Wandering Jew

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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.

Oh The Times...

A few weeks ago someone asked me how long ago were my surgeries. I had to think. “Is it seven years? Or eight? Perhaps nine? Wait. They were done in 2007, it's now 2015. So it's been eight years.” I nodded. “Yes, eight. Actually, more than eight years, close to eight and a half years.”

The first brain surgery was on August 8, 2007. The next was two days later, on the 10th. And the third was two weeks later, on the 24th.

On August 9th, 2008, I fell apart.

Joyce tried to console me. “Look how far you've come. You're doing so well.” but I couldn't see it. All I could see was a deep dark nightmare of a year. Life was so difficult, the headaches, the emotional volatility, and the headaches. The ridiculously short attention span and poor memory, and the headaches. The crippling fatigue and debilitating headaches.

I was inconsolable. I wept off and on the rest of the day.

Ruth, a friend and breast cancer survivor, told me that the first anniversary was the hardest. She said that she didn't even remember the second until after the fact. “Try to see it as a celebration of how far you've come.” But I wasn't ready to celebrate.

 The hospital where I had the surgeries. (Photo by Jonathan Brandon.)

The hospital where I had the surgeries. (Photo by Jonathan Brandon.)

I almost forgot my second anniversary.

I was writing an essay where I made mention of the first surgery. I started typing in the date, August_ when the computer suggested that I press enter for the complete date. Without thinking I did, and when the date August 8 popped up I wondered, “How did it know the date of the surgery? But it got it wrong by two years, it was 2007, not 2009."

Even then it didn't click. Only when I actually changed the 9 to a 7, as in 2007, did it finally dawn on me. "Oh yeah, it's the anniversary." and that was the end of that. I kept tabs on myself over the next couple of days, but I was fine. No meltdowns, nothing.

My third anniversary was an inadvertent celebration.

A couple of months before the anniversary, I started feeling the need to see my scars. Perhaps I was hoping to gain some form of closure. Over the years I'd been able to feel them, but I'd never seen them. After talking to some friends about it, I decided to shave my head and have someone take photos.

A photo-journalist friend agreed to help out. She documented the whole process, Joyce shaving my head, me stroking the buzz fuzz on my way to the bathroom to search for my scars in the mirror. When she showed me a photo of the scar, I felt an inner shift, as if I'd found my place, like a dog circling to find the right spot then settling into it. I'd been unsettled for a long time, wound up tight, tense, and now I could let go and breathe. Now I could move on to be me.

I felt a need to celebrate.

Shortly after the photo shoot was over, I danced down to the nearby marina, where Ruth and her dragon boat team were preparing to get in the boat. I wanted her to see. I knew she'd understand, that she'd be happy for me.

Coach Lynne saw me and smiled when I told her the story behind the buzz-cut. “Cool. And it's on your third anniversary too.”

I had completely forgotten.

Since then, some years I remember my anniversary, others I don't. But until last year, my seventh after the surgery, whether I remembered my anniversary or not, I kept count of the years. If anyone asked me how long it had been since the surgery, I answered without pause.

This year was different. Not only did I pause, but I also had to think it through, and even when I came up with the answer, I felt the need to double-check.

I don't believe there's a moral to this story. Nor are there any deep questions remaining to be answered. Nothing to reflect on and explore.

It's just something that struck me as curious.

Moving on.

 

Obsession

Eight long months after the brain surgeries, when the new dragon boat season started, I got back in the boat. Due to the brain bleeds and subsequent surgeries, I missed an entire season of dragon boating. After the surgeries, eager to to rejoin my team , the Steel City Dragons, I worked out regularly, in preparation for the next season.

I started paddling for the Steel City Dragons long before the brain bleeds. I'd always loved dragon boating, and until the brain bleeds I considered myself an avid paddler. After the surgeries, however, I learnt what it really meant to be passionate about dragon boating. My previous passion for the sport paled in comparison.

I reveled in my prowess. I felt strong as I pulled my paddle through the water. I felt fast as I whipped the paddle through the air. I felt tireless paddling through a long practice. The racing, the adrenaline rush, the challenge filled me with fierce joy, a level of joy that was new to me.

I took every opportunity to paddle, with the competitive team, the recreational team, and Pink Steel, the breast cancer survivor team. I often helped out with the youth team after my team's practice, sometimes with the coaching, more often with the paddling. On weekends when we introduced the public to the sport, I jumped out of the youth boat as soon as it pulled into the dock, and into the demo boat.

I participated in every race possible. I even traveled to Israel to take part in Dragon Boat Israel, the annual dragon boat festival on the Sea of Galilee.

While other members of the competitive team surrendered to the cold, I continued paddling with a handful of Pink Steel members, who were also eager to push the boundaries. We paddled well into November, finally yielding to the risky water conditions.

