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.

Beacon

I was lost, broken after a third brain surgery.

I searched for a clue, something to anchor me, a first step. But there was nothing. Nothing that truly addressed my needs, neither in books nor on the internet. Yes, there was information out there about the medical side of recovery from brain injury. There were how-to books out there, written by survivors as well as medical professionals.

http://maxpixel.freegreatpicture.com/Lighthouse-Mood-Germany-North-Sea-Westerhever-942046

http://maxpixel.freegreatpicture.com/Lighthouse-Mood-Germany-North-Sea-Westerhever-942046

There were personal stories by caregivers, from the outside. But I needed more—I needed a glimpse into the soul of others who’d walked my path. There were stories from the inside, told by survivors. But they focused on crisis, the cause of the injury, the trauma. Some actually spoke of recovery, but more about the acute phase, at best on the first few months, only briefly touching on their lives in the aftermath, on their ongoing recovery.

I was on a journey into a new life. I had no perspective. I was an alien in a world that made no sense, with neither guide, nor compass. And there was no compass to be found.

From within the fog that was my mind, an idea emerged—I would create my own compass, a beacon of light to guide me out of the haze, into life.

I would write my own guide, through my own story.

Moments of Joy

On days when I feel lonely, or sad, Gus always manages to raise a chuckle. When the bloody brain is being hard on me, he settles by my side, touching, sometimes resting his head on my shoulder, his warm (and not too stinky) breath brushing against my cheek.

He wakes me up in the morning by cleaning my face. If I am still reluctant to get up, he talks to me. He whines and howls, and growls.

And if that doesn't work, he lays on my bladder, a tactic that never fails.

He loves to play, sometimes wrestling before we get up in the morning, or playing hide-and-seek under the covers in the evening. But he especially loves playing outside. Fetch and keep-away are his favorite games. He often tries to trick me into a game tug-of-war, tempting me by repeatedly pressing the squeaker in his toys.

On sunny days, he just enjoys lying in the sun. Like Ferdinand the bull, he's at peace. He lifts his nose to breathe in the aromas. He cocks his head and swivels his ears to listen to even the softest of sounds. He takes in the world around him with bright eyes. Every so often he gets up to investigate further, a bee buzzing among the flowers, a rabbit nibbling on the grass, a rustling in the bushes.

Gus puddle.jpg

Every walk is an adventure. Especially when there are other dogs about. He pleads and barks and pulls. He wants to play. When the other dogs and owners are agreeable, life is good. If he had his way, he would play all day. But when I have to pull away, the pleading and crying go on for a good few minutes, until he becomes distracted by another dog, a pile of poop, a jogger, a bird, a puddle.

He has a particular fondness for puddles. He has a knack for finding them, and he has to walk through every single one, usually flopping down into them, no matter the outdoor temperature.

Gus snow.jpg

Snow days are a particular treat, a time to celebrate--chasing snow balls, digging for sticks in the snow, only breaking for a bout of excited pattern running.

He lives in the present. Bringing out the joy in the moment.

Grrrrr...

I started my day sitting outside in the shade, typing on my laptop, working on an essay about one of my experiences in the Old City in Jerusalem.

It was a lovely morning. The skies infinite, the temperature gentle, a mere hint of the heat to come.

As my fingers danced on the keyboard, I occasionally smiled. Like all my times roaming through the souk in the Arab Quarter, it was a fond memory.

And then disaster struck—somehow, I clicked on something that changed the display. Instead of my usual single-page view, I now found myself facing a two-page view. Assuming this was a minor glitch, easily rectified, I clicked on the View button on the toolbar. I tried Format and then Tools, anything that included the words options or display, but nothing looked promising.

Still calm, I decided to search for a solution on the internet. I discovered that I needed to search for Page Preview. But the only thing I found was how to get a double-page display, on an older version of LibreOffice. This was the first time the LibreOffice help site failed to help—I started becoming agitated.

I wasn’t sure what prompted me to check another document I’d been working on—when I clicked on it, I found that it too had changed its display style. I tried a completely unrelated document, from a different folder. It too was modified. After taking a few deep breaths, I turned back to Google—no matter what I tried, Page Display, Page Preview, Single-Page Preview, nothing helpful showed up.

Now, I was frustrated. I contacted my friend, Judy, to whom I had turned to in the past when my word processor misbehaved. I didn’t have to wait long for her response.

I followed her instructions, which quickly led to a dead end—we were using different versions of LibreOffice. Frustration started transitioning into anger. And when I tried her next suggestion, I had to pause to force myself to unclench my fists so I could continue in my attempts to correct the wrong.

