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.

 https://www.goodfreephotos

https://www.goodfreephotos

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.

Labels and Stories

He wore his favorite jeans, soft with wear, in contrast with his white button down shirt, chafing at the collar. He almost raised his arm to ease the discomfort at his neck, but it was safer to stay still.

There was nothing to differentiate him from the men blocking his way, except for the shoes. They wore sneakers. He wore his old dress shoes. And his shirt was wet with perspiration.

And they had machine guns, all pointed at him.

He could see it in their eyes, hard, calculating—are you one of us, or one of them? Friend or foe? There was no way to tell. Until he opened his mouth and his speech pattern gave him away.

Here, the label, friend or foe, was a matter of life and death. The word “stranger” would mark him as a target.

James was black, beaten to death, Jamal was a Muslim, attacked in broad daylight, Kelly was raped, just because she was a woman, in the wrong place a the wrong time.

Labels, whatever they may be, dehumanize, sometimes evoking violence.

 Friends

Friends

If the man at the roadblock were given a chance to tell his story, of his background, his family, and his potential killers were to listen, he would no longer carry the label of stranger.

In most cases, the “wrong” label may merely lead to suspicion.

Fortunately, my label as a mathematician often evokes glazed looks, not violence. And at social occasions, if I add the label weaver, disinterest sometimes transforms into curiosity. And the curious more often than not, ask to hear the rest of my story.

I am not only a mathematician and a weaver. I am also a loving mother, a textile enthusiast, a thriving brain injury survivor, and an award winning author. But however many labels I carry, they only mark the beginning of my story. If you want to know me better, you need to listen to my stories, and I have many. About my love of teaching, my textile collection, my book about ethnic textiles and my memoir of recovery from brain injury, my family. Some I have already told, but most have yet to emerge.

And if you tell me your story, about your journey through childhood , your family, your growth, your life, I will listen.

We need to communicate, so we can connect and shed the label of stranger, so we can become friends.

The Arizona Summer Oven

Arizona Oven.PNG

Hot dry air slammed into me as I exited the cinema. My brain, heavy, pressed against my skull, cutting off my neural pathways. I couldn't breathe. I couldn't move

A thought, sluggish, rose in a thick bubble to the surface of the thick soup that was my mind. It became recognizable when the bubble popped in slow motion. “Like exiting the hotel in Phoenix.”

The first stop after being discharged from the hospital in Phoenix where I underwent the surgeries, was the nearby hotel. The next morning, it was time to return home.

Standing in the lobby a few steps away from the entrance to the hotel, swaying in a non-existent breeze, leaning heavily on my walker, I watched for the limousine that was to take us to airport. When it finally pulled up, desperate to get off my feet, hanging onto the walker for dear life, I shuffled over to the entrance.

As soon as the automatic door slid open, a blast of Arizona air slammed into me, filling my lungs to capacity— I couldn’t inhale, I couldn’t exhale, I couldn’t move.

It seemed like an eternity before I became able to think. The notion of leaving the cool air behind me was abhorrent. But I realized I had no choice--my grip on the walker was growing weaker as my balance deteriorated. I had to get off my feet, to rest my traumatized body. In pain, I made my way across the endless sidewalk. I focused on my feet at every step, willing them to wade through the heat radiating from the sidewalk. The Arizona oven-like heat hindered my progress, every motion a struggle.

Did I open the limo door? I don’t remember. I couldn’t have. It must have been the driver. I do remember finally being able to breathe unimpeded when the cool air from the interior mingled with the hot as I neared the open door. And I recall a brief moment of hesitation while I tried to figure out how to enter the vehicle. The next thing I remember was throwing myself into the dark interior. I must have turned the walker and positioned myself between it and the car. I must have pushed off the walker.

I recall being surprised as I sank into the plush upholstery. I luxuriated in the softness of the cushions that cradled me--this was the first time since the third surgery that I was comfortable, that I wasn't in pain, the first time I felt a wisp of hope about my future as a brain injury survivor.

 

Mum

 Pixabay https://pixabay.com/en/flash-thunderstorm-super-cell-2568383/

Pixabay https://pixabay.com/en/flash-thunderstorm-super-cell-2568383/

I remember standing with Mum at the window, watching a thunderstorm. I remember oohing and aahing over the light show. Taking fierce joy in the pouring rain, the glorious lightening preceding the crash of thunder, I forgot my brothers and my mother beside me. At one point, shortly after the show began, Mum retreated to stand behind us. I assumed that she was merely making more room for us.

