly men on the court. It feels good as a woman getting out there and setting a positive example of women in athletics.”

But Jenny’s positive example reaches far beyond the rugby court into her career, her advocacy work and beyond.

GIVING BACK AND LIVING WITH PURPOSE

Soon after sustaining her injury, Jenny received a wheelchair. She’s used manual chairs and power chairs.

“There are huge benefits to both,” Jenny said. “My manual chair gives me exercise to stay in good health and makes it easier to travel. My power chair helps me go anywhere I want knowing I’ll have the energy to be on the move all day or that I can get up a steep ramp.”

When Jenny realized that in many countries, people have no access to any kind of wheelchair, she was heartbroken.

“People in the Western world need to recognize how much we have,” she said. “I didn’t even realize that people didn’t have access to basic wheelchairs in other countries. And when I learned about it, I asked, ‘How can I help?’”

So, Jenny began volunteering – then working – with a mobility-focused nonprofit, delivering wheelchairs to people in need.

“I’ve been to Mexico, Afghanistan, Costa Rica, El Salvador, so many places,” she said. “There were no wheelchairs, but there was also no rehab, no walkers or canes or crutches, nothing. People would die – people are dying – because they don’t have that access. As a community, we can and we need to help.”

Soon after her first volunteer mission, Jenny accepted a full-time position with the nonprofit. She worked there for eight years, and the work she did there remains close to her heart.

Today, Jenny works for a different nonprofit, counseling people working in cross-cultural situations.

“I love working with them and supporting them,” she said. “The countries they’re in can be really difficult to live in and work in. I help them find different resources, and I stay in touch with them as someone to lean on.”

Jenny also works as a contract writer for Bard Care, an online community hub serving people who use catheters every day. Through her writing, Jenny shares personal stories and offers advice and support to other people living with disabilities.

“I’ll answer any question and talk about anything,” said Jenny. “Some people aren’t at that point, and that’s ok. But there are so many people who want and need to know more.”

Jenny’s written on topics like choosing the right power chair, driving a car with hand controls, working out, getting on an airplane, and navigating the snow.

“It’s important to me, because I think one of the greatest things you can do after a spinal cord injury is to get involved with others who have an injury,” said Jenny. “It can be at your rehab facility, it can be on Facebook, in peer mentor groups. I’ve brought people to my house so they can see how it’s set up, or I’ve shown them how I transfer into bed. That kind of relationship can be really helpful.”

These relationships are also helpful in maintaining good mental health and perspective.

“Get the support you need,” said Jenny. “Sometimes giving the right kind of support is difficult for friends and family and your traditional community, because they don’t know what to say either. Reaching out to someone who has been there, like you, might be the answer.”

A MESSAGE FOR OTHERS

Jenny often says: “A wheelchair has taken me places I never dared to imagine.”

Whether it’s travelling the world with a nonprofit organization, competing in Ms. Wheelchair America and gracing the runway at New York Fashion Week, or rowing the Ohio River every morning, Jenny’s accomplishments are no short of amazing.

“I hope I can be an encouragement for people, by being really honest about the good and the bad,” said Jenny. “I love to share my message of education and hope.”

Read more about Jenny at her blog, Jenny Smith Rolls On. And read more about medical technologies improving quality of life.