See Me

The blog has moved!

Just letting people know that the blog has moved! It is now located at

debbrandon.com/blog

Hope to see you there!

Acting Out

    “What did it feel like in your head?”

    My mind was still working as if the traffic in my neural pathways was bad. With split second pauses before each carefully articulated word, I tried to explain to Cindy. “It's like stop-and-go traffic. You know, like when you're really drunk and you have trouble enunciating and finding the words.”

    An hour earlier I'd been on the phone to Cindy. Midway through the phone call I told her: “I'm feeling kind of weird, wonky.” and my words got all tangled up.

    I stuttered and slurred. “C— c— can't s— speak. M— m'words gone.”

    I tried to articulate carefully. “S'like ummm drunk. I done like it. Ih s— sucks.”

    Cindy had to get off the phone, but she promised to phone back to check on me within the hour.

    Since the brain surgeries, every great once in a while, I have to enunciate each words separately in order to avoid slurring. Rarely do I stammer. What was going on now was as bad as it's ever been, reminiscent of how I spoke right after the brain stem surgery. I remember lying in my hospital bed, thinking, “Great. Not only do I walk like a drunk, now I also talk like a drunk.”

    And once again, here I was, exhibiting one of the classic warning signs of a stroke. Was this another bleed? Or was the bloody brain just acting out as it occasionally does to remind me of its existence?

    By the time Cindy phoned back, I was doing a lot better. My thoughts were sluggish and my speech was halting, but the words were to be found, and I was able to speak without stuttering or slurring.

    There was no point in going to hospital; even if an angioma had bled, there was nothing they could do about it other than confirm that it had bled. Anyway, there was no one to take me, everyone was out of town. Joyce was in Israel, John from next door was up in Amish country, Bill was in New York, and the kids were away in college. And dealing with my health insurance over the cost of an ambulance ride on the off chance that I'd had a brain bleed... No.

    I checked my pupils in the mirror—they were the same size. So far so good. I was exhausted after a busy week at work, so the fatigue was not necessarily an indicator that something was terribly wrong. I did have a bit of a headache, but if this were a bleed the pain would be beyond words, indescribable.

    I came up with a plan; if the headache became all consuming, I'd phone Shlomi, a colleague who lived nearby, and ask him to drive me to the closest hospital. Then I'd phone Daniel, who is about an hour away, to apprise him of the situation.

    That settled, I went to bed.

    I woke up the next morning to a manageable headache.

    The relief I felt made me realize just how terrified I'd been.

 

Grieving for Danny

 Danny died a couple of weeks ago.  

He's gone, forever. Dead, dead, dead.

I say the word, and tears well up, but I don't understand why. I don't understand this word, “dead.” What does it mean? I want to know why such a word can make me cry. I want to understand.

“Demise” is like “death,” merely a word, empty. “Passed away” makes more sense. People pass each other on the street. But who did Danny pass? Did he pass me without my noticing? And where is “away?” When people go away, it means that we can visit, that they can come back.

But when Yonatan, Danny's brother, told me that Danny passed away, he meant forever. That he'll never come back. No more chats via Facebook, no more Skyping, no more shared stories about our past, our childhood, the sleepovers, high school. No more morbid humor about his cancer, about our damaged brains.

Is that why I grieve? Because I miss our conversations, our banter, our philosophical explorations?

No, that can't be the reason for my tears. I don't respond emotionally to the past like I used to before the bloody brain. The connection between my episodic memory and my emotional memory was damaged by the brain surgeries. Memories of facts usually don't evoke emotions, they're detached, often lifeless.

So why do I tear up when I see photos, when I speak of him, when his name comes up in conversations? Danny is no more, he is but a memory, a collection of abstract memories, of detached episodic memories.

I shouldn't be crying over him now that he's become intangible.

Since the brain surgeries, abstract notions are even more abstract, intangible.

My connection to the future is tenuous at best. I try to pack more than a couple of hours ahead of trips. But usually to me, planning and packing for a trip is merely a game of pretend. Occasionally, I'm not in the mood for pretending and I find myself scrambling to pack my bags at the last minute. In all but rare cases, virtual trips becomes real only when I reach my destination, when it becomes part of the here and now.

