August 23, 2014

Lessons From My Brain Tumor. ~ Mary Ann Johnstone

Courtesy of Mary Ann Johnstone, NOT FOR REUSE

“I am dying.” I said.

“No you’re not.” he said.

“Then just please kill me.”
“No.” he shook his head.

“I want to go home.” I begged.
“I know.” he whispered to me again.

After Eric left to finally get some sleep at the Best Western Motel across the street, I watched the second hand of the clock jerk forward all night long. It took months.

I have never felt so rotten and scared in my life. There were wires everywhere, IV lines stuck in both arms, oxygen mask, you name it. There was no “Grey’s Anatomy” chirpy girl-music, only the loud whirring of 10 busy machines next to my head.

Through the glass I watched my nurse’s mouth silently moving all night long. She talked from midnight till five am, shaking her head back and forth. I wondered who would keep listening to someone who was so utterly disappointed in them for so long.

She never noticed my index finger waving for help but every few hours she would breeze in with another IV bag and chastise me for requesting the wrong anti-nausea drug. I couldn’t reply with the mask and the cotton batting covering my mouth and a good portion of my face.

“It didn’t last very long did it?” she’d say, snapping off her blue rubber gloves adding, “I told you so.”  

All I could do was silently agree—the nausea filled every space of my body.

The drug I had requested was designed for patients who couldn’t bear to swallow anything (except their ugly humiliation) and had to be administered as a suppository. The nurses always hated you for it.

Quickly she would scurry from the room on her squeaky sneakers and pop up like a toaster waffle on her side of the window. The phone scolding resumed.

When dawn finally sliced open the sky, the “Inspirational Message” from an unseen priest softly garbled over the loudspeakers. I secretly wished that he or the rabbi or anyone else with some extra hope would just stop on by.

Nothing was working and I was in trouble. My body vibrated badly above the plastic coated mattress and I was dying of thirst. The morning stretched out for a million hot miles.

The ICU swelled with crying families and holy men.

A few weeks after I was home, my mother-in-law called and told me that every day she visited me in the hospital, people were dying in the rooms around me. Luckily I did not know this. I was in my own white box and only heard my machines and the occasional “code blue” over the speakers, and then everyone was gone. Perhaps since I was okay enough to actually ask for help, the staff was where they needed to be.

That was until the thirst and vibrating got too bad.

I couldn’t drink enough water. I was dying from thirst and water poured out of me as fast as I drank it in. My husband kept handing me the filled paper cup as fast as he could, soggy and leaking from overuse, and his mother helped with the bedpan.


It is called “Diabetes Insipidus,” and it occurs when your pituitary gland has been spanked, poked and almost ripped off its stalk during surgery. The surgeons remarked that when they started to remove the tumor “everything caved in” and that “that has never happened before.” My family watched the waiting room monitor as the estimated surgical time changed from three hours to six and a half.

The tumor was over three centimetres, which doesn’t sound big until you see the MRI and how it hogged all the open space where my pituitary used to dangle.

The gland was paper thin and smashed on the ceiling of my skull like a badly tossed pizza crust. Headaches became a daily event and when I almost ran over a man stepping into the crosswalk with a baby stroller, I stopped driving.

Peripheral vision is something you don’t realize you have, until you don’t.

The MRI results, threat of blindness, death and the continuous badgering from my neuroscientist brother took all of the wiggle out of my wiggle room. Surgery was scheduled and my stomach and nerves burned up a storm while we waited out June and half of July for insurance clearances.

During this interminable month and a half I found myself expecting some divine miracle to happen. For the tumor to disappear, the test results to be a mistake, a reprieve on the timeline so I could go back to my sweet summer, jogging on the beach with my iPod.

Call it “denial” or “positive thinking,” but even when I lay shivering in my thin, pastel, pre-op surgical gown, I was still expecting someone to show up and tell me it was all a big mistake.

I tried reminding the universe that for years I had been making my very best effort towards well being—drinking acres of spinach, running everyday and practicing meditation—but I completely missed uncovering the big truth and a crucial component to my own happiness.

The Divine turned out not to be some peaceful ray of light or a godly, angel-voice that spoke up and saved my ass. It was a kind of shout that I saw.

The paper cup, the bedpan, the hot meals on my doorstep, the snowdrift of cards, the armloads of flowers, checks for rent, loving phone calls and my normally high-strung, barky chihuahua laying ever so quietly next to me for almost six months straight.

The Divine definitely showed up, but it walked through the door wearing flip-flops and loved me no matter how disgusting and scary things got.

Why I never understood this before is downright embarrassing. Maybe old survival patterns of being an independent loner obscured this obvious truth, but here is what I learned in brain tumor school:

The only thing that matters is love.

In the beginning and especially in the end.
We are sunk without it.

The people and animals who love us, save us.

See the cup, the flowers, the dog.
In them, hear the repeating whisper:
I love you.

Breathing in: I am alive
Breathing out: I smile to myself
~Thich Nhat Hanh



Love elephant and want to go steady?

Sign up for our (curated) daily and weekly newsletters!

Apprentice Editor: Bronwyn Petry / Editor:
Photo: Courtesy of the author.

Read 8 Comments and Reply

Read 8 comments and reply

Top Contributors Latest

Mary Ann Johnstone