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.

 

Suspicions

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

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.

https://en.wikipedia.org/wiki/Holter_monitor

https://en.wikipedia.org/wiki/Holter_monitor

One of the technicians who were 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?

There are two type of NES—Psychogenic and Physiologic. Pychogenic seizures brought on by psychological issues such as stress or trauma (not by abnormal electric brain activity). Physiologic seizures are triggered by physical events like sleep deprivation, hypoglycemia, or cardiac arrhythmia.

After three nights of sleep deprivation and five days’ worth of grime, which no sponge bath could remedy, I’d had enough. My head was itching, I was sick and tired to being confined to the room, and I was fed up with the food. I didn’t care anymore about the diagnosis.

I just wanted out.

Yes or No?

Something’s wrong, as if my brain doesn’t fit inside my skull. No, that’s not quite it. I feel heavy, my legs, my arms, my head—

It clicks—I need to press the call button. Now. As I press it, I start second-guessing myself—maybe it’s nothing, maybe I’m just tired. I really slept poorly last night—

A nurse hustles into the room. “Tell me what’s going on.”

I describe my symptoms as best I can, but some of the words have gone missing. I can’t stop fidgeting. My jaw feels tight. My knee starts jerking, then my head. My muscles are stiff, rigid. Everything is jerking, legs, arms, head. My back arches and releases, arches, arches.

I feel like a puppeteer is controlling my body. Stop— my head jerks to the right, center, then right again, and again. My back arches again, throwing my body side to side. My arms and legs are all over the place. I slam into the padding on the right, then the left. My head jerks and jerks, left, right, left right. Stop—

My left knee is bent. One foot pressing hard on the other. What the—

Jerking, jerking. Sideways, up and down, in all directions. My muscles, so tense.

A lifetime later, the jerking decreases in frequency and amplitude. My muscles are beginning to relax— No—my body goes wild again, even worse than before.

The next series doesn’t last as long, but recovery is longer. The next feels halfhearted, as if the puppeteer is beginning to tire.

Finally, it’s over, more or less—I only experience minor intermittent flareups. I take a deep breath. It’s okay, I made it.

 

I feel as if adrenaline is coursing through my drained body, not allowing me much needed rest, as if the puppeteer isn’t quite ready to relinquish control.

Once all the aftershocks have faded and I have time to allow myself to feel and think, thoughts and emotions chase each other around. I am relieved it’s over, that I can go home soon, that there’s a definitive answer. Finally, there’s proof positive that my seizures are epileptogenic.

But over the next few hours I sense a change in the atmosphere around me—somehow, it doesn’t feel quite as amiable. One of the EEG technicians is less solicitous. Another is actually abrupt with me. And a third seems more distant, where before she was a lot of fun, joking around, laughing.

Do they feel like I am wasting their time? Could it be that there was no change in my brain activity during that seizure? How could they have been NES (none-epileptic seizures)? They were so real, so violent. There’s no way stress could induce something like that. Or could it? Stress can trigger a heart attack, why not seizures? But there are underlying biological issues behind heart attacks. Why not behind seizures?

https://www.dreamstime.com/royalty-free-stock-photo-dice-words-yes-no-maybe-image15861455

https://www.dreamstime.com/royalty-free-stock-photo-dice-words-yes-no-maybe-image15861455

The last time a neurologist diagnosed me with NES, she was accusatory. When she told me that cavernous angiomas were harmless, I asked her about my loss of balance. She asked for a demonstration, and when I showed her, she claimed I was faking it. I was devastated. To this day, whenever I experience symptoms that may be related to the bloody brain, I doubt myself—am I an attention seeker? Am I a malingerer? Am I not trying hard enough?

In reaction to her accusations, for years I tried too hard, struggling to push myself through crippling fatigue, attempting to function through excruciating headaches. I often drew on my almost depleted resources to focus—perhaps that would help me overcome my precarious balance, my dizziness and vertigo, my difficulties with my memory and attention span. But the harder I tried, the worse I felt. And all consuming headaches and debilitating fatigue, confined me to bed in a darkened room, preventing me from functioning even at a minimal level for a couple of days. The headaches didn’t fully abate for months at a time.

