My Name Is Marlene and I have Spina Bifida


Me as a baby

I realize I should have written a post on my disability earlier, but I thought that it would be too technical and boring, and it's not something I really talk about very often anymore. As a kid, people would ask my parents what was "wrong" with me and I remember my teacher asking me to explain my disability to my classmates in the first grade, but as an adult I don't really have to answer these questions anymore. I think there are a couple of reasons for this. Firstly, because people don't really care, and secondly (and likely more accurately), because people think they're being rude by asking. Honestly, unless someone is being a complete dickhead and asking "What's wrong with you?" I'm totally cool with telling them about my disability because I'd rather educate people than encourage ignorance by not saying anything. There's already enough ignorant people in the world, why would I want to create more of them?


Me and my mom at the hospital after I was born

So, lovely readers, if you were wondering what disability I have it's Spina Bifida. I also technically have a secondary disability - hydrocephalus. Spina Bifida is a birth defect, so there was an opening on my spine when I was born. The damage to my spine was so severe that I'm paralysed from the waist down. When I was born I was transferred from the hospital I was born at in Brampton (a suburb of Toronto) to the Hospital for Sick Children in Toronto, where they did emergency surgery to close the opening on my back. Like a lot of people with Spina Bifida, spinal fluid collected in my brain after I was born (hence the hydrocephalus diagnosis), so I had to have another surgery where doctors put a shunt in my brain which drains the excess fluid into my stomach.


Much of my childhood included seeing various specialists (i.e. neurosurgeons, orthopedic surgeons and urologists), physiotherapists and occupational therapists. I also had many operations including multiple surgeries to try to straighten my feet, shunt replacements and scoliosis surgery.


Me as a newborn

The shunt replacements, which happened when I was in the fourth grade, were exceptionally difficult because I had to get my shunt replaced twice in two months. The first of the replacements was tough because my parents and I did not know anything was wrong with my shunt until I had a seizure and had to be rushed to the hospital. The problem with having a blocked shunt is that most times the symptoms are flu-like (i.e. headaches, dizziness and vomiting), so it's easy to miss initially. After being transported to Sick Kids Hospital they performed a CT scan, which showed a blockage, and I went in for emergency surgery to have my shunt replaced. Two months later I was back in the hospital again with the same symptoms. Again, tests showed another blocked shunt so I went back into the operating room for another shunt replacement.


After the problems with my shunt were out of the way, my next health hurdle was my scoliosis (a curvature in my spine) diagnosis. When I was first told that I had scoliosis when I was about 11 years old, I was forced to wear a back brace to try to slow down or stop the progression of the curvature. For those wondering what a back brace looks like, think 'plastic corset'. It was uncomfortable, heavy and the plastic and interior foam padding made me really sweaty, especially in the summer months. Unfortunately, the back brace didn't work and I had to have surgery to fix my scoliosis when I was 13. The 13 hour surgery entailed having to put titanium rod in my spine and taking part of my rib to do a bone graft. To say that this operation sucked is an understatement. To make matters worse, after being sent home from the hospital I developed an infection and was shipped back to the hospital. During this time I was on heavy duty IV antibiotics and had to have more surgeries to clear the infection. I didn't know it at the time but according to my family and the doctors, I almost died. After being in the hospital for a second time, I was finally able to go home a few days before Christmas. The recovery from my scoliosis surgery and subsequent complications took several months and I don't feel like I ever fully recovered from it. Before my surgery, I was much more mobile. I could get in and out of my wheelchair by myself, crawl and scoot around the floor, and even work my way up and down flights of stairs. Since my surgery I'm just not as flexible or mobile as I was, but I realize that I have a titanium rod in my freaking back and I'm now 36 years old. There's no way I should be able to move like I did when I was ten, so I just accept my limitations.


Me playing in my sandbox (a.k.a. the giant kitty litter box) when I was little

Luckily, I haven't had any major health concerns since my scoliosis surgery when I was 13. Despite all of the challenges I faced, I'm extremely grateful that I received the fantastic healthcare that is provided in Canada and that I'm able to live a fulfilling life today.

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