Guided by the Fugawi

Sometimes a title for a book or essay smacks you in the face as you write it, or shortly after you complete it. But more often than not, you agonize over it for days, weeks, months, sometimes more.

I was writing a piece about how and why I started writing my memoir about recovery from brain injury: “But My Brain Had Other Ideas: A Memoir of Recovery from Brain Injury.”

Coming out of my third brain surgery, I was lost—nothing made sense. About to take my first step on a journey to recovery, I had no idea which way to go. I was an alien in a strange land, without a map or compass.

flickr--Ronni Macdolnald

flickr--Ronni Macdolnald

I searched high and low, through books and on the internet. I found plenty about brain injury, from crisis to short term recovery. Most were written by caregivers or medical professionals. Only a few mentioned long-term recovery, and that only in passing. I needed a guide from an insider, a survivor, for the years to come.

I decided to create my own compass—I decided to write a memoir.

And that’s what the piece was about—how I came to write my book.

My writing title for the piece was “Compass,” but it wouldn’t do for a final title. It was too… too boring? It just didn’t work. A friend suggested “Maps and Compasses,” which I didn’t like. But it did suggest a whole slew of other ideas, such as “Cartography 101,” “Navigating Without a Compass,” and “Mapping Without Landmarks.” But they all felt wrong.

At that point, my thoughts veered off path. Perhaps a pun: “Misguided.”

Finally, losing patience with myself, it came to me, “Guided by the Fugawi.”

I knew it wouldn’t work for the piece I’d written, but it was too good to waste.

So here it is.

Note: I case you’re curious about the name Fugawi, check out https://www.fugawi.com/fugawi

Applications

I should have known better. Why did I agree?

I don’t think well on my feet. I should know how to handle it by now. Why don’t I take time to think before I make a choice, before I commit myself?

I’ve learnt to compensate for so many of my losses. Why is this one so difficult for me? Probably because it’s self defeating in nature. Thinking to ask for time to think—that takes quick thinking, which I’m not good at anymore. I can do it within some contexts but in too many cases, I get flustered. Having to choose between complying and confronting causes me stress, which keeps me off balance. And I forget to listen to my instincts--I make the wrong choice, a choice that is detrimental to my health.

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It happens a lot at work. I start a discussion about a particular aspect of my job. Then as I down, I get caught off my guard. And my conscience overwhelms my instincts--I find myself yes to to taking on yet another role. Only rarely do I have the wherewithal to refuse.

Another such situation is when my issues with task initiation rear their ugly heads. I know exactly how to cope when that occurs. But again, when it comes down to it, I don’t connect theory and application. Even when I recognize that I’m having trouble starting an activity, which usually doesn’t happen, I forget to apply the coping strategy. I should block off time in my calendar to work on the task. But initiating that action stands in my way. I know I’ll do it, shortly, just not right now. I’ll get to it when I finish what I am currently doing—I will, I know I will, with absolute certainty.

Organizational skills are another example. I forget to split overwhelmingly involved undertakings into manageable chunks. I also forget to write reminders, lest I forget.

Back in the early days of recovery, I read that eventually, with practice, compensation techniques will come naturally, to the point where I won’t have to think about applying them. I’ll just do it automatically. But in so many cases, I haven’t reached that point, despite being more than ten years into my recovery, despite more than a decade’s worth of supposed practice.

Will I ever learn?

Inner Shift

I came away from this summer’s writing retreat feeling different, less disappointed in myself. I felt as if something clicked. But what?

Over the last six years or so, my writing coach/editor, Judy, has been running an annual writing retreat for several of her clients. We’re a small group, no more than half a dozen at a time, including Judy. Cindy, Kathy, Wendy, and I have become the nucleus, an inner circle of close friends. Sue used to be a part of the core group, but hasn’t participated in the last two workshops. Every summer we welcome one or two new participants. David one year, Amy another, and Marcie.

