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.

 

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.

Jersey Shore

I paused at the bottom or the steps to the beach—nostrils flaring, I inhaled deeply, relishing the salt air as it filled me entire being.

Dad contemplated the watermarks on the wall. “Look how high the water reaches at high tide.” I’d heard the waves pounding at the sea wall the previous evening.

gentle waves.jpg

On our way towards the water line, I paused every so often to admire the well defined tracks I was creating in my wake.

We hesitated when we reached the water—to the left or right, cliffs or fishing boats? I shaded my eyes, looking both ways. “The cliffs look more interesting. We can explore the boats tomorrow.”

Gentle waves lapped at the shore, curved under at the forefront, leaving arcs of foam on the wet sand when they retreated. I glanced behind me—the water softened our footprints as it washed over them, once, twice, three times, until they faded altogether.

Tiny holes—“made by crabs,” Dad said—emitted small bubbles as the ocean drew the water back in. Wondering what happened to those crabs at high tide, I turned towards the sea wall. Dark wet sand faded into white. A few clusters of pockmarked rocks, more sand, and then the wall. A wide expanse of dry scrub grew beyond the wall.

Dad pointed further inland to towers made of what? Stone? Concrete? “German fortifications. From when the Nazis occupied the Channel Islands.”

Tiny silhouettes of a dog and his person ran along the top of the wall. Another dog ran in the scrub, weaving his way between the shrubs.

Dad suggested we explore the tide pools.

We scrambled over the rocks, searching for sea life in the pools. Dad smiled. “We used to do this with Granny. We usually found something, minnows, small crabs.”

The only evidence of life was seaweed swaying in the almost imperceptible current. Dad and I gave up after peering into half a dozen pools.

We trudged back towards the water, our feet sinking into the dry sand. Dad proposed that we head back to the hotel. Loath to end our time together, our easy companionship, I turned towards the cliffs. A black maw caught my eye, the entrance to a cave. “I bet we could climb up to it with no trouble.”

Dad hesitated. He had an odd look to his face. He seemed… reluctant? I was puzzled—the Dad I knew would have been eager to explore further, especially if it involved climbing rocks and investigating a cave. I looked at my watch—we had plenty of time before we had to get back for breakfast.

And then it clicked—he would have trouble with the climb.

I’d forgotten. He was in the advanced stages of macular degeneration—he’d reached the point when he could only see fuzzy shapes, colors and contrasts.

Tlacalula

I pointed. “I wonder what that is.” then realized—crickets, very dead. Fried? Grilled? How would you eat them? As a garnish? In a sauce over rice? A snack, like sunflower seeds?

Instead of the eeew I expected from my inner voice, I heard myself wonder whether crickets are kosher. After all, locusts were. Only then did the delayed eeew pop into my head. I admonished myself, they probably taste like chicken, like frogs legs. I’d eaten frogs legs, and they did taste like chicken, though more delicate. But crickets would be crunchy, like cockroaches. And the eeew won, for now.

We walked past racks of hand made huipiles, mass produced skirts, and handwoven rugs. A skirt would look great with the huipile I bought in Oaxaca. I turned away and hurried to catch up with Gail. Maybe when we get back to Oaxaca. But I knew I wouldn’t get a skirt—there’re so many other even more enticing things to buy. And I’ve already spent enough money.  I was taken aback by my next thought. Perhaps when I come back to Mexico next-- I was coming back?!

A rack of colorful aprons distracted me. I do need aprons for “Cooking with Calculus,” an online calculus course I was planning on putting together for the math-wary. On our way back.

We continued weaving our way through the market stalls, Gail, Cindy, and I. I breathed in the aromas, mango, papaya, guava. Guava? I breathed in more deeply. I loved that smell, ever since a friend from my college days brought a box full from family's orchard. Or is it grove? We ate them throughout the lecture, filling the room with the sweet aroma, the texture like a ripe pear, though less grainy.

A turkey strutted, its head bobbing and crest wobbling with every step. When it (He? She?) veered off to the right, its owner cuffed him on the head, as if he were a child. It didn’t gobble, or falter in its step. Is he resigned to its fate?

All three of us needing a break from the high volumes of sensory input, we stopped for a spell in a spacious plaza, reveling in the relative quiet. I tried not to look too closely at the stray dogs searching for scraps of food. I caught a glimpse of a puppy with a raw wound on his paw and averted my gaze.

When we felt rested, we rejoined the crowds.

I sniffed at a basket filled with an unfamiliar spiceand coughed, quickly muffling it with my arm. Cindy gesticulated towards it, miming, “Okay to taste?”

