The funny thing about Spina Bifida is that it’s pretty much a lottery system.
Not a lottery you’re necessarily clamoring to win (unless you want the primo parking spot that comes with it). Even then, you have to really want that spot because you just never know where on the spine the damage will strike – a millimeter up or down and you’re in for a very different life. I know we want to have control over our lives, and believe that if we work hard enough and prepare then there won’t be any surprises – sorry, that’s not life. What we can try to do is learn about how we react to what life throws at us and decide how we can alter our reaction or harness it. In the age-old easier-said-than-done logic, we start to realize that anything life throws at us requires us to decide: can I (ultimately) turn this into an opportunity or will I be defeated by it? This realization has set the stage for my life, not the Spina Bifida (it’s just the messenger).
What is (and what is not) Spina bifida?
Now I won’t get into the science of Spina Bifida, mostly because Science was never my strong suit, but for now all you need to know is that Spina Bifida is a condition you have from birth (well, actually before that, when you’re all warm and cozy in the womb). I don’t know life any differently. You can try to tell me that the grass is greener on the other side, but I’ll never know if you’re just pulling my leg (seriously, #paralysisproblems). Some see me as naïve in thinking that if I were to miraculously start walking tomorrow, I wouldn’t see it as any real contribution to my life. It wouldn't somehow make me a better person, would it? Of course, I wouldn’t go so far as to say that I’d be pissed if I miraculously started walking (I wouldn’t have to be at crotch level all the time). However, for now, I’ve decided that my life is best spent investing my energy in the things that: I’m passionate about; that make me stronger; and don’t have me dying simply as “the girl in the wheelchair.”
So instead of practicing stairs, how have I tried to make the most of what life has to offer? Well, I’m pretty proud to say that I’ve risen through the ranks of Shotokan Karate and earned my 2nd degree black belt (more on that later); in honor of my grandmother (who lived with MS), I did 50km of a 75km charity bike ride using my hand-bike (if I learned anything from that race it is that training beforehand is key, and to make sure your bike isn’t too small before the race). I’ve been a TEDx speaker and hope to do it again and again and again because I love being with a group of people excited to learn from each other. I’m starting my Masters of Social Work degree in the fall; my passion for helping kids keep their resilient nature while venturing through health challenges is what I feel, in my soul, is part of what I was meant to do in this life. Oh, and did I forget to mention that I, along with my dream team, “Three Men & A Tough Little Mudder” did our very first Tough Mudder Half in Whistler this year? To the doctor who told my parents that I’d probably never be able to sit up on my own, can you say, “My bad! I’ve learned something for next time, though!”
Never let others determine your future – and here's why…
But in fairness to that doctor, this could have very easily not been my life. I was told once that those born with a condition or who sustain a traumatic injury very often fall into two categories: a) they’ve been told “No” so many times that nothing makes more sense than to develop the drive to not let anything stop them and go after their most ambitious dreams; or, b) they live resigned to a life of “this is the way it is and will always be.” Now, I will say that as someone who lives my life using a wheelchair, one of my biggest pet peeves is that people automatically assume they know the ins and outs of “wheelchair life”, rarely appreciating how monumentally different the reason someone might be using a chair can be. So when I say that there are “two” categories people very often fall into, I’m by no means saying that there aren’t really a hundred. I’m also not saying that if you fall into one group versus the other that you won’t eventually find yourself in the other – this is life and where there is life, there is opportunity to grow and change! Hell, even I’ve criss-crossed from one group to the other so many times during my life.
In some cases, people are born with an unwavering optimism, believing that they’re about to find opportunity amidst all the adversity, even when everyone keeps telling them it’s impossible. There are some other very lucky people (myself included) who may not have been born believing that the Sun will always come out tomorrow (I do live in Vancouver, after all – rain is more of a guarantee), however, I am surrounded by people who: don’t give me false hope, give me the space to create my dreams and then help me figure out how to help me get there – even if it’s never been done before (especially then). They’re the ones I turn to when I feel like my life is over and I’ve finally met a challenge I can’t overcome. They take the “faith reigns” for me until my stubbornness and spirit are reignited, and I come back better than ever.
Putting the Karate-chop to Spina Bifida
When I trained in Karate, I had world champions teaching me and none of us knew what Karate with Spina Bifida looked like, so we kind of created it. Did that mean I did what I could, and then got to sit out for the things that it didn’t look like I could do? You obviously haven’t met my mentors. No, what I heard more than, “Jen, take a seat until the next drill” was, “OK, now let’s adapt this one.” Another favorite was when I was going for my pre-test for my 1st degree black belt (a few weeks after abdominal AND brain surgery), and I made the mistake of saying to the instructor, “I can’t do this.” I’ll never forget what he told me next, he said, “Never say you can’t do something, just say that you haven’t learned how, yet.” Oy! And how right he was!
