A Photograph of me without me in it

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

Sunday, November 24, 2013

Ritual of Loss and Celebration

Yesterday was a beautifully sunny, blue skies and cold winter day in Seattle. It was one of those days that brings to mind Perry Como’s cheerful song:

The bluest skies you've ever seen are in Seattle
And the hills the greenest green, in Seattle
Like a beautiful child, growing up, free an' wild
Full of hopes an' full of fears, full of laughter, full of tears 
Full of dreams to last the years, in Seattle 
. . . in Seattle.

Ann and I decided to do a ritual of loss and celebration on this day because part of the ritual involved going to the shore of Lake Washington and throwing stones in the water, something that seemed more pleasant on a sunny day (even if it was cold.)

Those of you who have been reading this blog know that I have been struggling with loss and grief over the past month or so. An activity in my Death and Dying class seems to have triggered my grief, but it has been hiding in some dark cavity of my body since my tumors were removed and I started learning to live my life with both losses and gifts of that experience.

As I've grieved this month, I've had the sensation of free-falling and whirling. My dear friend Ellen (a godsend) gave me a handout that her doctor had given her when Ellen’s sister died. According to this handout, some cultures allow someone a year to be insane when a person is grieving. Yes, I felt crazy. The handout also says that healing is not linear and is not even circular but instead moves in a spiral. Yes, that makes sense to me, too. Each time I’ve thought I had found solid ground and sanity again, the whirling would restart, though I didn't feel like I was returning to the beginning. 

My first yoga teacher Denise (another godsend), recommended that I read Jungian therapist Ginette Paris’s book Heartbreak: New Approaches to Healing—Recovering from Lost Love and Mourning. Though the book is written for people who have lost a partner to divorce or death, the book is essentially about mourning and has normalized some of my experience.

According to Paris, grief triggers the same sections in the brain as torture. That makes sense to me. She writes about the common sensation of free-fall. (Though I don’t generally like to be common, I was relieved at this.) She writes about manic emailing (ask my Death and Dying professor—another godsend, bless her heart—about this.) Paris shares a man’s story about grieving, and at the end of one section he writes, “I feel like a turtle dying in its shell.” Though I haven’t felt like I was dying, I have felt like a turtle pulling into my shell.

All of this was helpful, but I needed some one to help me particularize my experience, so I went to see my therapist. When I met when my therapist (yet another godsend) last week, we talked about grief and loss from my brain tumors and their treatments. 

Though I didn’t die during surgery and a lot of terrible things that could have happened didn’t happen, I did experience losses that have changed my life, and I have seen Prufrock’s “eternal footman hold my coat” (three times now, with the two tumors and the car accident).

My therapist described my personality in these situations with an accuracy that surprised me: she surmised that after surgery, I said, “Well, this is my life now. I’m going to get on with it and do the best I can.” She described me as edging towards stoic, but not stoic. She also theorized that I was angry after the death simulation in my class on death and dying because the activity exposed my vulnerability.  Yep.

My therapist asked me to talk about my losses, but all I wanted to talk about were the gifts.

She pointed out that in our culture, we don’t have rituals for such losses and such a near experience with death. We merely say, “Thank heavens I (or you) didn’t die,” and move on as if that’s it. She suggested that I create my own ritual to acknowledge both the losses and the celebrations.

I thought about this ritual on the bus ride home, and when I got home my partner Ann and I talked about it. Ann’s losses and celebrations are in some ways different from mine, but these experiences have rocked her world, too. That night I imagined a different ritual, and we performed it yesterday. Yesterday was busy, and today would be, too, but I need some time to rest with the ritual and my emotions around it, so I have skipped church today. Some days, I just have to.

Yesterday, Ann and I sat at our dining room table and each made a two column chart: on the left, we noted the things each of us have lost and on the right we noted our celebrations, things from our previous life that we continue to hold dear and gifts new to us since the tumors.

