Laughing Away the Maw

As I crossed the threshold into the hospital my inner voice chanted, “Dead man walking.”

Did I actually say it out loud?

During the early days after the bleeds and surgeries, I relied on my sense of humor to keep me sane.

Right after I set dates for the first two surgeries, I phoned Cindy. I was shaking, my heartbeat deafening. Through a thick fog, I heard a quavering voice telling her the news. And the world came to a standstill. The silence was suffocating.

A lifetime later I heard myself whisper, “I’m freaking out.”

I could hear the terror in her response, “Me too.”

But once we got over that initial shock, we got to work, addressing our fear with humor. We initiated a list of things you don’t want to hear your neurosurgeon say. They ranged from “Oops!” to “Do you remember how they did it on Grey’s Anatomy?”

As Dr. Gina Barreca wrote in a Psychology Today article, “We can use humor to put our fears into perspective. Humor addresses the same issues as fear, not to dismiss them, but to strengthen our ability to confront them and then laugh them away from the door.”

laughing author.JPG

Much of the time, jokes and laughter were within reach, to manage my struggles with grief and despair, anxiety and fear. When I my balance and vertigo were so bad that I had to retire, stumbling, to my bedroom, I told Cindy that the waaves were getting higher and this ship was going down. And when an acquaintance told me, “You look good.” I chuckled. “You don’t look so bad yourself.”

Most laughed with me. Some smiled weakly and others weren’t sure how to react.

But sometimes the jokes dried up.

At times, depression or terror invaded my entire being. And there was no inner laughter to be found. But every time that happened, with a little help from my friends, I rediscovered it, usually within minutes or hours. In the absolute worst case, it took a fortnight.

The first two brain surgeries, to remove the angiomas that had bled, were planned, and I had plenty of time to sure up my defenses. But the third surgery, an emergency, was different. The numbness from the shock lasted longer and my sense humor failed me—I was no longer the one who initiated the jokes. This time, I had to rely on my support team to come to my rescue. At first, I responded with a weak smile, but as they persevered, the chuckles and then laughter became more genuine, and I emerged from the numbness.

To this day, I occasionally contend with depression and fear, and the norm is that within minutes, the laughter returns. Humor has helped me immeasurably through my life with brain injury.

Just a few days ago, I was on the phone to a fellow survivor who recently underwent brain surgery. We were discussing our various deficits, the serious parts interspersed with jokes. Talking to him, I realized—he’s not a victim. In fact, I expect him do more than survive—he’ll thrive. Within the foreseeable future.

Living a full life with a brain injury, or any other scary condition, has to come with laughter. Ultimately it’s about thriving, not only surviving.

Scars Revisited

rubscar.jpg

“I was particularly riveted by the chapter on your scars. You suddenly went through this period when you had to see them.” Kit surmised that my journey was not only of healing, but also of acceptance. “Would you talk about that a little bit?”

As Kit spoke, as if on its own accord, my hand went up to the scar from my brain stem surgery. And as I started responding, I found myself running my index finger up and down the tail end of it, the part that lies below the hair line. And I realized that I still need to know that they’re there, I still need that validation.

Like many brain injury survivors, my disability is invisible. Many of us, if not all, at some point in our recovery encounter outsiders who suspect that we are over dramatizing, malingering, that in fact, we are back to “normal” but have embraced victimhood. Like many brain injury survivors, self-doubt is a constant companion. Perhaps I am an attention seeker, perhaps my symptoms aren’t quite as bad as I make them out to be. Am I just needy, whining, lowlife?

I’m one of the “lucky” ones, I have tangible evidence of my injury—the scars from my surgeries. Most brain injury survivors, many of them due to concussion, have no such evidence, no such validation. What do they do?

We were in the Boulder Book Store at a book signing for my book, But My Brain Had Other Ideas. It was during the Q&A session. I got a lot of questions and comments. Some of the comments caused me a bit of a twinge as I recalled the early days of recovery, the daily struggles, the darkness. All of the questions made me think.

Wendy, whose daughter had also undergone brain surgery, commented that brain injury survivors often do function like neuro-typicals, but what outsiders don’t see is what it takes out of survivors—after brain injury, the brain has to work harder to achieve what most people do without any side effects.