It was only years later that I learned that she was terrified of thunderstorms.

We went to the beach almost every weekend during the summer. I remember Mum sitting in the shade reading a book while we played in the water—she didn’t know how to swim. She tried learning a couple of times, but was unsuccessful. She told me she was too old to learn, too afraid of the water.

I remember tumbling around in the waves, losing all orientation, the sand churned up, I couldn’t see. I had to trust the waves to throw me ashore before I ran out of breath.

Dad was usually with us in the water—I remember swimming along side him, reveling in his company, proud of my skill and stamina. We often swam far, out of Mum’s sight. Was she afraid for me? Perhaps even terrified? I never thought to ask.

I was an adult when she finally told me that she had encouraged my brothers and I to take on activities she couldn’t participate in because she didn’t want us to miss out as she had. She didn’t want her fears and limitations to affect us.

Mum was born with a condition named talipes, more commonly known as clubfoot. In her case, both feet were turned inward at a ninety degree angle. By the time she was school-age, she underwent several surgeries to correct the problem and, but they were only partially successful.

I recently asked her how it impacted on her life. She told me she couldn’t run and when she walked up stairs her feet turned in. She added that though it was limiting and at times made her feel self-conscious, she didn’t see herself as disabled.

I know her limitations went beyond her inability to run. She loved cooking, but every so often, she had to take breaks to put her feet up. She also had trouble finding shoes that fit properly and didn’t hurt. In addition, she had issues with her balance. She never learned to ice skate or ski, and though she tried, was never able to ride a two-wheeler.

Despite her difficulties, Mum excelled at some physical activities, belying her appearance—she was under five feet tall, looked frail, and was visibly unsteady on her feet.

She loved dancing, and was good at it, as was my father. They danced everything from the foxtrot, salsa, and waltz, to jazz and rock. At parties, their skill often elicited audience applause.

Mum was also a wicked table tennis player who loved surprising first-time opponents with her skill. After crushing her rivals with her deadly serves, powerful volleys, and good reflexes, her opponents often refused her offers for a rematch.

She may have been unable to run, but she usually walked at a fair clip. I remember myself as a kid, having to hustle to keep up with her. And although she never joined us on long hikes over uneven terrain, she often walked down to the shops and back—a good twenty minute walk each way.

Now, her age has caught up with her. Her balance is more of a problem as are her issues with her feet. She walks at a slower pace and no longer dances. She uses cane. But I strongly suspect that given the opportunity to play ping-pong, she’d throw all caution to the wind, and crush her opponent, probably knowing full well that she’d pay the price later on.

Was she the source of my courage and resilience through my recovery from brain injury? The reason that despite being fully aware of my limitations, I refuse to give in to the bloody brain completely? Why I continue to push some of my boundaries, knowing full well that I’d pay the price later?

Brain Injury--Pros and Cons

Cons:

tulip.jpg
  • Loss of independence

  • Sensory overload (i.e. difficulties processing sensor input)

  • Emotional volatility (including depression, anxiety, rage)

  • Headaches

  • Seizures

  • Memory loss

  • Short attention span/easily distracted

  • Damaged sequential thinking

  • Trouble with task initiatio

  • Pros:

  • Heightened awareness (including self-awareness)

  • More in tune with environment

  • More of an extrovert

  • Improved ability to connect with people

  • Increased ability to discover the passion and joy in life

  • Heightened creativity

  • An amazing journey

P.S. Through my brain injury, I discovered writing and rediscovered teaching. I am an author and much better teacher.

P.P.S. My gains far outweigh my losses. I wouldn't want to repeat the experience, but I wouldn't undo it. Through my journey, I have grown as a person and I like who I have become better than the old me.

On Death

I’m sure there are many of us who while experiencing a life threatening ordeal question our feelings about death.

 The Lady of Shalott by Henry Peach Robinson (1830-1901) (labeled for reuse)

The Lady of Shalott by Henry Peach Robinson (1830-1901) (labeled for reuse)

I remember my fear of dying during my first few months after my brain bleeds. Each seizure scared me—would this one kill me? Every brain MRI or a CT scan brought on fear that I would die inside the machine, alone.

