A Photograph of me without me in it

A Photograph of me without me in it
A photograph of me without me in it

Wednesday, July 30, 2014

Nine Lives

Yesterday morning when I was putting on my right shoe, I noticed new wrinkles on the inside of my left knee. Not deep wrinkles. Gentle waves of wrinkles. Their appearance reminds me again that I am aging, which means that I am dying, and throughout the day I thought about the many lives I've lived in this one life.

There's the first life, the one I don't remember. I spent those first years growing from a tiny dot to a not-as-tiny person, being born (what an adventure that must have been), learning to drool my first words (adored by my parents and grandparents, aunts and uncles) and to crawl and even walk. (My first brain tumor was beginning to grow then, too.) I must have been well cared-for in those early days, since my latter days have been mostly joyous ones. (The importance of those early days is one of the things I've learned in the School of Social Work.)

In my second life, a life I remember in snatches, I discovered that when you rub two bricks together, you get sand, that some kids threw their valuable toys in the creek for reasons I could not imagine, and that a train would flatten a penny if it ran over it. I learned the word "probably" and began to learn the uncertainty of the truths I thought I saw clearly before me.

And then there were my lives marked by elementary school, middle school (my ugly duckling life), high school and college (my beauty queen life), my twenties (my first teaching life), thirties (my life divorcing my wealthy doctor husband and joining with my not-as-wealthy teacher girlfriend), my next life with brain tumors, the swine flu, pneumonia, food allergies, and a nasty car accident, and now my life post-brain tumors (I hope), with disabilities and a slower way of moving through the world: a life of gratitude for all the lives I've had, and especially for this one. This life, I notice, is my ninth life. I'm glad I'm not a cat.

As I mulled over my wrinkling skin and my many lives, yesterday, my friend Joanna sent Stanley Kunitz's poem "The Layers," a poem that resonated with me. It begins:

I have walked through many lives,
some of them my own,
and I am not who I was,
though some principle of being
abides, from which I struggle

not to stray.

I wonder if through these many lives, I shed my skin like a snake, though the core of who I am remains in tact, or if I'm more like those wooden dolls inside of dolls: looking similar as I get bigger, but ultimately separate beings. 

When the caterpillar becomes a butterfly, does it maintain its essence of caterpillarness or does it lose that life on the ground?

Am I evolving or am I reincarnating, life after life in this one life? Certainly, I look back on my younger selves (especially the ugly duckling and coming out selves) with great compassion. 

What if each of us could remember previous lives, an Israeli remembering a life on the Gaza strip, a prisoner remembering life as a prison guard, a liberal remembering life as a Tea-partier?

Would we live in a more compassionate world?

My mom says that I was a born an old soul, and sometimes, I glimpse my previous selves, like shadows just beyond my vision's periphery. Sometimes I glimpse my previous self in the people whom I see on the bus or walking down the street. They seem unaware of me, and I wonder what it was like to be them. 

And often I see someone whose life I have not lived and cannot imagine: what would it be like to be a person who seeks fame and fortune, or one who rages with unseen demons, or one who tortures ants for fun? 

What would it have been like to touch Jesus's hem or see visions and lead the French into battle or trade or be traded in slavery?

Are those lives that I have in store, or is there some end to this being and not being?

So much to wonder, but mostly for now I am delighted to live in this skin, in this life. I feel lucky, but perhaps this is just one of my passing lives. 

As so often happens when I think of living and not-living, I hear Walt Whitman's words: "And to die is different than anyone supposed. And luckier."

How did he know? Is it because he had seen so much of death as an ambulance driver during the Civil War? Did I also glimpse death when the doctors split my skull and my cerebellum to remove that big nasty tumor? 

Did that brush with death leave me less afraid and more alive?

Thursday, July 17, 2014

The e-generation

Last week, I was flummoxed by an email exchange among students working in a group together on a project for our class. I read all of the emails and thought that I understood that there would be a meeting tonight after class to discuss the project. 