Her words resonated with me. By the end of a day at work, having functioned at a “normal” level, I’m completely drained—there’s a price to be paid. Recovering from the book event is still ongoing—exhaustion, rip roaring headaches, vertigo. Earlier today, I told a friend that I’m sick and tired of being sick and tired.

As I write this, I run my  finger up and down the tail end of my scar.

Kit was right. My journey was not only of healing, but also of acceptance.

The journey is ongoing.

Memories of Memories

What prompted me to look up the messages people sent me while I was in hospital for the brain surgeries?

I sit here, tears streaming down my cheeks. I’ve read these messages several times already. And each time, I’ve become emotional, inconsolable. I always remain fraginle for the rest of the day. Sometimes it lasts into the next. I’m not sure why.

Brandonims.jpg

PTSD? The outpouring of love and caring from friends and family? My father’s messages, written in the form of poetry, are always the trigger. And my family’s memories of my childhood form a catalyst.

Dad wrote on the day of the first surgery:

Was it anger or pain? We never did really know,
The roll of fat at the back of your neck bright red with rage (or misery).
Today, we would probably be warned of 'lactose intolerance',
But then, we were just told to 'let her cry', and eventually you slept.

As a toddler, you hung on to your 'clobber bag'.
I don't think I ever really knew what was in it, but the bag was always there:
A large plastic bag of toys, treats, bits of paper, pulled along from room to room.
At night, it stayed at the foot of the bed and in the morning
You sometimes found a second bag of treats, so we could sleep

We relied too much on 'big brother' to take charge, forgetting how small he was.
But he really didn't seem to mind: "cummon Deb", he said,
And off the two of you went, up the ladder of life

Simon, my younger brother, sat his office at work at the Technion, the Israel Institute of Technology, waiting for news. He too reminisced.

I am sitting at work staring blankly at the stuff I need to do while thinking of you. Looking at Dad's message set me off with my own memories from our childhood. The first to come up has to do with solid as well as vocal objects being projected from my room to yours over the top of the wardrobe. Next is the scene with the glass door. Hopper throwing you comes after this. More follow.

Jonathan who was with me during the my times in surgery also recalled scenes from our childhood: I have this fond memory of holding your hand and walking around with you during recess at school in Geneva, talk about a lifetime ago.

.

The surgeries took place a decade ago. I am thriving, living a full life. I am a more authentic version of me than I ever was, more comfortable in my own skin, happier than I used to be in my past life. Yet their words still move me. Even now, as I write, the tears continue to flow.

Why? Shouldn’t I be over it by now?

Survival

I reread the poem for the umpteenth time, and like the first time, shortly after my second brain surgery, I teared up.

Mum came to be with me in Phoenix during the surgeries. Dad had to stay at home, across the ocean.

Throughout my hospitalization, he expressed his fears, anguish, and love through poetry. He sent me a poem a day. Each one touched me as poetry never had, bringing him closer to me.

August 10, 2007

https://commons.wikimedia.org/wiki/File:Joyland_Wichita_Roller_Coaster_Down_1997.jpg

https://commons.wikimedia.org/wiki/File:Joyland_Wichita_Roller_Coaster_Down_1997.jpg

"Life's funny". "Compared to what?"
The problem is we just don't know.
What 'selfish gene' caused your angiomas
(Or mine, for that matter)?
Can medical miracles can protect the kids?

Months of worry and now, sun through the cloud.
But still no way to put the clock back.
What happens next? What happened then?
Wanting for it all to be over,
But knowing it really can't be,
Still, some respite from the roller-coaster,
These endless waves of hope and fear.

Time never does march on
But only staggers from side to side,
Dragging us from one 'event'
To the next. But what a ride!
"It's good to be alive, as long as you survive."

Resilient?

A friend suggested that I give a talk at a conference entitled “Women Of Resilience.” I wasn’t sure why she would think I would be an appropriate choice for a speaker. I wasn’t even sure about the meaning of the word—I had a vague notion that resilience had something to do with strength, which seemed odd.

