Bodies and Words and Terms – Oh My!

The other day, I forgot that I was wearing my neck brace as I entered a meeting. I was immediately asked what happened and I fell into a knee jerk response that I wear it to protect my spine as I heal from surgery.

I told the truth, but it felt like a lie. I do wear the brace to minimize jostling as my spinal fusion sets, but I also wear it to support other parts of my spine that weren’t operated on, and that aren’t quite stable enough to hold their own.

As I thought later about what I could have said instead, what would have felt more honest, I struggled to come up with anything remotely concise. Before the surgery I would say that my head was floppy and the brace held it up. But now I have metal rods and plates and bone to do that.

And yet, I still sometimes need the brace. I still have Ehlers Danlos Syndrome – something that isn’t going away and that can effect every part of my body.

I could say that I have a chronic condition and need the extra support. But that doesn’t feel right either. That doesn’t acknowledge the unique experience of recovery. The success of the operation, the improvement of my symptoms, the swift turn my life has taken from a downwards spiral of dysfunction towards potential, hope, and choice.

There isn’t a word or a term for patients with chronic illness who conquer an aspect of their condition. Their lives might be dramatically different, but they are still faced with the same binary definitions – healthy or sick, able or disabled.

I don’t know how to categorize myself. I am much more able than I was before. The metal in my skull and spine are providing more support than my neck brace ever could, and are allowing me to appear more or less ‘normal’.

So maybe I can be normal? Maybe I can cross over into the more or less healthy category? The able category? After all, that’s how I appear. Unless I wear my neck brace, no one is going to offer me their seat on the bus.

Except I’m not cured. The surgery was a structural fix to a structural problem caused by an underlying faulty system. And that system hasn’t changed. It still gives me trouble, and will continue to do so.

It shouldn’t be such a big deal, this lack of language, but it feels very stifling. It feels as though I have to choose a category, even if it doesn’t quite fit, because everything has a label.

Race. Nationality. Gender. Sexuality. Ability.

We even separate between mental illness and physical illness – as if mental/emotional symptoms exist separately from physical symptoms.

Maybe, then, I shouldn’t work too hard to find an explanation. Maybe it’s a good thing that no neat label exists.

We have these perfect black and white categories, but the reality is that most of us are grey, fitting somewhere in the middle.

According to my quick google search, a disability is defined as ‘the consequence of an impairment that may be physical, cognitive, mental, sensory, emotional, developmental, or some combination of these’.

And yet, we don’t generally consider someone who sprained their ankle as disabled. We don’t often consider near-sightedness a disability. We don’t label someone with poor coordination as being disabled, or someone who experiences mood swings, or someone who is sensitive to loud noises or bright lights.

Most of us have some sort of quirk, something different about our bodies. Sometimes those things can impair us. Sometimes mildly and sometimes severely.

Ultimately, I’m a person with a body. A body that’s a bit screwed up.

And that’s about as concise as it’s going to get.

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For the love of adaptation

The other day, I FaceTimed my parents and when my mom picked up, I told her that I was calling because I’d caught a glimpse of my reflection and thought I looked like myself. It made me feel incredibly excited and I wanted to show her.

I’m not sure that either of us knew what I meant.

I wasn’t dressed up in any particular way, no special hair, makeup or accessories – but somehow something seemed different and simultaneously deeply familiar.

That feeling keeps catching me in unexpected ways. The feeling that everything has changed so fast and so drastically that it isn’t recognizable, coupled with a feeling of certainty, of rightness.

It catches me when I make plans with a friend and say with pride that I’m available anytime and up for anything, and then realize with a different kind of pride that I’m not. I’m physically capable of meeting them anywhere at anytime, but I’m busy. I have other plans that I have to schedule around, other things to do in my day.

It catches me when someone asks me what I do and I start to reply that I’m in recovery from surgery when I suddenly remember that I’m also in a university program, that I’m working, that I’m volunteering, and that I’m singing and creating art.

I feel like I am living in two worlds, that I am two different people.

And I keep expecting to panic, to lose my balance, to crash.

But I haven’t.