After fretting a bit, I wrote an email to the group about how I couldn't attend a meeting after class because of fatigue. I did some verbal summersaults, trying to communicate what fatigue is, how it is different than being tired, and how it limits me. I also tried to communicate that I want to be involved and to do my part, but with my disabilities I will need to find a different way to participate if the others need to meet after class. 

I had completely misunderstood their communications. They are not planning to meet on Thursday night. My summersaults were unnecessary and perhaps irritating because the message was so long. (I imagine that my classmates, a decade or two younger than I am, were reading on highly intelligent phones and that, for this generation, a short email is courteous.)

A patient classmate explained to me that we would agree to have seen and thought about the film by tonight, would check in during tonight's break, and would plan using a google-doc. Closer to our presentation, we would need to meet, but not before. 

Wow. This is different. I don't think that my confusion was because of my tumors and disabilities. I'm guessing that it was because of generational differences. 

For 27 years, I have been facilitating groups of teenagers and adults in meetings designed to plan some project, and I've been teaching young people and adults how to lead and participate in effective meetings.

In all of these years, others have come into my culture, and I have seen it as my responsibility to teach them how to have an effective meeting. Now, I'm wondering if I was just teaching them to have an effective meeting in my culture and if now I need to learn to plan in a younger culture. 

I have had these misgivings before. Once, when my colleagues Jennifer and Jill and I were helping students in the high school's "Latinos Rise Up" club, I wondered aloud to my colleagues if the students just needed to lead meetings in their way and if we needed to watch and learn and to help adjust within their (teenage) culture. 

In the same high school, I attempted to teach students about code-switching, a concept that explains that we all speak differently, adjusting for our different cultures, and that people who were not members of the powerful business culture had to be especially aware of this. Because many of my students were poor students of color and about a third  had migrated to the U.S., this lesson was an especially important one.  They needed to learn the language of commerce and I needed to express respect for their cultures and dialects. 

As an example, I described to students how between classes, they stood in circles outside my room talking energetically to one another, all speaking at once, and I never had any idea what they were saying or how they communicated. Then they would come into the classroom and would speak one at a time and in a way that I could understand them. They laughed at the familiarity of this scene and at the clear fact that I didn't understand them, though they were often speaking English, when they talked casually with one another.

In a different instance, about 15 years ago, Ann and I were walking through our neighborhood, which was largely African-American. (That's changed with gentrification, but that's another blog entry.) We walked by ten African American teenage guys who were animatedly discussing shoes. Though the guys were plenty loud, were speaking English, and Ann and I knew the topic, we had no idea what these guys were saying. It was like listening to a conversation between native Spanish speakers: we recognized the words but needed translation to follow the meaning. 

This generational gap is not new. When I was in high school, my friends and I loved to go to The Rocky Horror Picture Show at midnight on Saturday nights. We dressed up, toted toast and umbrellas to the movie, and yelled lines we'd learned at the film: "Where's  your neck?" we'd ask the guy spinning the world. We'd throw toast when they made a toast, raise our umbrellas as Brad and Janet made their way in the rain, and--of  course--do the Tim Warp. 

Dad once  asked my Sister Jen and me what the movie was about, and we tried to explain, but he kept wanting to know the plot and that wasn't really the point.

When I was in college, my parents heard my boyfriend and me laughing as we quoted lines from Monty Python and The Holy Grail, so they rented the movie (something people did back in the day, in a form called VHS from a place called Blockbusters). They hated it. Mom still calls it that "silly movie with the coconuts." Having grown up in the 1950s, they didn't understand what we thought was so funny. 

In a similar experience, though this time I am on the cultural outs, I watched the movie my classmates had chosen to explore, The Royal Tenenbaums. I am so bored with it that I can hardly bear watching it and dread needing to review it for the assignment. I suspect that I just don't understand it as Mom and Dad didn't understand "that silly movie with coconuts."