Unfortunately after four seasons of paddling, my body betrayed me. During winter training, I injured my shoulder, and the following season, I injured the other. I tried Cortisone shots, physical therapy, and weekly visits to a chiropractor.

After paddling through pain for a couple of seasons, I finally had to surrender. Not only was the pain affecting my paddling, but it was also causing difficulties teaching—writing on the boards and erasing them grew harder and harder. I had trouble pushing doors open, washing my hair, and drying my back after a shower required clever strategies. And I completely gave up on reaching high up for items at the grocery store.

When I quit the sport, I felt frustrated, defeated. Dragon boating had become an integral part of my identity and it had served as a constant reminder that I was much more than a brain injury survivor, that I was strong and tenacious.

But to my surprise, I also felt tremendous relief. I had been pushing myself far beyond the boundaries the brain injury set for me. Participating in races took a huge toll on me, causing incapacitating headaches, debilitating fatigue, bringing on severe sensory overload, and subsequent spectacular meltdowns.

After I stopped attending practices, I noticed a dramatic change in my level of exhaustion and a significant drop in the frequency of bouts of sensory overload. I also experienced fewer horrendous headaches. And of course, finally, my shoulders started to heal.

As I write, I look back at the number of practices I attended and the conditions under which I paddled, both that and cold. I think back to the frustration I felt at having to miss a practice. I now realize that at some point dragon boating became more than a passion, it became an obsession. I have to wonder why I felt compelled to push myself as hard as I did.

Perhaps the power I felt as I paddled intoxicated me. Certainly my teammates provided much needed support through my recovery. Could it be that paddling helped me feel that I hadn't lost all control to the bloody brain? Perhaps my prowess as a paddler gave me the strength I needed to keep working towards a recovery.

Whatever the reason, I believe that at the time, dragon boating gave something I needed, badly, desperately, something that I am not longer so desperate for.

Quiet

“Stop children, what's that sound?” the words of of the group “Buffalo Springfield” often come to mind as I pause to take in my surrounding. But then I recall the rest of the song. Perhaps Pete Seeger's “Seventy miles of wind and spray, seventy miles of water, seventy miles of ocean bay...”. But that doesn't work either—the next words are “—it's a garbage dump.” Ther must be a song out there that captures the quiet I feel when I take walks, a quiet I crave, without a damper at the end. Though urban life this day and age does put a damper on the beauty in the silence.

My neuropsychologist told me that now my brain has to work harder than it did in the past. Hence the ever present fatigue. I need the quiet, more than I ever did since the brain bleeds. It gives my overworked brain a much needed respite, a time to regroup and reboot, so that I can continue functioning from day to day.

Paddling with my dragon boat team, I felt empowered, strong. I reveled in the adrenaline rush—I saw races as the culmination of all that was good about dragon boating, the motivation behind the grueling practices.

I forgot about the quiet.

When I had to quit paddling because of shoulder injuries that weren't healing, I expected to miss that fierce joy. I expected to feel frustrated, to feel the need to replace the sport with another adrenaline filled activity. But I didn't.

I came to the realization that really, more than anything, I miss the quiet on the water, paddling silently through a heavy fog, drifting downstream gazing spellbound at deer dancing in the shallows, watching for “our” blue heron. When I think of replacing dragon boat racing with another water sport, leisurely canoeing or kayaking come to mind.

Now, I enjoy quiet hikes through the nearby nature reserve, watching for deer tracks, listening for the woodpeckers. I love strolling along the river, every so often pausing to breathe in the continually moving ripples. I delight in taking my grand-dog, Gus, for walks, following his lead as he meanders from one intriguing smell to the next.

The quiet is not merely a break for my hard working brain. It also fills a deep need within me. A need I only occasionally addressed in my previous life. A need I was not truly aware of in my past.

Responsibility

I really wanted to be a responsible team member and help out but I knew my limitations. I shook my head. “Sorry, that wouldn’t be a good idea. I’m not the person for the job.”

The whole boat turned towards me. Lynne, our coach, challenged me with a sharp, “Why not?”

I wondered how to explain that collecting the registration fees for the upcoming dragon boat race was beyond my abilities. I considered hiding behind laughter by mentioning brain damage, but quickly rejected the idea. There was no need to call undue attention to myself and the bloody brain. I wanted to respond to Lynne’s question in a straightforward, concise manner. A brief reminder should suffice; Lynne would understand. Perhaps if I were more specific, if I mentioned particular deficits.

I became flustered as everyone watched me, waiting, and said the first thing that came to mind: “I’ll forget.”

As soon as the words flew out of my mouth, I realized that it sounded like a lame excuse. I knew I should have elaborated on it, but I was drawing a blank.