Elizabeth was Judy’s latest recruit, attending the last two times. A newcomer, not knowing the drill, she was anxious her first time. But this past summer, knowing what to expect, she was much more relaxed this past summer, she became part of our circle.

During the retreat, we get together every morning for an intense session, where Judy assigns us writing exercises to improve various aspects of our writing. I enjoy some of the exercises more than others. There are always one or two I find I have no love for, like the more visual activities, such as clustering exercise and map making. Though this time around I enjoyed them more than in the past.

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Until this past year, after the second day, my brain was reluctant to cooperate with me, sometimes fully shutting down, no matter how hard I tried to keep up with the group’s pace. At various points, I found myself zoning out, incapable of following Judy’s instructions and lessons.

But this summer was different. This year, though extremely tired three days into the retreat, suffering a horrendous headache during the third day, the bloody brain allowed me to keep up throughout the workshop, except during one of the activities. However hard I tried, I just couldn’t drag myself from the void back to my surroundings.

The rest of the time, I was very much part of the pack—I felt more present, as if there was an inner shift in my mind, as if some piece of a puzzle clicked into place. Thinking back, I realized that I’ve been better grounded in my writing experience during over the past few months.

I experienced several epiphanies during my time at the retreat. Sitting down to write whenever the muse struck me was accessible—I didn’t need to wait until a decent chunk of time came my way. It was okay to write on a whim, a few minutes here and there—a quick haiku, a paragraph, a brief stream of consciousness. I also finally accepted the fact that even when I was on a roll in my writing, there came a point where I had to quit—if I wrote too far into the night, I wasn’t be able to sleep.

Unlike in previous retreats, I was able relax and have fun with my writing—the anxiety over being judged was no more. Though it was nice when my writing evoked reactions such as laughter, visualization, or reflection. I was thrilled when I actually managed to cause utter disgust, as I had hoped.

I’m not sure what changed.

I know I wasn’t better rested than in past retreats—because of a ridiculously packed couple of months prior to the workshop, I was in worse shape coming into it than usual.

Was I further along in my healing, better able to manage my deficits? Had my ability to pace myself become more effective? Was my growth as a writer more evident? Was I more comfortable in my own skin?

 

Way Too Early

Gus was fast asleep when I got up.

A very deep sleep.

A very deep sleep.

I am NOT getting up.

I am NOT getting up.

You're kidding, right?

You're kidding, right?

I'm can't believe you're actually serious.

I'm can't believe you're actually serious.

Fine. I'll get up.

Fine. I'll get up.

But first I need a belly rub.

But first I need a belly rub.

What's the hold up? Let's roll!

What's the hold up? Let's roll!

Blech!

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I pick out the peach colored ones, take a deep breath, then exhale. I place the three pills on my tongue, not too far back neither too far forward. Now the water. I raise the cup to my lips and tilt it towards my mouth just at the right angle. I don’t want to take in too much water, nor too little.

“Shit!” As soon as I the water streams in I know it’s too much.

I hesitate a split second, too long—I shudder and quickly gulp down more water—the water melted the pills. The bitterness spreads, coating the back of my tongue.

Yesterday, I took in too little water and the pills stuck in the back of my throat. The bitterness, stuck in the back of my throat. Water wasn’t enough to wash them down. I stuffed the next two pills into my mouth, raised the cup to my lips, tilted it, and swallowed once, twice, and one more time to wash away all remnants. And a fourth time, just in case.

My anti-seizure meds, peach colored, shield shaped, are the worst tasting pills I have ever taken. More often than not, when I take them, I end up with shudder-worthy bitterness in my mouth, whether I swallow one at a time, or the entire dose at once. Bitter is bitter—it makes sense to just do the whole lot in one go.

I will probably have to take anti-seizure meds the rest of my life.

Jersey Shore

I paused at the bottom or the steps to the beach—nostrils flaring, I inhaled deeply, relishing the salt air as it filled me entire being.

