Hiding

Was it Cindy’s idea or mine? I think I was the one who came up with, “You don’t want to hear a neurosurgeon saying “oops!””

She was definitely the one who suggested: “That was cool. Now, can you make her leg twitch?”

One of her coworkers offered: “Are you sure she’s asleep?”

When I told Jonathan that we were putting together a list of things you don’t want your neurosurgeon say, he chuckled. “Hold on. How did it go on Grey’s Anatomy?””

We laughed through our fear of my upcoming brain surgeries. Even after the first surgery, I joked. While waiting in Recovery, I tried to come up with something funny to say to Mum, Jonathan, and Bill when they showed up. “Who are you?” and not wanting to alarm them, I immediately added, “I’m just joking.”

Mum and Jonathan told me after the fact that I was grumpy after the second surgery, probably because I felt so awful. Yet I continued joking. Throughout the day, neuro-types stopped by to check on me. It didn’t take me long to become bored with their questions. How could they expect me to know what day it was—I’d been in hospital for a few days and underwent a couple of brain surgeries.

I tried to contain my irritation when they asked, “Do you know why you’re here?” because I understood the reason behind it. But when they reached, “Who is the president?” that was it. I was done! “President Cohon.” (Jared Cohon was the president of Carnegie Mellon University, where I worked.)

I laughed through rehab as well, teasing my physical therapist, Keith. He was a prime target—he took himself so seriously. I continued to smile after I was taken back to the Neuro-ICU because of a CSF (Cerebral Spinal Fluid) leak from the site of the brain-stem surgery.

But the third surgery was different.

By the time I completed my stay in patient rehab, I was ready to rejoin humanity, to pick up where I had left off. And then the third surgery happened—an emergency, a complete surprise. Unlike the previous two, I didn’t have time to sure up my defenses, to hide behind the laughter. All my jokes dried up. I could no longer luxuriate within denial.

I didn’t return to inpatient rehab after the surgery, as I expected. I was in bad shape—once again confused, my balance compromised. And instead of looking forward to going home, I was afraid, terrified of what lay ahead of me. I was scared that I wouldn’t be able to fit back into the world I had known before the bleeds. I felt branded by my scars, I was fearful of the pity I might see in peoples expressions.

It took a few months before my laughter returned, but it was tired, half-hearted.

In time the laughter became authentic, more authentic than it used to be, ever, even in my previous life. I no longer felt the need to hide behind my jokes, or at least not among people who knew my story--friends, family, students, coworkers.

I am more honest with myself. I am more authentic. More me than I’ve ever been.

Impostor

http://www.publicdomainpictures.net/view-image.php?image=168252&picture=patient-in-hospital-room

http://www.publicdomainpictures.net/view-image.php?image=168252&picture=patient-in-hospital-room

About a week to go. Am I anxious? Maybe. A bit. Yes, I’m anxious. About what? The procedure? No. Not really. It’s way in the future. Abstract. It’s not real to me. Like the third surgery.

Throughout the process of draining my CSF (Cerebral Spinal Fluid), before the third brain surgery, I thought they were fussing. Yes, I had a leak from the site of the brain-stem surgery. Yes, it made sense for them to drain fluid away from the site of the leak to promote self-healing. And of course, it would be best to avoid a third surgery to patch up the leak. It all made sense, theoretically.

In my mind, I knew that all this fussing was unnecessary. The connection between cause and effect just didn’t exist as far as I was concerned. I knew neither would happen, neither self-healing, nor a third surgery, and that was that. No need for concern.

It didn’t occur to me that my thought process was flawed. To me, reasoning was irrelevant. There were just facts—the lumbar drain wouldn’t do the trick, and a third surgery would never happen.

Whenever the neurosurgeon stopped by my room in the ICU to ask whether I still had salty fluid dripping down the back of my throat, I swallowed experimentally then nodded. But a niggling little voice questioned: was I merely imagining it? Perhaps it was due to allergies, or a cold. Was I just seeking attention?

Three days after they started the lumbar drain, the neurosurgeon walked in the door and announced, “Another surgery. Tomorrow.” The drain wasn’t doing the trick.

