Take A Hike

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November 17th was Take A Hike Day, at least according to Sandra Boynton.

My immediate thought, upon seeing her Facebook post with a picture of a hiking hippo, was that it was indeed a beautiful day to for a hike in the nearby nature reserve. My next thought was how to fit it into my day—I'd planned to do some serious writing. In addition, I wanted to attend yoga class. I had to stop at the pharmacy, and of course, there was work. There's always work.

I'd missed quite a few classes because of headaches, exhaustion, and work. I was really reluctant to forgo another class. I probably shouldn't skip it.

Could I postpone getting my work done until I returned from the nature reserve?

Writing was my firs priority. Lately, I hadn't had time to myself with no major interruptions. I should take full advantage of it.

I just couldn't see how I could possibly afford to take the the time to immerse myself in the outdoors.

I needed to visit the nature reserve. It held a special place in my heart, and I hadn't been there in such a long time.

Coming to think of it, I realized that I should start hiking there regularly like I used to during my first year of recovery from the brain surgeries. It helped me regain my balance, strength, and stamina. It also helped prepare me for my return to dragon boating. It helped me slow down as the bloody brain demanded of me. It helped in my recovery in general.

But more than anything, It brought me peace within the nightmare that was my life at the time. It brought order and light back into a life filled with chaos darkness. It gave me a much needed break from my new reality.

I had to go hiking. I had to fit it in somehow.

If I went to yoga, when I returned home, it would be too close to dusk to go out for a hike. I looked at my watch--I certainly didn't have enough time to go for a walk before yoga.

It was Take A Hike Day after all. And the fall colors in the nature reserve...

Though I was leaning towards a hike, my other commitments tugged at me. Perhaps writing would guide me towards a choice. I often helped clear my my mind; I wanted and needed to write anyway.

But writing didn't help—I stayed torn.

As I wrote, I lost track of time. When I finally thought to look at my watch, I realized I'd be late for yoga class, very late.

The decision was made for me. Or had I made it myself?

I'd skip class.

I could always stop by the pharmacy on my way back home. I'd continue writing when I felt refreshed from the walk. And work would wait.

Hiking would not--Take A Hike Day only came around once a year.

And I badly needed a break from my hectic life. Today. Now. In fact, I really need to take such a break more often.

I will take the time to go hiking on a regularly, despite my various time consuming commitments. At least twice a week. On second thought, I realized that I should be more realistic--once a week. Like conditions of enoughness, a realistically short to-do list, to keep myself from overextending myself on a daily basis.

I'll add it to my conditions of enoughness.

Once a week should satisfy me.

 

 

Normal

Sara asked me to turn towards the back door of the yoga studio. I paused to process her words, then turned.

She shook her head. “It's okay to allow yourself to take all the space and time you need.” I looked at her askance.

Apparently, I'd turned abruptly, compromising my balance. She suggested that I did so to compensate for the time it took me to process her instruction. “If I weren't here, you probably would have taken your time to turn. ”

She was right, I often try to seem “normal” in public.

I shouldn't have even gone to Nicolas and Lilia's party. I knew it would be noisy and crowded—a sure recipe for sensory overload.

Why did I accept Nicolas' invitation? Because I really liked him and I was flattered. I also felt he could use all the support he could get when he announced to their parents that he and Lilia had eloped. I'd never seen him so nervous.

During the party, Nicolas kept postponing the inevitable. “I'll wait until Matteo shows up, and Dejan.”

I could have made my apologies then, saying I was exhausted, or that I wasn't feeling well. I wasn't feeling well—between the crowd, the noise, and lack of air-conditioning on a hot and humid day, my brain felt heavy in my skull. I was having trouble holding conversations, having difficulties making sense of my surroundings. I had to work hard to access vocabulary—my brain made me stick to simple words. Luckily, most of the people around me weren't native speakers of English.

I should have follow Ryan's family, who were the first to leave. I could have attached myself to Xavier, the next one to go. But having to work my way through the crowd was unthinkable.

When I start overloading, initiating actions becomes extremely hard. It's one of the reasons I have difficulties extricating myself from the source of the problem.

I was in deep trouble. Hiding it was becoming harder. My stutter had become more pronounced and I kept tangling up my words. And my balance was beginning to be affected. Perhaps people thought I was drunk.

