Sh*t Really Does Happen: and 6 Other Insights from the 3 Worst Weeks of My F****ing Life
My fiancée had a brain hemorrhage the day after we landed in Ottawa for Christmas. 36 hours after meeting my folks and unpacking our bags and celebrating our imminent first Christmas as a newly minted family we were in a hospital room, waiting for the pregnancy test to come back negative so they could give her a stronger painkiller and maybe just maybe she could stop screaming and flailing and begging me to let her die.
Several hours and an ambulance ride that seemed to go on forever, even for an ambulance ride, and zero food or sleep later and it’s 6.30am and we’re in another hospital and there’s 8–12 guys standing around us talking to us slowly like we’re stupid but somehow insufficiently clearly about subarachnoid brain hemorrhages and aneurysms and CT scans and angiograms and neurosurgery.
That night we’re in another part of the ER where you don’t get a comfortable bed but they charge you like you’re admitted to the proper bit of the hospital and the first surgeon I’ve ever met with a decent bedside manner actually decent doesn’t do this man justice he’s an angel from goddamn heaven is what he is is telling us they found the aneurysm but it’s too dangerous to coil so they’ll have to clip and that involves a craniotomy and not flying for weeks because of air that gets into the skull and afterwards there’s a risk of stroke from something called vasospasm and a risk of hydrocephalus which sounds really bad but those are from the aneurysm not the surgery or was it the hemorrhage and the social worker will be by tomorrow maybe to talk about how you can pay for all this.
1. Sh*t really and truly does happen. And not just to other people. It happens to you and to the people you love and make it your duty to protect.
Did I mention that we have no way whatsoever to pay for all of this? We were traveling without health insurance, because me and my pre-existing conditions make us really expensive to ensure. Canada doesn’t actually have free healthcare for everyone, by the way. Canada has a provincialised system of single-payer universal healthcare, which means people are ensured collectively by… the provinces and territories. So you’re only totally covered if you’re a resident of the province where you’re seeking care. Foreigners get jack. So do Canadian citizens living abroad and their spouses. I was pretty upset about this fact at first. Wasn’t sure how we could be so stupid. That was before words like ‘neurosurgery’ started getting thrown around. Not like we were going to take out insurance that could cover what I assumed at the time would be hundreds of thousands of dollars (turned out to be less than that but still more than sufficient to make any insurance we would have reasonably taken out laughably insufficient). So by the time the surgery was rolling around I was pretty over my own stupidity on this particular issue.
2. Surgery is terrifying no matter how far you are from the knife or drill or whatever precision instrument it is they use to open a human skull without damaging the soft brain centre.
The waiting weighs on you. Physically. Waiting is a literal weight that drapes itself around you and slowly presses down and down and down until you’re squished beneath its infinite possibility and lay flat on the ground without hope or happiness or strength left in you and all you’ve got left is prayer. Prayer fills the void between you and certainty. You beg a God you’re not sure is there because you used to go to church and he owes you goddamnit and this isn’t working try Psalm 23 but that isn’t working either try the Lord’s Prayer or some Hail Maries or something you don’t have a rosary you’re not even Catholic and please God please God please God and the words kind of slip away and your whole being becomes a sort of desperate prayer and a plea for some bargain or other like He makes bargains didn’t you pay attention in Sunday school? Eventually you’re sort just of meditating on your own helplessness and desperation and hoping that someone out there is feeling the depths of your emptiness.
After surgery comes weeks in the hospital. First stop, overnight in the Post-Anaesthesia Recovery Unit. That place is big and open and filled with people who look like they’d been through a hell you can’t even imagine. The nurse was nice, though. Then the Neurological Acute Care Unit (NACU), home-away-from-home for 2 weeks. 24 hour visiting but they encourage you to go home overnight because everyone sleeps better that way, especially the first week or so. All day, every day, by her bed. Home to sleep, shower, eat. An endless cycle of desperation and exhaustion. Desperation to hide your exhaustion. First reading by her bed because all she can do is sleep then after a bit she’s feeling better and you just talk all day maybe. Also you run around lot fetching things and helping her out of bed and back to bed.
3. It’s still hubris if you do it out of love.
I forgot how to do things for myself because all I could think of was looking after everyone around me. I was overcompensating: I felt like I’d failed the woman I love so I tried to make up for it by looking after everyone around me even though I was the one who needed looking after. The result? Anger, frustration, and breakdown. I was afraid to show how tired and scared I was because then I’d be failing Caroline again. It made sense at the time, I guess. Of course I only wound up making it worse because not talking about your feelings doesn’t make them go away.