I was in shock. It didn’t make sense. I wasn’t meant to have a third surgery. This shouldn’t be happening. It was wrong.

I was still confused by this whole cause-and-effect thing. I still was unsure about everything that led up to the third surgery. Is this really happening? Or am I imagined it? It felt like a story about someone else, a stranger.

After the surgery, I learnt they discovered a “suspicious looking mastoid” as the neurosurgeon put it. When he told me they’d plugged up the leak, I was still filled with doubt. I occasionally swallowed, expecting salty taste, but there was no question—it was gone. I still wasn’t totally reassured. The neurosurgeon had said “suspicious looking.” Perhaps they hadn’t really found anything. Perhaps I’d undergone a third brain surgery for no good reason—because I’d been messing around looking for more attention. Perhaps I’m a complete fraud.

Even though I now know it’s a fact that the third surgery was necessary and deep down I believe there was a leak, that little voice speaks up occasionally, casting doubt over every aspect of the bloody brain, past and present, including the leak.

And here I am, nine years post-surgeries, once more, doing the same thing. This time, over possible seizures. Am I over-dramatizing? Were those incidents truly seizures? Or had I imagined them? Am I an attention seeker?

When I go to the epilepsy monitoring unit, will I be exposed as an impostor? Why am I putting myself through this? A three to five days’ hospital stay, including sleep deprivation, trying to induce a seizure. Just to find the source of the seizures, possibly to mess with my meds. They’ll find me out for the fraud that I am. I probably haven’t been experiencing true seizures. It’s just my fertile, sick, imagination. Those bright flashes of light—if they were really there, could easily be symptomatic of migraines. The sudden fatigue, my body feeling so heavy, just like those seizures back then. But even back then, within the first several years after the bleeds, the doctors had questioned the nature of these neurological event. On the other, other brain injury survivors have reported strikingly similar events.

Why am I doing this to myself? Even if they do detect seizures, so what? I’ve already given up my drivers license—there’s no doubt that I have experienced seizures in the past, and I’m definitely at high risk for seizures. I wanted to do the responsible thing.

Could I still be searching for validation for the bloody brain? After all these years?

Adventures

I came out of the third surgery lost and broken.

I had no idea where to start. This was new territory, and I had no guide, no compass. I wanted, needed help. But all I found were books about symptoms leading up to diagnoses and acute recovery—there was very little about what happened beyond that point.

At a conference I attended recently, I met a woman who had gone through several harrowing experience. She gave a powerful presentation about her journey. Like me, shewrote a memoir her ordeals. We compared notes about writing our autobiographies. One thing she said struck me. Apparently, many of those who learnt of her memoir assumed it was therapeutic. But according to her, that was not the case—by the time she wrote it, she had already met her need to explore her ordeals long ago.

https://www.pexels.com/search/adventure/

https://www.pexels.com/search/adventure/

When I started writing about my journey with the bloody brain, mere days after I returned from hospital, my motivation to write about my own experiences emerged from a need for guidance. My next thought was that other brain injury survivors might benefit from learning of my struggles. The therapeutic value in writing about it did no occur to me until a couple of years later, when my writing coach, Judy, suggested it.

The writing certainly wasn’t making me feel better. If anything, tackling some of the tougher issues was like reliving them, frequently triggering grief or fear, often reducing me to tears, at times causing spectacular meltdowns.

But through my writing, I gained a better understanding of the bloody brain--the bleeds, the surgeries, my path to recovery, and how it turned my life upside-down. Along the way, it also heightened my self-awareness and helped me become more authentic. I wondered—was that what Judy meant by therapeutic? If so, then she was right, writing was a form of therapy, of exploring my reactions, my emotions., my life.

As I think about it now, I realize that facing my demons, remembering the best and the worst, I had found my guide through this mess, this amazing, wonderful, devastating adventure. Which is exactly what I’d hoped to accomplish when I first at down to write my manuscript.

At the same conference I attended recently, I gave a presentation about my life with the bloody brain, past and present. From the reactions I got during and after my talk, I came to realize the I also accomplished my other goal—to help those undergoing a similar journey.

