floorboards

A farmer is sitting on his porch in a chair, hanging out with his dog. A friend walks up to the porch to say hello, and hears an awful yelping, squealing sound coming from the dog.“What’s the matter with Ol’ Blue?” asks the friend.“He’s layin’ on a nail that’s pokin’ up from the floorboards,” says the farmer. “Why doesn’t he just sit up and get off it?” asks the friend. 

The farmer deliberates on this and replies: “Don’t hurt enough yet.”
(from Amanda Palmer's The Art of Asking)
July 1
Yesterday, I answered the PA’s questions. Models of the brain lined the counter and she took my blood pressure which was too high. I swear I saw sympathy on her face and excused myself to the bathroom to pee and cry before the surgeon came back in.
I have never met with a surgeon before.
I had an appointment with one once to have my gall bladder out, but I never made it that far. I ended up in the back in the ER with pancreatitis instead and whatever surgeon on duty had the privilege of cutting me open a few days later.

He talked in a thick Italian accent about his experience. The risks. Assuring me that it was time. That he is good at this. But there are no promises or guarantees. He did not rush as he explained incisions and ICU and all kinds of other things that were hard to hear. 
I stared at his hands while he talked and hoped they were steady and strong.
I fought the urge to cry again in the parking garage, partly from the intensity and partly because I had no idea where I had parked. It felt a little vain. Or silly. Me being my usual overdramatic self.
There is nothing life threatening here. No tumors or bleeds or whatever else is bad medical news.
But I still decided to go ahead and let him drill a one inch hole in my head.

I am afraid of doctors and needles and hospitals.
I am afraid of breathing tubes and titanium plates.
I am afraid of the risks. 
Of being part of the 13% that this doesn't help.
Of the things that can go wrong that probably won’t.

But I am also afraid of pain caused by little every day things.
Of the wind
Of the blanket hitting my face.
Of hurting to talk.
Of hurting to smile.
Of hurting to run.
Or swim or kiss or chew or a hundred other things.

I am tired of taking so many pills that I can not keep up with them.
And so I decide that it hurts enough and I choose to get off the floorboards.

The other day I ate with a friend I had not seen for awhile. I filled her in. Trying to say these things lightly. I brushed off her apologies, telling her that everyone has their share of pain management.
That mine, at the moment, is just the obvious physical kind. And that I can keep managing it. Avoiding as much as possible the things that draw it out and make it worse. Or I can do the harder scarier thing which is to try and fix what is causing it. And how that is never easy or without risk. Whatever kind of pain we are talking about.

July 15
Today, I dropped my girl off at dance and headed to the hospital.
I gave the valet my car keys, the registration desk my medical history and enough money to take my family to Disney World probably more than once. I am escorted to Radiology, which unsettling, is right across the hall from a door marked autopsy. I am given an MRI, followed by a catscan, followed by a chest X ray, followed by a urine test, blood work and EKG. I am probably forgetting something but eventually I ended up in a private office with a nurse whose job it was to get more information, run a few more tests and tell me what I needed to know for Monday. She asked me a hundred more questions. She took my temperature, my weight and my blood pressure (which was still way too high). I had to sign form after form assuring no liability if it did not work or if things went wrong. She carefully went over procedures for the day before. Washing at home with the sterile soap she gave me. What meds to take, which ones to skip, when to stop eating and how much hair they were likely to shave.

Then it was my turn to ask questions.
How long would the procedure take?
Who would talk to my husband?
How long would I be on a ventilator?
When would I wake up?
When will I be able to talk?
When would my family be able to see me?
How bad would it hurt?

Most of her answers were “it depends.”

She was patient. She knew that I was on the verge of crying on her. I wanted her to ignore this fact. To pretend I was not on the edge.
Instead she looked me in the eye. Hard.
She asked if I had kids.
At this point I could only nod.
“10 and 6”, I eventually stammered while looking at the floor.
“Me too” she says. “And a 3 year old.”
“Don’t let them see you in ICU”, she advises, "they'll let them in, but I wouldn't."
“I have no intention of having either of them within a 200 mile radius of ICU.”I tell her.
I try to laugh, to banter, to make this casual and nothing.
She keeps looking me in the eye.
I keep staring at the floor.
I appreciate her kindness. I really do.
I just don’t want it.
I don’t want this strange nurse to see all my fear.
I feel exposed and seen through, more than the MRI.
I don’t want her or anyone else to try and make me feel better.
I don’t want to be in this fucking hard plastic chair with a hospital band on my wrist, my arms bandaged and one vein already completely blown.
I want to be at the pool, or beach, or even just on my couch. The dentist. A workshop. WalMart. Anywhere. Else.

She gives me more instructions and assurances. I must be in bad shape because she even gets personal, telling me a story of her own. About knowing this fear. About hearing all these details but not being able to listen or process. I tell her I better write a few things down, ones that aren’t on the handout she gave me. She does this for me, and calls my doctor, so I don’t have to. She even puts reminders on my phone. Probably because my hands are shaking. I let her and am glad but am in other ways embarrassed at how much I need this help. From a nurse whose name I can’t even remember.

She leads me down another hall. To see another doctor. Who listens, pushes, pokes and prods and pours over my lab results and EKG printouts.
He deems me healthy enough for surgery and wishes me luck.
He is gone before I can find my way out of the winding hallways.
Gone before I can find my breath or my valet slip.
I went home and slept for hours.
Exhausted from hallways and needles.

July 17
I thought I would get it all done before Monday.
But there is just too much, even with a community of help.
Of friends who take my kids to the pool or the train.
Of food that shows up at my door when I am too tired to cook or unpack another box. Of friends who pack and unpack while I hammer away on my keyboard, or read another journal article. There is even help with that. All for which I am uncomfortably thankful.

I don’t know what to do with this need.
I will post all kinds of ridiculously embarrassing moments on Facebook.
I will write blog posts about wetting my pants.
But I am reluctant to share this, even though it is not a secret.
It just feels like too much asking and too many questions to answer.
I have heard that you are not supposed to write from the pain, but from the scar.
Maybe I am waiting on that.  A raised line down the left side of my skull behind my ear snaking down to the nape of my neck. I want to keep this hidden until it is better.  Until it is fixed. Until I am out of hospital beds and back on my couch watching TV. When you say brain surgery people react. And I usually try again to make a joke or act casual. I want to reassure myself and everyone reading this that I will be fine. That in a few days…I’ll have this cool scar and metal plate in my head and a prescription for some of the best medicine you can buy. That my pain will be gone and I have a doctor’s note to not do housework for a month or work out for three. And I have to believe that is true.

Every time I start to freak out I remember that I am choosing this.
That I don’t have to do it.
But. I. do.
I need to get up off the floorboards.
And I need help doing it.
I need friends that show up at my door.
I need nurses that look me in the eye.
I need prayers from anyone willing to say them.





and because I really don't want to answer a million questions...if you want to know what or how click on these..
what:trigeminal neuralgia
how: surgery


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