Friday, August 23, 2013

What is a waste of time?

Every day I look at Facebook, which usually means finding out what someone did today, what they're thinking about,  clicking a more or less interesting link, or looking at photos. I don't post anything myself. I look at Twitter and The New York Times. I play Bejeweled Blitz (a one minute game.) I don't spend all day doing these things, but do I want to be doing them at all? Sometimes there is a rare gem, like Saunders' speech the other day. 

I'm not going to agonize about it. For the moment I'm just, as Rilke says, "living the question."

Had a good chat with my dad today.

Ordered some Dutch and Finnish licorice online. Laura is a fan, too. 

Three-month retreat in Spain, 2009

Thursday, August 22, 2013

I don't recognize my arm

My body is turning into a different body. Mushy would be one way to describe it. I look at my arm - the skin and muscle tone - and it reminds me of the arm of my grandma Bruun, who died many years ago.

And even the most mild physical activity somehow makes me feel worse, makes my lungs ache and pant and wheeze for a while. What my body wants, craves really, is to lie still. But it seems from my current point of view that moving is what keeps you alive. It's the reason you can digest food and get tired and walk without falling. 

So many things to let go of.

My birthday was fun, saw more people than I thought I would want to!

Sunday, August 18, 2013

Pharmaceutically-enhanced living

Today I was grateful for modem medicine. I can't do much when I am coughing a lot, it's very hard on my body. I can barely pull myself up from my bed. 

After trying cough syrup, I took .2 mg sublingual morphine, and a few minutes later my cough stopped. The difference isn't even primarily coughing vs. not coughing. It's exhaustion/ tension/ restlessness/ slight panic vs. relaxing. It feels like my lungs are getting very small, too small for breathing almost, then that tightness melts away. 

Then my hips started aching. Took two ibuprofen and a little while later, I feel great. 

Come to think of it, I guess without the treatment I got, I'd be dead now. It's supposed to keep you alive longer, which it did, in my case anyway, with a high quality of life. 

Got the suggestion to try marijuana instead of morphine. It seems actually rather complicated figuring out the how and what of medicinal marijuana (i.e., the best use for me, if any.) 

Jules, Padmatara, and Laura are here. Mary Jo and a doctor came this morning. All kinds of equipment I could get that would be helpful. Though I am weak, I'll probably wait 'til I can't do without them. 

Wednesday, August 14, 2013

By way of contrast

Woke up feeling rather chipper this morning. Everything not such a slog.

Possible factors:

  • Hydration - been drinking lots more. Had been getting super dehydrated at night (partly due to drugs.)
  • Recovering more from brain radiation in May? Ears and forehead have stopped peeling also.
  • Not about eating less, as ate like a sow yesterday. 
  • Or was it Laura's awesome foot massage?

Reasons perhaps are unknowable, but I am enjoying it.

Monday, August 12, 2013

The view from inside

I was thinking about the book Dying: A Natural Passage by Denys Cope today, which a bunch of us were reading recently. It's an excellent book - short, super informative and also comforting  somehow. But it is from the point of view of the caregiver, as are all the hospice books, for obvious reasons.

What's it like for me? I thought I'd try to give a glimpse.

Tonight I was lying on my bed for some length of time staring into space with the following list in my head:

  1. Throw away the used dental floss in my hand.
  2. Take a crap if poss. 
  3. Take some morphine to deal with this infernal cough.
The trash can for throwing away the floss is a few feet from my bed, by all accounts, not far. But it does require movement. Sometimes, moving even a few inches feels like an enormous effort. So I lie here - no idea how long it is - 'til due to some unknown force I laboriously turn over, pull back the curtain on my closet, and toss the dental floss (possibly to the floor if I miss!)

After a rest, a trek to the toilet. I sit there a while huffing and puffing to recover from the walk. Inadvertently knock over the little garbage bin. Hm, with my raised toilet seat I'm about a mile away from it. Do I just leave it? No, that's nasty. I manage to kneel down and put the spilled contents back in and set it upright. Rest a while. Crapping successful though always painful (multiple meds I am taking cause constipation, though other ones relieve it to some degree.) In any case, my digestion happens very slowly.