Between extreme headaches, seizures, and cognitive issues, my entire world revolved around the bloody brain. Doctors’ appointments, physical therapy, ER visits, and hospitalizations took up much of my time. I could no longer drive, work, or mother. I shuffled through my days, focused on survival, merely existing.

After I started taking anti-seizure meds, the seizures were milder and occurred less often. Around the same time the frequency of my trips to the ER diminished, and my life, such as it was, settled into a pattern.

Dependent on others for rides and unable to work, I spent most of my time at home, alone. Tiring easily, subject to crippling fatigue, and prone to vertigo and loss of balance, I was incapable of doing much.

One day, waking up from a much needed nap, my mind wandered, and the topic of death emerged from the crevices of my mind. My quality of life, or lack thereof, seemed unbearable. How much longer could I tolerate with it?

What if I were to reach the point where I felt the need to actively seek death? I wouldn’t want it to be messy and it wouldn’t be right to ask anyone to help. The only logical option was medication. I would need something effective. Was there anything in my growing arsenal of medication that would work quickly, with little to no discomfort. I started inventorying the meds on my night stand. Anti-seizure-meds? No. Advil—maybe. What about blood pressure—

I slammed the lid down on my thoughts.

It was one thing to experience a fleeting thought about suicide, but quite another to explore methods. And so rationally, too.

I have since been diagnosed with severe depression and have experienced several bouts of suicide ideation.

Several years into my recovery, yet again waking from a nap, my mind roamed. Once more, I found myself exploring my feelings about of death. As my thoughts wandered, it occurred to me that death no longer terrified me  as it had during the early days, after the bleeds.

Intrigued, I dug deeper. Did these thoughts count as suicide ideation? It didn’t feel the same. There were no shades of “they’ll be better off without me” or “I can’t bear living like this.”

This felt more like a state of being, a level of acceptance.

I live with an axe hanging over my head, though it is usually off my radar. I am very much aware of my mortality—the threat of new bleeds will always be with me. Angiomas can become symptomatic even if they don’t bleed, and I have several remaining in my brain. Also, angiomas can grow back.

As I explored my emotions, I realized that my awareness of of my mortality has expanded beyond the bloody brain. When I travel, and encounter passengers who are afraid of flying, I wonder about death from a plane crash. Every time the thought appears, I shrug internally. There isn’t anything I can do about it.

Searching through my inner files, I found that I couldn’t detect any traces of fear of death from causes beyond my control. Of course, I’d rather it were quick and not too painful. And it would be nice if the timing weren’t too inconvenient.

I certainly don’t want to die. In particular, I don’t want to harm my loved ones, especially my kids.

Also, I really like my life now. I would really like to see my memoir do well and make a significant difference in the world. I would like to finish the other books I'm working on.

But ultimately, if it happens it happens.

Moving on.

 

The Other Shoe

Back from a trip to visit my family in Israel, I’m waiting for the other shoe to drop.

Shoe.jpg

On my first day back, I was exhausted, which was only to be expected. After all, I was jet lagged and combined with the usual bloody brain-related fatigue…

The bloody brain has taught me long ago that the other shoe would drop, at some point—an excruciating headache was bound to compound my fatigue.

But there was no headache.

On day two, still no headache, nor on day three.

Throughout my recovery, traveling drained my resources. During my trips I spent as least one day confined to a darkened room with a headache that defied words. And I came to expect being incapacitated for at least a couple of days upon my return home.

At the end of that third day, a thought crossed my mind—could it be that there won’t be a backlash? Then I made the connection—after my return from the last couple of visits, the headache was less intense than it had been in the past and it lasted no more than a day. And now, here I was, back from a whirlwind trip, at the end of my third day since my return, and there was no sign of the price I’d expected to pay, even though I was exhausted. Clearly I was continuing to heal. Moreover, I was making significant progress in my recovery.

I couldn’t help but allow myself to hope. Had I got away with it this time? Would there be no price to pay? I took my musings a step further: had I recovered sufficiently from my brain injury that there were no horrific headaches in my future? Could it be that in time, I would be completely back to the old me, the neurotypical me, as I was before the brain bleeds?