She said, Look what you endured, how far you’ve come. you’re resilient.”

WomenofResilience.jpg

I was skeptical. I looked up the definition

According to the Dictionary.com, it means, “recovering readily from illness, depression, adversity, or the like; buoyant” and Merriam-Webster defines the term as “tending to recover from or adjust easily to misfortune or change.” Synonyms for the word include strong, sturdy, bouyant, irrepressible, adaptable.

I would agree that the bloody brain counts as adversity or misfortune. But I wouldn’t say that my recovery was quick or easy. It’s been more than ten years now, and I’m not fully recovered. In fact, there is no full recovery from severe brain injury. I’ll never be the person I was in my past life, which actually suits me fine. Life is certainly harder than it used to be, but the bad patches are tolerable. Also, I like myself much better now—I would describe myself as more human. And I’m without a doubt more comfortable in my own skin. Nope—I would not want to revert to the old Deb.

I don’t believe I was bouyant, but to be sure, I looked that up as well. Wordsmyth’s definition was “marked by lightheartedness or cheer,” which made my hackles rise—when you feel like crap, you are not cheerful. Yes, I joked about it at times as a way of coping—one can’t be miserable the whole time. In fact, there were plenty of times when I was actually happy. But the word cheerful implies I was jumping up and down for joy. Nope, I definitely wasn’t joyful.

Was I strong? Did it require strength to make it through to where I am now? Possibly, in some sense of the word. But I’m a tad uncomfortable with that term. In the early days, most of the time, I felt as if I was merely existing, barely managing to put one foot in front of the other.

Nope, I don’t feel resilient. I’m just me, a survivor. But I couldn’t deny that some aspects of the word did apply to me. I thought I might as well send in a proposal to speak at the conference—the organizers could judge whether I fit their notion of resilience or not. It certainly couldn’t hurt.

Not only did they deem me a good fit, but they seemed excited about the prospect of me giving a presentation.

I spoke of my journey through the frustrations and the tears, the obstacles and the triumphs, the grief and the joy. I told them of the gains as well as the losses.

And I got a standing ovation.

Perhaps I am resilient.

Testing Testing

It was my son’s idea to add bonus problems to my tests. “Have them draw an octopus. That’s what one of my professors had us do.”

octopus.JPG

I loved the idea—the students, many of whom are subject to math anxiety, could use some comic relief during the test. I added a problem: “Draw a picture of an octopus with a fake mustache and a top hat.”

Students have different test-taking strategies. Some read through all the problems before they start tackling them, others start at the beginning and keep going, skipping over harder problems and come back to them later, as time permits. Occasionally, a student gets stuck on a problem but for some reason has difficulty moving on.

The bonus problem was the last one on the test. I didn’t mention it to the students—I wanted to see their reactions when they reached it.

After I gave the okay, all nervous chatter and laughter ceased as heads bent over the papers. Only a couple of students (out of fifty some) chuckled within the first few minutes—were they the only ones to skim through the entire test before starting to tackle the problems? As time wore on, every so often I’d hear a chuckle or I’d see a students raise their head to catch my eye and smile.

At one point I announced to the class that if they do get stuck on a problem, they should skip over it and riffle through the pages and work on a problem they feel more confident solving. For a while after my suggestion, the frequency of the smiles increased.

When my teaching assistant and I sat down to grade the tests, the drawings provided comic relief from the onerous task.

All but one student surpassed me in their artistic talent—have you ever seen a stick-figure-octopus?

Another student drew a shapeless blob on the octopus’s head. “I guess he didn’t know what a top hat was.”

Several students drew less than eight tentacles. The teaching assistant laughed out loud. “Should I take off one point or two?”

Since then, I’ve added a bonus problem on every test and final exam I’ve administered. Some more creative than others, from listing names beginning with the latter s to writing their favorite number and explaining their answer.

Every so often, we have theme days, with a photo op after class. We’ve held Sock Day, Hat Day, Crazy Hair Day and many more. The favorites seem to be Fake Mustache Day and Balloon Day. One of the bonus problems was to come up with idea for theme days.