I've been coughing like crazy for the last few days. Yesterday I coughed up some thick brown goo. The doctor that came a few weeks ago suggested that that I might be less tired if I got a handle on the cough, which I am trying to do. Not so hesitant about taking the morphine anymore, which has been the only thing that will stop the coughing, besides making me feel super relaxed. Sometimes the cough syrup works fine. 

So that's a snapshot.

Getting up in the morning involves many tasks that often take me a long time. Sometimes I fall asleep between things, and when I wake up my upper body, my neck somehow, is drenched in sweat. My body is full of surprises!

Some mornings I wake up and feel dreadful, low energy, and can't manage much at all. On others it's easier, things don't seem like such a chore. I feel better when I eat less.

Friends have been bringing over lunches, very nice food. Hot soup lately has been hitting the spot. I'd love to write about some visitors I've had lately, but I don't have the energy for that kind of detail anymore. Also, I'm working on my book (from this blog) and it is hard to work on both. 

Now it's around 10pm, and I'm trying to finish this post before bed, but I probably won't. My laptop is on my table, and I am lying on my bed typing this with my left hand, listening to flamenco guitar on Pandora...  

Wednesday, August 7, 2013

Caffeine, soup

Another pic of me and mo
Had a cup of black tea and meditated with Hridayasri, my body buzzing with caffeine. Still, it was good to meditate which I've done little of since cancer.

I think that I'm getting weaker. For example, the effort to stand up from sitting on what I wouldn't have previously noticed is a low chair. So, gadgets. Namely, a chair for the shower, and a toilet seat raiser. Both these things make  life easier (though I sort of hate them, too.)

I'm turning 50 in a few weeks. Don't know quite how I feel about that. Perhaps not overly celebratory. I had wanted to go on a cruise in Norway. Things have scaled back quite a lot since then. I guess I need to have a plan of some kind.

People often ask if there's anything they can do for me, and up until the present there has not been much. But I have lost a lot of functionality lately. If you'd like to bring over some lunch sometime that would be great.  I updated the tabs on this blog including the food page which says the kinds of things I can eat. I'm not sure whether to setup again or if it's just easier to individually coordinate.

The compilation of writings I edited is available on Amazon. It's called Celibacy and Buddhism: Bits and Bobs on Sex and the Divine Life.  I haven't actually seen it yet. I hope I remembered to get permission from everyone for reprinting! Thanks to Vidyadevi for editing and getting it online, and to Dhammarati for designing the fab cover.

I need to get back to this book project before I run out if energy entirely.

On another note, here's the brilliant convocation speech George Saunders gave at Syracuse. I read somewhere that he is a Buddhist which is not surprising.

Down through the ages, a traditional form has evolved for this type of speech, which is: Some old fart, his best years behind him, who, over the course of his life, has made a series of dreadful mistakes (that would be me), gives heartfelt advice to a group of shining, energetic young people, with all of their best years ahead of them (that would be you).

And I intend to respect that tradition.

Now, one useful thing you can do with an old person, in addition to borrowing money from them, or asking them to do one of their old-time “dances,” so you can watch, while laughing, is ask: “Looking back, what do you regret?”  And they’ll tell you.  Sometimes, as you know, they’ll tell you even if you haven’t asked.  Sometimes, even when you’ve specifically requested they not tell you, they’ll tell you.

So: What do I regret?  Being poor from time to time?  Not really.  Working terrible jobs, like “knuckle-puller in a slaughterhouse?”  (And don’t even ASK what that entails.)  No.  I don’t regret that.  Skinny-dipping in a river in Sumatra, a little buzzed, and looking up and seeing like 300 monkeys sitting on a pipeline, pooping down into the river, the river in which I was swimming, with my mouth open, naked?  And getting deathly ill afterwards, and staying sick for the next seven months?  Not so much.  Do I regret the occasional humiliation?  Like once, playing hockey in front of a big crowd, including this girl I really liked, I somehow managed, while falling and emitting this weird whooping noise, to score on my own goalie, while also sending my stick flying into the crowd, nearly hitting that girl?  No.  I don’t even regret that.