Dad contemplated the watermarks on the wall. “Look how high the water reaches at high tide.” I’d heard the waves pounding at the sea wall the previous evening.

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On our way towards the water line, I paused every so often to admire the well defined tracks I was creating in my wake.

We hesitated when we reached the water—to the left or right, cliffs or fishing boats? I shaded my eyes, looking both ways. “The cliffs look more interesting. We can explore the boats tomorrow.”

Gentle waves lapped at the shore, curved under at the forefront, leaving arcs of foam on the wet sand when they retreated. I glanced behind me—the water softened our footprints as it washed over them, once, twice, three times, until they faded altogether.

Tiny holes—“made by crabs,” Dad said—emitted small bubbles as the ocean drew the water back in. Wondering what happened to those crabs at high tide, I turned towards the sea wall. Dark wet sand faded into white. A few clusters of pockmarked rocks, more sand, and then the wall. A wide expanse of dry scrub grew beyond the wall.

Dad pointed further inland to towers made of what? Stone? Concrete? “German fortifications. From when the Nazis occupied the Channel Islands.”

Tiny silhouettes of a dog and his person ran along the top of the wall. Another dog ran in the scrub, weaving his way between the shrubs.

Dad suggested we explore the tide pools.

We scrambled over the rocks, searching for sea life in the pools. Dad smiled. “We used to do this with Granny. We usually found something, minnows, small crabs.”

The only evidence of life was seaweed swaying in the almost imperceptible current. Dad and I gave up after peering into half a dozen pools.

We trudged back towards the water, our feet sinking into the dry sand. Dad proposed that we head back to the hotel. Loath to end our time together, our easy companionship, I turned towards the cliffs. A black maw caught my eye, the entrance to a cave. “I bet we could climb up to it with no trouble.”

Dad hesitated. He had an odd look to his face. He seemed… reluctant? I was puzzled—the Dad I knew would have been eager to explore further, especially if it involved climbing rocks and investigating a cave. I looked at my watch—we had plenty of time before we had to get back for breakfast.

And then it clicked—he would have trouble with the climb.

I’d forgotten. He was in the advanced stages of macular degeneration—he’d reached the point when he could only see fuzzy shapes, colors and contrasts.

Survival

whether they are merely maimed,

whether they are merely maimed,

It's always a good idea to encourage the traumatized to join support groups.

or gutted.

or gutted.

The walking wounded could also use all the help they can get--trauma is trauma.

Micky Moose is still standing, yet the psychological injuries run deep.

Micky Moose is still standing, yet the psychological injuries run deep.

The same goes for Mr. Lamb.

The same goes for Mr. Lamb.

Unfortunately, there are those who have reached the end of a long tortuous road.

Lambie has fought valiantly. Alas, three-legged and losing more and more stuffing, he has very little time left on this Earth.

Lambie has fought valiantly. Alas, three-legged and losing more and more stuffing, he has very little time left on this Earth.

Indeed, some are too far gone to seek help. Sadly, even CPR, the kiss-of-life, won't undo the damage.

No, not this one either.

Occasionally, it is time to give up hope. Sorry, my friend.

Calculus Revisited

There are days,

Calculus Mustache Day

Calculus Mustache Day

Math Grad Students Fake Mustache Day

Math Grad Students Fake Mustache Day

and there are days:

Calculus Hoodie Day

Calculus Hoodie Day

And then we went for socks. Some were interesting. Others...

Calculus Sock Day

Calculus Sock Day

The teaching assistant couldn't make it to class. So...

The teaching assistant couldn't make it to class. So...

They asked, "Can we have a candy day?"

Calculus Lollipop Day

Calculus Lollipop Day

There were some left over, so math grad students celebrated the day as well. (And I got another.)

There were some left over, so math grad students celebrated the day as well. (And I got another.)

Now what?