My relationship with Danny over the past few months was based mainly on our virtual connection, our online conversations. Danny was real to me when we chatted or when I saw his face on Skype. Otherwise, which was most of the time, he didn't really exist in my mind, he was intangible, but a memory.

I loved Danny. I loved connecting with him, making him tangible. I loved our verbal exchanges. And like those intangible, future trips, I wanted him to become real; I made it a ritual to check if he was online as soon as I logged on, whenever I logged on.

Every so often, as I type, without thinking, I check once more to see if he's online, then again, and again. He's supposed to be there, so that I can Skype with him. But he isn't and he never will be.

I shouldn't be upset. He shouldn't be a part of my reality unless he is in the moment. It doesn't make sense. I don't understand.

I don't understand why the tears keep welling up.

Labels--Part I

As soon as Sarah and I rounded the corner, we saw Olivier reclining on the sofa facing us, a cup of coffee in his hand. Sarah, about four years old at the time, glanced up at me and smiled. I nodded and we walked across the room together. We were a few feet away from him when Sarah stopped and stared. Olivier and I glanced at each other, then turned towards her and waited for her reaction—this was the first time she’d seen him since he had his leg amputated.

After a long moment, she looked up at me, frowning. “Mummy, where’s his other shoe?”

I was not appalled or embarrassed. In fact, like Olivier, I was amused.

Olivier’s amputation was recent, and he was still adjusting to it physically and emotionally. When we’d discussed this type of situation the previous week, he’d told me, “I’d much rather people stare at me than pretend I’m invisible.” He was more disturbed by the parents who tried to avoid looking at him than by their kids who could not look away. “They tell their kids off for being rude, when they are the rude ones.”

On one of my trips to Colorado, the Denver Airport was much more crowded than I’d ever seen it; I overloaded the instant I entered the terminal building. My spatial awareness disintegrated and with it, my balance.

When I reached my gate, all the seats were taken, including those reserved for the handicapped. Leaning heavily on my cane, hunting for a seat, I weaved my way among the benches, struggling to avoid tripping over luggage and hastily retreating feet.

Every single person in the gate area saw me coming; not a one could have been completely oblivious to my presence. Yet each and every one avoided making eye contact with me, rendering me invisible, denying my existence, my humanity.

By denying me, they were in fact denying their own humanity. Their own vulnerability. Their own responsibility. And every time their eyes slid off me, they made that same decision to deny, not once, not over a split second of uneasiness, but over and over again throughout the entire thirty minute wait for boarding.

I know that if the bloody brain hadn’t betrayed me, perhaps their eyes would have flickered past me absentmindedly, perhaps not even noticing me. But they would not have shunned me so deliberately, their eyes shying away from me as soon as I entered their visual field.

Unlike Olivier and others with noticeable disabilities, I can typically pass as part of mainstream society. Most of the time, people don’t try to deny my existence at first sight. Unless the bloody brain acts up and gives me away, I can choose when and where to enlighten them, when and where to don my cloak of disability. I can decide whether I feel up to dealing with the possibility that they will pretend I don’t exist. I can decide if I want to cope with the likelihood that in their mind, I will lose my identity and become only the label, “handicapped.”

POV

I started reading the member profile: “We are all the sum of our experiences in life, which is never a simple story for any of us, but the reach and depth of experience in Deb Brandon's life has been breathtaking.”

Who was that woman the Candy Meacham wrote about? The woman in the profile and I had a lot in common—she was versed in several textile arts, well educated, well traveled, and had gone through interesting, at times alarming life experiences. Yet unlike me, that woman seemed extraordinary.

I reread the piece Candy wrote. Yes, she got the facts right, but the woman she described didn't feel like me. Was that how other people saw me?

Both Candy and I are members of WARP (Weave A Real Peace http://www.weavearealpeace.org/), a nonprofit organization that serves as a catalyst for improving the quality of life of textile artisans in communities-in-need.

