Truer Colors

I had trouble putting my finger on it—something wasn’t right. Something had changed. Certainly not the website, but me—I had changed.

I scrutinized my home page—it was too quiet. Though neurological fatigue continued to plague me, it wasn’t as debilitating as in the earlier days of my recovery. In addition, I was less prone to sensory overload, better able to tolerate more color. But it went deeper than that. Something inside me was more awake, more alive, more… what?

When we first constructed the website, I entitled it “Living with Brilliant Colors,” referring to my life post-injury being in brighter colors than in my past life. The colored print was definitely not brilliant—the blue was dusty and the red subdued. The photos were also in muted colors, mostly light blues and grays. They radiated a much needed calm in the roller coaster that was my life back then, during my first couple of years after the bleeds. But I was now less emotionally volatile, more at ease with my self. My brain injury now was not as restrictive, not as frustrating. Also, the ever present fear, of another bleed, of an additional brain injury, no longer lurked around every corner—it only emerged occasionally.

Yes, I still preferred the quiet, but I didn’t need it quite as much, as frequently, as desperately. I was now better able to open myself up to higher volumes of input, sensory and emotional. More and more color had been nudging their way into my consciousness since I began my journey. The light touches of color here and there in the original website weren’t enough. They didn’t fully portray my growth.

Brendan, a friend and graphic artist agreed. He pointed out that now, especially after the publication of my second book, “Threads Around the World: From Arabian Weaving to Batik in Zimbabwe,” my range of colors was clearly broader. It didn’t take much to convince me—the side of me that produced the textile book did now include a wide spectrum and its cover versus that of my memoir of recovery from brain injury, echoed that change.

Though I was ready to add bolder colors to my pallet, I still couldn’t manage the garish—I needed them as they appear in nature. My colors were now radiant, rather than brilliant.

I needed to change the photos and print in my current website. I needed more.


Clean website.jpg

It was so clean, uncluttered, easy to read, to navigate, and it was quiet. It was just right. It was me. I loved it... at first. Actually, I loved it for the first… how long? The first year?

When my second book, “Threads Around the World: From Arabian Weaving to Batik in Zimbabwe,” was about to be published, my website no longer felt right. The second book, about textiles, was so different from the first, a memoir of recovery from brain injury. Now the website needed to address both the brain injury issues and traditional textiles—it started getting cluttered. I now needed separate information about the upcoming book. I needed a separate blog about textile side of my life.

When the book actually came out, the first didn’t fade out of existence. I had to accommodate events associated with each book as well as events that combined the two. The website needed additional pages, more buttons and links.

I spoke to Judy, my editor, and Bekah, my web warrior (mistress sounds a bit off). Or should it be web ninja? Web chief? web and we reorganized a bit here, added a page there. But it seemed to be getting worse. It wasn’t bad, but it wasn’t enough, and no matter what Bekah did to keep things under control, I felt as if it was getting out of hand.

It reached a point where I avoided scrolling down on the home page—there was too much information. I got overwhelmed. It must have much worse for brain injury survivors who were new to the site—so many of us have trouble processing high volumes of data.

It was time to rethink the whole website. Perhaps even construct a new one.


Israel ho!

Israel ho!

Sometimes I forget my limitations. Often I ignore them, on purpose. In particular, when it comes to travel, though I do make some concessions to the bloody brain—I am willing to take my chances.

I knew the trip was was going to be a challenge. I took it anyway.

The flight out of Pittsburgh was uneventful. I arrived in Newark at 2:00 pm on Tuesday. Unfortunately, my overnight flight to Amsterdam didn’t depart until 6:00 pm.

Long stopovers are always problematic. Prolonged exposure to overwhelming sensory input guarantees that the bloody brain will take revenge—inevitable fatigue and predictable headaches with no relief in sight.

The was another long wait before the next flight, to Paris, departed. But Cindy, my travel companion, had the foresight to reserve a pod in the Amsterdam airport’s Yotel for a few hours, where I took a much needed nap, and a refreshing shower.

I always travel light, with carry-on luggage only, to ensure that when necessary, I won’t have to check any of my bags. Because I was up for a journey involving several stop-overs, I kept my bags with me.