4. Swearing helps. So does crying. Once I threw up.
Those feelings have to come out of you. Let them. Not indiscriminately. Don’t yell at a nurse or drop-kick a crappy hospital meal. Find a moment. That can be with a good friend or a quiet corner or in the shower. Personally I made use of the road under the passenger’s door of my mother’s hatchback while she took out a parking receipt, the day after Caroline’s surgery. Security was on it’s way to investigate by the time we were moving again. My successfully externalised emotional distress remained there, on the road, until the rain washed it away a few days later (unseasonable warmth).
5. Angels abound even on this fallen earth.
Remember that surgeon I mentioned? He made a painful and frightening situation a thousand times better by his easy manner, his friendly smile, and his wisdom is knowing what to tell us when. He brought a little light into a time of crushing darkness. And he wasn’t the only one. A nurse in the last ward Caroline was in post-surgery made us smile and lent a sympathetic ear when we needed it most — as we found ourselves seemingly ignored and forgotten by the neurosurgical team and hospital bureaucracy. She spent her very limited free time just chatting with us by Caroline’s bedside. That little gift of conversation meant more than I can say.
Of course, the care was not always so stellar. The whole ignored and forgotten business wasn’t exactly pleasant. By this point she’d been in the hospital for weeks and we’re trying to get her out but the good surgeon is on vacation and the residents on the neurosurgery team are distant and unhelpful so best we got is moving her to the Neurological Inpatient Unit where there’s less beeping because words like ‘anxiety’ and ‘mental health’ apparently mean nothing to these doctors doctors is the wrong word these people are basically engineers for your brain and to them you’re not a person you’re a piece of malfunctioning equipment and the equipment’s annoyingly persistent boyfriend or whatever. Next day we’re waiting for the team go come on their rounds, three hours late so we decide f*ck it we’ll go check out this patient library we keep seeing signs for but the nurse says no wait they’re here on their rounds and I’ll go make sure they don’t leave without seeing you. Three hours later and f*ck this I’ll go find them so the nurses go grab a resident for me. The resident goes on about payment plans and the lack of a “decision-maker” on staff because it’s New Years and says he’ll be back to talk to me. That’s at 3pm. At 8pm we hear from a different resident. Have I mentioned we’ve been afraid to leave the room since 10? Also I’ve been emailing hospital administration because f*ck this f*ck this so hard. New resident well actually he’s not new he’s the second nicest and we’ve been dealing with him since we rolled up seems like he legit wants to help but he says they can’t get in touch with nice surgeon who’s on vacation they’ve been trying but he agrees to try to get us out tonight or maybe tomorrow no definitely tomorrow because the team absolutely wants another look at her. Next morning: discharge. Never saw hide nor hair of the neurosurgery team.
6. Be up in people’s faces — judiciously.
People are overworked and underpaid. Sometimes they’re also inexperienced, unprofessional, or incompetent. Knowing which is the cause of your problem requires a thorough knowledge of the Force. When you feel let down, speak up. Don’t be silenced, ignored, or shoved aside. Don’t be an ass. Remember that they’re human too and they have other work to do and a bad back and a mortgage and ungrateful kids and a book they’ve been meaning to finish. If you manage to find the balance, I can only assume you’re the chosen one spoken of in ancient prophecy.
7. Accepting help is difficult in proportion to its necessity.
The whole time Caroline was in the hospital people were bringing food to my parents’ home, it was amazing. The little greyhound (the dog) adoption group my mother runs all got together to organise daily drop-offs. Others just showed up at the door. I was overwhelmed, in tears, every time I was home when they came. One time the woman running a little stall selling jewelry in the part of the hospital where all the restaurants and shops with the confoundingly poor hours are just gave us a beautiful, and not inexpensive, bracelet. Just like that. My mother was shopping, explained the situation, and the woman wrapped it up and gave it to her, after she’d made her sale. Add to that the legions of well-wishers on Facebook and I was overwhelmed with gratitude.
But when the time came to actually ask for help? Could barely manage it. Organising our YouCaring campaign was the hardest, most writer’s block-inducing thing I’ve ever written, and I’m a doctoral candidate with a moribund blog. Let’s not discuss how long it took me to get to it. We need the help I know we need it hell I want the help but actually going out and asking people to give me their money so I can pay my bills that’s more terrifying than all the armed police stops random airport security screenings and online harassment I’ve ever faced combined.
5 weeks to the day after Caroline’s surgery we’re on a red eye out of Macdonald-Cartier to Heathrow. That went kind of poorly. Heathrow didn’t get the special assistance request and we had to run around pushing Caroline in a wheelchair because we had to book a 2 hour layover at the busiest airport in Europe because airlines aren’t actually nice when you rebook because of life-threatening medical emergencies. Arrived at the gate just in time for pre-boarding. Made it back home, our actual home, where we live, early afternoon the next day, local time. One month in, eight months to go till full recovery. Long road, one day at a time.
If you feel like helping me and Caroline or maybe you feel like you’ve learned a thing or two and want to say thanks you can throw a few dollars our way here at our YouCaring campaign.