I caught myself at that last thought. I always prided myself on being realistic—I knew better than to be that optimistic. Though maybe, just maybe…

During the night after my third day, the bloody brain struck with a vengeance with a headache that saturated my entire world with pain. None of the pain killers I tried even took the edge off and the agony seemed to last forever.

The following evening the headache started abating and by the time I retired for the night, it was gone. I finally became able to think and my realistic nature took over. The damage to my brain was definitely here to stay. I would never recover fully.

CBD

CBD.jpg

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

Life in the aftermath of the brain bleeds and subsequent surgeries is harder, it is also richer. In addition to returning to my full-time job as a college professor, I became a writer and public speaker. I also travel extensively, nationally and internationally.

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?

No Sweat

 20100321 Car Accident 004 photo credit: cygnus921

20100321 Car Accident 004 photo credit: cygnus921

I asked Sarah to alert me when I got too close to the side of the garage door.

I slammed on the breaks when I heard the crunch.

“You’re too close.”

We both burst into laughter. It was hilarious, and the car… I shrugged internally—was already embellished with a couple of scratches.

Joyce broke the hamsa my sister gave me. I felt my anger just beneath surface, about to explode. It meant a lot to me—a thoughtful housewarming gift from sister, for good luck. But I immediately extinguished it—it was just a thing.

My student, Amanda, hesitated to hire a tutor, despite needing one badly. I knew she would fail the course otherwise. My only concern about offering to pay him was that Amanda might feel weird about it. After all, it was only money.

In my past life, I would have yelled at Sarah. It would have taken a lot more out of me to put a lid on my anger towards Joyce. Would it have even occurred to me to pay for Amanda’s tutor?

Life is too short.

I no longer sweat the small stuff.

Breathing

 Body of Sternum Frontal  en:Anatomography

Body of Sternum Frontal en:Anatomography

I remember hearing myself yell and the box of books shifting as the corner slammed into my chest. I don’t remember much else about the actual fall.

I knew I didn’t hit my head—was that my first thought? Did I yell because of my fear of another brain injury? I am head shy, ever since the brain surgeries.

I remember lying on the rug telling myself I should assess the damage. I recall hesitating, reluctant to find out. I couldn’t afford to seriously hurt myself—I had to teach the next day and travel the day after.

No pain in my head—check. Though I did feel a headache coming on. No signs of breaking or spraining anything—check.

I was still lying on the rug when I became fully aware of the pain. My knee was burning—just a scrape. The pain in my chest—

A memory slammed into me—a painful sternal rub. I was in the neuro-ICU after I was diagnosed with a CSF (cerebral spinal fluid) leak. In the hopes that the leak would heal itself, the doctors administered a lumbar drain to relieve pressure from CSF at the site of the leak.

The lumbar drain involved a tube running from my spinal column through the small of my back, into a bag (similar to a reverse IV). During this procedure, the tube got dislodged twice, causing CSF to leak through the hole in my back, creating a puddle under on the bed. Each time, to plug the leak, a neurosurgery resident stitched it up. In both cases it was done without anesthetic. Apparently, the procedure didn’t even warrant any, even a local.

The first time it happened, the nurse offered a hand for me to squeeze every time the needle jabbed into me. I vaguely remember squeezing it so hard that I later apologized for causing him pain.

During the second time, it was up to me to deal with the pain, alone. The nurse offered no help and I didn’t have the wherewithal to ask for it.

The resident jabbed through my skin again and again, seemingly for ever. The room was dark. It couldn’t have been, he had to see in order to stitch me up. I must have lost consciousness.

My next memory was unbearable pain in my chest. Why was the resident rubbing my chest with his knuckles, and applying so much pressure? Only recently did I learn that he was performing a sternal rub. Sternal rubs are used to assess the level of consciousness.

He rubbed so hard my chest and the resulting pain so intense, I had trouble breathing. The next day, my difficulties worsened. I was only capable of taking shallow breaths. An x-ray determined that nothing was broken—I was merely bruised.

To me, there was nothing merely about this pain.

And now, after the corner of the box broke my fall, I was having similar difficulties breathing. And like that time, in hospital, the bruising subsided a few days later, and with it my breathing issues.