Lynne nodded. Did that mean she understood? Or did she see it as a flimsy excuse that didn’t deserve a response?

If it were merely a matter of trying to overcome my poor organizational skills, I would have been tempted to tackle the job. If all I had to do was break through my difficulties initiating tasks, I might have given it a try. If my lousy memory were the only obstacle, I would have found a way around it. However, collecting the fees for the upcoming race would involve all three deficits.

It would not simply entail stuffing money into an envelope. I’d have to contact the race organizers to determine the fee per team. I’d have to keep track of how many people signed up—a continually evolving number. I’d have to monitor who paid and who didn’t. I’d have to pester people for their money. Every component of the job involved organization, initiation, and memory.

I’d over-extended myself before. I knew exactly what would happen if I agreed to do it: I’d freeze, I’d be incapable of getting started, let alone of making progress. And as I’d strive to overcome all the obstacles, waves of anguish and guilt would keep rushing through me, swamping me again and again.

I amended my evaluation: I’d be combating not only poor organizational skills, trouble initiating tasks, and a lousy memory, but I’d also be struggling with overload. And all of those issues would feed upon each other, amplifying one another.

There was no doubt in my mind—the task was beyond me.

So, being a responsible team member, I said no to Lynne’s request.

Satisfaction

“It’s not fair to your teammates if you don’t put your all into it.” I could feel the heat spread across my cheeks. I was both humiliated and furious by the coach’s words. How dare he accuse me of holding back, of not giving it my all, of being lazy? I poured more into my paddling than many on the team.

I was still fuming at the coach’s accusations after practice. “That was totally uncalled for,” I ranted to Joyce.

She chuckled. “I could tell from the back of the boat that you were really pissed off—the back of your neck got red, and your scars really stood out. They always do when you get upset.”

I was so startled, my fury subsided almost instantaneously.

I felt gratified. After she added that the scars were so prominent they were probably noticeable even to those who didn’t know to look, I felt vindicated.

Vindicated? About what? That my invisible scars briefly became visible? Why?

Now, several years since that day, I no longer fume at the coach. Do I still fell vindicated? I search through my emotions, again and again. Yes. It's still there, that feeling of satisfaction that my scars occasionally become visible. It's faded to a mere twinge, but it will not be denied.

Why?

Voices Voices

You have all these different voices that come out in your writing.”

I laughed. “Joan of Arc and I, hearing voices.”

Natalie is my speech coach. I went to her for help in becoming a better speaker. Shortly after we started working together, she urged me to make an audio book out of my book “But My Brain Had Other Ideas.” She thought I could do a really good job.

We met a couple of days after I sent her a recording of me reading a piece about my first case of sensory overload. I had no idea that I'd just suffered a brain bleed, and had no clue what sensory overload was. I thought I was going mad.

Natalie discussed the inner voices in the essay. She named them: the reporter, the panicky one, the voice of reason.

I am currently writing an essay about the evolution of my voice, of growing into the authentic me. I'm finding it challenging—I keep going back and forth, trying to figure out which is my voice. Am I still that person who became so passionate about dragon boating? Or is my road a quieter one, the one of a yogini? Will I become passionate about yoga? Does passion define my voice?

The questions percolated throughout my days, and sometimes at night.

Natalie's words resonated with me, but I wasn't sure where they fit in the puzzle. I spoke to Judy, my writing coach about it, and I tried to listen to myself.

I came to the conclusion that I often hold conversations with myself, though they are not always verbal. I am most aware of them when the bloody brain rears its ugly head, and certainly when I write, when the observer in me is in the forefront of my mind.

But which is my voice? Perhaps my voice is  a combination of the voice that leads to caution, the voice that leads to recklessness, and the one that seeks a bigger picture, questioning my motivations and my emotions. There's also the voice that tries to understand the world around me and my place in it, and the voice that continues to search for a new voice. And, of course, keeping track of everything, is the observer in me.

I also came to the conclusion that since the surgeries and since I started writing in earnest, I have become more aware of my voices. I am a better listener than I used to be. There is, however, one voice that I am often reluctant to acknowledge—the demanding voice of the bloody brain, the one that tells me to slow down, or else.

Yet through the voice of the bloody brain, I have discovered a whole new world, a world of many voices. Some through defying the bloody brain, others through compromising with it, and of course, through complying with it.

I have discovered, and continue to discover, me, my voice. 

Carpe Diem

“Live life to the fullest.”

“Celebrate life.”

“Carpe diem.”

