Collaborative

July 21, 2019

I’m thinking a lot about my brain surgery lately. My five-year anniversary is coming up in less than two months and I want to do something to celebrate. Five years! That’s a big deal! Thinking about my brain surgery leads me to think about my body. And I feel disheartened for the way I’ve been living with it.

A week ago my mom and I joined Weight Watchers. I’m not overweight. But I also haven’t been able to lose the extra weight I’ve put on from all of my surgeries and the tumor and whatnot, and I am uncomfortable with my body. It’s changed so drastically over the last five years and I haven’t felt stable. My mom’s going through hormonal changes and it’s affecting her weight, so I offered to do it with her primarily as support for her but also because, why not? I’d like to learn to eat well and lose 10 pounds, give or take.

Wow.

Yeah, so, I didn’t realize how poorly I had been treating my body. The first week was hard. I haven’t really been eating well. Sure, I’ve increased my fruits and vegetable intake over the last few months (barely), but I’d also been eating ice cream every day and drinking hot chocolate every morning. And I’d been eating way too much, snacking nonstop, and ultimately not meeting my body’s needs.

It’s not until I’ve been following a guide of how to eat well and provide my body with what it needs that I realize how poorly I’ve been operating. But why? Why have I been reluctant if not opposed to providing my body with what it needs best?

It’s not a difficult question, I know the answer, but I am ashamed to admit it.

I’ve been punishing my body.

It’s not the body I want it to be or think it should be! No wonder I’ve felt so detached from my own body like we’re separate entities. I haven’t wanted to claim it. This is unfair of me because I haven’t been acknowledging that my body isn’t intentionally out to sabotage my hopes and dreams and plans on Tuesday, it was just made this way. It’s the product of circumstances well beyond its control and I can’t fault it for that. Even though I’ve been desperately trying to do so.

As I come up on the five-year anniversary of my brain surgery, I want to listen to what people have told me about my body that I’ve previously ignored. It wasn’t until a couple of years after my brain surgery that a doctor told me my surgery wasn’t a cure, but a treatment. I didn’t understand this important distinction at the time I was signing consent papers for my brain surgery. Not that I’d do anything differently, deciding between life and death isn’t as difficult as you’d think when it’s right in front of you and a few pages of paperwork away. But I thought I had brain surgery to correct the malformation of my skull. I actually had brain surgery to decompress the syrinx (cyst) in the middle of my spinal cord that formed as a result of my malformation. You can’t correct a skull malformation that’s been that way for 20 years. The damage is done. But no one told me that. Or if they did, I was heavily medicated. Or in shock. 

I’m starting to come to a place where I want to acknowledge that there is very real damage that has been done to my body due to twenty years of malformation, and that results in very legitimate limitations to my body’s functioning. I want to hear that and work within it, not hear it and pretend it isn’t real.

My body’s not trying to sabotage me. And I can’t force it to be what it’s not. No matter how much yoga I do, I’ll never have good balance. Even though it drives my best friend crazy, my muscle movement will always be slower and I’ll never be able to match her walking or wine drinking pace. I’ll have headaches and positional vertigo no matter how unstressed I am. The list goes on with every diagnosis I have. I’ll always be weaker on the right side of my body. I’ll always need to get injections of B12 regularly. The frequency might fluctuate, but the need won’t.

And something new will always pop up. Over my lifetime, however long or short that might be, I’ll have new symptoms that show up because of other factors at play in my ever-changing body. I need to get a solid neurologist and internist who is familiar with damage to the cerebellum who can say, “yep, that’s the Chiari malformation, here’s how we can address this,” or “nope, that’s new, let’s find you a cardiologist.” And I don’t need to panic when that happens, I can be understandably upset or afraid, but it doesn’t need to trigger an entire meltdown or existential crisis.

I find I’m bending toward compassion for my body instead of resentment. I don’t want to deprive and punish, I want to accept and adapt. I want to forgo the things that only bring me pain or difficulty and embrace sacrificing for what allows my body and me to live and thrive. It forces me to ask the question, is my body a priority?

Honestly?

No. It isn’t. 

It hasn’t been. But it can be now. I want it to be now. What that looks like, I don’t know. I’ve been thinking I know what my body should want or how it should be or what it should use to operate, and I’ve been critical and self-shaming when it doesn’t match up that way. But that’s so childish and beyond counterproductive and exhausting.

I don’t know what my body needs. Because there’s no standard. It changes day to day and week to week. Yesterday it needed a 2.5-mile hike and then a 5-hour nap. Today it needs a chill day around the house, some good food, and more water than I had yesterday. Tomorrow, who knows? I’ve planned a yoga class, but that might change in the morning. And that’s okay. I’ve got to strip away the expectations for my body and just live in it, day by day, moment by moment. It will be different and ever-changing but freeing and better, much, much better. I won’t be perfect at listening. I can’t pretend that I won’t be overly demanding at times, I only hope that I embrace the learning curve and that my default orients toward compassion over shame.

It feels like a new me. I believe this is what collaboration feels like.

So I want to celebrate because five years is a big deal.

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