I was no longer thinking clearly. I should have realized that being there for Nicolas when he made his announcement was no longer a priority. He had plenty of friends there to support them. And after he finally said his piece, I knew couldn't leave right away—it would have been rude.

I left late, well over three hours since I got there.

The punishing headache that plagued me the next day came as no surprise. The bloody brain was lashing out, as it always does when I overextend myself. It had to make it clear that I was not to stay up late partying again.

I've spoken openly about the bloody brain to most of my acquaintances, friends, family, students, sometimes even to strangers. I’ve described bad brain events, sensory overload and subsequent meltdowns, crippling headaches and debilitating fatigue, loss of balance, vertigo, and short term memory issues. But more often than not, while I'm in trouble, even when I could use help, I don't speak up. Given the choice, I hide my aggravated deficits from those around me. Unless my need is desperate and I absolutely cannot manage on my own.

I often push the bloody brain beyond its limitations. I don't want to slow others down, nor do I want to cause alarm and concern. I don't want to make a spectacle of myself. In public, I try to keep my disability behind a veil, as I did at Nicolas' party, as I do when I travel.

On the day after a long flight to Israel, though exhausted, not wanting to disappoint my younger brother, Simon, I went over to his house after I'd spent several hours with Mum and Dad. I stayed late, even though my sister, Rachel, who worried about me overdoing it, offered to pick me up earlier.

The next day, suffering from a horrendous headache that restricted to a darkened room for most of the day, I ended up having to disappoint my older brother, Jonathan—I had to cancel a day trip we'd planned on making to Jerusalem.

I am too self-conscious about my disability. I shouldn't worry about being open about my difficulties while they are occurring. I should accommodate the bloody brain without worrying whether I seem "normal." The old normal, as I was before the bleeds, no longer applies to me. It's taking me an awfully long time to get used to and accept the new normal.

Teaching Paul

 

  • Overview and motivation.

  • Demonstration.

  • Break down into individual steps.

  • Put all the steps together.

I'd already bought the fiber, I was now mentally preparing myself to teach Paul how to spin.

Paul and I are kindred spirits. We discovered each other through yoga. When we first met, I knew there was just something about him. It was as if we'd been close friends in a previous life. In time, we learnt that though we came from completely different backgrounds, we had a lot in common.

I quickly found out that we had extraordinarily similar tastes in literature—we both enjoyed children's books and liked the same novels and memoirs. Next, I discovered that he'd done some miming—I'd dabbled briefly with street performing. I was amazed when he mentioned that he'd done some rug weaving. He's also a knitter and a felter. I too am a weaver and a knitter, I also crochet, and have done quite a bit of felting. The clincher came last week—we both took a quiz “Which TV Mom are you?” and we both got Morticia Addams.

But there was one glaring difference between us—I am a spinner, and Paul is not, at least not yet. It was time for him to learn.

A couple of weeks ago, I brought one of my spinning wheels (the #Schacht #Ladybug) to yoga class. I was going to rectify the wrong—I was going to teach Paul to spin, after class.

Paul, eager to learn a new fiber technique, needed no motivation. He also understood the bigger picture. I just needed to fill in some details here and there, which I did as I demonstrated.

Next I had him practice treadling while keeping the wheel moving in one direction, counterclockwise. Once he had the treadling under control, I attached a length of yarn to the bobbin and had him experience the pull on the yarn and later the movement of the twist. Then it was time to put it all together.

I started by treadling while I talked him through the hand motions. Then I demonstrated again while he treadled. I showed him how to pinch the fiber at the source to prevent the twist from traveling into the virgin fiber.

Then it was his turn again. As he spun, I kept reminded him to maintain a light touch on the fiber and the yarn in the making. “It's like riding a horse, you don't want to yank on the reins, nor do you want them loose—you hold the reins to keep in touch with the horse's mouth. It's the same with spinning, you want to feel it as you spin, to monitor the quantity of fiber flowing out of the source, and the quality and form of the twist going into the yarn.”

