Twisted Notebook: Thoughts and Reflections

This is Part 39 of a serial blog originally titled 'Martha Carter's Healing Journey'. Curious about the earlier posts? To start from the beginning, read Part 1.

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This month’s blog is a collection of thoughts and reflections from my life related to scoliosis and healing over the past several weeks, starting with my first ever ‘cacao ceremony’, a spiritual group gathering that facilitates connection, healing and self-reflection, plus thoughts on music, surgery, and bonding over ‘feeling good twisted’ — and ending on Wonder Woman.

Cacao ceremony 

On a beautiful night in September, I joined a group of women at the Open Heart Mind Centre (OHM) Yurt in Black Creek, B.C. for my first ever cacao ceremony where I learned that these gatherings have been practiced for thousands of years to help people connect to their own hearts and each other. Inspired by the ancient rituals of the Mayan and Aztec cultures, the three universal pillars of the cacao ceremony are: gratitude, intention, and reciprocity.

As the sun dipped, and the sky turned orange, we sat in a circle and introduced ourselves while sipping on the delicious, thick cacao drink. The teacher instructed us to drink it all, and have more if we wanted. She spoke of how the stimulant in the drink can open our hearts. She also spoke about how it can help us let go of our resistance: how we often resist letting go of what is wrong for us and, even more, how we often resist letting in what is good for us. She encouraged us to let go of it all. And then she put on some music and we were invited to move. Some people lay down, some people sat, and the rest of us danced and danced and danced! As the cacao made its way through my veins, I could feel a sense of freedom take over as my heart opened and my tension melted away. 

After the dance, she guided us in a ‘transparency’ circle where everyone was invited to share whatever they felt like talking about. It was touching, beautiful, and filled me with gratitude. 

‘No, Resistance is But Vain’

Ever since the cacao ceremony, this baroque song that I was required to sing during my music student days has been going through my head (see below!). Back then, I found it to be a ridiculous song to sing - plus it really didn’t suit my voice - but now I am finding it to be a comical reminder to let go:

https://youtu.be/_LlG147bIgs?si=zgsfZx1KUZ8YzzWg

Resisting knee surgery

No no no - NO PAIN. NO CANE!

Speaking of resistance… It has been many years that I have been struggling with an arthritic knee and, for the last few years, I have had chronic leg pain and relied on a cane for walking. Along the way, I explored many therapies to mitigate the dysfunction, but ultimately had to face the fact that I needed a total knee replacement. Against all logic, I really really REALLY didn't want to have one. I was terrified at the thought and thus relieved when the surgeon told me to come back when I was older. Apparently, the hardware is only meant to last 20 years so they prefer patients to be in their 60s. The pandemic caused the delay to be a lot longer - enough to make me want to get back on the surgery list. Finally, I had the surgery in June 2023. And what a relief! It feels like a miracle. I am SOOO grateful to my surgeon and all the amazing hospital personnel. They were amazing and the results are life-changing.

But boy was I resistant about having it. During the weeks leading up to surgery, I had anxiety-inducing nightmares around the surgery. Perhaps it’s because I have already endured a few major surgeries in the past and know they can be very uncomfortable? Or maybe it's more related to the stubborn delusion that I ‘should’ be able to overcome the pain on my own; to fix it myself? Apparently this is a very common viewpoint found in other scoliotics: “I should be able to stand up straighter, I should be able to do more, even with back pain”, etc…

Regardless of its origin, I was whining and moping all the way to the hospital, feeling sorry for myself as I fought back tears. But then, all of a sudden, a woman limp-walked into the waiting room holding a pair of crutches. As she neared a chair, she threw her crutches in the air and let out a WHOOT. She laughed as she said loudly for all to hear,  “I can hardly wait to get this done!”, and then she explained she was in for her second hip replacement and could hardly wait as the first one went so well.

I took a deep breath and let her positive, non-resistant energy wash over me. I had to smile as I firmly told myself, Ok. I can hardly wait to get this done…

Thanks to my successful surgery, I was able to dance at the cacao ceremony, feeling freedom in my movement for the first time in a few years… and I can hardly wait for the next cacao ceremony!