That’s when I realized that really, working with a two-page layout wouldn’t be the end of the world. I could certainly continue writing and deal with the issue later. But almost as soon as the thought popped into my head, I squashed it. No! I wasn’t going to let this stupid program beat me!

I checked my email again—Judy had come up with another idea. I’d already tried it, to no. Now I clenched my jaw as my anger escalated.

My state of mind won over reason—I started clicking on buttons and icons, not quite randomly, not quite violently— It worked!

Finally, only one page showed up on the display. Why—How—

Instead of rejoicing or feeling relieved, now I felt like punching something and/or slamming doors.

Wait! What was going on? I shouldn’t have been this upset. Frustrated, yes. But once I resolved the issue, I should have been fine. My negative emotions shouldn’t be lingering like this.

I wondered whether this was bloody brain related rage—that wouldn’t be good news. I hadn’t experienced that kind of anger in a few years. Yes, I’d been pushing myself too hard lately. And yes, I’d become more fragile, more easily prone to sensory overload, exhausted too much of the day, but still… rage?

I shrugged it off, there was no point in worrying about the reason. It was more important to try to clam down, at least I was better equipped to manage my moods than I used to be.

I took a few deep breaths. Writing! That’d help—I’d write about it.

And I am, and I feel much better—no traces of anger left whatsoever.

But why on Earth did I react so strongly? A bad brain day?

Or just me being a twit?

Tlacalula

I pointed. “I wonder what that is.” then realized—crickets, very dead. Fried? Grilled? How would you eat them? As a garnish? In a sauce over rice? A snack, like sunflower seeds?

Instead of the eeew I expected from my inner voice, I heard myself wonder whether crickets are kosher. After all, locusts were. Only then did the delayed eeew pop into my head. I admonished myself, they probably taste like chicken, like frogs legs. I’d eaten frogs legs, and they did taste like chicken, though more delicate. But crickets would be crunchy, like cockroaches. And the eeew won, for now.

We walked past racks of hand made huipiles, mass produced skirts, and handwoven rugs. A skirt would look great with the huipile I bought in Oaxaca. I turned away and hurried to catch up with Gail. Maybe when we get back to Oaxaca. But I knew I wouldn’t get a skirt—there’re so many other even more enticing things to buy. And I’ve already spent enough money.  I was taken aback by my next thought. Perhaps when I come back to Mexico next-- I was coming back?!

A rack of colorful aprons distracted me. I do need aprons for “Cooking with Calculus,” an online calculus course I was planning on putting together for the math-wary. On our way back.

We continued weaving our way through the market stalls, Gail, Cindy, and I. I breathed in the aromas, mango, papaya, guava. Guava? I breathed in more deeply. I loved that smell, ever since a friend from my college days brought a box full from family's orchard. Or is it grove? We ate them throughout the lecture, filling the room with the sweet aroma, the texture like a ripe pear, though less grainy.

A turkey strutted, its head bobbing and crest wobbling with every step. When it (He? She?) veered off to the right, its owner cuffed him on the head, as if he were a child. It didn’t gobble, or falter in its step. Is he resigned to its fate?

All three of us needing a break from the high volumes of sensory input, we stopped for a spell in a spacious plaza, reveling in the relative quiet. I tried not to look too closely at the stray dogs searching for scraps of food. I caught a glimpse of a puppy with a raw wound on his paw and averted my gaze.

When we felt rested, we rejoined the crowds.

I sniffed at a basket filled with an unfamiliar spiceand coughed, quickly muffling it with my arm. Cindy gesticulated towards it, miming, “Okay to taste?”

Given permission, she dipped the tip of her index finger into the orange powder and brought it to her lips. “Mmmm… spicy.”

She then asked Gail to translate for her. “What does it have in it?”

Expecting one of the ingredients to be chili peppers, I was surprised to learn that the only ingredient that could possibly be the source of the spiciness was crickets. Who knew?

I couldn’t help but wonder, How did she grind them up into such a fine powder? With the other spices? Or separately?

Finally, tired and hot we made our way back to the outskirts of the market, passing by colorful displays of clothing, rugs, and fruit and vegetables. Mouth watering smells of cooking meat followed us as we threaded our way around the Sunday shoppers.

Just as we were about to emerge into the sunlight, I remembered. “Wait, I need to get a couple of aprons.”

Swinging a plastic bag containing two embroidered aprons, I followed Cindy and Gail towards the taxi stand.

Sticky from the heat we climbed into the blissfully air conditioned taxi.