Candy, like me, writes a column for the WARP quarterly newsletter (http://www.weavearealpeace.org/newsletter.html). My column is about textile techniques from around the world, whereas she writes member profiles. This time, Candy featured me, Deb Brandon.

It was like listening to a recording of my voice, knowing that it was in fact my voice, or at least as others heard it. Yet the recording didn't really sound like me; it certainly wasn't as I heard my voice.

And here I was, reading about me, the facts were true, yet...

I asked Cindy, “Is that really me? Is that how you see me?”

She assured me that Candy had indeed captured my essence.

“But you know me, a regular human being, often bumbling along. Nothing special.”

The WARP annual meeting was coming up in a couple of weeks. “After reading that, they're going to have ridiculously high expectations.”

I liked the article, it was interesting and well written, and that woman Candy wrote about sounded really cool.

I really wanted to meet her.

Numbers

I absolutely cannot stand the number 31. It is so...blah, and, adding insult to injury, it is opinionated. There's nothing worse than someone who is blah, yet has strong opinions. About what?

Then there are those who are right in your face, like the number 57.  It is so incredibly obnoxious, always invading my personal space, talking at me, droning on and on, making me feel trapped. I want to yell at it to shut up.

My least favorite number of all is 53. I'm not sure why, it just rubs me up the wrong way. I've tried everything. I've tried confronting it face to face, but I can't. I just can't stand looking it in the eye. I've tried sneaking it into my life surreptitiously. But no matter what, it always makes its' way to the front row and then smirks as it thumbs its' nose at me.

On the other hand, the number 24 is such a lovely number, open, welcoming, comfortable, generous. It is a giver, not a taker. Spending time with 24 always leaves a smile on my face; it puts me in a good mood no matter what my day has been like.

When I teach, working to construct an example, I often ask my students to volunteer one of their favorite numbers. At first, they aren't sure what it is that I'm looking for. I explain. I tell them that I don't like 17. I just don't, it gets on my nerves by its mere presence.

One student calls out, “But I really like 17.”

“Well I don't. Think of another number.”

A curly brunette in the back raises her hand. “How about 7?”

I nod. “Yes, 7 is a fine number. I can work with 7.”

I start writing the equation on the board: f(x) = 7x. Then I turn and face the students. “Okay, another number.”

“4?”

“C'mon guys. You can do better than that. Give me something with more meat on it.”

A swarthy young man asks, “Something like 36?”

“Excellent choice. It's one of my favorites, so very friendly.”

I turn and add to the equation: f(x) = 7x – 36 sin(x).

As the semester progresses, it becomes routine. Sometimes I ask for favorite numbers, other times for least favorite numbers. I have no idea whether they are beginning to attribute personalities to numbers, or they are merely humoring me. It doesn't really matter, I'm enjoying myself, and they are engaged.

I used to think that everyone had favorite and least favorite numbers. When I discovered that that was not the case in general, I assumed that it was something unique to mathematicians. But all the mathematicians I asked responded by looking uncomfortable and changing the subject. And when I mentioned that in my mind, numbers hold personalities, they gave strange looks.

To me, most numbers have personalities, some stronger than others. Some have personalities that are almost imperceptible. The number 1, 3, and 62 are such numbers, blah, wishy washy, quiet, uninteresting, almost invisible. On the other hand, 9, 24, and 57 have personalities that jump out at you and fill a room.

I read “Born on a Blue Day” by Daniel Tammet, a savant for whom numbers are much more than an abstract notion. To him numbers have colors, shapes, textures, and feel.

I suspect that my relationship with numbers is completely different than his. His is clearly synaesthetic, whereas mine is not; I suspect that in my case it is more due to whimsey, imagination. Also, I am no savant; through the attributes he perceives in numbers, he is able to make lengthy computations in his head, and I definitely do not have such an ability. Though it would be fun to multiply large numbers in my head through visualizing interactions between a variety of personalities attending a social function.