I'm no luddite. I was the first faculty member to use an electronic grade book at my first teaching job in 1986. (My colleagues, at least 20 years my senior, mocked me for this as they toted their green grade books around.) Also, I earned an MA in education with an emphasis in educational technology in 1997. Significantly, in the 1990s I moved my school's journalism program from paste up to computerized layout: I introduced my journalism students to the first version of Photoshop (the only time a full group has gasped when I demonstrated something.) I always learned enough of the technology to choose what we would use and to introduce my students to the programs, and their skills quickly surpassed mine. 

About 15 years ago, I attended a  technology conference where I read an article that described anyone over the age of 25 as "an immigrant" to the culture that has grown up with technology. My students from that time would be in their 30s now, people at home in the land of Facebook friends and online planning. 

Like my students from that time, many of my classmates are now in their 30s. I am older than they are, as are many of my friends. To wit: my partner Ann and I celebrated her 70th birthday last week. In March, we celebrated my 50th birthday. I'm aging. We all are. (Besides, who but an old person and a geek--I am apparently both--would use the transition "to wit"?)

I grew up in the 1970s and 80s, but I was always more a child of the 60s: listening over and over again to Simon and Garfunkel's album Parsley, Sage, Rosemary, and Thyme and Joan Baez ("May you stay…forever young".)

No, I will not stay forever young. I will always be an immigrant in the e-generation's culture. I didn't grow up plugged in or making virtual friends and having virtual meetings. 

Last quarter, I met with a similar group, got frustrated because I didn't understand how the members were planning, and created a job for myself so that I didn't have didn't have to understand them. Last quarter, I was frustrated. This quarter I'm fascinated.

This time I'm going to try to stay with the team and to learn how my classmates are working together. I'm going to try to apply "Satya," the concept we discussed in my yoga class last night. The Sanscrit word is generally translated as "to speak the truth." My yoga teacher Stephanie talked about what it means to her: staying present as a witness in each moment. 

So I'm going to try to learn from this experience how these young uns plan together. I am not going to try to lead, as is my want. I wonder if I will decide that my process, a process from an older generation, would have been better or that theirs, from a younger generation, is in fact better. I suspect that I will discover that I have something to offer as well as something to learn. This is what I always discovered when I was teaching teenagers. That learning and giving, for me, was much of the joy of teaching.

Now that I'm a student, it's the joy of learning. And, I suppose, teaching and learning are really the same thing. 

Thursday, July 3, 2014


Ann drives me to my internship, a 20 minute ride, two mornings a week. Then, I work for four hours and take the bus home, a one and a half hour ride. Ann would drive both ways, but I insist that I take the bus. Maybe it seems to you like I should be better about accepting help (I've been told this before), but it's complicated.

Before my tumors, Ann and I were careful to share responsibilities. We each cooked and cleaned, gardened and shopped. One week, I would do the grocery shopping and cook and Ann would clean the kitchen and do the laundry. The next week, we would switch. We gardened, hiked and biked together. We practiced yoga together. It was lovely.

Sometimes, one of us would do something the other didn't do, but we balanced that, too. For example: I made the bed and the travel arrangements. Ann fixed things and took the spiders outside.

Because we both worked in education, our salaries were usually comparable, so we contributed evenly to the household expenses. When one of us made more money than the other, that person contributed more. Usually that was Ann, but sometimes it was me.

Having grown up in a Southern culture where, it seemed to me, the women did more than their share (and it was unpaid), it was important to me that Ann and I balance the work in our home. Ann acknowledged her own tendency to do more than she really wanted to and then to feel irritated about it. So balancing the work was important for her, too. It was an important part of our relationship.

My tumors, however, have upset this balance. With my disabilities, I can't use fire or sharp implements safely, so I don't cook or light candles. I fatigue easily, so I seldom do all of the laundry or the cleaning myself. I don't garden because of balance and fatigue. I don't shop. I don't drive. Biking (tricking) and hiking are more complicated. We practice yoga at different levels and attend different studios. I miss doing all of this together.