It was time to head back to our hotel in Oaxaca

The Inevitable

Sometimes it gets to me.

I can’t let it hold me back. I won’t let it hold me back. I want to live. I have to live. I refuse to give in.

But sometimes, I have no choice. Sometimes, the Bloody Brain leaves me floundering. I don’t mean headaches. I don’t mean poor balance. Or major meltdowns. Or any of the other more dramatic symptoms the Bloody Brain throws at me all too often.

I mean the more subtle symptoms, the world weariness, an overwhelming slow down that takes over my brain, my body. When I feel the need to, I try to push through it, knowing it’ll catch up with me eventually, melodramatically.

I am able now to postpone the inevitable now.

Seven years ago, in the early days, I had to succumb to the Bloody Brain as soon as it demanded it’s price. I had no choice, there was no bargaining with it, let alone fighting it. If I tried, it would lash out at me with full force.

Right now, I am pushing myself, hard. Writing to damp down the threat of tears, a signal that overload is imminent. I’ll push myself even harder for my job and for friendship. I’ll plaster a tired smile on my face, knowing it’ll quickly broaden and become genuine.

I’ll collapse soon enough, when I have time, when I’m ready.

Suspicions

When did I start suspecting? Was it when there was no talk of discharging me? Or when I felt the atmosphere change?

Setting Up For a Long Haul

Setting Up For a Long Haul

One of the technicians who before I experienced a series of convulsions seemed to enjoy hanging out with me and my visitors, now, whenever she came in, she spoke of stress, that I needed to relax. She told me that I was too highly strung, that when I ate I was hunched over. I wasn’t sure what she was referring to, but then realized that sitting up in bed, reading as I ate, I probably was hunched over the book. I certainly didn’t feel stressed while I was there. Sleep deprived, but not stressed. Bored, but not stressed. In fact, when I wasn’t bored, I was enjoying myself—plenty of time to read, having fun hanging out with some of the medical people, enjoying my visitors.

Another EEG technician, who was in my room during the convulsions, left without a word after they were over, and never stopped by again. She’d been so nice when I first arrived in the Epilepsy Monitoring Unit. The other one who was there, became impatient with me when she had to tend to the electrodes stuck to my scalp.

After I noticed a shift in their attitude and start wondering about whether it was a non-epileptic seizure (NES), I asked those who’d witnessed it what the EEG showed. They were evasive.

I wasn’t convinced when the nurse responded with, “I don’t know anything about EEGs.”

But when EEG technician said, “Oh, I wasn’t watching the monitor. I was busy taking notes.” I knew she was lying—she’d been watching the monitor. The other technician had been taking notes.

The attending neurologist’s reaction to my query about getting out of there within five days heightened my suspicions. “I don’t want to jump to any conclusions at his point. Sometimes, when we think we’re ready to make a diagnosis, something happens that completely invalidates it.”

For some reason, I didn’t catch his answer to my blunt query about whether my convulsions were NES. Did he even respond?

After three nights of sleep deprivation and five days’ worth of grime, which no sponge bath could remedy, I’d had enough—I didn’t care anymore about the diagnosis.

When the neurologist came in for the last time, I could tell—she was hesitant coming in the door, her manner was a little too solicitous. There was no semblance of brusqueness so characteristic of hospital doctors. I knew the protocol. When breaking the news to a patient that their seizures are NES, probably psychogenic (PNES), the doctor should be careful. (Pychogenic seizures are brought on by psychological issues such as stress or trauma.)

According to the Epilepsy Foundation (http://www.epilepsy.com): “Understandably, many patients’ first reactions upon hearing they have PNES, and not epilepsy, is one of disbelief, denial and confusion. That is because mental health issues come with highly stigmatized labels...”

Having faced a doctor who diagnosed me as having PNES nine plus years ago, I’ve already dealt with the “disbelief, denial and confusion.” I was now able to accept the diagnosis. In fact, having done some soul searching when my suspicions gained momentum, I realized that I’d be happy with news that my seizures were NES—it would be one less issue to worry about. Also, the possibility that I could cut back on my anti-seizure med was very attractive to me. Perhaps they were stress related—between the ax over my head I referred to as the Bloody Brain, work, and family, I experienced plenty of stress. Maybe PTSD was a culprit—between the brain bleeds and subsequent surgeries, and a couple of other traumatic incidents in my life…

The neurologist danced around the issue. “We know you have angiomas. We counted them… When they bleed it’s just a spot of blood, not much at all. There’s no real reason to worry.”