And now? How do I feel? Devastated as I felt back then? I search my inner self. No, not really. I sense a twinge of... what? Frustration? Anger? Disappointment? Fear?

Whatever it is, it’s only a twinge.

At this point, I just want an answer.

Is it? Or isn't it?

Pinch?

“A tiny pinch.” she said as she brandished the long syringe.

Yeah, right. A tiny pinch, my arse—a lousy description. I’ve been pinched in the past, poking a needle into my arm didn’t feel like that, not by any stretch of the imagination. But, here, in Pittsburgh, nurses always describe a shot as a pinch.

When I was in hospital for my brain surgeries, they referred to it as a “poke,” which at the time seemed like a better word to describe it. But now that I’ve had time to think about it (almost ten years), the word “poke” doesn’t cut it either.

When my children got their vaccinations, the nurses always told them it would feel like a pinch and that it wouldn’t hurt. Wanting the kids to trust me, I contradicted the nurses. “It will hurt, but only for a split second.”

I was in hospital recently. Whenever a nurse drew blood from my arm, put in an IV, or gave me a shot, they used the word “pinch.”

I objected. “It doesn’t feel anything like a pinch.”

Most chuckled, but one actually thought about it and agreed with me. Asking for an alternate suggestion, I came up with the word “sting.”

If I were describing the experience to a child, I would definitely describe it as a momentary sting.

Yup, a sting, sometimes a really nasty one.

River Trail

Five days in hospital, confined to my bed, left me weak. I felt achy as I climbed stairs. I struggled to get through lecture. Playing with Gus left me light-headed. It took me four days before I felt ready to take Gus for a walk.

He was beyond excited, sniffing all over the place. pulling me from one trail to the next, first along the railroad tracks, then down the hill to the street, through a tunnel that goes under the tracks over to the housing envelopment by the river, and finally to the trail along the water.

So intent on the smells around him, he didn't see the rabbit who tried to taunt him by hopping away in a plain sight. He showed very little interest in the beaver who crossed our path to make his way down to the creek. He barely glanced at the blue jay who landed and took off right under our noses. Even the second beaver we encountered only led to a brief pause on Gus's way to his destination--the river.

I should have known, Mr. I-hate-baths loved natural bodies of water, from muddy puddles and ponds to wide rivers and lakes.

As soon as he spied the water, he leapt ahead, pulling harder on the leash. He plowed in, turned towards me, and lay down. No. it wasn't hot out, just pleasantly warm and sunny.

He lay there, his ears perked up, gazing at the ripples, luxuriating. Then he jumped up and continued exploring along the shoreline, every so often attempting to pull me in after him.

Growing tired of that particular stretch, he trotted onto dry land, shook himself, and rushed over to his next stop--downriver to a landing we visited a couple of times in the past. Once again he plowed right into the water and lay down in it, smiling,  his tongue lolling. This time, he was ready to return to the path after a brief paddle.

Only after his third dip, further along, was he ready to return home. Both tired, Gus still wet, we made our way back at a leisurely pace.

Still on his leash I led him upstairs to take a bath.

Ears back, looking forlorn, he stood in the water, unwilling to sit, let alone lie down.

 

Whistle

After the first, I listen for the second, and the third. That’s the norm—three. I’ve never heard just two or one, I’ve heard four only twice, and I have never heard more. This time, when I heard the first, I was puzzled. It was shorter than usual, and the second didn’t come. I looked behind me. Nope, the crossing was far, too far for the train to be whistling.

Walking along the railroad tracks with Gus is always an adventure, there’s always something new to investigate, not just new smells for Gus, but also new things for me. A rabbit hopping ahead of us, not jumping into the bushes bordering the path. A beaver on his way down to the creek, a blue jay landing and taking off. A flower I’ve never seen before. Trees changing with the seasons.

https://en.wikipedia.org/wiki/File:Locomotive_4916_Thirlmere.jpg

https://en.wikipedia.org/wiki/File:Locomotive_4916_Thirlmere.jpg

There’s always something new.

This time, it was the train. Well, not the train, but its horn. Gus paused, and looked back at me. Was he also puzzled? Or just anxious because of the loud noise?

