A Photograph of me without me in it

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

Monday, August 24, 2015


This weekend, my friends Cheli and Taylor married. The words that keep coming to mind since Saturday night are "delighted" and "miracle." When Cheli, holding Taylor's hand, got to the front of the sanctuary, the rotunda at Southern Oregon University's library, she turned to look at the assembled group, at Uncle Olaf and Karen Kaushansky, at her tenth grade math teacher and her soon-to-be sister-in-law, at her mom and two of Taylor's selected mothers, she grinned and cried at the same time. Her eyes sparkled, as I've often known them to do, with a joy in life and brimmed with tears of wonder. (That may sound cliche, but it's true. What's a blogger to do?) Taylor only looked at Cheli, with a similar wonder and joy. 

This wasn't a wedding I would have witnessed, nor would it have been sanctioned by the state, until…this year?! Is that right?! Cheli wore her mother's wedding dress, altered from its 1980s poofy sleeves, and Taylor wore trousers and white shirt with a bow tie with words from the Constitution on it. "The Constitution now applies to me," she told me after the ceremony. 

At this wedding were family of birth and family of choice, a surprising amalgam of people who had in common a commitment to witness this couple's commitment. 

Taylor's chosen moms, partners Kathy and Penny, were the officiants. Both took their roles seriously and their affection was clear throughout. Several people who'd loved one or both of them for a long time, took part in the ceremony. In one of my favorite of several lovely talks, Taylor's long-time friend janelle shared the story of two of them, long ago, looking at a clear night sky, and Taylor saying, "Isn't it a miracle that among all these planets and stars, in this giant universe and on this spinning earth, we came together in the same time and space to know one another."Taylor says things like that. 

I looked at my partner Ann, and at this group assembled, and agreed in the miracle. And yes, isn't it a miracle that bright-eyed Cheli and doe-eyed Taylor found one another and such love. And that this eclectic mix came together in celebration. 

In another favorite moment, Cheli was supposed to be repeating a vow after Penny, and she added that she was not only solemn but also "delighted" to make this vow. I was delighted, too. I think Uncle Olaf and Karen Kaushansky and the rest of the motley assembly were, too. 

After the ceremony, in the art gallery's reception, family-members of birth and of choice toasted the couple. Another of Taylor's friends told another story that revealed again her earnestness and her sweetness as well as her integrity. This friend told about moving to Ashland, getting to be friends with Taylor, and starting to cross the street outside of the crosswalk. Taylor pointed her to the crosswalk, saying, "This is a small town, and I spend my days talking with young adults about being accountable. I must be accountable to this side-walk." 

Other favorite moments included Cheli's little brother "Frankie," now the father of two boys, telling the group about what hard work marriage is--and Frea later introducing herself as the "wife of the guy who talked about  how hard marriage is." She then rapped a white woman's rap.

(Ann and I later agreed that marriage isn't necessarily hard work, but worth it… but raising children seems to be.)

This motley crew, celebrating these two women's commitment to love one another "for richer and poorer, in sickness and in health…" gives me hope that as a society we may one day overcome other prejudices. Maybe one day we will overcome racism and sexism and able-ism and the other isms--probably not every individual but maybe structurally and legally. 

You may say I'm a dreamer. But I'm not the only one. 

Wednesday, August 19, 2015

Ad libbing

Last week, as I wrote my blog, I wrote about how frustrating working in the ableist world is. I was feeling insecure about my hope of helping others with life-changing health conditions by becoming a therapist for others with serious health issues. I was tired of how long it takes me to get places, tired of taking a class on the DSM-5, a book whose paradigm (that we need to identify abnormal people, give them a label and make them normal) pisses me off, and I was tired of being tired. Many of you wrote encouraging words. Many thanks.

I thought about not writing about my frustrations, but I want to be real with you, and the truth is that sometimes living with these disabilities and with my awareness of my own mortality gets to me and brings me down. I want to be real with you.

This week life feels better. For one thing, my last class of the quarter is tonight, and I've already turned in the final paper. More importantly, though, my attention has shifted somewhat, and my mind is calmer. 

A month ago, I stopped taking a medication designed to prevent migraines. Though it was effective in prevention, it also contributed significantly to my fatigue, so I had decided to experiment with not taking it. Later, I learned in a conversation with my father--in a by-the-way moment--that this medication had originally been developed as an anti-anxiety med. Knowing that I'd stopped taking an anti-anxiety med helped me be more aware of what's going on with me. I’d quit a support I didn’t know I had, and I was feeling the loss.

This week, in addressing this anxiety, I've recommitted to yoga, meditation, and vigorous exercise at the YMCA. (Just the mention of those letters makes you want to sing and wave your arms in odd formations, doesn't it?) Though I have done yoga almost every day for over twenty years, I had gotten busy and tired and had slipped on the habit. Meditation is a newer commitment, one since I took a meditation class in the fall, so it was easy to convince myself that I didn't need it. And going to the gym didn't seem necessary since I was wearing myself out in other ways. 

I'm back to all three, and I think this class ending will be good, too.

Before my truancy from meditation, I sat quietly in the mornings after yoga, trying to focus on my breathing and on a word like "Rest" or "Heal." I've decided that to maintain that focus for now is too hard because for now my mind's too busy (like a former student with ADHD told me once, "My mind's like a squirrel.") 