The journey from Amsterdam to Tel Aviv involved a (very) short stopover in Paris. Despite my explanation that the chances that my bag making it onto the flight from Paris to Tel Aviv were slim to none, the KLM staff member at the gate in Amsterdam insisted I check it in. Since the onset of the bloody brain, I suffer from anxiety issues—panic set in, preventing me from resting on either flight.

The bag didn’t make it. It was now Friday.

Usually, when I arrive at my destination, I do my best to take a rest to combat the ill effects of the journey and ensure that my visit is not a total nightmare.

After I arrived at my parents’ house in Haifa, instead of having time to rest, as I had originally planned, I had to go shopping for necessities. The bag didn’t arrive until Friday afternoon.

On Saturday afternoon, Cindy and I made our way from Haifa, in northern Israel, down to Eilat, at the southernmost tip of the country—a four and a half hours’ drive. And early the next morning we set off into Jordan, for a day-long tour of the incredible Nabataean city of Petra. We drove back to Haifa the next day, on Monday.

After a lovely five-day stay in Israel, we flew (directly) to Amsterdam, where we spent the next four day. Our time in the Netherlands was wonderful. In addition to consuming delicious food and visiting beautiful sights, we visited several museums and took a couple of canal tours.

I knew I was overdoing it—I was exhausted throughout. Headaches threatened at several points during the trip, both during our stay in Israel and Holland, as well as en route.

Before the trip, I knew I would be overdoing it, even without the various mishaps along the way. But I also knew that it would be worth the price.

And it was, well worth the price.

I arrived back in Pittsburgh suffering from debilitating fatigue, the beginnings of an excruciating headache that ended up restricting me to a darkened room for a couple of days, and a goofy smile on my face.

Spring Writing

I feel lost. I know what I want to write about. I’ve written bits and pieces. But it won’t gel. I’ve tried stepping back to take a break, to gain a better perspective.


What is this story about?

Normally, all it takes is a shower. I stand under the shower head, water streaming down my body, my thoughts meandering, reviewing aspects of an essay I am writing. And by the time I dry myself, I’ve figure it out. Occasionally, I have to repeat the process the next day.

When I wrote about my daughter’s struggles to pass her driving test, I thought my essay was about just that—a story about Sarah’s first driving test. But though amusing, as I’d meant it to be, it fell flat. It just didn’t quite work, it felt as if there was something missing. It came to me while I was in the shower—the story was about my tumultuous relationship with my teenage daughter. Once dressed, I sat at my computer and the words flowed onto the screen.

Over the past couple of months, my writing has felt off. I couldn’t settle into it. No matter what I wrote about. I’ve tried all the tricks of the trade, backing off for a while and coming back to it, thinking in terms of what I’m not writing about, musing about it in the shower—nothing.

Something was wrong, very wrong. But what? Why? Had something in my circumstances changed?

It was mid semester—I was tired much of the time and headaches frequently plagued me, but that was not unusual. The Spring was always tougher than the Fall semester. But in the past, I’d managed to write under similar circumstance.

Was I even more tired than usual? The semester was winding down, which was always tough. But that never bothered me to this extent. Or was it?

My lousy memory often got in the way of me trying to figure this sort of thing out. When life with the bloody brain gets difficult, a worse headache than usual, crippling fatigue that gets in the way of my daily activities, I frequently have trouble figuring out triggers and trying to compare it to struggles in the past.

Usually, when that happens, I turn to my friends Joyce and Cindy—I speak to them daily. Perhaps they could help.

Cindy’s reacted with an emphatic, “Duh!”

She reminded me of my emergency trip to Israel. It was a real killer. It took me even longer than usual to recover from it.

Joyce scoffed. “You’ve been stressing about your parents’ health, and worrying about your sister’s recovery. Then there’s Cindy—she hasn’t been doing well. And Sarah… And it is the spring semester. Need I say more?”

I mentioned my difficulties to Judy, my writing coach. “My writing is below par.”

She reminded me that my writing always suffered in the spring, and this spring was worse than usual with family issues. She suggested that I step back from writing about the tough stuff, and hold off on the larger projects. She encouraged me to stick with shorter pieces, blog posts. “What about your issues with writing during the spring semester?”

It was better, though still a struggle. I told myself that all would be well at the end of the semester—only two weeks to go.