I looked up at the locomotive, then glanced around me. Was the engineer waving at me? I’d never been tooted at by a train. By a truck, yes, when I was young. But never by a train.

He was waving and smiling. I grinned back at him as I waved.

Wait! Was that his version of a wolf-whistle? I looked down at my camo pants and thought of my gray hair. Nope. Not a wolf whistle.

I smiled at Gus and shrugged—

And realized that he was waving at Gus. Perhaps us. No, it must have been Gus. Or us.

Gus trotted on. And I followed, beaming—I’d never been whistled at by a train.

Two Showers, Six Shampoos, One Haircut

A five-day hospital stay. Yikes!

Still smiling

Still smiling

The pre-hospitalization packet said three to five days.

Upon arrival at the EMU (Epilepsy Monitoring Unit), the nurse clarified: three to five days on average. A minimum of three, possibly more than five—it depended on how successful they were in inducing seizures. Possibly more?!

Mid-afternoon, the attending neurologist stopped by and dropped the next bomb—they might want to keep me seven days, possibly more. I couldn’t, I wouldn't. Five days were bad enough, but more— No. I couldn’t.

“You can always leave before that. Even if we don’t manage to come to any definitive diagnosis. We can’t stop you.”

I didn’t hesitate. “Three days! That’s it!”

His eyebrows shot up. He managed to convinced me to allow for five days. “We might be able to let you go sooner.”

I could but hope.

Mid-morning my second day, I experience a seizure which included mega-convulsions. Instead of being afraid, I was thrilled—they’d let me out early. But apparently they felt it didnt provide sufficient data for them to come to a conclusion.

My hair stiff with glue the technician used to attach the electrodes to my scalp, unable to rest my head on the pillow comfortably for fear of displacing the electrodes, I slept poorly through the first night.

Removing electrodes

Removing electrodes

At first, I managed to ignore the fact that I was being watched via a TV monitor. But by the afternoon it started to bug me. I took every opportunity to escape to the only place free of cameras—the bathroom.

I took my time on the toilet. When I washed my hands, I scrubbed and rinsed and rinsed and rinsed some more. I’ve never spent that much time brushing my teeth, and my daily sponge bath was lengthy as well.

Though I tried to keep myself busy—reading, writing, playing a computer game (“Monty Python’s The Ministry of Silly Walks”), scrolling through Facebook, I was bored, really bored. I often I found myself trying to peel the glue off my earlobes and pull it out of clumps of hair that escaped the dense forest of wires.

Five days. Five long days. Even though I had plenty of visitors to help me while away the time. Two to three of those days they sleep deprived me. “Stressing your body and brain will increase the chances of having a seizure.”

By the third day, I was yearning to leave. I was beyond exhausted. My head was getting itchier and itchier. Knowing that I was being watched throughout was creeping me out more and more.

Finally, the fifth morning arrived. Removing the heart monitor was the first step towards freedom. I was excited when the EEG technician stopped by to remove the electrodes. She kept apologizing when the stuff she rubbed into my scalp sometimes stung. “The electrodes caused some skin breakdown.”

I didn’t care. Next it was time for a shower. Attempting to remove the remnants of the glue, I shampooed once and then a second time, scrubbing and massaging, and scrubbing some more.

Free

Free

I got home around lunchtime. My first priority was to remove the stench of my hospital stay. Another shower was in order—another couple of shampoos. But some stubborn bits of glue still clung to my hair.

The next stop was the hairdresser. “Just buzz it. Get rid of it. If you see any more bits, please pull them out. I can’t stand it.”

She complimented me on my new look. Though I thanked her, I really didn’t care. I was just happy to have finally have eliminated all the evidence.

“Would you like a shampoo? I’ll use some cleansing shampoo.”

Even better—I nodded vehemently.

Two shampoos later, and I finally felt free, free of doctors, nurses, hospital food, hospital gowns, everything hospital, free to move on, free to get back to normal life, free.

This morning, four days after I was freed from hospital, I picked out yet another clump of glue. It was small, but still…

Ugh. I hope it’s the last.

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.