Because of the people I surrounded myself with (and continue to), I have been harder on myself than any one of them because I’ve been taught that: I can always do better, there’s more to learn, and there are more ways to create opportunities to be the best version of myself. These people have always wanted the best for me, and we forget that it’s not selfish to want to be the best version of ourselves, too. So, lo and behold, I have become my toughest critic. When we finished Tough Mudder, the team was riding high on adrenaline (and endorphins), knowing that we had just completed one of the toughest physical challenges out there even with the surprise obstacle – me.
The only real obstacle in life is ourselves
How was I feeling? Numb. Disappointed in myself. Pissed off that I didn’t feel like I’d been given a fair shot at showing anybody my true strength and what I’d worked so hard to be ready for. I wasn’t expecting to do it without breaking a sweat; I was ready to be down in the mud, or holding onto something for dear life, thinking I can’t do (whatever I was doing) any longer, and then reminding myself how far I’ve come and that quitting ain’t no option. I have never been scared of hard work.
Leading up to game-day, I watched so much footage of Tough Mudder events. I studied the obstacles, put my thinking cap on, and come game-day, realized pretty quickly that the obstacles were really the glass of water you get at the restaurant, before your appetizer, before your main course. The terrain, my friends, was worse than I could have ever imagined and probably made up 95% of getting through the day. Between the gravel, the jagged rock and the tree stumps, I was lucky if I could get any traction to wheel myself before hitting another rock or my wheels digging into something – almost ejecting myself off the mountain. Hence, most pictures that you see of me and my team that day, the rope we tied to the chair for the guys to pull me with is always there somewhere.
Time does heal all wounds, especially wounded egos
Luckily time does heal all wounds, even wounded egos. I’m beginning to let myself see the bigger picture: I was proud of my team and their unwavering spirit and ingenuity for getting me through so much of that course. I’ll admit it, I get emotional thinking about all the people who told me it made their day being able to help me overcome this mammoth challenge. It’s true, being able to help someone in any way they need that support in achieving a dream is unlike any other feeling. In fact, Adam made it clear that, “When you go on to speak to millions, you best speak confidently about this weekend” (this was the ending of a much-needed tough love speech about the kinds of ways a person can give in life and getting over mountains).
As time goes on, I am getting inspired by my experience, because whether it takes off by itself or if I have to pitch it to anyone who will listen – there needs to be alternative paths for the Tough Mudder course that are preferably paved (but beggars can’t be choosers), or at least less gravelly. Why? Because, guess what, I wasn’t the first person in a wheelchair to try my ego at Tough Mudder and I won’t be the last. By doing this, Tough Mudder ends up empowering a (probably) shocking new demographic of people with health challenges that Tough Mudder wasn’t anticipating. Making little changes could give these people (me included) the opportunity to push past our limits where we feel our energy is best used, and still know that we traveled way outside those comfort zones of ours.
Of course I love the phenomenal, and infamous Mudder community where no Mudder gets left behind, I just hadn’t planned on needing to be pulled all the way through (and probably neither did my team) because I couldn’t wheel on the terrain. D’oh! Are these changes likely to happen…we’ll see. If not, some awesome people need to get together and come up with an adapted course of their own – because people with “disabilities” have a right to bite off more than they can chew and put themselves through hell to prove they’re tough (if they want to) too. I do it on a daily basis. So, we need to harness some ingenuity, creativity, problem-solvers, people who are looking for a challenge and able to communicate how they want to be challenged, and a lot of perseverance!
Why is something like this so important, at least to me? Well, I don’t know about you or what you’ve been through, but I’ve been through a lot in my life, and even when things seem to have plateaued (that’s a good thing for me), I know something’s lurking. But living a life in fear isn’t for me. Waiting for something bad to happen: another setback, another surgery, another bout of depression or anxiety don’t make for good excuses anymore to sit on the sidelines. Between the storms of my life, I like to do things that make me feel alive. I want to set goals that test me – mind, body and spirit, so I’m better able to face that pesky adversity (when it does rear its ugly head) and recover faster. Basically I want to reignite that childhood ability to be more resilient than there are challenges to face. I want to remember that there’s always a way to get to where I need to go, I just have to pop-a-wheelie over the boundaries society has created, telling me the “right” and “wrong” way to achieve my dreams.
Anyone want to join me to figure out how to live our best lives?
From the moment Jenna was diagnosed with Spina Bifida and not expected to be able to sit up independently, she has beaten the odds. With the help of her family, friends, Karate champions and mentors, Jenna has set her sights on her most ambitious dreams (never afraid of a little hard work and shedding any sweat, blood and tears). Jenna is passionate about athletics, having earned her 2nd degree black belt in Shotokan Karate and just completed (with her team) her first Tough Mudder Half – and the chair hasn’t stopped her. In the fall Jenna will be starting her Masters in Social Work with the goal of working in pediatric Healthcare to help kids support their resilient spirit in the face of adversity.