The last four weeks has contained multitudes.
The first two were spent bantering around the Galapagos Islands on a cruise ship for work. And all the while, I convinced myself I would return home changed; more relaxed, less anxious about little things that can hold our attention hostage; others’ opinions or commuter traffic, mundane relationship snags or family spats.
Yet, in every iteration of the fantasy where I became this slower, more steadfast self, I never thought about how the change would stick upon return.
Then, on the Monday of the second two weeks, the day after arriving home, a disk in my neck that had been silently slipping, finally collided with the nerve root in my spine.
Cue indescribable pain. Screaming-in-your-car-with-a-jersey-stuffed-between-your-teeth pain. A pain that eclipses the sense of self so thoroughly, you’ll sob in crowded ANE rooms, numbly strip before a parade of doctors or call your mother at 2am from the bathroom next door so she can rub Voltaren on your bare back without a single shred of sharp shame or bruised pride.
Caused by a disk, it was also an invisible pain. A but-you-look-so-fine kind of hurt; one you can occasionally clamber atop after swallowing a fistful of opioids and anticonvulsants you have to track on your phone.
Rinse and repeat.
And you do (clamber) because often it’s easier than enduring the barrage of silver linings or band-aids hurled by those who haven’t learned how to hold unhappy endings. Who cannot deal when someone drifts from the script of “how are you” “yeah good, you?”
At church the following Sunday, too tired to pretend, I drifted far. “Yeah,” I replied, in a disarmingly upbeat tone, “I’m doing pretty bad aye? The pain is still really terrible.”
Most paused for a moment before saying at least I could: work from home / looked great / had health insurance. Other shared kind but unsolicited advice about how they fixed [insert similar-but-not-really affliction].
Then there were the few who met me where I was, not where they wanted me to be.
They affirmed the difficulty (“damn, that sounds really hard.”). Maybe said they were sorry and asked how they could help (which, for the record, is not the same as the non-committal ‘let me know if you need anything’), but that was it.
If this sounds less practical or optimistic than the previous responses, it is. But that doesn’t mean it isn’t helpful.
Meeting struggle with sincerity or realism can feel sharp for the giver, so we rarely give it. But to receive it? To have your pain acknowledged as ugly and crappy and hard, can be the most perfect gift.
Because, when you can’t see it, you do feel the pressure, to justify or minimise. To say it’s not that bad, or if you can’t pretend, to apologise for the fact that it is.
“I really don’t want to be a Drama Queen” I said to the emergency department nurse at 7am on Sunday. “But, um, it’s just, I haven’t really slept in three days, and I can’t really breath from the pain.” Every statement an unspoken ‘no worries if not’.
“You’ve done the right thing by coming here”, she said, looking up from her notes. Her words reminded me that drugs are just one kind of painkiller.
Maybe the pressure came from the first nurse I saw said, “are you sure you didn’t just sleep on it funny.”
Or because, after fainting during the X-ray later that morning and being taken to a hospital bed, another nurse took my blood, asked why I had fainted and when I suggested it could have been stress, said: “well, that’s lucky because we’re so busy you wouldn’t have gotten a bed otherwise.”
I’m not here to criticise underpaid and overworked nurses, doctors, radiologists et al. I know ED nurses have minutes to sort real emergencies from minor issues, doctors have seen far worse than a slipped disk and everyone (everyone) is just trying to make it to tomorrow.
But it did expose how much of a privilege advocacy is. How game-changing it is to have someone stand beside you and demand to be seen by someone, then, when they arrive, be actually seen by them. Because, when you’re unwell, it’s the last thing you can do and the first thing you need.
It’s 2022. I wish my dad didn’t need to take time off work so he can sit silently in the corner of a doctor’s office, so they’ll sit a little straighter, prescribe more generously. I wish he didn’t need to do it again for my mother just three days later.
I wish this wasn’t one of countless times. I wish I didn’t have three little scars from a surgeon who hadn’t listened, and a fourth larger one from when he did. But not before he blamed me for his incorrect initial diagnosis.
And I wish it wasn’t unimaginably harder for anyone who isn’t young or university-educated, white-skinned or with family who would move heaven and earth to help them.
I wish my girlfriends didn’t have their own stories, of being told it’s just ‘Hormones’ or ‘stress’, that it wasn’t statistically proven female patients and people of colour are more likely to have their symptoms dismissed by medical providers.
There is no comforting conclusion(and you should be wary of those who offer such things when discussing systematic issues). So maybe we have to take the little wins where we can; learning how to hold our closest people’s problems without pulling out the super glue. Showing up at the doctor’s office/specialist practice/emergency room (even if they say ‘no worries’), and letting a hard thing be hard. Because, ironically, that can make it so much easier.
So, that’s what I’ve been thinking. Life can be quietly tough sometimes, so tell your friends you love them today. Or simply just check in with that person — science says it will mean more to them than you think.
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Sarah