Coating

My head was shaking side to side. I couldn’t control it. Every time it turned towards my right, I almost slammed into the phone I was holding up to my ear. Why was the phone there? Should it— Before I finished the thought my head turned to the left. Back and forth on the pillow, phone, no phone, right to left. Grunting. Like an animal. Who? Me?

“Deb! Deb! You okay? Are you having a seizure?”

Oh, I was having a seizure. Thick, viscous, disgusting mucous oozing down my chin onto my hospital gown. And the phone, stuck to my hand. Shouldn’t I be doing something with it? Why was it still in my hand?

I was shaking, drooling. A grand-mal seizure. In hospital, after my first brain surgery.

I couldn’t have a seizure! I had one more brain surgery to go. They might decide I shouldn’t undergo the next one. I couldn’t wait another six months for the second surgery.

It had only been hours since the first brain surgery, maybe a day. And I was experiencing a grand-mal seizure. A very odd sensation. The shaking I couldn’t control, the animal noises… Why couldn’t I control it? Why was my body not my own?

I was on the phone to Cindy, the phone attached to me, to my hand. She suggested I was experiencing a seizure. A seizure?! No, no! I couldn’t have a seizure now! If the surgeon found out about it, he might refuse to perform the second surgery. He said that if the first went well, he’d do the second a day later. If not, they’d have to wait six months.

I couldn’t wait another six months! I needed to get this over with. I have to start rebuilding as soon as possible, reclaiming my place in the world, getting back to normal.

https://www.flickr.com/photos/diversey/17238701230

https://www.flickr.com/photos/diversey/17238701230

My life as it had been over the past few months, since the bleeds, wasn’t much of a life. It was no more than an existence, putting one step in front of the other. My entire life revolved around the bloody brain, surviving obstacles it kept throwing my way, hour by hour, day by day. I wanted move on. I needed to move on.

I heard myself swearing into the phone: “Shit, shit, shit, shit!”

Cindy chuckled. But it wasn’t funny.

The saliva was repulsive, soaking my hospital gown. Thick and sticky. Coating the flimsy gown with a layer of glistening slime. I recoiled when my finger brushed against with it. So revolting, beyond revolting.

Cindy insisted I press the call button to call a nurse to report the seizure. All I could think of was about my next surgery, and the slime. I couldn’t stand it. My chin was coated with it, as was my gown. If I’d only worn a bib.

She asked me to hang up the phone so she could alert the nurses. I wasn’t sure how to do that. The phone was still glued to my hand, a fact I was incapable of processing. Cindy repeated her request several times before I was able to figure it out.

My next memory was of medical personnel swarming around me. They seemed skeptical that I’d suffered a seizure.

Perhaps the nurse who’d been monitoring me through a window, from the hallway, hadn’t noticed anything. How could he have not noticed? He’d seemed so nice when I met him earlier. His name was Brian and was from Scotland. Or was it England? Or Ireland?

I pointed to the saliva, glistening on my chin, soaking my gown—their skepticism evaporated.

They sprang into action, rushing to and fro. Did they take me for an EEG? Or did they administer it right then and there? I couldn’t make sense of my surroundings. What they said, what they did, was irrelevant—my anxiety over the second surgery reigned consumed my all.

A lifetime later, my neurosurgeon made his rounds, checking on his patients, checking on me. “How do you feel?”

“Fine.”

“So it’s a go tomorrow?”

I nodded. “It’s a go.”

He smiled and patted my leg.

I was going to be all right.

Melodrama?

http://www.freestockphotos.biz/stockphoto/14398

http://www.freestockphotos.biz/stockphoto/14398

I felt woozy, confused. Rather than fear, I was filled with a vague sense of puzzlement. Wisps of unfinished thoughts wafted by, out of reach. I finally managed to snag one—Cindy might be able to figure it out.

After a few failed attempts to phone her, I got her on the phone.

I spoke softly, haltingly. Her voice sounded as if it was coming from a distance. I had trouble understanding her. “What’s going on?”