Today is Wednesday. On Friday I gave my last lecture of the semester. Since then I’ve been experiencing headaches. There have been a few headache-free stretches, but there has not been a single headache-free day. And every day there’s been at least one stretch when I’ve been . From past experience, I know that full recovery from the stress and fatigue of the semester will take at least a couple of more days.

In the meantime, I’ll stick to shorter pieces. Like this one.

Story Strong

A student came to my office, looked around my office. As he crossed the threshold, his step faltered. I turned to see what had caused his reaction—he was staring at my calendar, a Jewish calendar with a big Star of David emblazoned on it. 

Photo by Nick Youngson,

Photo by Nick Youngson,

Curious, I scrutinized him, searching for a clue that would explain his behavior. He was tall, his hair was dark and curly, he was suntanned—nothing that would normally call attention to him. 

“I just got back from my country”—he emphasized my country—“where I was diagnosed with a health problem. I will need surgery. I may miss the next test.” Listening to his accent, the way he rolled his r’s, the fluidity, the intonation, I suspected he was an Arab.

I had to ask, “What is your country?” 

He watched me closely. “I am from Palestine.”

I sat up. “Then we come from the same region, I am Israeli.”

He stiffened.

I smiled. “I knew you were an Arab. I’ve met many Arabs over here, but you’re my first Palestinian.”

“I’ve never met a Jew before and I never thought I’d speak to an Israeli.”

“Where are you from specifically?”

Warily we danced around each other verbally, letting out tidbits of information, piecemeal, watching for each other’s reactions. His family had fled Palestine in 1948, during what we Israelis call the War of Independence and the Arabs refer to as the Catastrophe.They now lived in Jordan. I told him of my brother’s sojourn in Lebanon as a medic during the 1982 Lebanon War.

After that initial cautious encounter, he stopped by my office several times. We were intrigued by each other, interested in each other’s stories. 

We all carry labels. Mine include mother, textile artist, writer, the brain injury survivor, Jew, the Israeli. I am all of those and much, much more. If I want people to get to know me beyond those labels, if I want to let them into my life and be part of their lives, I need to tell my story, and I need to take advantage of every opportunity to do so. 

I started writing shortly after I returned home from hospital, where I’d undergone three brain surgeries. I felt lost, as if I’d been dumped in the middle of an alien landscape without a compass. I pored over many websites and read through several books, but found nothing to help me guide me through this new world. I needed to understand what had happened to me, who I was becoming. I decided to record my journey while I bumbled along, hoping it would help me see the bigger picture and gain a better perspective of where and who I was. In time, wanting to reach a broader audience, I hired a writing coach in order to improve my writing skills. She was a fantastic teacher—she transformed me from a journal type writer to an award winning author.

As my stories took shape, I became aware of the importance of storytelling. They allow us to move past the labels, to build trust, to firm our ties with each other, to sustain our humanity.

My student and I could have easily denied each other’s stories. He did not have to create an opening to tell his story by mentioning “his country” and I did not have to step right through the proffered door. We could have easily let labels and distrust guide us. By opening that door to me, he was showing me the utmost respect, and by crossing that threshold, I too, was treating him as a fellow human being, with all the respect he was due.

In order to have any hope for humanity, for peace, we have an obligation to share our stories. We should feel compelled to take the time to listen, showing our respect to our storytellers, to risk peace.



Is this it? Have I finally found that elusive magic pain killer?


Living a full life comes at a price. Among many other symptoms, I suffer from extreme fatigue and debilitating headaches.

Spending my life hiding a darkened room is not an option. I will not surrender to my damaged brain.

I recently returned from an exhausting and wonderful trip. I landed in the U.S. with a goofy smile and the early signs of an excruciating headache.

Because of the ongoing threat of brain bleeds, I have to stay away from any meds that increase the risk. Pain killers with blood thinning properties such as Advil and Aspirin are off limits, as are those that constrict bloods vessels around the brain. The headaches are horrendous, but the chance of another bleed is unthinkable.

As a brain injury survivor, I am hypersensitive to anything that causes neurological effects. I can’t take any controlled substances, such as morphine and vicodin.

Tylenol, my one remaining choice, doesn’t touch my headaches—I might as well take a placebo.

