My Brain Stopped Working. It’s Terrifying.

Two weeks ago I could no longer walk down stairs. I tried. But it took repeated efforts just to make it up one step. My mind couldn’t figure out where the step was. I managed to make it down the steps by moving very carefully, watching and using my feet to “feel out” where each step began and ended.

Two days ago I tried again, this time with just 3 steps. I couldn’t do it. I needed a friend to carefully support me, half-carrying me. It was terrifying.

I went to the doctor. He did some bloodwork, took tests, scheduled an MRI. But my symptoms got worse. I would not walk without assistance on Sunday.

I went to the ER on Sunday.

They told me it might be something going on in my brain. Two days and several scans later… it’s been confirmed. Something is wrong with my brain.

I’m angry. I’m scared.

I’ve been through cancer twice. Isn’t that enough for the medical lottery? Why do I need sometime wrong with my brain.

Spending time in hospital rooms isn’t my idea of a good time.

I’d rather be hiking mountains — when I lived in Colorado, I hiked 14’ers. I’d rather be playing with my dog and my cat. I love animals. I’d rather be trying a new dance move or playing a role-playing game or creating art.

There is so much I want to do besides sit in a hospital room.

Am I afraid? Not really. At least, not when it comes to pain. Having been through chemo, pain is not a big deal to me. But losing brain function? Nightmare.

I made sure to triple check with the medical care team that they had a do-not-resuscitate in place. I am terrified of being a zombie.

Death itself doesn’t faze me. I’m a two-time cancer survivor. That gives a certain ennui with the intricacies of death.

My worst fear is that I live, not bad enough to be gently killed by a morphine drip. My worst fear is that I am well enough for rounds of surgery, chemo, radiation. The slow death through medical procedures.

The oncologist will tell you that he’s saving your life by an extra few months, which you’ll spend puking out your lungs into a trash bin, too frail for that vacation you wanted to take. But you will buy yourself an extra year.

Is it worth it?

What terrifies me more, death standing up standing proud, or death bent over, lingering, puking?

It’s not necessarily a fair bargain. Some people have chemo and live for decades after. Radiation can be a blip on the horizon.

In my case, though, the choices are more severe.

I have cancer in my brain. In my lungs. It’s spreading.

I will fight it as long and as well as I can. But at some point, I will die.

Right now, until my brain turned against me, my life was pretty good. I was mostly happy.

Now, my life has changed.

I will get brain surgery. I will do physical therapy. I want to restore brain function. Then what?

Do I embark on a course of chemo that will bring me to my knees, knowing the outcome is not several healthy years? Or do I make the decision to live my life on my feet, not my knees?

If I choose that route — death will come quickly. But it can be a beautiful death. I can spend the rest of my life spreading love, joy, art… for however short a period I have left. I won’t cling to life. I will live embrace with you what I have left to me.

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This post was previously published on Shefali O’Hara.

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