“I… I don’t know. Feel weird. Something’s wrong. Can’t figure it out.” My voice softened further, I felt so very tired, my body felt impossibly heavy. My difficulties accessing words and thoughts grew. I kept repeating myself. “Something’s wrong. I don’t understand.”

Cindy was asking me questions from a great distance. But I couldn’t answer. My words were too weak to surface, they floated uselessly inside me.

I toppled off the coffee table in what seemed like slow-motion, the phone in my hand. I landed on the rug, the phone on the floor beside me. That seemed odd. I felt fuzzy, as if I was in a fog, and serenity replaced my puzzlement. The rug was soft. It came into sharp focus—it looked like it was made of pebbles, off white with flecks of brown. Each bump sprang rusty colored whiskers. It intrigued me in a hazy way.

I wanted to lie there forever, contemplating the texture. I felt comfortable as I had never felt before.

Actually, it wasn’t that comfortable. The texture was, in fact, harsh, scratchy. The pebbles were digging into me, probably making marks on my cheeks. And why was the phone on the floor? It didn’t belong there.

I got it up and placed it on the cradle. And promptly forgot the incident, as if it had never happened.

Cindy told me later that she thought I’d experienced a seizure. At the time, I didn’t quite believe her. Why would I have a seizure?

She’d called Bill, my now ex-husband to alert him. But when he came home and asked me about it, I shrugged, embarrassed. I had a vague memory of collapsing. But I was now fine, no reason to worry.

Only later, when my head exploded into a headache such as I’d never experience, much worse than any migraine I’d ever suffered, did I make the connection. Whatever it was that had taken place earlier was a symptom of a brain bleed.

But the notion that that event was a seizure totally escaped me, until a couple of weeks later, when I started experiencing them on a regular basis. And even then, I wasn’t completely convinced—only occasionally, when something triggered a fleeting memory of the incident, which seemed irrelevant, uninteresting, certainly not worthy of exploring.

Though now I’m pretty sure it was a seizure, a niggling little voice inside me questions it. Perhaps I was over-dramatizing. Maybe I was just really tired. But it was really weird. Could it have been a seizure after all?

List

“What do you wish was done differently after you brain injury?”

I was surprised to see myself type: “I wish I had a list of deficits, symptoms.”

Why has it taken me so long to make that connection?

The question came up in a survey about the aftermath of brain injury. I added to my response, “A list with examples and explanations.”

When I came home after the surgeries, I felt lost. I had no idea where to begin. I didn’t understand what had happened to me. I didn’t think to associate some of the symptoms with my brain injury. When grief filled me, I thought I wasn’t handling things adequately. When anxiety overwhelmed for no apparent reason, I thought I was going mad. I wondered whether my difficulties following conversations were because I wasn’t trying hard enough to focus. My “supposed” issues with my balance and “seizure-like” episodes, made me question myself—was being melodramatic?

A couple of months into my recovery, my neuropsychologist explained some of the symptoms, that they were indeed bona fide deficits related to my brain injury. My meltdowns were a consequence of issues processing sensory input—my brain now had difficulties keeping up with high volumes of sensory input. This deficit, named “sensory overload,” was common among brain injury survivor, though my version was more extreme than any he’d encountered among his other patients. He also told me that my “seizure-like” were real neurological events, not psychogenic seizures, or pseudo-seizures, as many neurologist label them—I wasn’t being melodramatic.

My issues with procrastination were in fact normal. He used the word “task-initiation.” I wasn’t just being lazy—indeed it wasn’t the same as procrastination. It felt different. It was as if there was a physical obstacle between me and the act of beginning a task. He even came up with a strategy to manage it, which works, sometimes.

https://www.pinterest.com/explore/grocery-list-templates/

https://www.pinterest.com/explore/grocery-list-templates/

His assurances came in bits and pieces over time. Each one calmed my fears and helped me cope with and compensate for my deficits. But progress was slow—I still occasionally wonder whether I’m over-dramatizing or malingering.