Since none of the usual pain killers work, I’ve resorted to experimenting with natural remedies.

A friend mentioned her success with ginger. When I complained that neither ginger tea nor capsules helped, she suggested crystallized ginger. It was effective—it took care of even the worst of headaches.

I was sure I found my wonder-drug. But several months later, ginger stopped working, completely, for no apparent reason.

My chiropractor urged me to experiment with turmeric, an anti inflammatory. No, it was no wonder-drug. But it usually took the edge off the pain, allowing me to function at an acceptable level. But like ginger, it too, stopped working after a while.

I continued my search—there had to be something out there.

Taking the advice of a fellow headache sufferer, I am now experimenting with CBD (cannabidiol) hemp oil. Though marijuana and hemp are both forms of the cannabis plant and have similar healing properties, unlike marijuana, hemp does not bring on a high, and is legal in all fifty states.

It worked! Like a charm! Once again, I was headache-free. Not only did it take care of even the worst headaches, it acted swiftly.

About to embark on a trip, I stopped off at the nearby apothecary to replenish my supply, and discovered CBD chewing gum, at 10 mg per tablet. Unlike the oil, it did not taste vile, and would not be at risk of spilling—it would be perfect. It was perfect. Though exhausted during the trip, I was able push on, enjoying myself as I hadn’t in years.

Back home, the CBD continued to be effective.

Until yesterday. I woke up with a headache. I chewed some CBD gum—nothing. I took a dropper full of CBD oil—no effect. And the headache kept worsening. Ever hopeful, I alternated between gum and oil throughout the day. By lunchtime, the pain overwhelmed my entire being. I lay in bed, the blinds lowered, dozing fitfully, occasionally whimpering.

From past experience, I knew I’d be spending the next couple of days in bed until the headache ran its course. But come evening, the pain suddenly switched from all consuming to nothing.

This morning, waking to a slight headache, I popped a piece of gum into my mouth. So far so good.

Have I found an effective treatment after all?

Teach the Children

I paused, took a deep breath, then read through the problem again. It still looked like a tangle of black yarn with no beginning and no end.


Okay, okay, I can do this. Line by line. Sentence by sentence.

I read the first sentence: “An island is 2 miles due north of its closest point along a straight shoreline.” Oh God! What the hell does that mean?

“Closest point along…” What? There’s no way I can figure this out.

I felt my heart pounding in my chest. C’mon, breathe.

What if I draw a picture?

“An island...” I could do that.

“2 miles due north of its closest…” Another deep breath. Perhaps if I skip ahead.

“a straight shoreline.” I could draw a straight shoreline.

I reread the first part of the sentence. Oh, the island is north of the shoreline. I adjusted the drawing—shoreline on the bottom, island above it. Oh, 2 miles above it.

Bit by bit, I managed to make sense of the problem, every so often having to inhale deeply to prevent myself from panicking. Once I completed the picture, I figured out how to translate it into variables and equations. Solving it was a piece of cake, I’d already mastered implicit differentiation.

Before the brain surgeries, I would have flown through the problem, thinking it through as I read it, sketching the picture quickly while incorporating the variables into the picture, then writing the equations without any hesitation.

The filters responsible for processing input were damaged by my brain surgeries—pieces of information often carry the same value. My brain had trouble sorting through large volumes of data. I now thought more slowly, much more slowly. Seeing the bigger picture was more of a challenge—I had to think through each piece of the puzzle before I was able to understand how it fit it into the puzzle as a whole. I had to take one step at a time. There were no shortcuts.

My neuropsychologist explained that I’d lost facility but not capacity: my ability to access data and my processing speed had decreased, but my brain power was in tact.

In order to reclaim my role as a teacher, I had to relearn mathematics, from multiplications tables and adding fractions, to college algebra, calculus, and beyond. The main issue I had to contend with was my poor memory. I looked up how to add fractions when I couldn’t help my daughter with her algebra homework. I needed to relearn the quadratic formula in order to solve an example in my college algebra book. Once I got the nudge I needed, I was off and running.

My difficulties taught me that struggling students did not necessarily lack in capacity as I used to believe, that in fact, it was more a matter of facility. I realized that most of my students had issues remembering notation and terminology. Once I reminded them of the relevant information, they had little difficulty solving the problem.

