Week One. One Week.

A lengthy snippet from my surgery and recovery journal.

Surgery day. Day one.

Before leaving for the hospital at 4:45 am, I wake my mom in the guest room and ask her to come to our bed. My daughter has been snuggled in since around two, after tears and fears about the surgery were spilled at bedtime.

But I don’t want to be without you.
Are you scared?
Who will give me tickles?
What part of this could be fatal?

And then, What if you get all the attention and no one plays with me?

Such good, heartfelt questions. My heart aches with love and pride, with wanting to keep all of us safe.

I give her words of both honesty and courage. No part of this is fatal. Dad is pretty good with the tickles. I don’t want to be without you either. Yes, I am scared. Just like you, I’ve never done anything like this. But we’re going to be stronger, together.

I have slept little. I want to feel more grounded and strong than I do. It’s not so much the surgery—the admittedly terrifying notion of my skull being sawed open, of small tools touching brain, the “not insignificant” risk of stroke—that scares me. I know I will get through it. It’s the vast unknown up ahead.

The fact that while this surgery is the only real treatment for the condition I have, it is an imperfect treatment. It comes with risks and unknowns. It’s just the lousy deal, and I’ve chosen to take it on. I’ve chosen to believe in healing and in a future that will be better than before.

But what if I’m wrong? Not just for me and the life I want to live, but for this child who, by the incredible grace of all things, wants and needs me. I sit for a few minutes of meditation in the dark, pulling my big puppy onto my lap. I pray to be infused with trust. Heading to the car a few minutes later, I fist bump my husband and say, “Let’s do this.”

The basement of the hospital is a beige blur, and I occupy myself with thoughts of how this color scheme and lighting design may have been part of an actual plan. I think of several shades of blue that would seem suited to the environment but wonder if color provokes too many varied opinions. Maybe you either love Brittany Blue or you hate it, but no one thinks too much about beige. I tell one of the nurses I think she and her team deserve a paint upgrade, and it’s not clear whether or not she agrees.

My husband has been abruptly left in the waiting room but I’m told he will come back before I go to the operating room. I text him, let’s not cry. But as soon as the most official of the nurses comes to talk to me, one who will be part of the surgery itself, I’m choking on ugly tears. I remind myself that tears release cortisol and that this is not just ok but good, productive. This is my body wisely taking care of itself. But still, I am desperate to pull it together. I make the mistake of snapping a selfie.

I ask about the potential for tequila shots, and this gets a mild chuckle from the nurse. I had thought I might refuse any offer of anti-anxiety meds out of a desire to “be more present” with the process but ha ha, nice one. I’m told I’ll be given something to take the edge off but that I first need to remain coherent to speak with the surgical team. I think you don’t know me and my capacity for over-riding relaxation, but keep it to myself. Instead I perk up at the mention of receiving some fentanyl later on and tell the nurse how impressed my kid, a huge Prince fan, will be, clearly not realizing that I should stop talking.

Then everything is moving quickly and they are about to move me and I say “how about that tequila” and they say “now” presenting a syringe, and then I say hopefully something brave to my husband and I’m being carted off down the hall.

The OR is smaller than I imagined with all kinds of gadgets (wrong word, instruments?) hanging from the ceiling. It looks both highly technical and perhaps not quite technical enough. I wonder if, like the beige design motif, it might be a touch out of date. The nurses are busily milling around me saying things that feel like check lists, which I take as a good sign. I use my last moment of consciousness to wonder if I will at any point in this operation be naked, and wake up many hours later to a masked nurse loudly asking me my name.

Day Two

I’ve been in the neuro ICU since surgery which means being woken up every hour to test my brain. Before long, I’m pushing my face and mouth through the checklist—name, where are you, why are you here, raise eyebrows, smile, tongue out…—without waiting for the prompts. I can’t tell if I’m already being a bad patient or if maybe they appreciate the shortcut.

