Personal growth in a story I didn’t want to tell.

In September 2016, when I realized my short-term disability leave was going to be long-term, I knew it was a gift from the universe and I couldn’t blow it again.

The gift was time—time to finish the memoir I began over 15 years ago.

When I started writing, I told the story of my son’s childhood brain tumor, which he and I both survived. Our saga had more twists and turns than a whodunit novel; if it was fiction, it would be unbelievable.

Then I stopped writing because parenting a son with brain trauma leaves little energy for anything else.

After two decades, with my recent gift of time, the memoir called and I answered. Below you can read what I wrote then.

But here’s a 2018 update: the story has changed.

It’s not about the brain tumor anymore. Oh, the twists and turns are still there, but the real story is about how poorly suited I was as a woman and a mom to handle the challenge, and how bumbling through the years-long medical drama taught me more about myself than I could have learned in a dozen perfect lifetimes.

That’s my truth. Admitting it—owning up—has been almost as painful as living through it. Personal growth ain’t easy.

And that’s why I persevere. Because truth is the best story.

Maybe I don’t want to tell this story. On writing my memoir.

I shiver intensely in my home office in spite of the portable heater blasting at my side and the sweatshirt hood cinched around my face. But I’m not cold.

I have the beginnings of heartburn and a headache. But I’m not sick.

I’m about to click “open” on the computer folder marked 6500. It looks pretty harmless – it’s only the files we exported years ago from our ancient Power PC. But I know what’s in there.

When it opens, I stare at the screen and put my hands in my lap for a few minutes. There it is – what I was looking for. I click on the folder marked BOOK.

I shake so uncontrollably now it hurts my shoulders.

These are the files that catch my eye:

Chapter 3: Matt’s early years

That was before the whole nightmare began.

I imagine him running through the yard, Sparky – our border collie mutt – chasing after him.

Chapter 5: Dr. W

I picture her round face.

I know her full name like it was yesterday. We liked her so much at first.

Chapter 6: Lorenzo’s Oil

My heart pounds as I see the words in print.I remember sitting at the kitchen table, reading a magazine, discovering the article. It was prophetic. It kept popping up like a bad dream those last few months.

Chapter 11: MRI day

That terrible, wonderful day. The day Matt got another diagnosis, this time the right one.

I close my eyes, put my hands back in my lap. 

Maybe I can’t do this. Maybe I can’t tell this story after all.  

I take a deep breath. 

Maybe I don’t want to tell it.

It’s been so long since I cried about my story, but I cry now. I don’t know where to start – what to open first. I sit and stare at the screen for awhile again. I’m afraid to go deeper.

Finally, I pick a file, click, and get this message:

Adobe Acrobat Reader DC could not open ‘chap 2’ because it is either not a supported file type or because the file has been damaged.

Oh shit. Are you kidding me? All this time, and I can’t open my files? I can’t write all this again – I can’t start over.

I try a few more files, but they all produce the same message.  

I hope Michael [my husband] can figure it out, otherwise I’m screwed. 

But a small part of me is relieved for the moment. I took the plunge without having to pierce the murky waters today. Maybe it’s a good place to stop, go make some tea, think about something else.

As I head downstairs, I give thanks that my story ended the way it did. I remind myself that Matthew is alive and healthy, a grown young man now, out on his own.  Every time I see him, I can wrap my arms around him, marvel at his intelligence, laugh at his wit, rejoice in the mundane details of his life.

He got through it.

So will I.

“Riveting. A page-turner,” says my editor.

 Photo courtesy Pixabay. Photo courtesy Pixabay.

My editor emailed this comment to me over a week ago regarding the first section of my memoir manuscript. I should have been thrilled. I was thrilled. I AM thrilled.

So why did it take mo so long to sing my own praises, to toot my own horn? Why am I dragging my feet?

(Don’t worry, I didn’t succumb to cliches in my manuscript, which is perhaps one reason she liked it.)

“I don’t know why,” is the answer, but in writing this, I’ll figure it out. So let me explore:

I’m afraid people won’t believe that she meant it.

There—that’s it. That was pretty simple.

That’s what I love about writing–how putting the letters together to make words to form a sentence to complete a thought pulls my feelings out of my subconscious and splashes them on the page.