Now, when I teach, I remind them of earlier material, earlier terminology, as I move onto the new, making connections, helping them tie various bits of the material together, showing them that the techniques they have learned throughout the years apply to the new material. I teach them to address the issue of being overwhelmed by the material, by breaking it down into smaller, more manageable, chunks. I show them that though they may not believe in their own ability, they do in fact have the tools, it is a matter of accessing them.

The brain surgeries also damaged my ability to think sequentially, linearly. In the pre-bleed days, I only recognized linear patterns. I was skeptical of other, nonlinear thinking styles. I saw them as fuzzy, lumping them with hazy “woo-woo” terms like intuition and instinct. If a person couldn’t explain how they arrived at a solution, whether correct or incorrect, I regarded them as illogical, as less. It didn’t occur to me that there were other ways to recognize patterns. But now, having had to work my way around the faulty wiring in my brain, I was better able to appreciate different thinking styles.

In the past, when people found out I was a mathematician and responded along the lines of “You must be really smart,” I used to respond with an insincere deprecating remark, “Math is just a different way of thinking.” I still respond with the same remark, but now I’m sincere about it. I no longer regard instinct and intuition as woo-woo. To me, these are “legitimate” terms to describe the hard to explain, nonlinear thinking.

I now work to address the variety of thinking styles I come across in the classroom. When I have trouble understanding students’ difficulties recognizing linear patterns, I work with the class as a whole to figure them out and adjust my explanations accordingly.

My disability also taught me to better bond with people. Having been fiercely independent and socially awkward, learning to ask for help did not come easily to me. But I had no choice—I couldn’t manage on my own. I was reluctant to expose my vulnerabilities, but as I learned to let my guard down, I discovered that by opening myself up to others, they opened up to me. I also learned to make stronger connections. From the shy introvert that I used to be, I grew into a socially adept extrovert.

As a result I was now able to connect with my students, which in turn improved the atmosphere in the classroom and created a better teaching and learning environment.

My teaching skills improved dramatically. And where in the past I enjoyed teaching, I am now passionate about it, loving the challenges and reveling in my interactions with my students.


I pulled away from the gas pump—


I looked to Joyce. “What the hell was that?”

“I think that must have been the nozzle.”

I drew a blank. “What do you mean it was the nozzle? Which nozzle?”

Joyce shrugged. “The gas nozzle. I guess you forgot to take it out.”

My inner volcano, usually dormant, erupted with a massive explosion as I slammed on the brakes.

How dare Joyce accuse me? I forgot to take the nozzle out? “I asked you to keep an eye on it while I was in the store!”

“I guess I didn't hear you.”

Of course she'd heard me. Hadn't she nodded?

Lava spewed over the edge of the crater—she had nodded. I knew she had.

I yanked the steering wheel all the way around to the left and stomped on the gas pedal. The car shot forward, tires shrieking. I circled the gas pump, tore back into the spot I'd just vacated, and jerked to a stop.

Joyce reached for her door handle. “I'll go get it.”

I'll get it!”

I yanked on the door handle, flung the door open, erupted out of the car, slammed the door shut, and stormed over to the nozzle. I bent over, picked it up, marched over to the pump, shoved the nozzle onto its stand, and replaced the gas cap. I wrenched open the car door and threw myself into the car seat.

“Maybe I should drive.”

I clenched my jaw. “No. I'll drive.”

“You sure it's a good idea?”

“Yes. I'll be fine!” I jammed the keys into the ignition.

A wisp of thought floated clear of the ash filled mood—I should have checked the nozzle when I got back from the store. Billows of smoke engulfed the thought. It was her fault.

A tendril of reason wafted out of the crater—I shouldn't drive like this.

I'll be fine.

I had the steering wheel in a death grip. I unclamped my right hand to put the car into Drive, and another tendril struggled to escape the blackened atmosphere—I should stay parked until the ashes clear.

I took a deep breath, willing the thought to stick. A light breeze blew several wisps of reason my way, then several more, until I could no longer ignore their message.

By the time I pulled away from the gas pump, I regained my sanity, though keeping the cap on the volcano was a struggle. Minutes later—though the minutes felt like an eternity—I was able to make eye contact with Joyce and apologize sheepishly for my loss of control.