But here’s something I do regret:

In seventh grade, this new kid joined our class.  In the interest of confidentiality, her Convocation Speech name will be “ELLEN.”  ELLEN was small, shy.  She wore these blue cat’s-eye glasses that, at the time, only old ladies wore.  When nervous, which was pretty much always, she had a habit of taking a strand of hair into her mouth and chewing on it.

So she came to our school and our neighborhood, and was mostly ignored, occasionally teased (“Your hair taste good?” – that sort of thing).  I could see this hurt her.  I still remember the way she’d look after such an insult: eyes cast down, a little gut-kicked, as if, having just been reminded of her place in things, she was trying, as much as possible, to disappear.  After awhile she’d drift away, hair-strand still in her mouth.  At home, I imagined, after school, her mother would say, you know: “How was your day, sweetie?” and she’d say, “Oh, fine.”  And her mother would say, “Making any friends?” and she’d go, “Sure, lots.”

Sometimes I’d see her hanging around alone in her front yard, as if afraid to leave it.

And then – they moved.  That was it.  No tragedy, no big final hazing.

One day she was there, next day she wasn’t.

End of story.

Now, why do I regret that?  Why, forty-two years later, am I still thinking about it?  Relative to most of the other kids, I was actually pretty nice to her.  I never said an unkind word to her.  In fact, I sometimes even (mildly) defended her.

But still.  It bothers me.

So here’s something I know to be true, although it’s a little corny, and I don’t quite know what to do with it:

What I regret most in my life are failures of kindness.

Those moments when another human being was there, in front of me, suffering, and I responded…sensibly.  Reservedly.  Mildly.

Or, to look at it from the other end of the telescope:  Who, in your life, do you remember most fondly, with the most undeniable feelings of warmth?

Those who were kindest to you, I bet.

It’s a little facile, maybe, and certainly hard to implement, but I’d say, as a goal in life, you could do worse than: Try to be kinder.

Now, the million-dollar question:  What’s our problem?  Why aren’t we kinder?

Here’s what I think:

Each of us is born with a series of built-in confusions that are probably somehow Darwinian.  These are: (1) we’re central to the universe (that is, our personal story is the main and most interesting story, the only story, really); (2) we’re separate from the universe (there’s US and then, out there, all that other junk – dogs and swing-sets, and the State of Nebraska and low-hanging clouds and, you know, other people), and (3) we’re permanent (death is real, o.k., sure – for you, but not for me).

Now, we don’t really believe these things – intellectually we know better – but we believe them viscerally, and live by them, and they cause us to prioritize our own needs over the needs of others, even though what we really want, in our hearts, is to be less selfish, more aware of what’s actually happening in the present moment, more open, and more loving.

So, the second million-dollar question:  How might we DO this?  How might we become more loving, more open, less selfish, more present, less delusional, etc., etc?

Well, yes, good question.

Unfortunately, I only have three minutes left.

So let me just say this.  There are ways.  You already know that because, in your life, there have been High Kindness periods and Low Kindness periods, and you know what inclined you toward the former and away from the latter.  Education is good; immersing ourselves in a work of art: good; prayer is good; meditation’s good; a frank talk with a dear friend;  establishing ourselves in some kind of spiritual tradition – recognizing that there have been countless really smart people before us who have asked these same questions and left behind answers for us.

Because kindness, it turns out, is hard – it starts out all rainbows and puppy dogs, and expands to include…well, everything.

One thing in our favor:  some of this “becoming kinder” happens naturally, with age.  It might be a simple matter of attrition:  as we get older, we come to see how useless it is to be selfish – how illogical, really.  We come to love other people and are thereby counter-instructed in our own centrality.  We get our butts kicked by real life, and people come to our defense, and help us, and we learn that we’re not separate, and don’t want to be.  We see people near and dear to us dropping away, and are gradually convinced that maybe we too will drop away (someday, a long time from now).  Most people, as they age, become less selfish and more loving.  I think this is true.  The great Syracuse poet, Hayden Carruth, said, in a poem written near the end of his life, that he was “mostly Love, now.”

