What Does A Super Hero Look Like?

As I write this today, I still feel like I’m writing someone else’s story. I’ll call it, ‘Welcome to my nightmare’. Get a coffee it’s a long drawn out story I promise you.

We all relate to hearing stories about someone with Sciatica. Well, for 2 months my hubby worked with it, knowing he’d likely need time off, if it was going to be a long time until it resolved. How he worked through and endured such immense pain is beyond any of our comprehension.

One day, the pain after working all day became excruciating. We went to our trusted chiropractor pain doc. He informed us he’d be calling an ambulance if we didn’t take ourselves to the ER and that my hubby would need emergent surgery.

We were shocked to hear that, as I’m sure you’re equally shocked. We didn’t even have our coats with us or our affairs in order back home, yet we were rushed to Toronto.

They explained to us that a spinal cord injury was causing the weakness and the onset of paralysis. They had a short window of time to minimize nerve damage, but that window had long passed as he had worked for weeks with the pain.

Since that weekend I’ve been his primary caregiver. He has permanent bowel and bladder paralysis, and is at risk of falls (and has already had a few), and he also now has foot drop, not to mention constant nerve pain and exhaustion. Depression set in autonomically because of the signals being messed up, and also because he’s 42 and has been medically retired.

He also has issues with autonomic dysfunction and has had a few scary attacks. His blood pressure is a problem, as well as his passing out at times, so it’s quite scary and potentially unsafe for him to be alone.

We’ve had little support, if any, from doctors here. We’ve just had visits to the Neurologist in Toronto, and a long exhausting 5 hour drive in Toronto traffic.

I am the primary caregiver at home, so my working in the community has come to a halt which puts extra burden our already difficult finances. There are many tests yet still to come, as well as rehab sessions in order to learn to function with what’s left after Spinal Cord Injury.

My super hero hubby has dealt with so many concerning mobility issues, and as we go through this together, I too feel less than useful at times, but somehow it’s where I need to be.

I feel empathy for anyone going through disability, especially an invisible one, as there is so much judgement to face and little financial help offered. One day you’re working and have sciatica, or so you thought. Then, voila!

You’re two days from the wheelchair but can luckily still walk, though only slowly, carefully and painfully. Invisible paralysis has set in. Even the doctors don’t know a lot about Cauda Equina Syndrome. They have said there is no hope for improvement and no cure for Spinal Cord Injury.

I don’t quite absorb what the tests will do, since there is no cure for Spinal Cord Injury, and we’ve been told to not expect improvement. Though we are hopeful that someday they will find a way to regenerate damaged nerves.

And we are thankful for every day without an attack of autonomic dysfunction and some semblance of normalcy. Wherever there is an opportunity to spare someone this life altering damage, we educate friends who have sciatica or back pain, about red flags of Cauda Equina Syndrome.

If you experience numbness or paralysis, do all in your power to make someone listen to you. The spinal cord is your whole nerve system. If the root nerves are damaged, that will affect everything. Even sleep dysfunction is common.

Be an advocate for your own health. Continue to make doctors and loved ones listen to you during your sciatica recovery so that no stone goes unturned. It is life changing. I’ve seen this throughout my hubby’s struggle with disability and depression. There’s an element of grief that comes with the sudden loss of friends, loss of independence, loss of thoughts and dreams for the future, loss of security, etc.

Thanks for listening.

People are curious as they don’t often know about this issue. Many don’t believe it could happen to them. I’m here to say that if your disc ruptures into your spinal cord, it’s that quick and can happen to anyone.

Bren Anne Bondy 2020