Given permission, she dipped the tip of her index finger into the orange powder and brought it to her lips. “Mmmm… spicy.”

She then asked Gail to translate for her. “What does it have in it?”

Expecting one of the ingredients to be chili peppers, I was surprised to learn that the only ingredient that could possibly be the source of the spiciness was crickets. Who knew?

I couldn’t help but wonder, How did she grind them up into such a fine powder? With the other spices? Or separately?

Finally, tired and hot we made our way back to the outskirts of the market, passing by colorful displays of clothing, rugs, and fruit and vegetables. Mouth watering smells of cooking meat followed us as we threaded our way around the Sunday shoppers.

Just as we were about to emerge into the sunlight, I remembered. “Wait, I need to get a couple of aprons.”

Swinging a plastic bag containing two embroidered aprons, I followed Cindy and Gail towards the taxi stand.

Sticky from the heat we climbed into the blissfully air conditioned taxi.

It was time to head back to our hotel in Oaxaca

Oh Well

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

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

She nodded.

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

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

I was surprised. “In Mexico.”

She nodded again. “Anywhere else?”

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

Judith smiled. “Oh well.”

And we moved on to the next topic.

Zap

“I’m phoning from the Epilepsy Monitoring Unit.”

I gulped and sat up.

The scheduler continued in her cheery voice, “It’ll be a three to five day stay in hospital.”

Yikes! Three to five days!? At my neurologist’s office they said one to three days, and given my history, they were sure it would only be one day.

“We don’t have anything until March.”

I set it up for the beginning of March—I wanted to get it over with as soon as possible. I got off the in a daze, my mind stuck at the length of my forthcoming hospital stay. Three to five days! My thoughts were all over the place, in slow motion.

I'll have to arrange for a substitute to teach my classes. How many lectures would that be? I looked at my calendar and realized that I’d be traveling to Israel three days later. That'll certainly make the trip more interesting. I’ll phone Rache and see how bad the procedure really is.

Rachel, my younger sister, like me, experienced epileptic seizures. In my case, I hadn’t undergone anything more than a few EEGs. No sleep deprivation, no monitoring with a video while measuring brain activity. Rachel had gone through the whole thing, and had told me how awful it made her feel.

Now, it was my turn. My neurologist wanted me to go through the entire battery. I’ve been on anti-seizure meds for more than nine years now, and recently it seemed like my epilepsy has been rearing its ugly head. Apparently, it was time to figure out where exactly the seizures were coming from. Given that I have quite a few cavernous angiomas scattered throughout my brain, there are plenty of possibilities, my right parietal lobe, temporal lobe, occipital lobe, anywhere really. In addition, this would be an opportunity to consult the specialists at the Epilepsy Monitoring Unit aboutmy meds.

Unfortunately, EEGs don’t always determine the occurrence of seizures even for patients who suffer severe epilepsy. It’s a matter of being in the right place at the right time, or the wrong place at the wrong time, for that matter. It depends on the location of the electrodes and the timing of the seizures. It’s not unusual for seizures to go undetected during a twenty minute EEG, even throughout a twenty four hour one. Hence the idea of being monitored in hospital for a longer period of time.

Rachel was at my parents’ house when she answered the phone. I tried to make some small talk, but only managed a couple of sentences before I told her about my upcoming hospital stay. She yelped, “Three to five days?! Why? I was only in for one and it was terrible.”

She told me that she wasn’t allowed to sleep the night before she went in, and she came out feeling awful, with a horrific headache that lasted a long while. “There’s no way you can travel right after that.”

I phoned the Epilepsy Monitoring Unit. “I need to reschedule my stay.”

I’ll do it sometime over the summer, while I’m not teaching.

Wandering Jew

wandering jew--blog.jpg

A lush Wandering Jew plant dominated my kitchen window sill. A dusting of silver on the leaves lent a light sheen to the stripes of deep magenta and pale teal. The plant kept sending magenta tendrils up and down the window and cabinets. I was constantly working to discourage it from spilling into the sink and sneaking into the dish rack.

After having forgotten to water it for a while, the plant started shedding dry leaves and stems. I finally remembered the plant, I over-compensated and watered it too much and the debris became slimy.

The plant was no longer lush, nor beautiful.

Shortly after I returned from a trip to Israel, when I was clearing the dish rack and sink of slimy debris, I gave up. I decided to reclaim my windowsill—I removed the Wandering Jew from the kitchen.

My kitchen windowsill was detritus free, no longer hidden by a curtain of leaves.