This wasn't the first time since the brain surgeries that my emotions completely overpowered me, suppressing all reason. It wasn’t even the worst.

Sudden eruptions of rage are not uncommon among us brain injury survivors. Brain injuries often damage and sometimes destroy our emotion-monitors. Conservative estimates indicate that about one-third of traumatic brain injury survivors exhibit aggressive behavior, including explosive rage. I’m one of the lucky ones—though I am more prone to rage than I used to be, I have never fully lost control, nor have I caused irreparable damage.

As my embarrassment over my explosion at the gas pump waned, it was replaced by resentment. I felt cheated—once more the bloody brain had betrayed me. It had been three or four years since I’d lost my temper like that. I'd allowed myself to believe that maybe, just maybe, I was far enough along in my recovery that I was past such things.

I should have known that such a level of recovery was wishful thinking on my part.

When I thought about it some more, I realized that throughout those years there had been plenty of times when I'd gone from being a bit upset to red hot fury in a nanosecond. But I had managed to regain control within seconds—fast enough that no one noticed my true state of mind.

The bloody brain blindsides me over and over again. I've ascribed it to my poor memory: if you can't remember, you can't learn what to avoid, what to watch for, what to do differently next time. If I remembered my difficulties from one eruption to the next, perhaps I'd learn some anger management techniques.

But recently, I realized that “poor memory” is an oversimplification. Wishful thinking carries as much if not more of the blame.

Though I try to be realistic, deep down inside, I keep hoping that the plasticity of the brain, the ongoing healing, will bring me close to the neuro-typical norm.

Issues such as sudden explosions of rage, sever sensory overload, and incapacitating headaches now occur much less frequently than they did during the first couple of years after the surgeries. Often, when there is nothing or no one to jog my memory, I start believing that I have experienced a long rough patch-free spell. And whenever there are signs of improvement, or lack of signs of deterioration, I tend to be optimistic. More often than not, overly optimistic.


I thanked my Facebook friends for their good wishes. “You’ve warmed the cockles of my heart.” scrolled down some more and logged out.

Eyelids heavy, I put my phone down, and rolled over. I was confident I’d get back to sleep. I sank into my pillow, relaxed my muscles one by one, and focused on my breathing…

My thoughts popped in between breaths. Aren’t cockles seafood? Like mussels? No, no, don’t go there. I knew I was in trouble now—that song...

As she wheeled her wheelbarrow
Through the streets broad and narrow
Crying "cockles and mussels, alive, alive, oh"

Alive, alive, oh
Alive, alive, oh

Ever since the surgeries, no matter how tired I am, I have difficulties getting a good night’s sleep. Falling asleep is often a problem, especially after I wake up in the middle of the night. And once my thoughts start darting around, chances are that I’ll stay awake until it’s time to get up.

Last night at 4:45 a.m., I woke up for no apparent reason. I tried to get back to sleep by relaxing my entire body—toes, feet, legs, torso, hands, arms, shoulders, neck, face. But it wasn’t happening. I thought that scrolling through Facebook would help. Sometimes it does. When I found my eyelids getting heavier, I sighed with relief, and tried to fall back asleep. But the word cockles popped into my traitor of a mind.

I knew that cockles, a mollusk, were not kosher. But what about the cockles of my heart? Are they kosher? And if not, what does that mean about me, as a Jew? Do I have non-kosher bits inside me? Is that even a thing?

I had to look it up. Back to my phone. In I found that a cockle is “any bivalve mollusk of the genus Cardium, having somewhat heart-shaped, radially ribbed valves, especially C. edule, the common edible species of Europe.”

Hmmm… “somewhat heart-shaped.” Was that where the phrase “warm the cockles of my heart” came from?

According to the Urban Dictionary, a cockle also refers to the ventricles of the heart. I was getting somewhere. I decided to look up the phrase.

From the website “World Wide Words” I learnt that it means inducing “a glow of pleasure, sympathy, affection, or some such similar emotion.” That made sense.

Satisfied with that explanation, I set my phone on the nightstand and settled back into my pillow. As I was falling asleep, a ditty drifted by, “Alive, alive, oh.”

