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World Mental Health Day: Spina Bifida Edition

2020-10-10 Posted By Jenna Reed-Cote

It’s #worldmentalhealthday day and I think that it is SO important to get the spina bifida “perspective” out there. How have I gotten to where my mental health is today? Is there struggle? Of course! Some of you may wonder how I find the humour in the darkness that can be spina bifida. Some of you may wonder when it will get better for you. Some of you may wonder how I can let people into my life, when it often felt like every one of my peers might see me as a “burden” as a friend. Some of you may wonder how so many of my struggles growing up, I see as a source of ignition to empower myself and others. Well, I never saw it coming. And I’ll bet a lot of you wonder when it will begin to change for you. But let’s go back and see what it looked like compared to now.

I’ve heard so many stories about me as a kid: happy, an epic prankster, a social butterfly, a fierce protector, the vessel of a sensitive heart & soul & the deliverer of an undeniable belly laugh (wheezing, snorting - and unfortunately for some witnesses - I never grew out of it). I was trained by world champion martial artists who got pretty lucky with this student, who was eager to please and determined to perfect every technique. At home I was just Jenna, & the spina bifida with its challenges never felt too pronounced. When things needed to get done, we all got creative, & I had no idea how outside the “norm” my life looked like compared to my peers.

Sure, there were differences I’d notice about what & how my friends did things but nothing about those differences felt like a punch to the gut, sending my spirit into a tailspin. But the little differences did start adding up & my mental health was finding it harder to get me back up after being knocked down every round. At 10 years old (a significant age to SO many kids with spina bifida, but more on that later) my teachers had to reach out to my parents because apparently my writing assignments alluded to me not wanting to be alive anymore. I say "apparently" because I don’t remember writing anything like that. Maybe I blocked it out. Maybe I didn't realize the potential risk if my thoughts escalated like the adults saw. So, I saw a psychiatrist - at 10.

I was ultimately sat down to do a multiple choice diagnostic test to determine a potential depression, but I don’t remember knowing that. I only vividly remember one question on the test & the thought process that led to my answer: “Do you think you are beautiful?” The possible answers: a) yes, all the time b) yes, some of the time c) yes, but rarely d) no, never. Well, that was at least my best recollection, anyway. I chose “d” and I remember choosing “d” because I didn’t want them to think I was full of myself. Yup that's what dominated my thought process. Well, most of the test must have gotten answered “d” because my parents were told that my depression was “off the charts”. I was put on medication and started therapy, which no other kid in my class had to do. Oy.

What took another decade or so to learn was that there is a real pattern that just happens to show depression popping up in kids with spina bifida at 10 years old - there were more like me out there! Kids at that age are becoming more independent of their parents (which highlighted my continued dependence of the adults in my family; cliques are forming (one’s character not necessarily at the top of the eligibility requirements); and you find yourself falling behind on how the heck to socialize with your peers effectively when you’ve grown up in an adult world. I actually had a handful of friends who saw me at my core, but for survival on the playground, they had to defer to the leader of the group - and the leaders didn’t want me. Peer pressure’s a you-know-what.

I couldn’t figure out if actively educating other kids about the ins and outs about spina bifida would be the answer and, if it was, how to make it digestible without getting into the nitty gritty and scaring the kids or “grossing” them out (alienating me even more). Would not saying anything about the spina bifida, projecting that my life was “normal” until they all got over it and just saw me for me? As a grown up, I think it would’ve been a balance of both if I had to do it all over again. But at the end of the day, the biggest problem was probably that I didn’t ask for help from the adults, help that could've given me a better chance at fitting in with the kids. So, I just withdrew, thinking “it is what it is”, and that maybe the little adult I had to be would have a better shot at making friends when everyone else became adults, too. I would later, as an adult, run into the mother of one of the kids who gave me a really hard time in elementary school (I didn't tell the mom about what her kid did to me), and she went on and on about what a happy kid she remembered me as. Damn my need to try and exhaust all options myself before confessing how deep of a hole I've dug for myself. After 30 years I'm STILL working on it.

Ironically enough, doing karate was when I knew I could shine - I was trained by such amazing teachers who not only didn’t see adapting my training as a burden, but also never let me believe that I couldn’t achieve big things if I put my mind to it. Think about that again, me - a kid in a wheelchair and braces - actually feeling powerful and like I belonged in what many assume is all about one's physical strength and ability. In reality, they focus more on the human spirit than anything else. Seriously, I felt invincible.

Up until I was about 16 all I wanted to do was survive school because I tied all my worth into what my peers thought of me (peers who never really knew 99% of who I was on the inside and what I went through). Was how they treated me due to not having all the facts their fault? Nah. Just like having spina bifida wasn’t my idea of a good time either - talk about a rock and a hard place!

Funnily enough, realizing that I was wasting energy desperate to fit in and getting the kids’ approval finally got me to a place where I could immerse myself in projects that I was passionate about. The biggest ones being: 1) making a speech in front of my school about Christopher Reeve after he passed away (despite my deadly fear of public speaking) because it wasn’t about ME - no matter what people thought of me or how I delivered that speech - what mattered was sharing his work and legacy with people who might know nothing about him other than he was Superman; 2) co-running the environmental program at school and planning (what had been at the time) the biggest environmental conference the school had ever hosted; I put all my energy on what needed to be done to impact the most people instead of obsessing about what people thought of me and my ability to engage kids in the issues.

The outcome? I no longer came off as desperate and people were actually drawn to my confidence. Kind of along the lines of “a watched pot never boils” or the thing you want most will come to you when you stop thinking about it. This concept got exponentially more powerful when I got to university knowing I couldn’t please everyone so I may as well just be me. Boy, did that tactic draw the BEST people to me. These are friends that almost 10 years later I still feel so lucky to have. More than a few times, they have shown me that when the crappy spina bifida stuff did/does pop up and the medical part of my life took centre stage, they're here to help me take it all in stride because they know Jenna is so much more than the medical stuff - that’s what friends do for each other.

With the right people by my side I’ve actually been empowered to continue building new paths that branch off from the main road. This not only allows me to be the person I needed when I was a kid but to show others that their power comes from their spirit - not the physical body.

I still have bad days, or weeks and even months, but knowing a lot more of what works for me in supporting my mental health, I always end up finding my way back and stronger.

So, try not to judge what you end up finding out what may work with you as we navigate really dark times. If you find yourself struggling but don’t want to admit it because you think you’re the only one and that makes you weak is useless and zaps your energy needed to be the only you in the world and your unique potential!

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“Overcome the notion that we must be regular... it robs you of the chance to be EXTRAORDINARY ”
Uta Hagen