At some point in the night I’ve received a roommate and it seems like so many nurses shout at him to wake up. He is sent for an MRI and CT scan of his brain and while I’m so glad it’s not me, I pray he’s ok. A nurse comes to apologize for the noise and bright lights and asks if I want ear plugs but one of my ears is already plugged so I ask for one of my ear buds to try some mellow music, my silk eye pillow, and a breath mint. I am propped up on pillows with stuffed animals and more pillows from home encircling my neck and head, like some kind of strung-out Disney queen. I settle into this awkward nest, trying not to move the tubes and needles criss-crossing my skin.

In the morning my husband, mom, and best friend come to visit. They tell me I look good, that there’s even some color in my cheeks. My head is wrapped tightly in a bandage to suppress swelling and my eyes don’t feel quite focused so I doubt it, but all I can think of is brushing my teeth.

The nurse comes to get me out of bed and I think how, why. I’m so dizzy I’m afraid of throwing up. She talks about removing the catheter and how I will need to walk down the hall to use the shared bathroom and I wonder if I’ve landed in a cheap youth hostel instead of one of the country’s leading teaching hospitals.

We start by sitting in a chair, which feels better on my back but that’s about it. When I stand to get back in bed, the scene is put on pause. I come to with my vision crowded by several sets of legs around my body and a room full of busy voices. My blood pressure has dropped to 61/43 and I’ve fainted, but a very tall, upbeat bald man with BLACK LIVES MATTER emblazoned across his mask says, “This is ok, you’re ok. Everything is fine.” He seems to be in charge and I like him immediately. I imagine him being a good dad, solid friend. I get back into bed and begin vomiting up the orange juice that had previously seemed like such a healthy, refreshing idea.

When the surgical resident in charge of my case (wrong word, my body? my situation?) comes to visit, she says something about moving discharge to Thursday at the earliest. It’s Tuesday. I can’t imagine going home but still, I feel like I’ve failed. My husband sees my fear and disappointment, and stays late that night to keep me company. He taps away quietly on his laptop while I drift off to sleep, and then slips out the door for home.

A sweetest hospital check-in note from my kid.

Day Three

Occupational therapy arrives around the same time as my mom and best friend. It’s time to get back up. I don’t want to, but I want to. I have to pee and the catheter is gone and I don’t need the humiliation, not to mention the additional plastic waste, of a bedside commode so here we go.

I make my way down the hall, hang left, left again. There is no way the flimsy gown is covering my butt but dizziness and nausea are ever-present despite the meds so, no multi-tasking. Hands on the walker, eyes on the road. I consider the stupid luxury of every human being on the planet walking down the street with their eyes glued to their phone.

I finish a full lap, stopping to use the bathroom and practice stepping up and down a single stair along the way. Apparently this is great progress because when the doctor comes in a short while later, she says she’s reconsidering discharge. We will wait for a full PT evaluation and to see how I feel, but maybe as early as this afternoon.

And just like that, I’m winning. I drink water and eat as much as my body will tolerate (not much) and wash my face and apply cream. Even though I feel spent and diminished, like a wrinkled bird unable to fly, I imagine loosening every nerve ending and muscle of my body, opening up to let the light pour in.

Days Four, Five, Six…

Home. I made it out, after all, on day three. I’ve ridden in the car, slept in my own bed, kissed my kid and the puppy and smelled the fresh air out my windows facing west.

The dog is too excited to see me and keeps getting in trouble for trying to be too close.  He eventually settles into a sweet caretaker rhythm, glued to my side as I navigate the walker in laps around the house, and then wriggling in to rest his big head on my shoulder or belly or thigh.

Pax the helper puppy in for a nap. 💛

My not-quite-nine-year old child is an amazement. Tender and thoughtful, more calm than I could have imagined, at least momentarily happy just to snuggle on the couch. When my husband snips my bandage, relieving the vice grip of tension around my brain, neither of them cringe, as expected, at the horseshoe of staples dotting my scalp from temple to ear.