And there it was, my life, me. A Hanukkiyah (menorah) that I brought with me from Israel when I moved here, another that Bill, my now-ex-husband bought me when we traveled over Hanukkah to see his family, an empty jar of marmite, imported from England, an empty jar of lemon curd also imported from England, a glass prism with a dragon carved into it. Symbols of my past life—growing up in Israel, where I am still firmly rooted, my marriage, now dissolved, England, where I was born, a continuing influence throughout my life and the source of my accent, and dragon boating, the bridge between my past life and my life post-brain injury—the path that led me to the person that I am, that I am only beginning to understand.

Flying High

From Morocco, to Hungary, then on to Japan. Next came China and India. From there I traveled to Estonia. My next trip was to Scotland, later to Panama and Thailand. Zimbabwe followed, and from there I went to the Philippines, then to Bhutan and Ghana.

Here I sit in the U.S. at my computer, yesterday my thoughts were on Ghana, today, I dream of Haiti.

I researched weaving in Morocco and the Philippines, and studied embroidery in Thailand and India. In Scotland, I learnt about kilt hose, and in Panama I found molas, the colorful reverse applique of the Kuna Indians.

When I mentioned a couple of my trips to a friend, he asked me when I got back. I laughed—I don’t travel in person. I wish I could.

I write articles about textile techniques from around the world. And now I’m working on a book, each chapter based on one of those articles. I have fabulous photos of the textiles. But I have none of the artisans at work. I want, I need such photos. For the book. For myself.

I wish I could travel as much as I do virtually. I would like to go to Morocco and hang out with some of the Berber rug weavers. If I could only watch the Jalq'a weavers of Bolivia in person, there's so much I want to ask them. To be able to get an up close look the double ikat weaving in Patan, India... I’d love to visit my friends in Bhutan, one of whom was a weaver to the king.

Marilyn shook her head. “But the altitude...”

But— But— I’ve wanted to go for so long. I was planning to go within the next few years. I hadn’t thought of the altitude. That ruled out Ayacucho and Cusco in Peru as well, both places I wish I could explore, where I have friends.

I was in the highlands of Guatemala when I suffered my acute brain bleeds. According to many members of the Angioma Alliance, high altitudes can trigger bleeds. Some members won’t travel by plane for fear of hemorrhaging.

I refuse to give up on traveling. It’s an important part of my life. I fly to visit friends and family in Israel at least once a year. Colorado is another of my regular destinations. A few months ago, I was in New Mexico. My brother lives in Massachusetts. I’m long past due a trip to England. And Iceland sounds good, as does Laos, and Ghana, and New Zealand, and, and...

Yes there’s a danger of a bleed, and travel is beyond exhausting fatigue exacerbated my deficits. But…

Maybe I won’t go to Peru, and hold off on Bhutan. But I will go back to Santa Fe in February, and Israel in March, and Iceland… sometime. I just have to watch myself, to pick and choose.

Most of the time I'm fine about giving up on my dreams of travel, but whenever I work on one of my textile articles, I feel a brief twinge. Then I remember the shemagh (or keffiya) that Ghofran brought me from Saudi Arabia, the piece of Assisi embroidery that Matteo found for me in Italy, and the gorgeous shawl Poonam sent me from India. And I realize, that really I'm very lucky. When I travel vicariously through friends and family, I feel fulfilled, especially when I know they've been thinking of me. I can feel the goofy smile on my face as I listen to them recount their adventures as they searched for the glorious textile they just presented to me.

There's something about a thoughtful gift from a good friend accompanied by a story that counteracts all the twinges in the world.

Permission

Two days after I got back from a grueling trip, and the bloody brain had yet to lash out.

I always found myself in trouble within a day of returning from a trip, no matter what. I knew it was a matter of time. But two whole days, and nothing? That was a first. Could it be that the one meltdown I suffered mid-trip was it? Oh, there was also that other bad day. Though it actually wasn’t that bad—taking it easy for a few hours took care of it.

Was this yet another step towards recovery? Did the bloody brain believe that I paid my dues in full during the trip. That didn’t feel right. The trip was a really tough one, worse than usual, and when I got back to Pittsburgh, I had to dive back into the real world with no recovery time whatsoever.

On the third day after my return, I was still okay. Only a mild headache. Day four, and I was still functioning well. Why hadn’t the other shoe dropped yet? When was it going to drop?

Day five, six, and I was still all right. Better than okay. I was going strong, working on the grant proposal, preparing for the semester, hiring TAs.

I allowed myself to be cautiously optimistic. Perhaps the daith piercing was doing the trick. Perhaps crippling headaches were a thing of the past.

