chronic pain, humor, personal writing

independence day

Last night was the 4th of July. It was also, for me personally, a comedy of errors, a sad little comedy of errors.

You see, fireworks hold a special place in my heart. Every year, I have a deep, inexplicably strong desire to see them.

It has been five years now that I’ve been, to a greater or lesser degree, disabled by extraordinary pain and functional limitations in one leg, a problem which itself is both cause and result of multiple massive surgeries. And it has been almost 28 years of sequelae from the very serious, exceptionally rare congenital muscular disorder that was discovered when I was 16, when my leg more or less exploded as soon as they slit the skin to relieve the pressure in the muscles, a defining characteristic of this crazy syndrome. All the ripple effects of this have spanned nearly three decades, and in the process, have made me, well, a bit of medical mystery, a case study of one.

But I digress. Back to my story: I love fireworks. I hate being sidelined. I have – because I’m a weird 40 something woman who still goes nuts for fireworks – endeavored to get myself to see some each year on the 4th of July for the last five years.

Last night was the closest I got in this endeavor.

So close and yet so far.

Let me explain.

The pain was at a 7-7.5 last night. I cannot walk more than a few dozen feet at a time these days. Good thing, I thought helpfully, that I happen to live on the bottom of the very hill where people come to watch the spectacular city display in the distance.

It’s all just up the hill from me!

Kool, kool. I got this.

Before I leave the apartment – because I both feel and look like poop on a platter, and because my ex boyfriend, a quasi-neighbor, could conceivably be there – I spruce up my hair with dry shampoo and put on red (red, goddammit) lipstick, cuz f*ck that sh!t, if I am gonna have a chance run-in with him and some new lady, I’m gonna look HAWT. So yeah, red lipstick.

Inner Voice: Ya ever heard of lipstick on a pig?

Shut the f*ck up, Inner Voice. We’re doing this. This is the year.

My plan, you see, was to drive as far up the hill as possible, till the road closures, and then park and use my crutches the rest of the way up.

Fail-safe plan!

It can’t be – what – more than .2, .3 miles from my car to the top of the hill? What could possibly go wrong?

So I commence plan.

I walk down the corridor that leads to the parking lot (note to self, it’s stupid to leave crutches in the car out of pride, this hall is long!) I make it to the door, neon green ice pack Velcro-wrapped around my leg, ready for my trek.

This is your Everest, jokes Inner Voice, before dodging just in time to avoid my proverbial ice pick.

I get to the car, drive up the hill as far as I can, park, and grab the crutches out of the back. Plan on track.

I start crutching uphill. I’m passed by an old man carrying portable chairs. I’m passed by some families with little kids and strollers. We are all presumably going to the same place. My hands already stinging from my climb, I imagine nodding to the baby stroller, saying, “Mind if I hitch a ride?”

I chuckle to myself. I then realize the chuckle was out loud. I cough, to stifle another laugh, but somewhat suddenly, and as such seem to scare the little girl in a peach dress passing me on my right. She stops and looks at me and at my crutches, and – you know – I get it. Metal crutches are loud and shiny and maybe a little scary. Even though I’m quite skilled with these things, if I do say so myself. (After well over eight years on crutches, I am certain I’d be an Olympic gold, maybe silver, medalist, if crutching were an Olympic event.)

But the girl scurries ahead and, looking back at me with big eyes, reaches for her mama’s hand.

This makes me want to laugh and cry at the same time.

Head down, I continue my climb. My left leg searing, and a blister already forming on my heel (stupid cute sandals, in case of stupid ex sighting), I begin to question if this is worth it. I throw a quick look back downhill and realize it’d be even stupider to give up now.

As I near my destination, I hear fireworks in the distance. I curse my slow self, sidelined by needing to sit down three times on my way up. Thinking I was hearing the real show, I start to crutch a bit faster.

A guy in a Red Sox hat says to me, “Whoa, be careful there – you don’t want to go and break your other leg now, do ya?”

I think briefly about whether the nearby police presence would take my side or his if I beat him flat to the ground with these things.

Instead, I smile politely and attempt a laugh.

Of course, I immediately think of better retorts (oh don’t you worry your pretty little head, cuz you’re gonna be watching me take home the Olympic gold metal for —) but he’s already too far ahead.

I sigh, more audibly than intended.

Finally, sweating, breathing a bit heavily, I reach my destination. I make my way, clinking and clanking, in the dark, over the uneven ground to find a spot as close as possible to the street.

I choose a place and my crutches make a loud metallic noise as I let them drop beside me. Some people from the group in front of me turn around to look.

Please do not say a goddamn thing.

I lay down the old shirt I thought to bring as a blanket and deposit myself down in the grass. Throbbing heat radiates down my leg.

Welp, I tell my body – inaudibly of course, we did it. We are here. We are finally here – we’re gonna get our fireworks on!

I begin to relax, let my mind drift.

When I was a kid, we would go to Vermont every summer. Those were the happiest memories of my childhood. My parents were still together, we were still a family then. We would gather old plaid blankets, pack some snacks, and go to the nearby high school to watch the fireworks from the football field.