And so, a prediction, and my heartfelt wish for you: as you get older, your self will diminish and you will grow in love.  YOU will gradually be replaced by LOVE.   If you have kids, that will be a huge moment in your process of self-diminishment.  You really won’t care what happens to YOU, as long as they benefit.  That’s one reason your parents are so proud and happy today.  One of their fondest dreams has come true: you have accomplished something difficult and tangible that has enlarged you as a person and will make your life better, from here on in, forever.

Congratulations, by the way.

When young, we’re anxious – understandably – to find out if we’ve got what it takes.  Can we succeed?  Can we build a viable life for ourselves?  But you – in particular you, of this generation – may have noticed a certain cyclical quality to ambition.  You do well in high-school, in hopes of getting into a good college, so you can do well in the good college, in the hopes of getting a good job, so you can do well in the good job so you can….

And this is actually O.K.  If we’re going to become kinder, that process has to include taking ourselves seriously – as doers, as accomplishers, as dreamers.  We have to do that, to be our best selves.

Still, accomplishment is unreliable.  “Succeeding,” whatever that might mean to you, is hard, and the need to do so constantly renews itself (success is like a mountain that keeps growing ahead of you as you hike it), and there’s the very real danger that “succeeding” will take up your whole life, while the big questions go untended.

So, quick, end-of-speech advice: Since, according to me, your life is going to be a gradual process of becoming kinder and more loving: Hurry up.  Speed it along.  Start right now.  There’s a confusion in each of us, a sickness, really: selfishness.  But there’s also a cure.  So be a good and proactive and even somewhat desperate patient on your own behalf – seek out the most efficacious anti-selfishness medicines, energetically, for the rest of your life.

Do all the other things, the ambitious things – travel, get rich, get famous, innovate, lead, fall in love, make and lose fortunes, swim naked in wild jungle rivers (after first having it tested for monkey poop) – but as you do, to the extent that you can, err in the direction of kindness.  Do those things that incline you toward the big questions, and avoid the things that would reduce you and make you trivial.  That luminous part of you that exists beyond personality – your soul, if you will – is as bright and shining as any that has ever been.  Bright as Shakespeare’s, bright as Gandhi’s, bright as Mother Theresa’s.  Clear away everything that keeps you separate from this secret luminous place.  Believe it exists, come to know it better, nurture it, share its fruits tirelessly.

And someday, in 80 years, when you’re 100, and I’m 134, and we’re both so kind and loving we’re nearly unbearable, drop me a line, let me know how your life has been.  I hope you will say: It has been so wonderful.

Congratulations, Class of 2013.

I wish you great happiness, all the luck in the world, and a beautiful summer.

Saturday, August 3, 2013

Visitors galore

The last few days I've felt better when I wake up, which is to say, not horrible. No more dizziness. And I am able to walk a few more steps than before. What changed? I've been trying to eat less (more appropriate amt for someone who moves very little with slow digestion caused by meds), and I started watching the British t.v. series Shameless. Those are the only things I can think of! I did introduce a small amount of caffeine back into my diet which I'm enjoying.

When I seem to be experiencing an upswing in general, it could mean my stamina, etc., are improving for a while, but it also could just be part of the non-linear progression of my disease. My disease! I dont know if I've ever said that before! Anyway I enjoy being able to do a little bit more for myself (like walk into another room and walk back! Have a shower without needing to somehow build up the energy first.) Tomorrow's often a surprise.

Reading Ursula Le Guin's The Earthsea QuartetNYT in the mornings. Also: St. Lucy's Home For Girls Raised By Wolves. Inspector Singh Investigates. American Gods. Can't really engage at the mo. with weighty topics. Also enjoying music - a French radio station,, and Pandora shuffle.

Visitors galore this week, especially yesterday. Lots of folks dropping by, too. Mom. Oscar from Seattle. Brothers-in-law. Many folks passing through on their way home from the retreat. Old pal Jeff is here now (from So. Cal.) currently making us an omelette...

The retreat I was supposed to be co-leading with Jayacitta in Scotland started yesterday. Thankfully the stellar Paramananda was able to replace me so that worked out very well. Well. For them! I'm sorry not to be there. I miss walking and cooking and zooming around, although in a way, not that much. Friends, having lives in the world outside this room, bring me their news, in person and on email, which I enjoy. You people have no idea how much energy you have. 

Thursday, August 1, 2013

Is cancer a gift or a battle?