 

I've always had a personal relationship with numbers, though it used to be la lot vaguer; I liked some numbers more than others, I felt more comfortable with some. Over the last few years, my relationship has become richer and more personal. Having grown more distinct, more specific, I have also become able to verbalize it.

Given all the transformations I have undergone since the surgeries, I can't help but wonder if it is somehow related to the bloody brain. Perhaps it is something to do with my new passion for life. Maybe the neurological changes are responsible for my world of numbers.

Whatever the cause, it is one of the gains that balances out the losses from the bloody brain.

Task List

I drag myself upstairs to my bedroom. All I can think of is collapsing onto the bed and burrowing under the covers. I can see it in my mind, I can almost feel the soft sheets, the weight of the comforter.

I stumble into the bathroom, pee, brush my teeth, I’m too weary to floss. I walk into my room, shedding shoes, socks, pants, and bra on my way to bed, and fall onto the covers.

Just as my head hits the pillow, a disturbing thought plops into the still waters of my mind and sets waves in motion. My task list! I haven’t finished my task list! But I’m too tired. But it’s on your list. You have to do it. But I can’t, I just can’t.

Ever since the surgeries, I’ve had trouble initiating tasks. This is an affliction common to many brain injury survivors. It is similar to procrastination in the sense that the outcome is the same—things don’t get done. Though not a habitual procrastinator, I did my fair share of procrastinating before the surgeries and I still do. This bloody brain related trouble I have with getting started on new tasks feels completely different.

Before the surgeries, if I’d just completed a big project such as weaving yardage or writing a grant proposal, occasionally I had trouble getting started on anything new, like knitting a pair of socks or preparing lecture notes. Sometimes it was a matter of hours before I could shift gears, other times it took days. But I always knew that I’d eventually get to it. What I deal with now is an extreme version of that. Instead of happening occasionally, it occurs fairly frequently, and it often lasts much longer, sometimes years. There are a few tasks that even though deep down inside, I know I will get to, from past experience I suspect Inever will.

I feel as if there is something blocking me mentally from approaching a new task, not because I’m not in the mood, nor because I’m too tired, and not necessarily because it’s something boring or distasteful. It doesn’t even matter whether it’s a large or a small project—it seems to strike at random and lastsfor random periods of time.

Because I know with complete certainty that I will get to these tasks, it is often difficult to identify problematic ones. In some cases it has taken me several months to realize that I’m having trouble getting to a particular task.

Once I identify the culprit I have a strategy to conquer it, to move past the blockade. As my neuropsychologist suggested, I put together a daily task list, and in my daily planner I mark a chunk of time for each task. In order to ensure that the list is not so overwhelming I’ll ignore it completely, I put no more than two items on it and I divide larger tasks into manageable sub-tasks.

It works fairly well. Since the surgeries I have also become more rigid in my mindset; not horribly so, but enough to guarantee that I feel compelled to follow the rules: if a task is on the list and marked in my planner, I have to apply myself to it.

I lie in bed, my limbs heavy, my head parked in the dent in my pillow. Deeply distressed, I argue back and forth: I have to complete the task, it’s on the list, but I can’t, I’m wiped out.

Finally, I surrender to the fatigue. On the brink of sleep, a revelation rolls through me—I can just add the unfinished task to tomorrow’s list.

Sweet Georgia

The house had a central core, the stairwell to the basement. The rest of the house was built around it. Theoretically, it was possible to walk around the house on the inside in a complete circle, except that I just couldn’t manage it.

I had no trouble navigating between the kitchen, dining room, and living room: they had interconnecting doorways. If I found one, I found the others. But finding the bathroom or the stairwell was always a bit of an adventure; the only way to access them, was through two short hallways, and once those inner hallways were involved, I was in trouble.

Cindy found my difficulties amusing, but Georgie was puzzled by them.

I’m sure that most visitors figured it out fairly quickly. But for a brain damaged person like me, who has trouble navigating in general, it was hopeless.

In inpatient rehabs, within days of the first two brain surgeries, my occupational therapist, Abby, worked with me on my navigational skills. She took me from rehab to the main entrance to the hospital, then guided me back to the rehab center, retracing our steps. She did so a couple more times, following the exact same route each time. On the fourth time, when we arrived at the entrance, she asked me to lead the way back to rehab. I couldn’t. She tried giving me hints.