I've been following guided meditations from chopra.com, which is in Carlsbad, California, according to the somewhat stereotypical airy meditator's voice "the sweet spot of the universe." I keep returning to the meditation on giving up control. 

David G., who narrates these airy meditations, makes some statement about ad libbing your life and in another meditation asks, "What are you really afraid of?" I mushed the two together, and have written this question on our white board: "Are you afraid of ad libbing your life?"

Since my tumors, I think I've been learning the same things over and over (like Annie Dillard in An American Childhood.) The only choice is to ad lib life. This is my human adventure. As the Indigo Girls sing, "Nobody gets a lifetime rehearsal. As specks of dust, we're universal."

My new friend David G. reminded me, too, of Rumi's poem, "The Guest House": 

This being human is a guest house.

Every morning a new arrival.

A joy, a depression, a meanness,

some momentary awareness comes

as an unexpected visitor.

Welcome and entertain them all!

Even if they are a crowd of sorrows,

who violently sweep your house

empty of its furniture,

still, treat each guest honorably.

He may be clearing you out

for some new delight.

The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.

Be grateful for whatever comes.

because each has been sent

as a guide from beyond.

My neighbors Sayre and Andrew gave me this poem for my 50th birthday, so it has been with my all along, hiding in my memory’s shadows and in the pages of my 50th birthday poetry book. It and David G. remind me of what I already know: breathe and laugh; listen to others’ songs and write my own (but don’t sing them: that’s for the lifetime when I inherit my mother’s voice); know that I am okay and that all of life is grace.


Wednesday, August 12, 2015

Stubbornly Optimistic

Two weekends ago Ann and I went to Paradise at Mt. Rainier to celebrate our sixth ceremony anniversary. (We also have a wedding-sanctioned-by-the-state anniversary--2.5 years-- and a private anniversary--20 years.) The day before we left, I had severe intestinal distress (I'll spare you the details), but I was feeling okay that morning and thought I knew the source of the distress (too much of a supplement. Those things are powerful.), so we went.

Friday night, we had dinner at the Paradise Inn restaurant, and--feeling better and being stubbornly optimistic--I had blueberry pie with ice cream AND whipped cream and decaf coffee after a reasonable soup dinner. Big mistake. I spent much of our anniversary week-end in bed while Ann hiked. My other meals were some combination of a dry toasted bagel, apple sauce, and gatorade or Sprite (a little bubbly). 

I'm still easing more gradually into real food, and I have not taken any supplements since I got sick, but my lifelong tendency towards a stubborn optimism, even in the face of evidence that I should be more cautious, remains. 

In general, I think that optimism has served me well. I've traveled in places that made my parents anxious (places where I learned to see the world from different perspectives), taught students with a reputation for being tough (I loved them), divorced my wealthy husband and married my teacher-from-a-small-West-Texas-town wife (who is fabulous, as you know if you know her or read this blog). 

After brain surgery for my first tumor and radiation for the second, I started writing this blog and then came to graduate school at the University of Washington for a Masters in Social Work with a goal of becoming a therapist for people with life-changing health conditions. My oncologist/neurologist warned me that, with my disabilities, I would not be successful in school and would not get a job. I was pissed that he would rain on my stubborn optimism, and I went to school anyway. I'm starting year four of five in school, and it's going well. 

At least mostly it is. Classes have been generally interesting, and assessments have mostly been written assignments, a strength that a rigorous undergraduate program years ago prepared me for, so I've done well. I'm also writing this blog and working on a couple of memoirs (I have a lot to say about my life), and I've been working to encourage the UW School of Social Work to include disability content in its required courses. (It's amazing, but there's basically nothing there now. I've certainly learned more from the project than anyone else has so far, though I hope future students will learn more.)

This quarter, I started my second practicum (internship), which is harder than school is for me. I'm working two afternoons a week at an assisted living facility, and I love the residents, but find that functioning as a worker with disabilities in an ableist world is harder than I had expected. I remember my oncologist/radiologist's prediction, and my stubborn optimism wilts a bit. 

While the other workers whiz around, I move slowly and get less done that others do. I can't hold heavy doors or lift boxes. Elders respond more differently to poetry than the teenagers with whom I worked than I had expected. Some of them seem confused to see me there with my crossed eyes and cane for balance and to learn that I don't live there. (The idea doesn't stick, so sometimes the same person will ask me multiple times, "Do you live here?") I don't remember details as well as I'd like to, and I get more frustrated with myself than is helpful. 

My confidence is wavering, and today as Ann and I ate lunch together, I wondered aloud whether this whole MSW idea had been a silly one. However, Ann's more stubbornly optimistic than I am, and she reminded me of all the positive things that I have already experienced. I'll bounce back, but for now I'm wondering where all of this will lead, and if I might have taken a better route. 

A better route to where? Good question. I'm glad you asked it. Maybe to a role of service or to some sort of work where I can help others with similar struggles. Or maybe the destination really isn't the point. May the point is the route, the journey, as the cliche claims. 

The idea that the journey itself is the point is lesson I keep learning and re-learning (which of course means I'm not learning it at all, but have intimations of this wisdom.)

Fortunately, I just have two more classes and one more paper this summer quarter. My practicum will continue through the break, but I should have more time to sit and look around the path that I'm taking, rather than trying to focus on what I can't see in the distance.