This short blog post on NPR (National Public Radio), Is Cancer a Gift?  was interesting. In case you can't access it, I pasted it at the end of this post. It's about a reaction to being told that cancer is a gift.

Communication is a sensitive thing, I suppose for everyone. How much more difficult when fear or grief, or just vague discomfort, are involved.

Perhaps earlier, more inspired phases of this blog would have driven the woman who wrote that article crazy. I don't feel that cancer is giving me a lot of gifts now, although from a certain point of view...whatever life doles out is a gift, or at least that's a more useful way to look at it, when possible, than the alternative. I guess this assumes there is some potential value in human experience, in whatever it delivers. I think of this as roughly equivalent in other religions who strive to live with 'God's will.'

Which is the opposite of a fight, or a battle, the popular language these days in talking about disease. One model is rather more passive, or receptive. The other is, I am an agent of my own destiny, I shall think positively. Cancer and I are engaged in mortal combat, and I shall conquer it (and then if I do not, I will have failed.)

Telling someone how they should see things is a problem. The point I suppose is to learn how to be truly sensitive to other people, without our own views or advice getting in the way. It is not easy to do. It reminds me of a Buddhist teacher who said something like, The greatest gift we can give is to be less of a problem to our friends by understanding ourselves.

I will write more about how I am in another post.


Originally published on Thu July 25, 2013 4:02 pm

There's a gift in cancer. It says so right on page 203 of Greg Anderson's book Cancer: 50 Essential Things to Do (2013 edition; first published 1993). Anderson quotes the singer Olivia Newton-John as saying this about her "journey through breast cancer": "I see it [cancer] as a gift. I know it sounds strange. But I don't think I would have grown in the areas I did without this experience."

Then Anderson urges his readers to "Seek the gift in cancer. It's there."

Anderson's way of putting things is no fluke; the cancer-as-gift trope is all too popular. Mark McKinnon used it in writing for The Daily Beast, and Barbara Ehrenreich reports (but does not buy into) other examples over at The Guardian.

In the two-and-a-half months since my diagnosis of a rare form of uterine cancer, I've not succeeded in locating any gift in cancer. I have discovered that, with the steadfast love and support of family and friends, I can deal with the effects of extensive surgery and of chemotherapy, ranging from discomfort related to the removal of various bodily structures including 29 lymph nodes and intense pain in muscles and bones that follows (for some people) an infusion of carboplatin and taxol drugs, to fatigue and oral thrush. It's hard work, this recovery.

But maybe the gift is yet in hiding and will appear sometime in the next six months as the chemotherapy regime and, later, radiation continues?

I don't think so. And let me clarify one thing: The hundred ways, large and small, that I'm shown logistical and emotional support from those who care about me is because of the generosity of the people in my life. In no way does cancer get the credit for that.

Ehrenreich is one of my guides on this topic. She concludes her essay on "the bad science of positive thinking" this way:

"Breast cancer, I can now report, did not make me prettier or stronger, more feminine or spiritual. What it gave me, if you want to call this a 'gift,' was a very personal, agonizing encounter with an ideological force in American culture that I had not been aware of before — one that encourages us to deny reality, submit cheerfully to misfortune and blame only ourselves for our fate."

Another of my guides is Lisa Bonchek Adams. Adams, also a writer, and a person with stage IV metastatic breast cancer, is a friend of mine — although we know each other through social media only, she is a friend nonetheless. On cancer-as-a-gift, she writes in a blog post something that resonated with me:

"A gift is something you want to share. 
"Something you want to give to someone else. 
"Something [about which] you say 'Next time I need to give a special gift to show someone I care, this is what I want to give.' 
"Cancer is not that thing. 
"Language matters. 
"The words we use to describe illness, death, and emotion are important — we should choose them carefully."

How right Adams is: Language matters.

Anderson, in Cancer: 50 Essential Things to Do, urges patients to "reframe" their disease and see it as "an inspiring challenge rather than a threat." He also suggests some affirmations for the patient, ranging from I am filled with hope to This is going to turn out perfectly and I am in charge of my cancer.

It's no gift to suggest these last two affirmations to people with cancer.

There is no gift in cancer.