I am so glad to be out of the hospital and also see how different being that kind of patient was to this. Not so many choices. No personal dynamics. Different needs and expectations around both autonomy and care.

I feel guilty and frankly surprised that I grow irritable and impatient while I’m also so needy, not being able to shower, leave the house, or even pour a glass of water without help. I’ve been accused of having some control issues (likely true), but also at this point in life, isn’t life itself a control issue? Aren’t we all, quite fortunately, accustomed to doing things our way?

I’m also amazed and so grateful to receive this much help. My mom, in her mid 80s, does so much with so much energy it’s an embarrassment. My best friend and husband juggle the dog walking, kid driving, the various social, practical, and financial needs. I fall into thinking, man am I going to owe them, which feels like perhaps a nice thing to consider but also perhaps not the way it’s supposed to go. I don’t think we’re supposed to be measuring, adding up and subtracting points as if playing a barroom game of billiards. But honestly, I don’t know how it goes.

For my part, I walk around the house as much as I can and try to stay hydrated. I fall asleep without much warning twice a day and have vivid, intense dreams. I take anti-nausea meds around the clock, mostly in effort to pump up my appetite. I’m worried about my body slipping away. My sense of smell is through the roof. I smell everyone’s breath, the tired pillow case, waves of a pungent chemical perhaps used during surgery. I google “smell after craniotomy” and do my best to indulge any cravings, from lentils to chicken mole to pasta with red sauce, often forcing a meal over the hump of nausea which inevitably returns by the time food arrives.

Day Seven

I lose the stronger pain meds and walker. Holding my husband’s hand, I walk halfway down the block. Nausea subsides. Having grown cocky about my body’s longstanding peristaltic finesse, I make the dire mistake of stopping the senna, and my body makes the mental note to never, ever be so arrogant again.

Day Eight

One week out from surgery and the day dawns new. I feel energized and more clear so I sit at the dining room table to write and then task: pay some bills, email the accountant, order groceries online. I feel driven and relieved to be doing something normal and productive, but everything also takes longer. One hour to send a text update to friends. My brain tries to tell me this may be too much, but I remind it that doing things also feels good. People have said of my recovery what people say of recovery, things like “give it your all!” As my brain grows increasingly fuzzy and dull, I realize that “all” may involve action and it may also involve the wisdom of restraint. Only I can tell, and I will have to learn.

By the time I land on the couch, my nervous system is stuck in overdrive. I actually sense it as a distant living thing floating ghostlike above my head. I think I’m not tired, that I can’t rest. I want to pick up a book or listen to something funny or inspiring but my ears can’t actually handle any sound and my brain is now calling the shots: temporarily closed. I have no choice but to lie still and breathe.

I feel the phantom life force drop into my body like a car downshifting on a slick, steep grade. I’m amazed it knows how to do this, clearly without much guidance from me. Within minutes, my body feels buzzy and also weighted and calm. It feels good, like healing, or like I’m on some good drugs. While busily hovering outside my body for the past few hours, I hadn’t realized just how bad my head feels, but now I feel it all, the pulsing and pulling and my hearing is a mess, both muffled and loud, like I’m at the far end of a tunnel with the world shouting its noises through a megaphone.

Tears spill down my face but it’s not like I’m doing the crying, the crying is just happening. My mom approaches and says, “Leave you be?” and I say, “yes please.” I say, “I think it’s just energy moving. Stress getting out.” She says, “and maybe also grief.” I google “crying after craniotomy” but don’t bother with the answer. I sleep for two hours.

Day Nine

The night was bad with little sleep. I feel wrecked. Shipwrecked. Marooned in a loud, lopsided bubble of a head. Some of the pre-surgery symptoms have improved or disappeared, namely the throbbing of my heartbeat and footsteps inside my head. But others, like the sound of my own voice as well as the outside world, are amplified, much worse. I know better than…have been trying not to even think about it. I am recovering from a surgical blow to my ear and brain. Of course it will take time to know where and how this lands.