When we finished, we read our lost items to one another one at a time, and used a Sharpie to write the words on a river rock that we would later throw into Lake Washington. (Though because part of my assignment is to integrate those losses into my life, perhaps we should keep them in our lives. We have more river rock—lots more—so I’ll ask Ann what she thinks of this.)

Then we read our celebrations and wrote them on rocks that we would keep in a wide bottomed vase that Mom gave us.

There was a lot of overlap in the losses and celebrations, so we just combined our lists into one:

Reading any book
Adventure travel (El Salvador, Africa, Alaska…)
Financial ease
Taking two steps at a time
Identity as an athlete
Walking all over the city
Sharing chores
Single vision
Not thinking about my vulnerability
Ann and Mary
Family and friends
Connecting with new people and new communities
Sense of self
Using the bus
School of Social Work
Physical closeness
Travel in developed areas
Reading on a Kindle or a computer
Some independence
Identity as a thinker
Shared interest in social justice
Awareness of people with disabilities
Reading together
Quiet evenings
Slower pace
Biking and triking
Storm basketball
Travel where we can (Mt. Rainier, Hawaii…)
NC beach with family
Sense of humor

Now, I think my learning is how to integrate my losses with my gratitude, so that I embrace each as sacred. I think I understand that this is my next step, but it’s wholly theoretical to me right now. I have no idea how to do that. The thought of it, however, feels more gentle than the whirling I’ve been doing these last few weeks.

If you are whirling--whatever your whirling may be--please be gentle with yourself. I'll try to be gentle with myself, too. 

Friday, November 22, 2013

Planning Ahead

For my class on death and dying (it’s kicking me in the heart), I completed an advanced directive, a document to identify my proxy, the person who is to make decisions should I be unable (not just because I’m indecisive, but because I’m in a coma or something like that.) 

This is the second time I have completed an Advanced Directive. The first time, I was preparing for brain surgery. At that time, I also drafted a will: everything goes to my partner Ann, so that wasn’t hard, but I did note sentimental items that I wanted to go to my nieces and nephews. (My sister wanted to know, “What about me?” It was a good question and is interesting that I didn’t note specific items for family or friends in my generation: I think I felt that with these people I had lived a long life and would be remembered for the gifts over time, but I felt that I was leaving the younger generation before I knew them as adults and felt they needed a token to remember that I loved them.)

The first time I wrote an advanced directive, I didn’t spend much time or energy on it. Though I knew it was possible that in surgery I would die—or what seemed worse to me, lose my sense of self—I felt I had lived a full and good life and loved people who also loved me. I trusted my partner. (I still trust her. We took a quiz recently to determine how well she knows my wishes. We have been good students for our lifetimes, and we did well.) 

I believed Ann would make respectful decisions about my care in any circumstances that I could not at the time predict. I am not afraid of death, and though I’d like to keep living as my life is more whole, peaceful, meaningful and full than I ever imagined it would be when was a child, it seems likely that I will one day die. For this life, I really feel amazingly lucky.

An attentive student, I was more deliberate in filling out the directive this time than I was before my surgery, when so much was going on. I suspect I put more thought into it this time, and it has more details than my last advanced care directive, but it is essentially the same. 

I was sad about the possibility of my death before brain surgery, and I would be sad now if I were to learn that I am going to die soon. I love my life, and there are things I’d like to do before leaving: publish a couple of books, begin a new career, work in some new way for social justice and continue the work I’ve been doing, watch my nieces and nephews grow into adulthood, deepen connections with people I love and make new connections.

Aside from having goals, I generally like living: I would like to continue loving the everydayness of gratitude for my partner, family and friends, good meals, a rose’s perfume, the hillsides of Paradise (at Mount Rainier) in August, poetry that sings to me, connections with strangers for brief moments of noticing their mysterious humanity, finding a right analogy, learning a new word, noticing the humor and the absurdity of so much around me, feeling my body stretch, breathing in sacred breath.