If only part of the discharge instructions included a manual, a list of issues I would face as I recovered. It would have been so much easier, especially if it had come with examples and explanations. I wouldn’t have suffered from as much anxiety and fear that I would always remain as I was, deficient. I would have found ways to manage deficits before my difficulties swamped me with self-doubt.

I did eventually learn that my ability to think sequentially was damaged, but it would improve. I hadn’t lost capacity, only facility—the brain power was still there, but the bloody brain had harmed my ability to access data. I was relieved when he assured me that my brain was in the process of healing and rewiring. In time, I learnt that I would never be as I was, but I was not less for my losses. In fact, I was more.

I discovered passion, for writing and teaching. I had more compassion and became more open to the world. As I took a crash course in learning to ask for and accept help, my social skills grew and with them my world became richer. I became more aware and self-aware.

I asked my neuropsychologist a lot of questions. I went through a lot of “Aha!” moments in his office.

When I spoke to other brain injury survivors, I discovered that many of them underwent similar difficulties, except that, unlike me, the vast majority weren’t relentless in searching for answers. And most gave in to the self-doubt, convinced that they were handling their new life inadequately.

When I first started writing my memoir about my recovery from brain injury, my motivation was to help friends and relations understand my issues. More importantly, I hoped to help brain injury survivors along their paths to recovery. I hoped that by reading my story, they would have the guidance that I lacked on my own journey.

In addition, in the hopes of helping students with brain injuries, a few years into my recovery, I wrote a pamphlet where I describing deficits that such students might be facing. Every deficit on the list was accompanied by an explanation, an example, and suggestions on how to accommodate it.

Despite the conscious purposes behind writing my book and the pamphlet, I failed the connection—I too would have benefited enormously from such a list.

Memory Shards

Why won’t he help himself? Why doesn’t he bring his hands out from under the blanket?

His bed is so weird—a box, covered with a thin blanket, pulled tight. Tucked in so neatly, too neatly. Hospital corners.

All the other soldiers were laughing, chatting. Propped up in their rumpled beds. They wanted the candy I offered. Or did they? It was lousy. Cheap—I wouldn’t have taken any. Were they just being polite? Just tolerating us, a bunch of thirteen year-old girls dressed in our khaki scout uniforms, coming in to cheer up the wounded soldiers, to give them candy.

What were we thinking? Who came up with the idea anyway? Our troupe leaders? What were they thinking? Didn’t they realize we’d probably come across some like this one? Horrific, terrifying.

I almost walked past it. No one mentioned this room. Was I not supposed to go in? But I was curious. The bed was weird. Why was it so quiet in there? But no, the voices were just soft.

I rationalized. It wouldn’t be fair to skip this room. All the others got candy.

Why didn’t I leave as soon as I realized there was something very wrong? I wanted to see. The bed was high, and he was lying flat. I took a step closer, then another. I rounded the corner of the bed. And froze.

The soldier’s eyes were wet and glistening. An impossible black. I remember fixating on his eyes.

Why am I remembering this now? What triggered it? I search through the files in my mind. Oh yes, memories of trauma and confusion, of panic and fear. Not knowing what to do, seeking help where there was none. Memories of the early days after the brain bleeds, all those hospital stays, the seizures, the brain surgeries.

And there I was, remembering another hospital, more than four decades ago, during the Yom Kippur War. Another traumatic event. Another memory of fear, of a burnt soldier. Had he been trapped in a burning tank?

I stood frozen. I couldn’t look away from his eyes. Twin pools of darkness. Almost overflowing. Like a still black sea at high tide. Almost contained. Mostly contained. Weird, wrong.

The rest of his face was horrifying. A patchwork of mustard yellow and pink. Or was it red? Scars? Raw flesh? I don’t remember. The mustard yellow I remember, vividly. A still mask, with a sheen. Like shiny rubber. Not sweat.

I recoiled inwardly. His face repulsed me, I was terrified by his hideous shell. My thoughts and emotions were everywhere and nowhere. Was I shocked? Afraid? The only coherent thought in my mind was about giving him that candy. All other thoughts were only partially formed as they scurried around in my mind, out of reach.