My new obsession over the lifetime of surgical hardware 

I can’t stop thinking about how my knee surgeon made a big deal of the fact that knee hardware is only meant to last for 20 years. When I had a spinal fusion at age 14, nobody mentioned anything about any hardware ‘best before’ dates. Of course, that was many years ago, so one might expect that there is now more discussion and disclosure around this subject. However, as far as I can surmise from my conversations with many surgical patients, this subject never actually comes up. In fact, most of the time, I hear that young scoliotic patients are encouraged to undergo surgery as soon as possible.

One medical professional suggested that the spinal column doesn’t get the same kind of wear and tear that a knee joint incurs. That may be true. However, the more I work with fusion patients, the more I hear about how many people need spinal revision surgery - and often more than once!  Until recently, I understood that these surgeries are necessary to correct flat-back syndrome, or to stabilize compensating curves or degenerating discs. But now I am wondering how many revision surgeries are required due to failing hardware? I have met many people with broken rods, and usually they are advised that they can just leave them like that - which I find rather shocking to be honest! Is there any formal follow-up on any of this? Any official organization out there who is keeping track of these issues? I wonder…

As many readers know, I had my Harrington Rods removed after 21 years because they were bothering me. I knew nothing about hardware issues. It was pure instinct that I wanted them gone. After much begging, I found a surgeon who was reluctantly willing to remove them and I am extra grateful for that. I know that the more recent surgical techniques are more complex and thus harder to remove, however I highly encourage folks with Harrington rods to consider this option if their hardware is causing them grief. After all, most people with this instrumentation have had it for much longer than 20 years! (Read my Harrington rod removal blog post here.)

Feel Good Twisted Weekend retreat

At the end of September, starting on the night of the beautiful Harvest full moon, TOPS held its first ‘Feel Good Twisted Weekend’ led by myself and the lovely Claudia Katherine. We shared four days and three nights of scoliosis education and exploration with a wonderful group of twisty women from far and wide. 

Slightly different from our popular ‘Yoga for Scoliosis’ retreats, the ‘Feel Good Twisted Weekend’ aimed at helping each person develop a personal practice for understanding, sensing and managing their scoliosis and fusion in a way that works for them and their lifestyle. To do this, we introduced a range of techniques including Meditation, Breathing, Somatics, Yoga for Scoliosis, Scoli-Pilates, Schroth and Physiotherapy. We also spent time looking at each person’s unique curve and twist pattern, guiding them to develop a short daily practice based on what they learned during the weekend.  

Like all TOPS retreats, it was enriching to spend time with other ‘scoliosis warriors’ who manage to survive and thrive with this confounding condition; to build new friendships through walks in nature, soaks in the hot tub, and chats over delicious, nourishing catered meals. By the end of the weekend, we all agreed that the ‘feel good twisted’ format made us all feel pretty darn good; that we all felt stronger, more knowledgeable, and empowered in body, mind and soul. 

Scoliosis Warriors

Speaking of warriors, on the first day of the retreat I received a message from another fused friend who I have not spoken to in a long time. She wanted to share this poem with me as she loves it so much - and I hope you will too.

Wonder Woman - by Ada Limón 

Standing at the swell of the muddy Mississippi

after the Urgent Care doctor had just said, Well,

sometimes shit happens, I fell good and hard

for New Orleans all over again. Pain pills swirling

in the purse along with a spell for later. It’s taken

a while for me to admit, I am in a raging battle

with my body, a spinal column thirty-five degrees

bent, vertigo that comes and goes like a DC Comics

villain nobody can kill. Invisible pain is both

a blessing and a curse. You always look so happy,

said a stranger once as I shifted to my good side

grinning. But that day, alone on the riverbank,

brass blaring from the Steamboat Natchez,

out of the corner of my eye, a girl, maybe half my age,

is dressed, for no apparent reason, as Wonder Woman.

She struts by in all her strength and glory, invincible,

eternal, and when I stand to clap (because who wouldn’t),

she bows and poses like she knew I needed the myth,

—a woman, by a river, indestructible.

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