As those of you who follow this blog know, I have been having a hard time. I have been in free-fall, spinning with grief and loss. I suppose that I was so busy working to claim my life after surgery that I did not take time to grieve, but deep sadness was in me, and this quarter it surfaced. Like a turtle, I pulled head, arms and tail into my shell and tried to nurture my heart. Each time that I thought I had come to peace, I would poke my head out and fall and whirl again. I am reading a book on grieving (thanks, Denise!) that normalizes much of my experience: the feeling of being in free-fall, feeling like a turtle in my shell, manic emailing (sorry, professor!) 

For now, I feel like I am on solid ground again, though I am more aware of its tenuousness.  It could give way at any time. This is not madness. This is being human.

I am a different person than I was at the beginning of this quarter. I feel like my old self and my new self are just getting to know one another. The image of dogs sniffing one another (no, not the bum sniff), keeps coming to mind. I trust that these two selves will integrate eventually, and for now I’m just trying to give myself time.

This class has exposed my vulnerability, and though I am generally one to get along fairly easily with people, I have not been easy to support. I have not wanted my professor to take me on as her burden, and I have told her so. I’m not sure why I have been so insistent. Perhaps I am not good at accepting emotional support. 

The day before I left the hospital, a female nurse named Joey sat beside me and delivered a kind lecturette about how I needed to learn to let people help me. The sternness of her advice surprised me at the time. After all, friends and family were helping me stand and walk, flushing the toilet for me, reading to me, and bringing me chocolate chip milkshakes. My community has continued to support me in so many ways, and I am learning to advocate for my needs in school, which means asking strangers who are yet to be friends for help. 

All of these ways of seeking help, however, are external. Asking for help with my spirit is more difficult. I haven’t known how to do that, and I sometimes associate such help with pity, a response to me that pisses me off. I have actually felt respected by and understood by my professor, so maybe this doesn’t explain it. Maybe that’s just a lot of words to say that I don’t like to feel vulnerable, and I have. I am more comfortable being a support than a weight.

What have I learned? I need to be present and pay attention, even to myself and even when it’s hard. Maybe especially when it’s hard. My therapist (who is fabulous. I thank God for her) says that I should integrate my awareness of loss into my daily life just as I have integrated my sense of gratitude.

I have been asked to think a lot about death this quarter, which I don’t think I find especially upsetting. It’s loss that upsets me. As part of this activity, I was required to think about the details of my funeral service. Perhaps oddly, I enjoyed this part. (My paternal grandmother planned three memorial services for herself: one in her seventies, one in her eighties, and the last—the one we used—in her nineties. I carry her name and perhaps her proclivity for planning ahead.)

As the lightest part of the class, we took a field trip to a fancy funeral home with a lot of real estate for graves, fancy rooms, a columbarium (which I hear is lovely, but we didn’t see it) and a crematorium. I don’t want my services or my remains to be in that anonymous place. I want my service to be in my church, a sacred space for me. I want the choir or some lovely soloist to sing. I want familiar hymns to be sung, hymns that are deep with joy and longing. Maybe “TĂș Has Venido a la Orilla” (Lord, You Have Come to the Lakeshore). Maybe “Amazing Grace,” though I’ve never felt like a wretch:

Amazing Grace, how sweet the sound,
that saved a wretch like me.
 I once was lost but now am found,
was blind, but now I see.
 I have not run in such a long time. I miss its ease, so perhaps at my funeral, it would be right to read from Isaiah 41:
But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; they shall walk, and not faint.

Though it may be overdone, perhaps it would good to read the 23rd Psalm:
The Lord is my shepherd; I shall not want. 2 He maketh me to lie down in green pastures: he leadeth me beside the still waters. 3 He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake. 4 Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. 5 Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over. 6 Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord forever.
And for sure, I hope there will be a reading from the end of Walt Whitman’s “Song of Myself”:

I bequeath myself to the dirt to grow from the grass I love,
If you want me again look for me under your boot-soles.

You will hardly know who I am or what I mean,
But I shall be good health to you nevertheless,
And filter and fibre your blood.

