Recovery is a fickle bitch. Sometimes you are allowed to heal while sometimes you find yourself laid up in complications.
It’s also lonely. Not in the sense that no one is around you, I mean in the days after surgeries the texts and calls wane so you can have your “peace” or “space” or whatever your loving friends hope is the best way to help you, but you also have lots that visit, many that send stuff, and then of course there’s your family that circles you constantly letting your isolation seem confused by the fact that they are always around. It’s lonely in the way that everything you say is analyzed as the words of a sick person, responses are often optimistic promises of a tomorrow that you’re either not ready to hear or find the privilege of disheartening. It’s lonely in the sense that no matter how amazing your friends and family are (MINE ARE AMAZING) there’s only so much that they can do, and so much I can do. So you resign yourself to watching Netflix or a slow walk around the kitchen. Hoping you’re striking the balance the nurses insisted on between rest and movement. It’s lonely because few can relate so you find yourself in constant communication with the people who’ve been to all your surgeries and the brain tumor folks online, sometimes people you’ve never met but often thought of. And it’s just hard. It’s tiresome. It’s lonely. You look at the flowers you’ve been sent and you smile and you read and re read all the nice messages and still struggle to know what to say back and then you sit. And sit. And sit.
Do some work. That’s what I have been telling myself. Ok, when I feel a bit better. I’m busy sitting and struggling to understand my lackluster desire to sit.
Go for a walk, get some fresh air, take the pup. Ok, I will but I am busy watching Netflix, they might expire my show.
My laziness confounds and frustrates me and it’s the healthy people who remind me that any way I recover is ok, and they tell me to take my time and that I deserve to watch a good show. I love those people, they’re everywhere, my family and friends and I love them.
But my entitlement frustrates and angers me, I deserve it?! I don’t deserve anything. I feel bad anytime anyone brings me anything and it’s not right, they have to go back.
Mom: do you need anything?
Me: some ice and a ginger ale.
Mom returns with a cup of ice and ginger ale.
Me: oh, I meant an ice pack.
My inner monologue: “shut up you entitled brat, she just brought you ginger ale.”
I have to remind myself to accept kindness with kindness and humility. I also remind myself that it’s ok not to be able to hop out of bed and grab your own ice pack, if you could you probably wouldn’t need an ice pack.
And as people return to their daily activities my bitterness (and funniness) grows into a depressing cloud that threatens to crush me if I don’t suspend my disbelief that I am here and embrace the fictional narratives of the latest show I am watching. I become jealous of people doing things, going to work, going out, talking about the Patriots saggy balls, all of it, I want to do that, but I can’t because I am here knee deep in this.
It’s so fucking annoying.
And I get sad and I miss people.
So I’m knee deep in that depressing thought process as I go to put my PJS on Friday night and as I bent over and reached down to pull my pants up a splash of water hits my hand. Bluuuuuuurrrrgggggggg. Nooooooooo! That is not more CSF all up in my business. I’d been ignoring the taste of it down my throat all day anyway, but this proof, it conflated me. My brother had told me not to fixate so I assumed it was just me and went to bed. Throughout the night I woke up choking on the drainage constantly pouring down my throat. If this was a leak it was faster and more aggressive than any other I’d had.
By four am when, without bending over, I found myself drowning in liquid, soaking my pillow coming from my nose I decided I needed help. I called my on call doctor in Arizona.
“Can you come in?” He asked.
“I mean I would but I sort of live in Colorado” I replied.
“You had surgery and a leak repair here already, right?” He replied.
“Yes.” I mumbled.
“And it’s coming out of your nose?” It was almost more of a statement than a question.
“Yes.” I said this as I stroked my hand through the non surgically impacted side of my hair.
“I’m sorry.” He told me.
I’m sorry too.
He told me to go to the ER, I told him my neurosurgeon lived down the street, could I just wait until a more reasonable time and see my neighbor.
