Incorrigible

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.

Hands Up

https://pixabay.com/illustrations/hands-hand-raised-hands-raised-220163/

https://pixabay.com/illustrations/hands-hand-raised-hands-raised-220163/

Shoes off. Coat and hoodie in the bin. Wait. My belt—I whip it off, roll it up, and tuck it under the coat. I check my pockets. Oh yes, liquids—I pull the ziploc bag out of my backpack.

I think I’ve got it all. Oops, the iPad. I sigh as I reach over to get another bin. I pat my pockets again and run through the list in my head—iPad, liquids, shoes, belt... I’ve got it all.

I step up to the machine. The TSA rep motions me to go in. I know the drill—I stand with my feet shoulder width apart and lift my arms up. I feel my pants slide down a tad... and it’s time to step out of the machine.

The rep motions me over to the side. She points at a screen—on the stylized image there’s a patch of yellow. “Do you have anything in your back pocket?”

I shake my head as I pat it, just in case.

“I’ll have to pat you down.”

This isn’t the first time. 

I prefer to travel wearing cargo pants. All those pockets are extremely convenient—when I need to set things aside, they go into my pockets: phone, wallet, passport, boarding pass... But the cargo pants turned out to be inconvenient in another way—a couple of pockets always show up as yellow patches on the monitor. Once I realized the pockets were the problem, reluctant to forgo wearing cargo pants, I bought a pair made of thinner fabric. Alas, the same thing happened. 

I gave up and decided to try jeans. I had a particularly comfortable pair. I convinced myself that I’d manage fine without  all those lovely pockets. And I did—when the need arose, I shoved things into the front pocket of my backpack.

Going through security, the jeans worked like a charm—the image on the monitor was white, no yellow patches in sight. It worked a couple more times. And then this time, there it was, a yellow patch.

The rep patted me down. “Widen your stance.”

She found nothing. She swabbed the palms of my hands for gunpowder residue. As we waited for the machine to respond, she suggested, “Next time you go through security, pull your pants up. The machine is sensitive to bunched up fabric.”

My eyebrows shot up—but, but… That didn’t makes sense. I almost said something to the rep but decided not to, probably wisely.

Turning to gather my things, I briefly became distracted, until I noticed the guy behind me going through the same spiel. He too was told to hold his pants up. I caught his eye. We both shook our heads and shrugged.

Once I was clear of security, I put my shoes on, placed my iPad and my bag of liquids back in my backpack, wove the belt through the loops, hitched up my pants, and buckled the belt.

Without a belt and my hands up, as a hipless wonder, there was nothing to prevent my pants from slipping.

I have yet to come up with a way to hitch up my pants while my arms are raised...

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.