Failing to fetch me at first keep encouraged,
Missing me one place search another,
I stop somewhere waiting for you.

I want to be cremated, and I want my ashes to return to nature. For years, Ann and I had planned to have our ashes scattered on Green Mountain, the place where we hiked the day my godson Sam was born. The trailhead to that hike has been closed, however, and it is now several days’ journey to get there. I no longer walk along narrow wooded trails, so I no longer want to rest there. Perhaps, I’d like to rest at Paradise, where the flowers bloom in hillside bouquets, the mountain watches over the fields on lovely days, we’ve watched a black fox hunt for an early morning snack, and I can still walk with Ann’s help along the paved and firm gravel paths.

This sounds like a lovely service, doesn’t it? I hope it won’t be needed for a long time.

Peace. Namaste. Mary

Sunday, November 17, 2013

Emotional Intelligence

Last night Ann and I went to our friend Nikki's house for a game night with friends from church. I have been so down lately that I have pulled deep into my shell, and I really wasn't in the mood to go. We had agreed to help host, however: we had advertised with friends, I had thought through the organization and Ann had baked cookies and gluten-free brownies, so I felt obligated and went. I didn't complain, but I did drag my feet.

I'm so glad I went: the evening was such a gift, full of laughter and community. We had three tables set up for games: Boggle at one, Qwirkle at another, and Rummikub at the third. In the first round, the Boggle group got bored and changed to a Bible trivia game, which we played when I moved to the table. Bible trivia was a surprising hit among a group of Christians who don't read the Bible in public much. 

We didn't play the game competitively, as it was designed. We took turns with one person reading a question from a stack of cards, and others trying to conjure the answer. Allyson gave a token to anyone who answered correctly or looked like they might answer correctly, or didn't answer correctly but followed an impressive line of thinking, or had a clever or amusing answer. Our friend Aaron wasn't able to come, so we called his partner Steve's phone "Aaron," and Aaron got a token whenever the rest of us didn't know the answer but we suspected that Aaron, who has a divinity degree, would have known.  We laughed a lot.

After two rounds of table games, we all came together around the couch to play "Things," a game that Mary #43 and her partner Hadley had brought. The people who created "Apples to Apples" created this game: one person read out a question about "things", like "What thing should you not lend out?" and then we piled our responses together and took turns guessing who had answered what.

The most common thing you shouldn't loan out was your underwear (I, the pastor Karla, and Karla's daughter Emily all wrote that--probably because Emily is an English Literature major, as was I, and our literary aesthetic has influenced Karla). You also shouldn't loan out your spouse (Ann said that: bless her), your children (though some were offered up), used toilet paper, and a variety of other things.

We did two rounds. In the second round, we noted what you shouldn't do at the beach. When my friend Pea drew three answers together, saying, "You shouldn't streak as a way of flirting with the lifeguard just before you drop the #2 bomb," Pastor Karla laughed so hard that she threw her head on the table with a bang. We all agreed that the best answer was "sweep" and guessed at the people we find most clever. It took awhile, I'm ashamed to say, for someone to guess that the clever respondent was Ann, who is quietly hilarious, so you might not guess. But I should have.

Ann's line became part of Karla's sermon today: sweeping sand at the beach became a metaphor for doing a meaningless activity that keeps a person busy but doesn't contribute to anyone's well-being.

At our game night, we laughed, ate cheddar popcorn and trail mix and Ann's chocolate chip cookies and gluten-free brownies. Some of us had wine and others had fruit drinks. Some of us had a little of everything. We all had fun.  

After spinning with grief for a couple of weeks, I felt so relieved by the laughter and sense of community. 

This morning, most of the same people were at adult education, led by our friends Annie and Mary #43. We did not laugh in this group, however. For a second week, we discussed systemic racism and the prison industrial complex: we felt betrayed by the fact that we have allowed such a thing to happen in our lives without our even noticing. 