But today the lack of sleep has stripped me of both optimism and rational thought. I am a mess. It is also my 19th wedding anniversary. Hoo-ray for us.

My head aches in a way that regular meds won’t touch and I suppose that’s a good thing because I’m seeing the surgeon for my first check-in, and hopefully removal of the staples. I don’t want to see him like this but this is all I’ve got, maybe less.

Feeling shitty but headed to the doctor for staple removal, earrings on. 🤩

When I describe my progress and symptoms to the surgical resident she nods approvingly at first, but then also says something about how we know the surgery isn’t 100% reliable for certain symptoms and blah blah blah I tune out, look away. I want to say, Look lady, do not even.

I try again, with something along the lines that I’m hoping this hearing situation isn’t my new normal. I want to tell her of all the people rooting for me, all the costs to my family, all the care invested on my behalf. She says, “Oh we aren’t even close to a new baseline yet. It could take weeks.” I immediately like her again, and am willing, however painfully, to hear what she has to say.

She remarks that my incision has healed beautifully and begins removing the staples from my skull. My husband scoots in close and asks if I want his hand. I say no. Today I am equal measures floppy, dead fish and pure grit, and I’m also worried he might pass out.

But he’s strong and I’m strong and it doesn’t really hurt and I’m mostly wishing I’d asked him to take a few pictures. I’m lying on my back and even in today’s diminished state, my beauty-seeking mind imagines the removed staples in a small cluster at the shoulder of my purple sweatshirt as a vision meaningful and pretty. I imagine her delicately wielding the kind of bulky staple removal claw you get at Office Max that never seems to get the staple on the first grab, but of course she’s got a real one, something better.

When the official surgeon, who apparently did perform the “critical parts” of the surgery according to the report I will later read, enters the room, he does so saying, “Well if you tell me you’re feeling lousy, I’ll say you’re right on track.” And for an instant I like him better, too. He tells me that this is not a straight uphill recovery but more ups and downs. He says that good days can be followed by less-good days. He says other things, like come back in six weeks for a hearing test, but this first thing is all I need to know. I still feel physically terrible, my head now throbbing, but I can feel my thinking, my grip, my orientation to being in this and being patient and staying positive, return.

In the days to come, my mom will leave and this will be both necessary and hard. We will be changed. I will continue to marvel at the love notes and food and gifts that arrive, the kindness and care of neighbors and friends.

I’ll start physical therapy, and then acupuncture, and challenge myself to do a little bit more, walk a little bit further every day. I will cook my first simple dinner and return to packing lunches and snuggling with my kid in bed. I will still need to nap daily and when I don’t, I will feel like a resentful toddler, with the whole upside down world gone wrong.

The roaring tinnitus in my left ear will be replaced by an intermittent, metronome-like ticking that will grate on my nerves and trust. My hearing will remain lopsided and muffled, too quiet and too loud, and this will make me feel better alone. When I lie on my right side, it will be like the best kind of ear plugs and help me sleep. My husband and I will bicker, both pressed to new ends, and also have a dinner date in the car looking out at the beach. I will sometimes feel edgy or sad, but I will also be happy to feel more functional, and I will not be lonely or bored. I will remind myself it’s too soon to tell.

I will think about the word “healing” and how it seems to be taken as something soft, all angels and whistling flutes. But the only thing soft about healing is surrender, and even that is more deep dive off a rocky cliff. Outside of the adoption process, which forced me to trust in a human being I couldn’t yet see, healing may be the bravest thing I’ve done. It’s good days followed by much less-good days. It’s trying hard and also trying less, really just minute by minute, tip toeing or maybe lunging on the path. It’s a mindset, it’s meditation and positive thinking and it’s feeling like shit. It’s feeling like there’s this whole other world out beyond you, and also this one growing inside you, and it’s nowhere to go but right here and right now, the truth.

xo,
Christa