It’s been several hours now, dawn has come and gone, and I can’t get it out of my mind:

In Dublin's fair city
Where the girls are so pretty
I first set my eyes on sweet Molly Malone
As she wheeled her wheelbarrow
Through the streets broad and narrow
Crying "cockles and mussels, alive, alive, oh"

Alive, alive, oh
Alive, alive, oh
Crying "cockles and mussels, alive, alive, oh"

Journeys and Destinations

On the phone to my friend, Cindy, voice quivering, occasionally leaking tears, at one point sobbing, I hoped for some answers. What was going on? Why was I so upset?

When I noticed that over the last couple of weeks I occasionally became weepy for no apparent reason, I thought that hormones, or exhaustion induced issues with sensory overload, were the culprits.

But today’s meltdown felt different. This was far too extreme to fit the label “sensory overload.” In fact, there had been no high volumes of sensory input to trigger such a reaction..

Except that the previous day, I had suffered a severe bout of sensory overload. It took me by surprise. Though I’d just left a crowded event, I was reacting far too strongly than I would have expected. Also, the event wasn’t all that crowded—I should have experienced little to no difficulties.

During my first few years of recovery, balance issues and tears were the first noticeable signs of having trouble processing high volumes of sensory input. And the tears were always followed by a full blown meltdown. Fatigue tended to make me more vulnerable to sensory input

In time, as I recovered from my brain injury and fatigue became less than an issue, the symptoms of overload, became less obvious, a momentary clumsiness, a fleeting hint of dampness in my eyes. What was yesterday’s episode about? I didn’t think my recent levels of fatigue were any worse than any I had experience over the past few years.



And today, this inexplicable bout of crying… Was it related to yesterday’s difficulties? In the past, during the first few years into recovery, sensory overload was followed by a couple of days of emotional fragility. But that hadn’t really happened in several years.

Was depression the cause? That didn’t feel quite right either. And there was no horrendous headache, the harbinger of another brain bleed. So what was going on?

Cindy, suggested it was grief, but that didn’t sound right. Over the last few years my grief over losses incurred by the bloody brain only emerged rarely, and lasted no more than a few minutes. I was well on my way to acceptance, to the point that recently I started questioning my past insistence that acceptance is a journey, like Buddhist say of happiness.

Shortly after the brain surgeries, it made sense that I was grieving. Back then, I poo-pooed assurances that eventually I would accept my new normal. I equated acceptance with defeat. I could not, would not, live the life of an invalid. I was no malingerer.

My neuropsychologist offered another view of acceptance, that it was about learning to live with brain injury, rather than beinge afraid to live. His explanation sat well with me. Yet the use of the word “acceptance” still bothered me.

As I healed and learned to live with my brain injury, the term grew on me. I became able to accept the term. But I insisted that acceptance was a journey rather than a destination. I was sure that though I was definitely headed that way, I would never actually reach acceptance. But recently, I started believing it was within reach, that I would achieve acceptance soon, that perhaps I had actually arrived.

I asked Cindy, “But why would I be grieving now? What has changed?”

She answered without hesitation, “There’s your sister, and listening to your audio book...” and it all clicked. She was right, I was grieving, in a big way, and for good reason.

My younger sister also has cavernous angiomas scattered in her brain (Yes, it is a hereditary disease.) She also suffered brain bleeds. And few weeks ago, she underwent brain surgery to prevent future bleeds.

I visited her a couple of weeks ago to provide her with much needed emotional support and found myself confronting my own memories of the nightmare that used to be my life. In addition, over the last few days, I’ve been listening to the audio version of my memoir of recovery from my brain surgery (But My Brain Had Other Ideas).

Of course I was grieving.

This also explained the previous day’s case of severe overload—whenever I was emotionally fragile, I was also vulnerable to other stimuli. Overload is not caused just by high volumes of sensory input, but also by high volumes of any type of input, emotional, cognitive, and, of course, fatigue.

I lamented to Cindy, “Will there always be grief?” even though I knew the answer. My emotional reaction was akin to the grief experienced in the wake of the death of a loved one. And grief never disappears, it just becomes more bearable in time, resurfacing less frequently. You merely learn to live with it.

So no, I have not attained acceptance. I never will. Acceptance is a journey not a destination.

Though I am well on my way.