One of the questions I more often get as a disabled person is: What's wrong with you? Everyone who knows me obviously knows I have a disability, but I'm under the impression that not very many know my actual diagnosis, what it is or what it entails. And even if I ever tell someone I have spina bifida, their most common response will probably be "Wait, say what again?".
While scrolling through a Facebook group of SB patients, I recently came across a meme that said: "SPINA BIFIDA: Imagine my brain is a PC, my body is a Mac, they're trying to exchange a file and it's the 90s." I sure laughed at the metaphor, I thought it was hilarious and painfully accurate, but it also made me want to give an explanation that was a little bit more technical, so I can get people educated. So, in honor of World Spina Bifida Day, held every year on October 25th, today I bring you the basics.
Spina bifida is a neural tube defect. For those who may not know, the neural tube is the embryonic precursor to the central nervous system, which is made up of the brain and spinal cord. Normally, the neural tube closes in the first four weeks of pregnancy, but in my case, it failed to do so. As a result, when I was first born, part of my spinal cord was basically protruding through an opening in my lower back, leaving everything exposed. The analogy I tend to use to explain this is I ask the person to imagine my spinal cord is a cable and in one part there's no insulation, so the nerves are sticking out like stripped wires. What doctors had to do within hours of my birth was to push everything back in and close me up, but there was already a lot of nerve damage and a lifetime of consequences.
In addition to the huge hole in my back, I had bilateral clubfeet, both hips out of socket and my right leg was slightly shorter than my left. Most spina bifida patients are also born with hydrocephalus, an excess of cerebrospinal fluid (CSF) in the head, for which I had a shunt put in place to drain it. I first stood up when I was almost four years old, and learned how to walk with the help of a walker, followed by a couple of others before finally switching to crutches, which I use to this day. Besides physical therapy, I've had a dozen different surgeries to date, and I will need a few more in the future. The ones I've already had have been to correct my clubfeet, (which took several procedures), to try and put my hips back where they belonged (except it didn't work), to replace my shunt and to remove some metal implants doctors had put in because they couldn't give me an MRI.
Now, I know not everyone is a fan of "Grey's Anatomy" like I am, so in order not to fry the brains of my readers with lots of incomprehensible medical terms, I decided to break my condition down to the most obvious consequences it has on my daily life, as a way of making it easier to understand what it is like to walk in my shoes.
No sensation: I literally can't feel anything bellow my ankles. Nothing. I could accidentally step on a nail or walk on burning coal and not notice, which obviously makes me a lot more prone to injury. This is why you will never see me without any shoes on, even if we're at the beach.
Frequent UTIs: As a result of nerve damage reaching my bladder, I don't receive the signal from my brain to empty it as often as I should, and I simply forget to go to the bathroom. Because of this, I get urinary tract infections all the time. And I assume that anyone who's had them knows they hurt like hell, right? This forces me to be on permanent prophylaxis to prevent them as much as possible.
Tethered spinal cord: The spinal cord normally floats free inside the spinal canal, but as a result of my surgery as a newborn mine is fixed. If it becomes symptomatic, and the person starts showing neurological deficits, it needs to be repaired surgically, but fortunately, in my case it isn't.
Latex allergy: Because of overexposure to medical equippment, 68% of patients are allergic to latex. This means I can't touch things like balloons, rubber gloves or condoms, and when I go to the dentist or to get bloodwork done I often have to bring vinyl gloves myself because hospitals don't always have them.
Chronic pain: My sciatic nerve is swollen, which means I periodically experience neuropathic pain in my back, thighs, knees or even feet, even though it's technically not possible (it's the equivalent of feeling pain in an amputated limb). It feels like someone is sending electric shocks straight into my nerve, similar to what happens when you tough another person or a doorknob and get a light jerk, but a million times worse. Whenever this happens, unless I take a painkiller, I'm in absolute agony.
(At this point, you might want to catch a small reading break to digest everything).
Congratulations! You have reached the end of spina bifida 101. There is obviously way more I could talk about in regards to this topic, but I've decided to leave the more specific parts for some other upcoming articles, which will dig deeper into the more personal, social and political implications that life with this condition has for me as an individual. Still, if you still have some questions, feel free to leave them in the comment ssection and I will be happy to answer them.
P.S.: The color of the SB awareness campaign is yellow. Don't forget to wear yellow today!
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