I've heard them all. But as another angioma patient wrote on Facebook, “not all near-death experiences cause you to jump up and live everyday to its fullest.” Summer's angioma is located in the brain stem and is inoperable. She is scared of the very real possibilities of her heart stopping from beating, or of suddenly losing the ability to breathe. She spoke of her fears paralyzing her, preventing her from taking life by the horns.

Summer has lived with her fears for a year. I have lived with mine for more than seven years now. My fears rear their ugly heads when something new happens, a new symptom, a new bleed, new angiomas. I become anxious every time I recall that I am at high risk for early onset dementia or that angiomas can grow back, and I'm fearful that my epilepsy isn't fully under control.

But these days, most of the time, my fears hide far beneath the surface, and when they do resurface, they rarely paralyze me.

I should be able to seize the day.

Sometimes I wonder whether I do live my life to the fullest, whether I celebrate life like my friends and breast cancer survivors do. Sheryl, at the age of seventy, learnt to fly-fish, and took up dragon boating. She paddles competitively and has participated in national and international dragon boat races. Darlene didn't even jog before her diagnosis—now she runs marathons. She rarely traveled out of town—now she travels across the country without blinking an eye and she recently came back from a trip to Europe. She's tried sky-diving, attends glitzy shows, and throws pool parties.

Like them, I live more passionately than in the past. Though also more quietly. I take leisurely walks, stopping to absorb my surroundings. I've taken up yoga and writing.

I have absolutely no interest in sky-diving or skiing. Fishing and glitzy shows have never been my thing. And I gave up on dragon boating after injuring both shoulders.

Is it a matter of personality? Perhaps if I was more gregarious like my friends. I would live more like them. I'd travel to developing countries and instead of focusing on yoga, I'd go back on the water to scull.

Perhaps it a merely a matter of energy. Too much of the time, I struggle through debilitating fatigue—I have nothing left to seize anything. And the all too frequent headaches prevent me from even remembering that diems are here to be carped.

Could my way also count as a celebration of life?

While living up on the hill with my now ex-husband, I dreamed of living within walking distance of the shops, the cinema, restaurants, work. I now live at the foot of that hill. Though I still need to drive to work, I can now walk to the shops, and along the river.

It is a lovely day outside, and I do need to pick up a few things at the grocery store. I am well rested after a decent night's sleep.

This diem is definitely calling out to be carped, my way.

I believe I will take a leisurely walk over to the grocery store.

Vindicated

“It’s not fair to your teammates if you don’t put your all into it.” I could feel the heat spread across my cheeks. I was both humiliated and furious by the coach’s words. How dare he accuse me of holding back, of not giving it my all, of being lazy? I poured more into my paddling than many on the team.

I was still fuming at the coach’s accusations after practice. “That was totally uncalled for,” I ranted to Joyce.

She chuckled. “I could tell from the back of the boat that you were really pissed off—the back of your neck got red, and your scars really stood out. They always do when you get upset.”

I was so startled, my fury subsided almost instantaneously.

I felt vindicated.

Vindicated? About what?

Unlike a broken arm, brain injury is invisible. Some of us brain injury survivors have visible scars, others, like me, don't. I've only seen my scars in photos from shortly after the surgery, and from later, when my hair was buzzed. I can feel them, but for a few years, it wasn't really enough.

The intangible nature of the injury often leads to self-doubt among brain injury survivors. Am I imagining things? Am I malingering? Am I an attention seeker? Perhaps I'm just being lazy. Perhaps I'm not trying hard enough. It doesn't help that outsiders, not seeing any obvious signs or symptoms, often have trouble accepting that our difficulties are real.

Knowing that my scars were visible, at least when I was angry, validated the existence of my bloody injury. My difficulties were not imagined. My compromised balance was not a call for attention. My ADD issues and lousy short term memory were actual issues directly related to the surgeries. My post injury depression was not merely a sign of inadequacy on my part.

I was not a head case. Well...

Blind Dragon

One and two. One and two. Twenty paddlers in a dragon boat, paddling in unison. One and two. One and two.

Following the paddlers in first seat. One and two. One and two.

The coach calls from the stern. “Blind dragon! In three, two, one!”

I close my eyes.

Head cocked, I listen with my whole body. Through the silence I hear twenty paddles plunge into the water. One and two. One and two. I feel the rhythm in the boat. One and two. One and two.

“Power up!”

I sense a shift as we slam our paddles down, pull through the water. Powerful, fast. One, two. One two.

We listen for the splash and feel the surge. One, two. One, two.

We are strong. We are one. We are. One, two. One, two.

Nothing else matters. Nothing else exists.

Just us and the boat, slicing through the water. One, two. One, two.

We are suspended in time, pistons in a machine, up, down. One, two. One, two.

Muscles expanding and contracting. One, two. On,e two.

Paddling into eternity. Together. One, two. One, two.

“Let it run.”