Living With Degenerative Spine-Type of Disease Isn’t Something I Ever Expected to Happen

(As my own Big Fish style story goes)

then….

I have had one disc in my cervical spine replaced already.

It was in 2020, and (as my own Big Fish style story goes) I was at dance 1 week to the day late for the very start of our first post-pandemic season, trying to speak loudly enough to a group of beloved teens after having someone slice through my throat.

Somehow, I pulled it off… But I only have so many Ed Bloom stories left in my system these days, you know?

Living with degenerative spine-type of disease isn’t something I ever expected to happen in my life.

now…

I have found many a person with all styles of Cystic Fibrosis who have hearing loss and/or are profoundly Deaf.

I’ve found the ones who have their GI impact more than their lungs (like me); No biggie.

Those with wonky hearts, or who have joint and bone problems…

But I’ve had spine symptoms my whole life (fell down a flight of stairs at the lake as a teen and had issues, slipped discs, and even cysts ever since): But I sort of thought dance would magically “heal me”. Our life IS physical therapy, you know?

By 2020, I had 2 discectomies within 6 months of each other on the same lumbar disc because the first didn't hold (sneezing is dangerous), and then began the long journey with my C-span.

I know and love many who dont have use of all of their limbs, so I know it does not and should not define anyone… But if you could still “fight” to not lose your hands: Would you?

That’s what I’m doing here, now.

Before all of this, I had a lot of precious time pet-sitting for my eldest sister while she achieved her dream of walking the Camino as a pilgramage in Spain (incredibly difficult), and after she got back from such an exhausting adventure, I found a notepad with the words “We went for a walk” by the coffee pot in the early morning…. the very next day.

That has become my latest inspiration and metaphor.

To return from something challenging and painful, but to wake up the next morning and keep going at home.

For all the OT and PT and whatever-T a hospital may or may not provide, how can I fight to find my “went for a walk” again (it used to be dance but we are on a hiatus and ‘we’ as a ‘we’ are changing, shifting, evolving as well)… So what is my walk?

How do I keep walking… in both literal and psyhological ways?

In order to do spine surgeries on me, we have to turn of my gastric pacemaker (which definitely taught me how well that little tadpole works), so it means a lot of inability to eat, a lot of worry about bad outcomes like in the past when I had a fracture shortly after an operation, and just the general state of my flaky bones. (They are like the Phoebe of bones?)

This is not the last thing I have ahead of me in more ways than one. I know of two more things now, but- unless I jinx myself by saying this (bite your tongue, knock on wood, throw some salt)- they have found themselves into saving me in a way that does not implode my plans fully in the months to come.

The things that hurt me the most are the things I don’t write about.

There is power in that and… in a sadistic way… I encourage others to figure out what that looks like for them.

then….

It’d be easy to think I write and share too much about health, without realizing that- it not only helped me put dinner on the table for years as a young columnist and young mom to share about specific things… but it also allowed my personal life to remain almost entirely untouched.

My real traumas in my own shadows; Trapped along walls at certain angles at dusk alone.

THANK YOU my Word Nerd friends and to all those helping this independent memoirist continue to work by upgrading to paid (which also helps my goal of gifting my every-weekday-writing for anyone who asks for a reading scholarship, no questions asked)….

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