And that’s what I hate about writing. Sometimes the splash is confrontational, a tsunami of destruction to my ego. Some of the editing I’ve been doing lately has brought to the surface deep flaws in my character, weaknesses I’m loath to admit.

But I own them. I’m pushing through the squalid waters because that’s how I’ll grow.

Maybe that’s what made my manuscript “riveting” and “a page turner”–it’s my unfiltered truth.

Just for the record, my beta readers finished section 2 of my manuscript last week. Guess what they said?

“A page turner.”

You’d better believe it, folks.

Stuck between a rock wall and a hard place.

 Me VS the rock. Me VS the rock.

When my younger son took up rock climbing a few years ago, I wasn’t entirely supportive. I thought, You couldn’t take up bowling or, I dunno, chess? 

When he talked about climbing, I played my mom card with an occasional gasp and fearful noises. He finally made it clear that my attitude was annoying, so I stopped. I started encouraging him. Eventually, I told him I’d like to try it sometime—indoor climbing, that is.

“Sometime” happened over Christmas. I wanted our family to celebrate the season with shared experiences, not just gifts. I’d have been perfectly happy with tickets to The Nutcracker, but when you’re trying to enlist the enthusiasm of a husband and two grown sons, ballet wouldn’t cut it. Rock climbing would, so that became the plan.

As a certified chicken, this was big. I rarely ride a bike because I’m afraid of falling. And the one time I tried cross-country skiing (because I’m WAY too scared to even consider downhill), I took off my skies to walk down an itty-bitty hill.

As it turned out, indoor rock climbing was much safer and less intimidating than I expected. There are harnesses and safety ropes and a belayer—a fellow climber on the ground—managing it all. It wasn’t a big deal after all; just an itty-bitty deal.

The really big deal happened midway up the rock on my second climb. I accidentally banged my knee on the rock. Not hard, but wow. Do knees have funny bones? If so, they’re not funny. The pain took my breath away and my whole leg shook for minutes afterward.

I couldn’t even yell down to tell my belayer why I wasn’t moving. All I could do was to hold on and wait for it to pass. That’s not exertion on my face, BTW, it’s pain.

My body was momentarily paralyzed but my mind was busy.

I can’t do it. My leg won’t hold me. I’m going to have to come down. I’ll have to quit.

I felt so defeated. It was another family outing ruined.

Just a few days prior, we had reservations for dinner and tickets to a comedy show. It was our “big” Christmas gift to ourselves. But my chronic illness choose that day to tangle and jangle up my insides worse than a knotted rope and we had to cancel our plans.

My guys were supportive, but I was distraught. My year had been full of cancelled plans and ruined experiences, and this one was the pinnacle of ruination. But there was nothing I could do; there was no fighting it. So I pulled myself together, we got take-out, made a fire, and played a board game. We were together. It was Christmas. How could I complain?

Several days later, my chronic illness cooperated and I was psyched to redeem myself with family rock climbing. Until the bang of the knee.

Finally catching my breath, I yelled down that I hurt my knee. My husband asked if I wanted to come down. I said, “I don’t know.”

I pictured letting go, leaning back and rapelling down. I pictured me standing on the floor below, having quit.

I didn’t want to be that me. I didn’t want to be her. Again.

I was literally stuck between a rock and a hard place. The hard place was defeat.

Something within me decided that this time, defeat was not acceptable. I don’t always have control over my chronic illness, but I knew I had control over a banged knee.

Waiting until my leg stopped shaking, I yelled down, “OK, you got me, Steve?”

I took a tentative step up to another foothold. Then another. And another. It was hard, and it hurt, but I did it. When I reached the pinnacle, I slapped the top of that fake rock like I had climbed Mt. Everest.

It felt so good, my chest swelled with pride as it heaved with breathlessness. I almost started crying with joy and relief right there, but I sucked the tears back in because nothing would have made my son avoid family rock climbing in the future more than a public display of my ugly cry. “Leaky faucet,” he used to call me.

Call me what you want. I was a winner that day.

I beat the rock and the hard place.

When so much of my life is beyond my control, that opportunity to conquer defeat was priceless. With my ego and my psyche so fragile, I needed that win.

My adventure reminded me that I have the wisdom to know when not to fight—when I need to let go, to breathe, to just be.

And just as importantly, it taught me that I have the wisdom to know when to fight like hell.

And when I do fight, I’m a warrior.