 Swamp-- Wikipedia

Swamp--Wikipedia

I should have known better. On Day Seven, the other shoe finally dropped with the usual horrific headaches, which lasted several days. I was baffled, the bloody brain had never waited this long before. In fact, in the past, it broke out the whip within two days, tops.

Joyce suggested that I finally gave myself permission to let go and fall apart, and I realized that in fact it had happened several times over the last year.

This time, after I got back from my trip, swamped by several urgent projects, I waited until I completed them before I allowed the bloody brain to take over my body, to demand that I take a break, now.

In my previous life, I always got sick after I finished the semester. As if adrenaline had been coursing through my body through the stress of the semester. Once I worked my way out of the mire of the semester, there was no longer a need for the adrenaline to keep me going, to keep my immune system functioning. And once the adrenaline stopped taking over from me, my immune system went back to normal, crumbling in the face of all the infections it had been blocking.

Was this similar? Had I gained sufficient control over my body, over the bloody brain, to keep the backlash in check until I was able to take a break? Only allowing the bloody brain to do its thing when I had time for it?

On Day Seven, the bloody brain insisted on levying my long overdue taxes, making its message loud and clear: No more! You’d better bloody rest, or else.

Closure?

I couldn’t. I wouldn’t. Why did they decide on Phoenix?  Anywhere but Arizona. Especially not Pheonix. I couldn’t do it. I wouldn’t go.

I was on the WARP (Weave A Real Peace http://weavearealpeace.org/) board, and the rest of the board voted to hold our next annual meeting in Arizona. And as a board member, I felt obliged to attend.

Once I made my final decision to go, it occurred to me that this would be my chance to gain closure. I should visit the hospital where I underwent my brain surgeries, the source of my difficulties, the origin of the new me. I also needed to understand what had happened to me.

I was afraid. But my need to gain closure overcame my fear.

As I preparedemotionally for my trip, I discovered that I had no interest in visiting the hospital. What I seemed to need was a visit to the rehab center. I needed to see Abby, my occupational therapist, and Keith, my physical therapist. My first thought was that I needed to thank them. But then I realized there was more to it—I also needed to verify their existence. To validate what had happened?

I phoned ahead to make sure they would be there, and was surprised to learn that not only were they still working at the center, but they would be there on the day I’d be visiting. Had I hoped they’d moved on? I found that a part of me was excited to see them, but I also felt a twinge of dismay—now I really had to go.

 Opportunity  pixabay.com

Opportunity pixabay.com

I didn’t expect to remember the outside of the building. After all, my time there was spent on the inside. But I did. I expected to remember my way from the entrance to the rehab center--Abby had taken me along that route several times, to help me orient myself, and to work on my short term memory and attention span. But I didn’t.

My hear thudded in my chest as we I approached the doors to the center, but one I stepped over the threshold, I felt more relaxed. There was a reception desk at the entrance to the rehab center. Did I ever know it was there? I felt proud of myself took it all in stride. But when the receptionist guided me to the back entrance to the gym, where Abby and Keith were working, I became disoriented and discombobulated. Keith and Abby and I had always entered the gym from the front entrance.

But standing in the doorway, it clicked—this was that other entrance, and exit. The one that I’d only used once before. I stood tall—I remembered. And I was here, where one of my beginnings took place.

My gaze swept across the empty cavernous space in front of me as I searched for Keith and Abby. But I saw nothing. None of the patients, not the therapy tables, nor the parallel bars, just indistinct shadows. Was this really the right place? I remembered it as brightly lit, this room was dark and blurry. A wheel chair emerged from the gloom, out of nowhere. Was that Keith pushing it? He looked different. A silhouette popped into existence behind him. Could it be Abby? But her hair… it was straight, but not chin-length at I remembered it.

They walked towards me, smiling hesitantly. It was them. But it wasn’t.

“You probably don’t remember me...”

Abby interrupted, “I think I do. Weren’t you bald?”

She didn’t remember me. Of course I hadn’t been bald. But I did have a very short buzzcut… Maybe she did remember. “Not quite bald. But close. I was in the room in the corner.” and I pointed. “But then I was moved. Near the nurses’ station.”

Keith’s smile cleared and Abby nodded.

Had I expected them to recognize me immediately? Had I hoped they’d greet me with beaming smiles?

Our conversation was halting and brief. They had to get back to work.

I wasn’t disappointed. But I didn’t feel that inner shift I had hoped for, the shift that would signify acceptance.  I should have realized, acceptance is a path, an ongoing journey, especially for the severely brain injured, whose recovery takes a lifetime.