Disability, My Life

October is Spina Bifida Awareness Month

Maybe I’ve been living under a rock all these years, but I didn’t know that October is Spina Bifida Awareness Month.

Not a big deal I suppose, because apparently October is also Breast Cancer Awareness Month, Autism Awareness Month, Down Syndrome Awareness, SIDS Awareness Month…as well as a number of other conditions.

Every illness needs a month of awareness apparently…

The thing with Spina Bifida is that so much is written about children, but there’s less information out there about adults. If you’re interested, this is a good article on the Cleveland Clinic website. 

If you don’t know what Spina Bifida is there are a few different kinds.

For me, basically, part of my spinal column was outside of my body when I was born, in a fluid-filled sac along my back. The fancy term is Spina Bifida Myelomeningocele. When I was a day old, it all had to be stuffed back in and stitched up, leaving one heck of a scar at the top of my “crack” and damaging some nerves that control important things in my body.

Not to give you a disturbing mental picture, but I can’t wear a Speedo due to the scar. Sorry…

I’ve said to Joy on more than on occasion that I feel as though the medical community just expected most of us (people with SB) to die before adulthood because up until a few years ago, there wasn’t much support.

In 2017 I got into the Transitional Life-Long Care Program at Parkwood Hospital. This re-started some care and investigation that had been overlooked for many many years.

Dr. Cassidy is by far the best doctor I have ever had, and I’ve had a lot of doctors. She goes far beyond just the medical stuff and focuses on the quality of life aspects, taking into account my thoughts, feelings and concerns about what’s happening in my own body.

CTV News did a little story about the program a few years back. See below.


With the old system, at 19 years of age, someone like me, whose medical needs aren’t too urgent, would graduate from the Spina Bifida Clinic at Thames Valley Children Centre and then care would fall to my family physician.

For about 20 years, I flew under the radar. I didn’t have many issues and no one was really checking into anything either.

That’s not to say there weren’t issues – it was just that with no one actively looking for them and some of the changes were so slow and gradual, I barely noticed them happening.

But, things were happening.

Going places that I haven’t been in at least 5 years gives me a frustrating reminder of the changes. Things like stairs, walkways, curbs and distances that I previously could walk are off-limits now.

It was at or around age 40 that a few things crept up and started causing problems.

Not new things – things that were always there, but never caused me too much grief until I approached my 40th birthday.

I’m not dying or anything (technically we are all dying. You can thank me for the pep talk later…) it’s just that some of my health issues have become magnified in the past few years so I notice them much more than I had in the past, and others notice as well.

And what do you do in 2019 when you want to learn about something medical-related?

You Google it, which I have discovered is a TERRIBLE idea!!!

Much like the narrative that was told to my parents when I was born – that I might not walk, that I might have some developmental issues and that I might have a poor quality of life, what I’m seeing from the stats seems to confirm some of this.

I’m in a minority group of adults with Spina Bifida.

One study followed 117 people with Spina Bifida into adulthood, and here’s what was determined.

  • 63 had died.
  • 16% were considered “walkers” (people who could walk at least 50 metres.)
  • 85% needed a shunt to drain fluid from their head (hydrocephalus.)
  • Almost 50% had a hospital stay in the last 5 years.
  • 80% used a catheter and other incontinence products.
  • 9% were employed.

When I read stats like this, it’s a sober reminder of the grace of God in my life.

I get annoyed daily because I can’t walk very far anymore, my balance is off and my bladder seems to have a complete mind of its own, but…to use a cliche term – I am blessed.

I generally dislike that term, because it’s been hijacked and overused on social media for all kinds of purposes. I get tired of seeing completely staged photos on Instagram with  #blessed. But anyway…I’m going to use that term.

I am blessed. #blessed

I seriously mean that. I don’t know any other way to put it. It makes me thankful for who I am and what I’ve been given, considering what it could have looked like.

But it also leaves me wondering – “Why me Lord?” – which was a question that Kris Kristopherson and Johnny Cash sang about. Check it out here.

Why am I still alive? Why has my health been so good when compared to my peers? Questions that I will only find the answers to after I am at home in heaven someday. Hopefully not too soon…

Over the years I cannot deny the things that the Lord has done in my physical body. There is no rational explanation for my current state of general health as well as the 20 years or so that I had without any significant medical issues whatsoever.

Plus the 3 or 4 miraculous events that happened during my adolescent years. I will write about those another time.

I was reminded of how blessed I am when I was at my latest Neurology appointment.

I’ve been going back and forth between 2 Neurologists at University Hospital, with each trying to pinpoint what is causing my issues. I just don’t fit the mould when it comes to people with Spina Bifida.

There are 3 separate things that could be causing my issues, but it’s not clearcut because my symptoms are atypical. The list of things affecting me doesn’t point to one area or another definitively. Maybe it’s all 3 – no one knows.

Thankfully at this point, I am free of the worst symptoms that would make pinpointing the issue easier. I don’t have much pain at all and my mental clarity is fine.

The doctor even asked Joy pointedly “does he exhibit signs of dementia or mental confusion?”

She laughed and told the doctor that it’s actually the opposite. I remember almost everything – even inconsequential details…She’s the forgetful one.

As long as I’m adequately-caffeinated, my brain works fine. 🙂

Sidenote *Except when Joy is leaving for the day and she says “don’t forget to turn the dishwasher on after you put those dishes in it”

THAT I cannot remember…I try to blame the fluid in my head for my failure to complete my homemaking duties, but she isn’t buying it.

I’ve had 5 MRI’s in the past 2 years, including the most recent one a few weeks back in which I was placed in the “small” MRI machine, which felt like being stuffed into a drain-pipe for 30 mins.

The lady doing the MRI mentioned that if I get scheduled for an MRI at University Hospital again, I should mention that I need the bigger machine. 🙂

I wish I had copies of the MRI’s. My spinal column looks like a roller coaster.

But anyway – now I’m just rambling.

I hope I’ve enlightened you on the topic of Spina Bifida and to give you a glimpse into the life of a person with SB.

It’s not a death sentence, so if you encounter someone who is pregnant with a child who is suspected to have Spina Bifida, or you know someone with a child with Spina Bifida, encourage them.

Not everything that doctors predict comes true. I’m proof of that!

One thing I ask…

Please do not define me by Spina Bifida. Yes, I have Spina Bifida, but I spend so little time thinking about it on a daily basis that I don’t want it to be “who” I am.

I just don’t have time for it to take up too much of my identity.

Who am I? I’m Jonathon – or just Jonny to many. I like Cats, Cars, Coffee & Cruises.

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