I watched him struggle for a while. He had the right idea but clearly needed something more to help him acquire a sense of the rhythm. It was hard not to take over. As I envisioned my hands on the fiber, I realized how to give him that sense of rhythm--I guided his hands with my own, applying and releasing pressure when needed, to keep the fiber flowing evenly from the source and to control the twist. When I felt his hands take on the rhythm, I let go, and he was off and running.

I have enjoyed teaching children to spin and weave and I've have a lot of fun teaching felting and dyeing. But teaching Paul was special. I came away from the lesson with a goofy grin on my face. Not only had I enjoyed myself because of my love of teaching and spinning, but also because I was giving Paul, an unexpected friend and lover of fiber, a piece of myself. I gave him a gift he I knew he would truly appreciate and might actually come to love as much as I do.

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. 

No Surprise?

Tonya had a migraine, as did Cori. I'd been fighting one for a couple of days now. But I knew that it was inevitable that I'd have to surrender to the bloody brain sometime within the next couple of days. As long as I could hold out through the reading.

 Professor Showcase (Carnegie Mellon University)

Professor Showcase (Carnegie Mellon University)

Another overly busy week had come to an end. In addition to the usual overwhelming work load associated with administering a test, on Friday evening, after finishing my grading, I participated in the Professor's Showcase, run by Emerging Leaders at Carnegie Mellon. The headache started on Thursday evening after the review session, which didn't surprise me. I'd had sufficient experience with headaches to evaluate them and predict their progression quite accurately. I knew I could keep this one from escalating to the point where I lose functionality for another day, possibly two. I was pretty sure I'd be able to keep it under control through Friday evening, but I wasn't as sure about Saturday evening.

The professor showcase was a lot of fun, interesting talks, singing, dancing, and I gave a reading—I read an excerpt from my book “But My Brain Had Other Ideas.” I breathed a sigh of relief the next morning when I found that I was still able to function through the headache.

I knew there was a decent chance I'd make it through the Neurodiversity Open Mic Night organized by ASAN (Autistic Self Advocacy Network), which was to take place that evening. I debated whether to go to yoga in the afternoon—would it be beneficial or detrimental? In the past, yoga actually helped my headaches, but the drive there could be a problem. After Joyce offered me a ride, I decided to chance it.

As I'd hoped, the restorative poses during the yoga class alleviated my headache. It always seemed like magic the way yoga took care of headaches resilient to pain killers. Feeling much better than I had over the last couple of days, I thought there was a good chance I'd make it through the evening with no hint whatsoever of a headache.

Even though I knew that the bloody brain never lets me off the hook completely, I dared to hope that this time, maybe, just maybe I'd get away with it. And I did, until the following morning. No, I was not surprised when the bloody brain hit hard with a headache that reared with every motion and confined me to my bed for the next few hours, at least in theory. But in practice, with my eternal optimism and wishful thinking, I felt a brief twinge of disappointment, with a sprinkle of surprise on top.

Eric

Marty had read my blog post “Sanctuary.” He asked about the guy named Eric I mentioned. Could he be the Eric he knew from the ski patrol. “He had a stroke. Last I heard he was in a wheelchair.”

I had no idea. But I could easily see him as having been a serious athlete. He gives off vibes of being very strong, physically and psychologically. He's a solid guy, stocky. Soft spoken, but really determined.

Eric and I exchange little more than pleasantries when we see each other at the yoga studio. We speak briefly during the few minutes before class. But once the therapy yoga class is under way, there's no distracting him—he's very intent, working diligently on his exercises. Sara, our yoga teacher, had once mentioned that she has to watch him so that he doesn't overdo it.

I knew he'd suffered a stroke two and a half years ago,that his brain stem was affected, hence his horrendous balance. When I first met him, a year ago, he was confined to a wheelchair, and when he had to abandon it to follow his sequence of poses, he had to crawl on the floor. Now, his wheelchair is nowhere to be seen—he uses a walker to get around and he is able to stand unassisted a few minutes at a time.

Today, before class started, I asked him whether he is Eric from the ski patrol. He smiled and nodded. “Yes, I am.”

I explained about my connection with Marty. Yes, he knew Marty. “They haven't thrown me off the ski patrol yet. I'm planning on going back.”

I looked at him sharply. Was he joking? Or did he truly believe it was in the cards? It's been two and a half years. Surely he should have made his way out of denial. On the other hand, who was I to say? He certainly knew himself and his body better than I did.