I need a lot of help. The day before I left the hospital after neurosurgery, nurse Joey sat beside me. I remember her because she was the only nurse who ever sat with me and because of her admonition. 

She'd watched me for the three weeks that I was on her floor, and in a little lecturette she said to me, "You're going to have to learn to accept help." I found the admonition strange because at the time Mom and Ann were flushing the toilet for me.

If you read this blog regularly, you know that poetry usually sings to me, but along this theme I find myself singing a Beetles song:

When I was younger (So much younger than) so much younger than today
(I never needed) I never needed anybody's help in any way
(Now) But now these days are gone (These days are gone), I'm not so self assured
(I know I've found) Now I find I've changed my mind and opened up the doors

Accepting help is sometimes a little hard for me. Friends give me rides, slow down with me, and let me sleep on their couches (or their beds) during visits. When they come to our house, I say good-night before they leave, and they don't razzle me about it. 

Accepting help from Ann is mostly okay, too, but she has so much responsibility in our home that whenever I think I can do something on my own, I try to. Sometimes this may look to outsiders like I am stubbornly unwilling to accept help. But really, I'm trying to learn to be a good partner who needs help often, but not always and respects Ann's need to be independent, too. 

Ann and I are in our twentieth year of living together. I feel lucky every day, every moment, for our relationship. Most couples who've been together for decades talk about the hard work. 

In many ways, we have not had to work hard at this relationship. When we first got together, we did not promise the future, but the present: we promised to be as honest as we could be with ourselves and one another. Each of us promised to be true to who we were. 

Early in our relationship, we had "Saturday morning talks," where we would review the week and talk about anything that might be nagging at the corners of our minds. In our later years, such talks have become habitual, part of our everydayness in being together. We have not reserved these conversations for Saturday mornings, but hold them as the need arises. One of us says, "Can I talk to you for a minute?" We sit on the couch, hold hands, and talk. 

My brain tumors, treatments, and disabilities have in some ways disrupted our ways of being together. Because Ann is twenty years my senior, we had always assumed that one day I would take on much of the household responsibility and that she would precede me in death. Instead, she's taking care of me a lot, and we are more aware of our vulnerability, of the possibility that either of us could go first. And that it will be hard for the one left behind. 

In this, one of my favorite poems comes to mind--Sonnet 73 from Billy Shakespeare:

That time of year thou may'st in me behold 
When yellow leaves, or none, or few, do hang
Upon those boughs which shake against the cold, 
Bare ruin'd choirs, where late the sweet birds sang. 
In me thou see'st the twilight of such day, 
As after sunset fadeth in the west, 
Which by-and-by black night doth take away,
Death's second self, that seals up all in rest. 
In me thou see'st the glowing of such fire 
That on the ashes of his youth doth lie, 
As the death-bed whereon it must expire 
Consum'd with that which it was nourish'd by. 
   This thou perceivest, which makes thy love more strong,
   To love that well which thou must leave ere long

In this fall of our lives, our love is strong. The challenge for me remains: how do I remain true to myself and clear about who I am beyond the bounds of our coupledom, when I need so much help?

In settings with people who live with disease and those in our lives, Ann is often identified as the "caregiver." I certainly prefer this term to "caretaker," which sounds like someone who cuts the grass and trims the hedge, and puts me in mind of an undertaker, but I am still uncomfortable with the fact that the term identifies her in terms of me. Yesterday, at my practicum at the National Multiple Sclerosis Society, I read the term "care partner," which I like better. 

We are partners in this, as in all things, and we are learning how to live our lives in this new way, committed still to honoring each of us as an individual within this marriage. 

P.S. I shared this entry with Ann before posting it to make sure it seemed okay with her to share with you, and she said, "You make our relationship sound perfect." To tell you true, I guess it's not perfect, but it's pretty darn good. Once, when Ann told our neighbor Robin, "I think Mary's pretty special," Robin said, "That's how it should be." So I think Ann's pretty great, and that's how it should be, but I don't want to be maudlin about it. I just want you to know that disabilities challenge our ways of being together.