There is so much going on in my life right now. I am healing. I am rebuilding my physical strength. I am singing. I am writing. I am studying. I am teaching. I am searching for all kinds of opportunities and making plans and building castles in my mind.

But I am not juggling. I am not balancing.

I am being.

This is who I am, who I always have been.

I thrive off of challenge and variety. I love sinking my teeth into new projects.

A couple of months ago, the number of elements in my life looked smaller on paper, but the amount of effort and agility involved in accomplishing them kept me motivated and fulfilled.

And now my ability level has changed, has grown, and the elements in my life have changed and grown along with it, keeping me feeling that same motivation and fulfillment.

The size of the shift has been sudden and drastic – enough to give anyone’s head a bit of a spin, never mind someone recovering from neurosurgery.

But it’s been just that. A shift, not a change.

I’m adapting to my new reality. And I’m absolutely loving it.

New Year’s Eve

Well, it’s the end of a year. Or the start of a new one, depending on what timezone you’re in and when you read this.

I’ve never been a big fan of New Year celebrations. They often seem out of sync with how we spent our year, and how we’ll most likely be spending the next. It feels a bit deceitful.

I have, however, always been a big fan of another New Year tradition. I love New Year’s resolutions. I love looking back over the past year, acknowledging the people, events, and changes that shaped it, and then looking towards the future filled with hopes and plans and the knowledge that life will surprise me.

As I glance back over 2015, it feels like the year flew by. It began at one of the lowest points in my journey with chronic illness. I had to move back in with my parents, housebound, with no diagnosis, and my health was spiralling completely out of control.

Since then I’ve been diagnosed. I’ve moved to a new city. I’ve had two neurosurgeries. And, perhaps most importantly, I’ve gotten a puppy.

I’ve also experienced the kind of love and support that is usually reserved for movies. So many incredible people have touched my life this past year, showing me humanity at its finest.

2015 brought me uncertainty, fear and immense, awe inspiring, beauty.

I’m sitting here now with an hour left of the year, signed up for a university course, scheduled for a voice lesson – something that I didn’t believe was possible 3 months ago, let alone a year, and trying to come up with a set of New Years Resolutions.

Resolutions are a bit of a laughing stock, because they’re so rarely followed. It feels embarrassing at the best of times to make them, knowing that they’ll probably be forgotten in a week or two. And right now, it feels impossible to create a list in the first place, because so much of my ability is up in the air as I recover from my latest surgery- I have no idea what a reasonable commitment or goal is for myself, and I won’t know for months.

But I want to make them. Not just because I happen to love lists, although that probably is a strong motivating factor, but because they help provide some clarity. They give me a roadmap, tracing out what matters to me.

I may not follow them specifically, but they will stay at the back of my mind, fully formed for when I’m facing a decision.

In a way, I guess they’re my brand of a New Year’s celebration – a bit deceitful, but enjoyable and valuable.

There seems to be a lot of pressure on New Years Eve – pressure to be doing something special as the clock counts down. A kiss at midnight, a party, champagne – we want to ride off into the sunset of the previous year, and start the new one off on a high.

I’ve always seen that as wishful thinking, trying to start off the year in a style that won’t be kept up.

But maybe it’s more than wishful. After all, you’re making a conscious decision on how to spend your night. You’re choosing how you want to start off the new year, even if it’s a departure from what’s normal. Especially if it’s a departure for what’s normal.

Maybe New Year’s doesn’t have to be about a big statement. Maybe it never has been.

Maybe it’s about the tiny choices – where you spend your evening, who you spend it with, and what goals you make for the next year.

Maybe it’s a big day for a little definition.

This year is a big blank slate for me, overwhelming in its possibility.

But maybe I’m trying too hard on my resolutions. Maybe I don’t have to come up with a list of concrete goals.

Maybe that’s my problem. The problem that I want to work on.

I think that will be my New Year’s Resolution. To embrace the little things, to acknowledge their importance. To accept that every small choice, every small step has an impact. That the silly things can matter, and the big things might not.

I doubt I’ll keep to it faithfully. But, then again, that’s not really the point.

I can’t wait to experience all the little things that will shape 2016.

Happy New Year!