Hoping to speed her up, I tried to smile at her reassuringly, but to no avail. Impatient, I tried interrupting her. “So they’re not epileptogenic?” But she wouldn’t engage. She had to go through the complete spiel. “There’s no point in worrying all the time anyway.”

Eventually, she showed signs of getting to the point. “On the right, where you had the surgeries, the brain activity is different than the rest of your brain. More erratic. But that’s your baseline. Compared to that, the EEG exhibited no abnormal brain activity throughout your time here. Which leads us to believe that they were psychogenic seizures.”

I beamed—finally, a definitive diagnosis.

Hunter Gus

First Bunny of the Season.

First Bunny of the Season.

Gus seems to have the instincts. But on the other hand...

Another Baby Bunny

Another Baby Bunny

Bug? Mole?

Bug? Mole?

Actually, he just wants to play--if he corners his prey, he just stands there with his tail wagging.

All Gone. Yum?

All Gone. Yum?

When his prey is really sluggish, he eventually does go in for the kill.

 

Done

Come morning of my last day at The Epilepsy Monitoring Unit, I was raring to go.

My past hospital discharges led me to believe it would take the entire morning, if not well into the afternoon. But to my surprise, the first nurse in the door, freed me of the blood pressure and heart monitors, and within the hour, an EEG technician came by to disconnect me for the EEG machine. As she worked to dissolve and scrub the glue off my scalp and hair, now jubilant over my upcoming freedom from confinement, I had to force myself to sit still. On her announcement that she was finished, I could feel myself beaming. A few minutes later, another nurse remove the IV from my arm.

I had trouble containing my joy when she broke the news that I could now take a shower—I’d fully expected to wait until I got back home. It was pure heaven. I shampooed, then again, and a third time, scrubbing and scrubbing my scalp. I washed and rinsed, and washed again—I wanted to remove as much as possible of the stench of my stay in hospital. I gleefully replaced my pajama pants with a pair of jeans, and my hospital gown with a civilian shirt.

Running a comb through my hair, I found some remaining glue debris. I combed three more times before I gave up—I could still feel the odd clump here and there—it would have to wait until I got home. Nothing could squash me now—I was on my way out the door.

On my way back to my room, I stopped at the nurses’ station. “Did I miss the doctor while I was in the shower?”

I released a breath I hadn’t realized I was holding when I learnt that I had not missed her. Clearly as eager as I was to part ways, a nurse trotted off to find her and another started processing my discharge.

By the time I packed up my remaining belongings the doctor and her intern came in.

The intern treated me as he had throughout my stay, with casual friendliness and mild curiosity. The doctor, who was new to me, seemed solicitous, perhaps overly so—the seizures weren’t epileptogenic, and afraid I’d react badly, she wanted to break it to me gently. I tried to reassure her with a smile.

Her voice was soft. “After looking at all the data, we have a pretty good idea of what’s going on—”

I interrupted her. “So they weren’t epileptic seizures…”

Clearly she was going to take a while, I already knew the answer, and I wanted to get out of there.

She shifted in her seat. “Well… you didn’t exhibit any abnormal brain activity—”

“So they’re psychogenic?” I understood her difficulty, but enough was enough.

“Well… They’re NES, which stands for—”

“Non-epileptic seizures.”

https://pixabay.com/en/yada-yada-phrase-formula-222767/

https://pixabay.com/en/yada-yada-phrase-formula-222767/

She corrected me gently, “We now refer to them as non-epileptic spells—”

“So psychogenic...”

But she wasn’t going to let me hurry her along. She leaned forward. “There are different names for them: psychogenic, pseudo-seizures… I personally don’t like that term because it implies that they aren’t real...”

She went on about how they are stress related and that I should see a therapist, etc. etc. Blah blah blah. I’d heard all this before--I got the point. My hackles rose a bit when she started expanding on the nature of angiomas—I knew quite a bit more than she did, and some of her information was downright wrong.

Having researched psychogenic seizures, I was fully aware that she was using the standard approach—for whatever reason, some patients at some level want the diagnosis of epilepsy, and don’t react well to news to the contrary. Though I knew that she was doing her best, and was sympathetic towards her, my patience was fast running low—she wasn’t listening to me, I was glad about the diagnosis and I was already in therapy.

Eventually, she wound down and stood up to leave. On her way out the door, she once more strongly encouraged me to look into undergoing Cognitive Behavior Therapy.

Shortly after her departure, a nurse handed me my discharge papers. “Do you want a wheelchair?”

I vehemently shook my head, collected my bags, and practically ran out of there.

I strode out of hospital with a goofy grin on my face.