He told me to go to the ER.
So I bent over to put my pants on, and there it came, glistening in the light of the early morning, that bitch cousin of Herbert’s, Flo. I cannot express how much I hate her.
My parents got ready in a flash and we all drove to the ER at my neurosurgeons hospital. We got there around 6 am. About five hours in I realized it had been five hours and I implored my parents to get themselves food. An overzealous neurosurgical resident had already told me that I need ENT surgery and that I’m “not a neurosurgical patient anymore.” That made me nervous so I asked him to just call my doctor please. He’s not working? Shoot, call him anyway. I think that call saved me from a needless emergency ENT surgery that would not have fixed the problem and forced me to have my ear taken off again.
Uh, No. No one is taking my ear off again.
But I knew just in case he was right I shouldn’t eat. My parents had some breakfast burritos, awkwardly eating them as I stared at them and waited to hear if some ENT would waltz in like he owned he place and try to jack up my ear again.
I waited and waited, and luckily the guy that told me that an ear surgery would happen made the call he promised to make, and my neurosurgeon stopped that nonsense in its tracks.
But they still wouldn’t let me eat just in case.
By this point my family has found out and my sister and her kids and family have lovingly descended on the ER. They snacked on jerky and power bars and I thought, God what I wouldn’t do for a sandwich.
I asked anyone and everyone who looked mildly like a doctor if I could have a sandwich.
“You’re NPO” everyone told me, nothing by mouth. I told them NPO didn’t make sense it should be NBM. The mumbled something about it being Latin.
Kiss my ass with Latin, I want a sandwich!
I had a long MRI with a gruff attendant and my hunger, pain and general anxiety almost caused me to puke in the machine. I missed the guy in Arizona that did my post-op MRI, he was gentle and kind and talked me through it. This lady made me feel all alone in a fun house. I was disoriented and imagining things. It was rough. They then put me back in my ER bed and left me in the hallway not telling me that someone would come get me. I was scared and lonely, and pretty much naked in a basement hallway of a hospital. I thought back to my time in Uganda, to the patients they wouldn’t help, the ones they left in the hallways in beds, forsaken and dehumanized. I knew my privilege and luck would mean someone would come for me and I quietly sent whatever good thoughts I could muster to the men and women I met that day in Africa. And then I sat there in fear reading my tattoos and trying to channel the laughter and fearlessness they are trying to ignite. I did this as the guy in a distant office talked about how good his lunch was.
“I hate it here.” I thought to myself.
They took me up to the neurosciences floor and gave me some Tylenol after some begging, but no sandwiches.
I asked everyone for sandwiches.
No one had sandwiches, but there was talk of shunts and IV fluids and surgeries and consults.
No, no, no.
Not until I have had a sandwich.
Finally I saw a familiar face pop in and my neurosurg had come, from his home, on a weekend, and he reviewed my scans.
As he walked in he looked at my with empathetic eyes. “How are you?”
“I’m ok,” I said through a nervous mix of tears and laughter, “but I could really use a sandwich.”
He laughed and then got down to business explaining he didn’t think a shunt was right (thank god) and telling me where the leak was and that he or Dr. Spetzler could easily fix it, he acknowledged I’d had my fair share of surgeries and it wasn’t right, but he hoped after this one I’d be “okay.”
He told me I could go home from the hospital, and schedule it so it was less of a harrowing ordeal.
Really?! After 20 hours of no food and 12 in the hospital I can just go?
And he said I could have a sandwich.
So I ordered a hospital sandwich as I waited for CT Scans and discharge instructions and even though I couldn’t get my tired jaw around that thing, I have never been more happy to see a sandwich in my whole life.
I ate it like it was my last meal.
So now I’m home (at my parents house) and I long for my life back, but I wait, for someone to call to tell me my fate, aka when I get to have surgery no. 5.
5th times the charm.
Peace and love,
PS thanks for all the love.