He walks slowly. Five minutes before class was about to start, he got to his feet.

I turned towards him. “We still have five minutes.”

He chuckled. “It'll take me that long to get across the room.”

Today, I saw him standing at the trestle, practicing his triangle and warrior poses. Yes, he used the trestle for balance, but he certainly wasn't leaning on it heavily.

Perhaps he will make his way back to the ski patrol, in a few years. I can certainly see him skiing again.

Sanctuary

The winter session was a bust as far as I was concerned.

I made it to the first yoga class of the winter session, then I had to skip a couple of weeks worth of classes because of the flu. Next was a long period of severe asthma. Everything triggered an episode, teaching, breathing the cold air outside, climbing a few steps. It kept me from yoga for another couple of months. And the bloody brain dealt the final blow—a horrendous headache prevented me from attending the last class of the session.

During that entire session, I made it to one class.

Yesterday was the first day of the spring session.

Stepping over the threshold into the studio, I felt as if I was entering a sanctuary. There was Eric to welcome me. Last I saw him, he was confined to a wheelchair, now, he was standing on his own, without any signs of teetering. He still couldn't walk unaided, but he was walking.

Eve was next to walk in the door, then Mike, or was it David? How could I have forgotten his name? He had a brain bleed, similar to mine. Paul was next, surfing Paul. It was good to see him—it had been a while. He'd fallen and broken his hip, or was it something else? He had to skip both Fall and Winter sessions. Stroke Paul was nowhere to be seen. It wasn't like him to be late. I wanted to congratulate him on getting back to writing.

I was glad to be back.

I set up my mat, with a bolster and a couple of blankets. But how did the blanket for my head go. Did I fold it in thirds? Lengthwise or— I searched for Sara but she was talking to Eve and yoga Paul was helping surfing Paul. I looked at my folded blanket doubtfully. It didn't seem right, but it would have to do. I lay down on the bolster. It didn't feel quite as comfortable as I thought I remembered. I tried breathing the way Sara had showed me, but that didn't feel quite right either.

The humming breath seemed to go better. And I felt more confident with my next couple of poses, but when it was time to do my standing poses at the trestle, I was at a complete loss. I had to ask yoga Paul for help. None of them felt right, and my headache started up again.

I was almost relieved—I remembered a couple of the restorative poses that would help with the pain. Except that I didn't. Did I need two chairs? One, or two bolsters? How was I supposed to position the bolsters?

I felt as if I didn't quite fit into my surroundings, in what used to be a sanctuary. I felt a bit lost.

I gave up and tried the simpler pose. I still had trouble figuring it out, but I managed something close enough—I started feeling better within ten minutes. All feelings of unease melted away, and with it, my headache.

Just as I was getting up, Sara stopped by to talk, to evaluate where I was and what my goals were. I told her about the stress at work, about the brain bleed and the headaches, about missing all but one class of the Winter session and my difficulties earlier in the class.

“I think we're going to have you do just restorative poses this session. For your headaches and your nervous system. We need to quiet your nervous system.”

And once again, I found my place in my surroundings.

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.

Giddy

Sara laughed. “Don't put it on your blog.”

It hadn't occurred to me to post her photo. “Now, I have to.”

Today, I was giddy.

It was Thanksgiving week, which meant that I was done teaching for the week. As much as I love teaching, I also love my breaks from teaching. As anyone who has taught or has given a presentation knows—teaching is tiring, and for some of us, exhausting.

Yesterday evening after I got home, I danced around in the living room. This morning, I added song to my dance. “La la la la la la. I don't have to go into work today.”

Joyce used to teach in and inner city high school. “Believe me, I get how happy you feel.”

I sang, “Happy me, happy, happy.”

I had a great day. I had a successful shopping trip. In general, I dislike going shopping. But in my current mood, I didn't mind too much. It went smoothly, in and out, no agonizing over choices. I quickly found the perfect shoes. Usually, for me, shoes can look decent or even good; they can be comfortable or even very comfortable. They are never perfect.

Today, the shoes were perfect, even though the lining was lavender. I also bought tie-dye shoelaces to replace the lavender flecked shoelaces—I love tie-dye shoelaces. And to cap it all off, I found a pair of Spider Man socks.