Another source of ideas for bonus problems is my grand-dog, Gus. All of my students have met him, and they all seem to enjoy him. On one test I asked them to describe Gus’s personality. And on another I asked, “What is Gus’s role in the course?”

It’s time to put together the first test of the semester. I’m set for a bonus problem, but I can’t compromise the integrity of the test—I won’t divulge any additional information.

Omar's Shop

This was my first time striding purposefully through the alleyways in the Old City of Jerusalem. During previous visits, I’d always strolled along taking in the sights and smells of the bustling market surrounding me, peeking into a pottery shop here, stopping into a textile shop there, pausing to breathe in the aroma of herbs and spices.

But this time was different—we were headed to Omar’s shop.

Jonathan, my older brother, knew it wouldn’t take much to convince me. “He has fabulous textiles, traditional ones, not like the newer shops—you’ll love it.”

Omar.JPG

As an ethnic textile aficionado and collector, it wasn’t a question of going or not going, it was a matter of timing—how soon could we go?

It took a couple of years, but we finally made it to Jerusalem, to Omar’s shop. I waited impatiently at the entrance to the shop as Omar and his brothers greeted Jonathan enthusiastically. Finally, it was time to cross the threshold.

As soon as we entered, my eyes popped out. Piles of pillow covers saturated with Palestinian embroidery, Druze designed place mats in earth tones. And what was this, suzanis? Pillow covers, wall hangings, embellished with the chain stitch embroidery in the Uzbek tradition. What were they doing in the region, in the Old City of Jerusalem? How did they get here?

After Jonathan told Omar of my interest in ethnic textiles, he pulled me away from the entrance to his shop, to guide me into a well lit interior. I forgot to breathe—wherever I turned, I saw stunning textiles. Even more spectacular suzanis, lively block-printed wall hangings from Persia, Indian mirror-work, and so much more.

Mouth agape, my gaze swept back and forth, not knowing where to start, until a pile of suzani pillow covers caught my eyes and held them. Unlike those in the entrance to the shop, these were silk on silk, the embroidery even, the yarns variegated in color… natural dyes? I was mesmerized.

I turned to Omar. “I don’t understand—these aren’t locally made.”

He smiled and nodded. “Suzani, from Uzbekistan.” then added, “You know textiles. Sit down and I will bring to you.”

And boy, did he. He disappeared into yet another room in the back and came back, laden with a pile of folded suzanis. He spread one gorgeous textile after the other at my feet. I gasped at each one. The colors… the designs…

The bigger ones, the most exquisite ones, cost more than a thousand dollars. Perhaps one of the smaller ones. But no, though less expensive, the prices were in the hundreds. Perhaps… No. I couldn’t. I’d set myself a one hundred dollar limit when we set out on our trip. I tried to rationalize—I could justify two hundred if I promised myself not to buy anything else. But I’d originally come here for Palestinian embroidery… Perhaps... No. There was no way I was walking out of here without a piece of Palestinian embroidery.

Omar saw my struggle. “I have some pillow covers you might like.”

He trotted out to the back room, and returned with his arms laden with beautiful suzani embroidered pillow covers. I breathed a sigh of relief—I’d be happy with a couple of those.

After choosing two of them, Omar unrolled a rug out on the floor. “You know textiles. Where is this from?”

I took a close look. “It looks like a Berber rug from the Atlas mountains in Morocco, but the design is not traditional.”

Omar beamed. “That’s right. It’s a modern design.”

I could see Jonathan beaming too. With pride?

I wandered around the shop, admiring the ikat woven coats from Uzbekistan. I looked at the prices and turned away. Maybe on my next visit.

I noticed a pile of the Palestinian embroidered pillow covers in the front room. I pawed through them but couldn’t find what I wanted. I approached one of Omar’s brothers and pointed to them. “Do you have better quality ones?”

Like Omar, he went into the back room. He approved of my choices. “You have good eye.”

I came away with four stunning pillow cases, a Persian wall hanging, a book about Palestinian embroidery written by Omar’s father, a goofy smile on my face, and the conviction that I’ll be stopping by on my next visit to Israel.

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.

calendar.PNG

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.

Writing Hand.jpg

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?