“Did we use the elevators?”

I had no idea.

“Do you recognize this stairwell?”

I shook my head.

During my week in rehab, we tried it two more times. By the third time, I recognized the hallway connecting rehab to the main hospital building, I knew we had taken the elevator, and I was pretty sure that the rehab center was on the second floor. Or was it the third?

Since then, my navigational skills have improved dramatically, but I still get lost fairly frequently. Directions are of no help. I cannot follow more than a couple of steps without becoming completely confused. When I’m driving, I rely on my GPS quite heavily.

I was visiting Cindy in Colorado, staying at her house, sleeping in her room in the basement. During my visit, I had no trouble reaching the inner hallways from the kitchen, living room, or dining room. But once there, finding the bathroom and the stairwell was a matter of pure luck. I'd wander around the inner hallways, rounding corners from one to the next, occasionally reteracing my steps several times, until I recognized my goal. There was no method involved.

Sometimes I found my way on my first try, sometimes…not.

On my third day there, I needed to fetch something from the basement. I happened to be in the living room. Within a few steps I was standing in one of the hallways, and then, as usual, I started roaming, keeping my eye open for the stairwell. I wandered around, back and forth, a few times before I recognized the door to the stairwell.

As I approached the open doorway, Sweet Goergia Brown, or Georgie for short, one of Cindy’s basset hounds, rounded the corner from the opposite direction and stood there staring at me, her head cocked, as if confused by my behavior, possibly questioning my sanity.

I chuckled. “Okay, so I’m not always brilliant.” I shrugged. “I did find it in the end.”

She continued to watch me as I turned into the stairwell.

Before I was ready to make my way upstairs, I used the bathroom, and when I came out, Georgie was waiting for me. As soon as she caught sight of me, she wagged her tail, then turned deliberately towards the stairs, and waited, looking back at me. When I showed signs of joining her, she wagged her tail harder, and as I followed her up the stairs, her tail was doing a fair imitation of a propeller.

Once she delivered me safely upstairs to the living room, she disappeared. She’d done her job.

Several times during the rest of my stay, I caught her looking at me with her head cocked. Was she keeping tabs on me, wondering whether I needed further assistance?

                    

Weaving My Dream Part IV: Weaving My Dream

The second time around went smoothly: there was absolutely no hesitation on my part at any step, and I had no need for extensive breaks in between steps. Preparing the warp, dyeing, and warping took me a total of one week, as opposed to six weeks the first time around, and I made only a few mistakes, all typical mistakes I might have made before my brain injury.

The joy I felt as I wove was just as I had anticipated, a joy that had been missing during my first trial. Every so often I would pause to admire the subtle pattern emerging, the interplay between the colors, and the reflections of the light on the silk fabric. I was practically purring as I threw that shuttle back and forth. I was in love.

I was totally consumed by the project and had trouble forcing myself to take breaks while I was weaving, yet take breaks I did. I was not going to mess this one up, I was not going to make mistakes due to fatigue. I was going to do this one right, from start to finish.

I completed the piece within a few days. I named it “The Wave of Reflections at Sunset.” Once the finishing process was done, I stepped back to admire it. I fell in love with it all over again. It was gorgeous.

                                    

              I had produced a piece that pulsed with life.

Sitting at the loom, advancing row by row, I had also been painstakingly weaving my own self into being. I had not only survived, I had triumphed. The fabric emerged not merely as a beautiful piece but as a stunning creation with an essence of its own. It had a quality that the old Deb would have been unable to produce. It reflected my own journey of healing: I was not only mending the frayed patches that remained in the aftermath of the brain injury; I was weaving new patterns.