Calculus Balloon Day

Calculus Balloon Day

But best of all--Balloon and Gus Day and my birthday!

And the last day of the semester! Woohoo!

And the last day of the semester! Woohoo!

Cookies

When Joan gave me a plate of yummy looking cookies, my immediate thought was “that’s the way the cookie bounces.” I wondered whether that expression meant the same thing as the idioms “that’s the way the cookie crumbles” or “that’s the way the ball bounces.”

According to My English Pages, “that’s the way the cookie crumbles” means, “things don’t always turn out the way we hope.” The Cambridge Dictionary it is “said when something slightly unlucky has happened that could not have been prevented and so must be accepted.” The Urban Dictionary is much more succinct—“shit happens.”

I strongly suspect that the phrase “that’s the way the cookie bounces” does not hold the same meaning as the other two.

I thanked Joan profusely, the cookies looked so good. I was also hungry. Also she went through all that trouble.

I was particularly intrigued by the spherical brown ones. Mum and I used to make ones that looked exactly the same, made of cocoa, flour, and sugar. Sometimes we added walnuts to the mix—tum!. They never lasted long in our household. I couldn’t wait to try one of Joan’s.

As soon as she left, I attacked the saran wrap that covered the plate. It put up a decent fight, but determined, I won.

I raised the largest cookie to my mouth. As I bit into it, my eyes closed in anticipation. My teeth sank into it. The texture was wonderful, somewher between shortbread and—

My eyes flew open and my jaw froze—rubber? More rubber than crumble. And the taste… Yech! Bland with a hint of bitterness. Actually, more than a hint, quite a bit more.

Was she trying to poison me?

I spat it out. I briefly thought of trying another cookie to get rid of the taste. What about one that looked like a snicker-doodle? But realized that perhaps it wasn’t a good idea. Instead, I reached for my water bottle and rinsed my mouth out with water.

After I got over the initial shock, my mind started roaming. Spherical and rubbery—if I dropped one on a hard surface, would it bounce or splat? I was sitting at my desk. The floor was carpeted. Hmmm… It had better be the desk.

I cleared away some space, took a quick look into the hallway—would witnesses be a good thing, or a bad thing? It was a moot point—there was no one there.

I picked out the most regularly shaped spherical cookies and dropped it onto the desk.

It bounced. Not high, but it was definitely a bounce.

And then it splatted.

Brave?

Mum was not the only one to tell me I was brave.

I don’t feel like that title is mine to claim.

Mum was referring to my choice to undergo brain surgery. I was genuinely confused—there was no real choice.

After the brain bleeds, I was only capable of shuffling from one step to the next, living moment by moment, day by day, barely existing. Undergoing the brain surgeries was not a choice. There was no other option.

Between medical appointments and tests, ER visits, hospital stays, and rehab, I wasn’t living a life. I couldn’t drive because of a seizure disorder. Due to severe loss of balance, vertigo, tremors, hearing loss, and debilitating fatigue, I couldn’t work. I was a burden on my family. I was dragging everyone down. Our lives were a shambles.

The only known treatment for cavernous angiomas is to remove them, surgically. There is no other way to prevent bleeds. My only chance at reclaiming my life, my kids’ lives, was brain surgery.

And I was terrified.

Meriam-Webster online dictionary lists fearlessness as a synonym of courage. Dictionary.com defines courage as "the quality of mind or spirit that enables a person to face difficulty, danger, pain, etc., without fear."

I was definitely fearful. No, I was not brave.

On the other hand, the Cambridge Dictionary states thatcourage is “the ability to control fear and to be willing to deal wit something that is dangerous, difficult, or unpleasant.” And according to Wordsmyth dictionary-thesaurus courage is “the quality of will that enables a person to confront fear or danger regardless of the consequences.”

Was I brave? I study my face in the mirror. I taste the word on the tip of my tongue. And I shake my head--nope, definitely not.

I’m just me, Deb, a survivor.