This week, after a few technical difficulties (another Mary figured it out: I've got to get her to choose a number), we listened to Michelle Alexander's speech at Abyssinian Baptist Church in Harlem. (You can find it on youtube at http://www.youtube.com/watch?v=P75cbEdNo2U). We wondered at the system's root. We wondered how to extirpate such a complex system. We wondered what we could do.

I was in a small group discussion with my friend Lori, whose advanced Cerebral Palsy does not allow her to use language. She communicates both joy and sadness, however, and she was clearly agitated. I wish I knew how to learn what she was thinking. 

Though the discussion was not at all funny--rage and confusion were the commonly expressed emotions--I felt again the connection of community. It's not exaggerating to say that though I don't think the community was aware of i,t and I certainly wasn't at the discussion's center, the community embraced me as we discussed the topic together. 

I have been wondering in this grieving time how to be gentle with myself, as my professor Bonnie always tells us to be. How do I simultaneously honor both grief and joy?

Ann and I read this Rilke quote tonight, perhaps words that show me the way, or give me courage for the way:

“So you mustn't be frightened... if a sadness rises in front of you, larger than any you have ever seen; if an anxiety - like light and cloud-shadows, moves over your hands and everything you do. You must realize that something is happening to you, that life has not forgotten you, that it holds you in the palm of its hand and will not let you fall.”

Perhaps the ability to hold together such opposites requires an emotional intelligence that is new to me. Perhaps I am learning. I hope so. I understand that grieving is important, but it really isn’t fun.

I love a few people who are alcoholics who are currently not drinking. I know one of the signs that someone may relapse is self-isolation, and we work together on not isolating.

I need to keep this awareness in front of me: there is a barely discernable difference between taking some time to myself to rest and to heal and isolating, dragging myself further into the darkness.

Golly. Every time I fool myself into thinking that I am on the path to wisdom, I learn how much I still have to learn.

Perhaps you and I are learning together. Or perhaps you find my journey mysterious. Or perhaps you are a jedi knight watching this padawan muddle through.

Whatever your perspective, I want to try to tell you how much your place in this blog community means to me, how important it is to have company in this journey, but—for once—I do not have the words.

I do have the heart. So please hear my heart when I say thank you.

Thank you. 

Saturday, November 16, 2013


Last week in Silver Sneakers exercise class, our substitute leader Charlesetta directed us to stick our necks out like a turtle sticking its neck out of its shell in order to stretch the backs of our neck muscles. This is a good metaphor for where I am now, after a couple of weeks of spinning in grief for losses from my brain tumors and their treatments.

As I have struggled, I have pulled myself into my shell. I tucked legs, tail and head into my protective armor. Now that I seem be out of the whirl of storm waters and to have found a temporary resting place, I am sticking my head out of my shell and looking around to see if the world is safe again.

According to the Stanford Binet Personality tests, this is how I deal with anxiety. If I remember correctly, I am an INTP. We are a rare breed, we INTPs, making up only 1% of the population. (My tumors were also a rare breed, and I also have symptoms that my naturopath calls "rare and peculiar.")

We INTPs are introverts and abstract thinkers. We can be obsessive about accuracy in language. I remember reading that we should be teachers and that we should not be writers. (uh oh.)

I can't remember for sure if my last letter was a P or a J, but I do remember that my most extreme personality trait was being an introvert instead of an extrovert. I like to pull myself into my shell and figure things out before I engage in the world.

I have a pair of earrings with the Native American design of a turtle on them. Years ago, a man who seemed to be Native told me that I must be a turtle, that a turtle is at home everywhere because the turtle takes its home with it. At the time, I didn't think that was me, so I merely nodded politely, but I've wondered about it ever since, and perhaps this stranger saw something in me that I did not see in myself.

I do carry an awfully heavy backpack, and others and I have puzzled over why I insist on carrying my load. Though I ask for lots of help, I will not accept help with my backpack. Curious. Perhaps I think my backpack is my shell: it is my burden, and it protects me.

