Here’s the problem with writing about having a brain tumor. It’s been done before, again, again, and again.

And all of the brain tumor books are really the same. (Rather like romance novels but that’s another subject entirely.)

So, here is the standard brain tumor book.

I was living my life (happily)(unhappily)(fulfilled or not) with my (spouse/partner/children/animals) and generally felt (good/not good) about “where I was”. I never suspected I would have a brain tumor until (insert here a predictable story of symptoms and eventual diagnosis).

The doctors decided to remove the tumor (or follow some other kind of treatment options). (Insert here some semi-gory details of the treatment). I have recovered with a new view of life. (Insert here some recovery anecdotes.)

I have a new appreciation of everything. I have (made a list of all I still want to do)(changed careers)(given my life to good causes). I realize that time is short.

I then encourage everyone to savor each day because my profound experience tells me we don’t do that enough.

Spit-spot, you have a brain tumor book.  But this reductio ad absurdum outline is cruel and ignores the mental screaming that is a giant part of this experience.

As with many experiences, recovery from a Traumatic Brain Injury (TBI) can only be appreciated when viewed through the rear view mirror. While you are driving through it, there is too much happening, too many scary things, too many silly moments – it is only in the quiet, months later, you begin to put it in a frame.

I think that, as your brain knits itself back together from the rude assault of injury or illness, it has to develop a “story” that you can tell yourself and others to explain what has happened to you. I believe the stories are simplified, edited for others (and for yourself) to be comfortable with what has happened. I think we tell less of the truth, and these scary margins are ultimately forgotten because they are just too frightening to remember.

And so, I’m writing this brain tumor book, but I’m trying to remember the margins – what it was like to be on the edge of the experience – no net, no rails, no soft place to fall.

 

"The Scream" by Munch

And so it begins.

My brain tumor saga really began in October of 2012, when my walking partner noticed my left arm wasn’t swinging naturally and sometimes I would drag my left foot. I saw my lovely regular doctor, he sent me on to a specialist, we were lining up MRIs and such, with none of us really worried about anything. Well, that’s not true, now that I think about it. The neurosurgeon took my symptoms too seriously. He didn’t blow me off, as I hoped he would. He didn’t say, “You silly thing – there’s no reason to worry about this. But we can do this MRI of your head if it will make you feel better.”

No, he was too serious. I should have paid attention.

On Saturday the 13^th, I was in Austin at the Texas OCD conference. I volunteer as the Media Director for the group. I helped set up tables and chairs, noticed I was a little tired, but powered through. Sunday was a family party for my nephew and his wife, returning from Africa after two years as missionaries. I went by myself, and the two-hour drive back was beautiful, as Texas in autumn can be. I noticed how much I enjoyed the drive, with the miles spinning ahead of me.

But then on Tuesday the 16^th, I semi-woke with a terrible pain on the left side of my body; the sensation of being sucked down a giant drain. I tried to scream for my husband, Kenny, who was sleeping beside me, but I could not make a sound.

A silent scream, for all the world like the Edvard Munch painting – and it seemed to go on for a very long time, no doubt made longer by the pain and utter terror in the moment. Then, there was nothing. Which bears some thought. Mostly, when we say “nothing” we are wrong. Even asleep, there is something like a background noise – the sound of our own breathing, the whoosh of heartbeats in our ears (you mean you don’t hear that?), an awareness even in the silence. But this time there was nothing. Nothing at all.

And then it was morning. Birds singing outside, as they will do in the morning. I opened my eyes, and realized that my tongue was swollen up to fill the inside of my mouth. This is a creepy thing, and I cannot recommend it to you. Some blood on the pillow, too, but that’s disgusting. I told Kenny, “ah whink ah eed ta shee dahchtr.” Luckily, we have a precious family doctor – I just drove over when they opened. The receptionist put me in a room, the doctor entered, took a look, and called the ambulance. What?

A word about this doctor’s office. When you go there for regular things, it’s rather like a cozy living room. Coffee machine, comfy couches, old magazines and Highlights for the children. The pace is efficient, but friendly, I would even say almost chatty. However, when you go there and something emergent is happening, it’s like somebody blew an alarm. The staff drops into a different gear, my friendly doctor starts snapping orders – this alone is enough to get your attention.

I will spare you details of the rest. It’s a blur, anyway – rolling from one place to another with the continual swoosh of those privacy curtains. By the way, those things are useless, unless you have lost all senses but sight. Pure theatrics, and I suspect part of the reason they are used is because it allows doctors to make a grand entrance at your bedside.

And so, finally, a child posing as a doctor (really, this man could not be older than 14) comes in and says, “Well, we have some good news. You didn’t have a stroke and you didn’t have a heart attack. But we did find a mass on your brain.”

Sudden stop. This is good news? (A quick footnote, when I told my lovely regular doctor that this child needed to be smacked, he explained that they give head scans to most everybody with my symptoms, but it is rare to find something. And my something was HUGE. He said, “You made his day, week, month, and year!”)

From there, everything moved quickly. These people were serious! Lots of tests, earnest conversations, planning, then I was sent home on Thursday for the weekend to return on Sunday to start what I think of as The Process. There is absolutely nothing you can do to get ready to have your brain tumor removed. Nothing meaningful, anyway.

On Saturday I decided to take matters into my own hands and get a short haircut. Foolishness. It wasn’t even all that short. Denial is a powerful natural force. I believe you can use “denial” to explain all of the small events of our lives, and most of the large ones. Denial shapes history and love affairs, property purchases and what we order off the menu.

However, that weekend I did decide that I would spend all of my energy while in the hospital on being adorable. I would be cheerful, funny, supportive…almost enthusiastic.  I would radiate charm, loving acceptance, and strength. In short, I would MAKE THEM LOVE ME. I would like to say I made this choice to make it easier for the staff to do what had to be done. I would even like to say I made this choice to make it easier for my family to bear what was ahead. I would be a liar. I made this conscious, calculated choice with the thought that maybe they would be less likely to kill me if they liked me. I am not proud of this. I wish I could claim a higher motive for my alarming enthusiasm and cheerfulness. It was a very long weekend.