                                    

 

Weaving My Dream Part III: Try Try Again

 I stood at the loom, the warp in hand, yards of shimmering silk dyed in the colors of sunset on the waters flowing through my fingers. I was baffled. I couldn’t remember which warp should be tied onto which back beam, and which back beam came first. I studied the back beam. It was awfully thick. I knew that I was supposed to tie the warp to a thinner rod. I wasn’t sure where it was, what it looked like, how it connected to the back beam. I had trouble tying the knots. Was it a lark’s head knot I needed? What was a lark’s head? I couldn’t remember how to set up the pathways for the warp threads. Which slot came first? Which of the choices was I supposed to make? What did my notes mean? I fumbled around trying one thing, then another, until my hands took over, showing me the way.

Every step of the preparation for weaving was daunting to me—measuring the yarn for the warp and weft, readying the yarn for dyeing, dyeing the yarn, measuring the warp, and warping the loom. So many deficits; so many losses to overcome.

Although I needed to rest for a day or more after each step, I managed to complete every phase in the process with little to no difficulty. I remembered how to compute the amount of yarn I needed, but then had to rest for a day. I prepared the yarn for dyeing without trouble, though I did suffer a severe case of vertigo and loss of balance after the fact. The dyeing process went smoothly, except that I needed to rest for three days before I moved on to the next step—warping the loom.

I knew that of all the stages in the preparation for weaving, this would be the most challenging, bot physically and cognitively.

Prior to the surgeries, I’d never made more than a handful of mistakes when warping the loom. Now, the errors were everywhere.

Whenever a problem arose, whenever I couldn’t remember how to accomplish a particular step, whenever I made a mistake, I would climb into bed, hide under the covers, and soak the pillow with my tears. Once I cried myself dry, I got up, splashed cold water on my face, went back to the loom, worked things out, and continued warping.

I felt euphoric when I finally finished warping the loom. I had a silly grin on my face that lasted several days.

Unfortunately, in the push to finish warping, I had overdone it. As eager as I was to sit at that loom and start weaving, I had no choice but to take a break for a couple of days.

Finally, I felt better, and it was time to weave.

I sat at my loom gazing at the warp stretched out in front of me. This was it: the fulfillment of all my dreams, the culmination of all that work. I looked forward to the hours of meditative weaving ahead of me.

My hands were shaking when I picked up the shuttle holding the weft thread. I took a deep breath, eased the tension in my shoulders, relaxed my arms, and flicked my wrist, sending the shuttle flying across the warp, leaving a trail of yarn behind it. As soon as the shuttle left my hand I relaxed: my heartbeat returned to normal, my breathing slowed down, and the tension in my muscles melted away.

I sighed and settled into the job ahead, watching the emerging pattern, dreaming about the finished piece, about the end to the nightmare, about recovery.

After I wove a few inches, I studied the result, and…something wasn’t quite right. I sat there a few minutes puzzling over this feeling of disquiet. I gazed at the warp, contemplating the strip I had already woven, pondering the issue.

I sat there a few minutes, frowning, my lips pursed, my gaze alternating between the part I had woven and the virgin warp.

I tried to ignore that niggling little voice in my mind, but it would not be silenced: I did not like the warp. I did not like the way its colors interacted with the weft. I was not satisfied with the width of the strips of the blues—they were not wide enough, they were overshadowed by the oranges and the white.

I tried to shrug it off: it wasn’t really a big deal, it actually looked pretty good. In fact, it looked very good. But…I didn’t want very good. I wanted, I needed, spectacular.

There was too much at stake here. This was no mere project; this was about my life, this was about becoming a whole person. This piece had to be done right, and I had to know that I could do it right, from start to finish.

Should I keep going or should I…start afresh? I had a great deal of trouble verbalizing the latter possibility, and I shied away from that thought whenever it tried to wriggle its way into my consciousness. But it wouldn’t go away, and after a couple of days I accepted the inevitable.

I decided to start from scratch. Once I made the decision, I knew it was the right one.

Filled with conviction, I fetched the scissors.

When I held them at the ready, about to cut a warp bundle off the loom, I paused, gulped, took a deep breath, positioned the scissors carefully, closed my eyes, and… snipped. Every time I closed those blades I gulped, but once I’d cut through every single warp thread, I felt relief.