Spina Bifida – Questions, Questions, Questions

“Why do you walk weirdly?”                       “What’s the matter with your legs?”

                    “Why do you use crutches?”      “Does it hurt?”           “Can I get it?”

“How come you’re in a wheelchair?”                     “Did you have an accident?”

“Will you always walk like that?”     “Can’t you take some medicine to make it better?”

        “Why do you take so long to go to the toilet?”     

                        “Can you have a baby?”

 

Human nature dictates that when we see something or someone we view as “different”, “interesting” or “unusual”, we almost immediately want to know more. Who are they? Where do they come from? Why do they look different? Why did they do their hair like that?

Now I don’t think this desire to know more about the world around us is a bad thing. I am certainly full of a zillion different questions! In my mind, questions aren’t the problem. It’s the manner with which those questions are asked and the motive behind their asking which can be where trouble begins. I’m happy to answer any questions someone might have, so long as that person listens and reflects on the answers they are given.

Curiosity about my obvious differences does not bother me in the slightest…I’ll talk about Spina Bifida and disability until I’m blue in the face if it helps raise understanding and awareness about what a person with a disability experiences in their everyday life. My objection starts when individuals make judgements without having sought out the facts.

I feel strongly that people need to be armed with correct information in order to form accurate judgements; however I acknowledge that not everyone has exposure to disability and are therefore unlikely to be able to form opinions which aren’t based on biased TV and news reporting.  I started this blog to hopefully provide an insight into life as a young woman with a disability and to shed light on the ups and down of life with Spina Bifida. If I can educate even just one person, I will be a happy girl!

To this end, a friend suggested that I write a post tackling some of the questions I am regularly asked…so here it goes!

  1. “Did you have an accident?”

If I’m feeling naughty I might say “Yes I did. I was paragliding from the top of the Eiffel Tower when a gust of wind swept me head long into the side of a wild elephant” before smiling and explaining that I have a congenital condition called Spina Bifida (myelomeningocele type).

“What on earth is Spina Bifida?” I hear you say. Let me explain…

Early on in a pregnancy, a baby’s brain and spinal cord develop from a tube-like structure called the “neural tube” which is open at both ends, similar to a drain pipe. As a baby continues to develop this neural tube should close, forming the brain and spinal cord. However in people with Spina Bifida the neural tube fails to close properly.

There are three types of Spina Bifida:

  • Occulta

This is the mildest and most common form where the opening in the spine is very small and is caused by vertebrae not properly forming. The name “occulta” means hidden, alluding to the fact that the spinal malformation is hidden by a layer of skin and is not visible to the outside world. Most people with Spina Bifida Occulta have no significant disability or symptoms and are unaware that they even have it!

  • Meningocele

With this type of Spina Bifida, the meninges (the protective membranes surrounding the spinal cord) are pushed out of the opening in the spine caused by the neural tube not closing properly. This type of Spina Bifida can usually be corrected with surgery and the spinal cord and nervous system usually avoid significant damage. Most people experience no symptoms however some people do unfortunately have difficulties which include problems with their bladder and bowel function.

  • Myelomeningocele

This is the most severe and serious form of Spina Bifida and is the type I have. With myelomeningocele both the meninges and the spinal cord itself protrude out of the baby’s back in a fluid filled sac and leads to significant neurological damage. The extent of the damage is dictated by the level at which the myelomeningocele developed along the spinal column. My lesion spans L3 to S3 which means that I have damage effectively from my waist down. Whilst there is nothing that can be done to reverse the effects of myelomeningocele, the majority of babies have surgery to close the open defect in the first few days of life. People with Spina Bifida Myelomeningocele are likely to have a number of additional challenges including an increased chance of having Hydrocephalus (excess cerebrospinal fluid in the brain) and I am fortunate that although I had it badly in my early months, it’s development arrested and I have been problem free since then (touch wood).

  1. “Will you always walk like that?”

Yes. Spina Bifida is permanent and has no known cure. As blunt as that might sound, I count myself very lucky indeed. When I was born doctors predicted that I wouldn’t walk, talk or even sit up unaided so to be where I am today (walking, talking and sitting up unaided) is nothing short of wonderful.

  1. “Does it hurt?”

Previous blog posts have touched on my daily battle with chronic pain. It is a battle I will continue to fight for the rest of my life using a variety of tools including medication, surgical intervention, physiotherapy, rest and psychological methods. Life with Spina Bifida places a lot of stress throughout a person’s body and for me it means I have severe back pain as well as pain arising from orthopaedic problems with my hips, knees, ankles and feet for which I have had multiple surgeries and interventions.

  1. “Why do you take so long in the bathroom?”

As a result of my type of Spina Bifida, I do not have control over my bladder and bowels. Bar ongoing issues with repeated kidney infections my urological difficulties are relatively well controlled via medication and clean intermittent catheterisation which I complete at least 5-6 times a day. This involves placing a catheter (a tube) into my bladder to empty it and without this regular intervention, I would be unable to pee! This is why I take so long in the bathroom…although my fiancé would argue it’s because I’m a woman and “just take ages to get ready”.

  1. “Can you have sex/a baby?”

The more forward people out there have asked me this question many times since I got engaged. The answer is yes, theoretically there is no reason that I would not be able to have a baby. During bladder and kidney ultrasounds, radiographers have inadvertently confirmed that “you have all the right bits” and there is no reason why I should not be able to have a baby. The biggest obstacle will be whether or not my body will be able to cope with the strain that pregnancy would place on it. Only time will tell! All the more reason I am grateful for the team of incredible medical professionals and dedicated family and friends I am lucky enough to have around me.

 

I hope this whistle stop tour around the topic of Spina Bifida has been informative. I have by no means covered everything and if you have any questions, please do ask away!

 

Lesson of life with Emily – “No question is a stupid question”

 

 

 

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