The trip couldn't have gone any better, despite the fact that I messed up my knee and was in pain part of the time.

When I got back home, I sang my way upstairs to prepare for my next outing—it was time to go to my yoga class.

Yoga, usually the highlight of my day, was even better than normal. Yes, I forgot my leggings and had to exercise in my camos. But they really didn't get in the way much and I got a lot of compliments on them.

Sara had me do a sequence of tough exercises to open up my knees. Yes, they were painful, but they really helped. Through the pain, instead of focusing inward, as I was supposed to, I jabbered away at teachers and students.

I wondered whether my unusual bounciness had something to do with the fact that I'd increased my dosage of antidepressants a couple of days earlier. On the other hand, perhaps I was just having a very good day. I shrugged it off—it really didn't matter.

 Sara

Sara

Towards the end of class, Sara also had a bit more of a bounce in her step than usual. Perhaps my giddiness was contagious. After she strapped my shoulders back, she had hers strapped as well, and then she started getting goofy, flailing her arms at me, laughing at herself as she awkwardly took photos of students.

Of course, I had to take a picture of her taking photos.

She squinted at me. “Okay you can post it.”

Hesitation

Sara tightened the strap that held my shoulders back. “How does that feel?”

I let my arms hang down, relaxed. “You can go a little tighter.”

The first time Sara strapped my shoulders back, I hated it, and asked to be released within the first minute. But after seeing the benefits, I tolerated it. I quickly learnt that being distracted helped immensely, to the point where I didn't mind it at all.

Shoulders strapped, I roamed around the yoga studio, searching for distractions. Alas, everyone was focused on their set of exercises and had no interest in socializing. I wandered over to the bulletin board, but soon finished reading everything in sight, including the small print.

Searching my mind for another distraction, I remembered the last time I had my shoulders strapped back—I'd managed to walk two or three steps heel to toe. I hadn't been able to repeat my performance since, but then I hadn't had my shoulders strapped since either.

I wondered if... I looked down at my feet. Should I try? I hesitated.

Why was I hesitating? I searched to put labels to my emotion. Fear? Apprehension? Why would I be afraid? Last time I'd been so excited.

I wasn't afraid that I wouldn't succeed. Perhaps I was afraid that I would succeed, that my balance could be restored. But if that was indeed the cause for my hesitation, could it be that somewhere inside me, I wanted to remain an invalid? No, no, that wasn't possible. That would make me a malingerer, an attention seeker.

Since one of the many neurologists I encountered after the brain bleeds accused me of faking my symptoms, I'd become hyper-aware of any possible signs of melodrama on my part. Whenever I lost my balance, I was concerned that I wasn't trying hard enough, that if I'd really wanted to, I would have been able to take one more step. When fatigue struck, I tried not to succumb to it immediately. The end result was that I actually pushed myself too hard at times.

And now it seemed that perhaps, at some level, I did want to remain an invalid. Could I have been lying to my self all this time? I prided myself for being honest with myself—I couldn't let this be. I had to examine my emotions, no matter where they led me.

Why would I want to remain an invalid? Was I afraid that ties born in the wake of the bloody brain would unravel? That Cindy would lose all respect towards me? That Joyce, believing I no longer needed her help, would move on?

But I had a hard time believing that I really wanted to keep my status as an invalid as a way of seeking attention. It felt wrong. Yes, I did occasionally feel the need to wallow and to seek sympathy. But that was normal, and the need never lasted long.

Why else would anyone want to malinger?

Perhaps the issue wasn't about seeking attention, but about adapting to a new mindset. I had become comfortable with the notion that my balance would never improve, and now I had to transition out of that comfort zone. Perhaps I was merely anxious about having to adjust to yet another fundamental change in my state of being.

All the time my thoughts raced around, my eyes were cast downward, towards my feet. As I searched my mind for answers, I noticed the beautiful grain of the bamboo floor. Without thinking, I lined my right foot up with one of the floor boards. Then, my right ankle wobbling, I placed my left foot heel to toe with my right. Next, I picked up my right foot and placed it in front of the left. Then the left in front of the right.

Wait! How may steps was that? Four? Five? Could I manage one more?