As an adolescent, I went to Camp Seafarer, a sailing camp for girls, every summer. I loved to sail the little Sunfishes, small boats with their hulls close to the water. I liked to feel the water drifting over the hull, to feel the rush of wind, and to duck as the boom flung itself from one side to the other when I would jibe. If I capsized the Sunfish, which I did from time to time, it was easy to right as long as it stayed on its side. If a sailboat turned upside down, its mast pointing to the river bottom, its hull floating on the water like a turtle shell, it was difficult to right. We called this turtling.

I have been turtling over the past couple of weeks. I have been like a sailboat with its mast pointing at the river bottom, like a turtle on its back. I have been unable to right myself and have needed help.

Last year, when I was writing with some friends, the person providing the prompt asked, "If you were an animal, what animal would you be?" I rolled my eyes (internally: I generally have good manners.) I was obviously a cat, an independent being that hunted when it wanted to and napped in the sun when it felt like it. I might let someone pet me, and I might purr, but I didn't feel like affection I hid in plain day. 

The assignment was so easy that I decided to imagine myself as another animal. I imagined myself as a dolphin: "2) I am a dolphin. I swim in the ocean with the sharks, but I don’t get too grim when they bare their teeth. I tell them jokes and hope that some day they will laugh. They never do."

I still had some time left, so I tried again. This time, I was a turtle. I wrote:

3) I am a turtle. I carry my house, which I call a backpack, on my shoulders. I move slowly. If there is a bright light, I bob my head in its direction. I will not rush.

I was born wrinkled, old before my time began.

When I hatched, I dug myself out of a sandy hole and flippered my little shell over hot sand mounds to the ocean’s shore, watched over by sentimental tourists and frigate birds. I do not want to be a frigate bird snack. I have not yet lived long, but I know that I do not want to die yet. I work for life.

I want to go to the home where I belong, an ocean of warm and cool currents, friendly starfish and blob-like jellyfish. An ocean where I can go unnoticed.

I carry my home wherever I go. My shell is my home and my shell is my shield, too.  When I feel shy or uncertain, I pull my head in unapologetically. I am a rock.

You will not know me. You will know only my shell.

After writing, I remembered that I had played this imagination game 25 years ago when a friend who is now a psychiatrist told me about an exercise in which you ask someone three times what kind of animal they would be. Each answer gave some insight into the person, which I think was:

What kind of animal are you?
1.   How you see yourself.
2.   How others see you.
3.   How you truly are.

So I saw myself as a cat, but I was not truly a cat. I imagined that others saw me as a dolphin. Really, though, I was--and am--a turtle. Because I now know that sea turtles  can’t pull their heads and legs into their shells, I realize I am a pond turtle. Perhaps I thought of myself as a big turtle in a small pond, and I set out to travel in the ocean.

Lately, I have traveled through rough seas, and though the storm has settled for now, my shell is a little cracked. I am more vulnerable than I used to be. Though this crack is not life-threatening, and I continue to go about my days in much the same way as I did before, this crack will not heal. I am forever a little broken. 

I don’t know what to do with my brokenness. Perhaps like Nemo, I should just keep swimmin’, but I think for now I need to heal. I need to join my buddy turtles in their line on a log in a pond and soak in the sun’s warmth.

I understand the metaphor, but I don’t know how to do that. Perhaps this is my learning for now. I do yoga each day, as I have for the last twenty years. (I have renamed “Child’s pose,” a healing pose where I curl into myself, my shins flat against the mat and my back arched over it like a turtle’s shell, “turtle pose.”) I read poetry and remember the lines that come to me in difficult moments. (“I wake to sleep, and take my waking slow. / I go by going where I have to go.”) I took a meditation class a couple of weeks ago and am meditating each morning (just for ten minutes—I’m not ready to be one of those guys in the high mountain caves who meditate all day). I’m reading articles and poems and books that you are sending me. I am breathing and being: that’s all I know to do.

If you, too, are struggling, I invite you to join me on my log in the sun. You and I need to give ourselves the place and time to heal.