A crumpled brown paper bag filled with lousy candy in my hand. Why didn’t the visitor come to my rescue? If he’d only reach for it, this ordeal would be over. Why wouldn’t he?

A tableau: the soldier, his visitor, and I, frozen, suspended in time and space.

The soldier and his visitor, their eyes are locked onto mine. The visitor, his mouth open, his eyes round. The soldier, his face... His nose… Where is his nose?

I want too look away. But his eyes draw me in. I want to do something, to react, but all I am capable of is a lone whimper. I don’t understand. Why? How? What? Why am I here? How do I..? What am I supposed to...?

I clutch a crumpled brown paper bag in my hand. Why do I have a bag in my hand? A bag of candy. Lousy candy. Candy for the soldiers. I’m supposed to offer it to him, to hand him the bag so he can reach in— Why isn’t he moving to take it? Why isn’t his visitor helping me? He too is frozen, his mouth agape. I’m only a kid. He’s the adult. He should be helping me.

I stand for an agonizing lifetime.

A hand appears from behind me, grabs some of the candy from my bag, reaches out, and drops them onto his nightstand. They fall with a patter, a couple bounce.

And the spell is broken.

Games

I wind up and let it go. As it starts its flight across the room, Gus gallops over, his tail streaming behind him like a banner, with me chasing him at a jog. He rushes to snag the stuffed toy raccoon with his teeth, waits for me to catch up, then turns and runs back towards the dining room, every so often turning to make sure I’m still following him.

When he reaches the dining room he gives me one more smile, then trots off into the kitchen. I catch up and clumsily grab at the toy. He turns, tail wagging, and runs back into the dining room, where he waits for me to begin the next phase in the game—tug of war.

On my first try at grabbing for the toy, he pretends to be fierce—holding on for dear life. When I give up and let go, he drops it at my feet and places a foot on it. As soon as I make a move towards it he snatches it up, but when I take hold of it, he lets me drag it out of his mouth, so that I can throw it for him, once again.

We keep it up until either I start flagging and stop cooperating, or he gets bored and lies on the floor to chew on it.

Whenever we play, we make up the rules as we go. We each catch on quickly as the rules change, usually within two demonstrations.

We’re both pretty smart.

Oh Well

She smiled. “So, when’s your next trip?”

I thought for a brief moment. “Well, I’m going to Israel next week—it’s our spring break...”

She nodded.

I thought some more. “And a the end of May, I’m off to New York for the Book Expo America. You know… for the book...” I grinned, a tad embarrassed. “Oh, and a week later, I’ve got my trip to Oaxaca.”

Judith, my therapist, frowned and asked: “Where’s that?”

I was surprised. “In Mexico.”

She nodded again. “Anywhere else?”

“End of July, beginning of August, there’s the writing retreat…” I grinned at her. “I’m going to be a mess.” and shrugged. “Oh well. That’s all.”

Judith smiled. “Oh well.”

And we moved on to the next topic.

Jollies

“Die Hard Dice inc. produces wooden dice. Suppose they make the oak die out of 20 by 20 by 20 cm cubes. Suppose the error in measurement is at most 0.02 cm. Use linear approximation to estimate the maximum error, the relative error, and percentage error in computing the volume of a cube.”

I administered a calculus test a few days ago. I also had a problem involving James Bond taking photos as he drove past a rocket launch site.

flickr

flickr

I enjoy teaching, but writing and grading tests is not my favorite activity. Nor do the students enjoy taking tests. Somehow, we have to get out jollies.

I may have gone a bit overboard in this past test—I added a bonus problem:

“What is the number you dislike the most? Explain.”

My answer was: “23—it’s obnoxious and condescending, which is ridiculous, given the 24, right next to it, is such a lovely number.”

One if the students disliked the number e because it has too many digits (it’s irrational). A number of Chinese students were wary of the number 4, because in Chinese the symbol for 4 is similar to the symbol for death. Most of the responses were either funny or interesting. I left grading the bonus question for last, something to look forward to.

After I finished grading, I sat down to put together a make-up test.

I started with, “Boxed-In inc. produces cardboard boxes...”