They were probably unspectacular as far as fireworks displays go – it was a small rural town in Vermont in the 1980s after all – but it was a true highlight of my summer.

We would lay down our happy family spread, and take in the – out there – black sky and the – back then – bright stars. My parents would break out their little plastic Chablis glasses, and we kids would eat pretzels and popcorn, and we would wait.

All the other families around us were doing the same. All of us, looking up, expectantly. I remember an almost tangible buzz of anticipation in the summer air.

Then they’d start. We would Oooo and Aaaaah right in sync with the crowd, which – considering the traffic getting out of the school parking lot at the end of the night – must have represented the entirety of that small Vermont town.

But there was a definitive feel-good quality to the whole ritual. We were there together. As a community. As a family. We were a part of something larger. There was, above us, evidence of magic.

Hilariously, there was also evidence of our human absurdities. There was this one guy who – every year – would park himself on the edges of crowd and yell – with a volume and scope that, I realize in hindsight, could only have come from a full six pack of beer:

BOOOOOOOOOOO-MERRRRRRRRR!

After going several years in a row and hearing this guy, we had come to feel it was part of the show. The whole crowd came to understand what Six Pack knew intrinsically: that when he would shout, BOOMER!, we were sure to get a really good, really big Boomer! And we did. Sometimes we would yell along with him.

I remember each year my brother and I would twitter in excitement – Mom! Dad! When’s the BOOMER coming?

And then, as if on cue, the rebel yell:

BOOOOOOOOO-MERRRRRRRR!

We squealed. We knew what was coming next. The crowd knew, too.

And the finale was always spectacular.

It was magic.

Abruptly, quite rudely, I’m brought back to the present – by mosquitos. Lots and lots of mosquitoes.

I had remembered the red lipstick. I had remembered the shirt-blanket. Did I remember bug spray? No, I did not remember the bug spray.

Ha! Inner Voice revels, Lipstick on an idiot pig! Here you are, alone, ex nowhere in sight, in your red lipstick, being bitten alive!

Well, at least I have my phone, I tell Inner Voice in my defense. I’m not really alone! What!! I’m not. I’m gonna text my friend. See, I’m not lame!

Jesus, though, these bugs are vicious!

As I text my friend, I am horrified to realize – it is another fifty five minutes before the fireworks begin.

This is somewhat of a miscalculation on my part.

The blister on my heel stinging, my hands burning, the bugs biting – I didn’t even want to think about my leg. What to do?

I take a deep breath and consider my options. I try to muster the courage to sit through all this for another hour – just to see the fireworks, alone, from a distance. No chance of a Boomer.

Nope. I can’t do it.

What is this pilgrimage for anyhow? A nostalgic trek to a forgotten era. A simpler life. One in which I was parked in the middle of that plaid blanket, planted right in the heart of my family.

F*ck this. I’m out. Let’s go, Lipstick. NOW.

Inner Voice has a point this time, I concede.

I pick up my loud crutches and in one expert (dare I say, Olympian) move I jump up and get going down the hill.

Clink. Clank. Clink.

A guy in a hat with a cooler in hand looks at me going downhill as he’s going uphill.

Say One Word. I dare you!

I want to scream.

BOOOOOOOOOOOM-ERRRR!

Here, we have arrived at the finale of this failed endeavor.

At this point, I can’t help it, but I start to feel sorry for myself. This is the fifth year in a row (and who knows how many times over my lifetime) that I’ve missed the stupid fireworks because of my leg. It is just one hour per year that I need my leg to cooperate. One single hour.

But for five years, that hope has not been my reality.

I fight the tears.

You can’t cry while crutching!

It’s true. I know this from experience. If you do, the tears just sting the corners of your eyes and, with your hands in use, you can’t wipe them away, so they just trickle down your cheeks and into your ears – and, on bad days, drop onto your shirt, leaving dark, telltale wet spots.

Finally, finally, I see my car. I snort at the absurdity of it all – I don’t try to stifle it – everyone else is uphill already. I’m alone in my descent. Hot tears come in spite of my efforts to stop them, or maybe, because of my efforts.

But just as I reach my car, everything hurting – I feel the breeze blow. Just enough that the leaves of the bushes lining the sidewalk rustle. It’s a quiet sound.

On the breeze, I can smell the faint summer scent of linden flower. I stop to dab my eyes. I realize – I can see the moon from here. An unassuming sliver of ombre against a faded gray sky. It is in the opposite direction of where everyone else’s eyes are trained, expectantly waiting.

An old saying one of my sisters shared with me sometime in the last few years, when I’d complained that my life had become the wreckage of its former self:

Barn’s burnt down, but I can see the moon now.

When she first told me this, I didn’t really get it.

I think I get it now.

I laugh and cry at the same time, out loud now, cuz … the barn’s burnt down and, really, who has a fuck left to give.

I get in my car. I take a deep breath. Linden flower in the air, orange crescent moon in the sky, each putting on their own quiet show.

A distant voice climbs inside me, once more, from deep within my memory banks, with a volume and scope that can only come from years of experience:

BOOOOOOOOOO-MERRRR!

I turn the ignition on and head down the rest of the hill home. I won’t be able to see the moon from home, but I will know it’s there.

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