This is Your Life

There's anxiety, and there's pain; then there's anxiety about pain, which more than doubles the pain.  By 9:00 last night the pain in my back and neck had gone up through my TMJ until the left side of my face hurt, and I had to do hot compresses.  Dammit.  Part of it was just too much sitting upright, the rest was the irrational anxiety about what the MRI will show and what comes next for this back injury.
This pain has been worse since the MRI of my upper back and neck Monday night.  And I am waiting, waiting for a call from the neurologist who ordered the test, and who will, I hope, suggest some way to cut back on the pain, which seems to be made worse by walking.  Now it's Friday, which means if I don't hear today I'll have to go through the weekend trying not to imagine the worst, which is, for me, being in a hospital.  After that dreadful night last December - and that was in one of our better hospitals - my tolerance of the constant abuses there has turned to something quite negative.  Like hate.

Furthermore, the fact that my fall in May was caused by Seroquel has amplified my distrust of the whole American medical system and led me to notice that there have been a lot of lawsuits about these drugs, and the movement disorder they cause that never goes away.  (It is called tardive dyskinesia.)

I don't like to be anxious or angry.  Don't Want! any of this.

Well, this kind of adversity is a common enough feature in the landscape of old age, but I like to think it isn't necessary to melt down over it.  My formal Zen study led me to find a post from a blog by Ben Howard that happens to help just a bit my perspective. The author refers to a passage in Dogen's Instructions to the Cook, which I decided to format as if it were a poem:

Do not get carried away,
by the sounds of spring, 
nor become heavy-hearted 
upon seeing the colors of fall. 
View the changes of the seasons as a whole, 
and weigh the relativeness of light and heavy 
from a broad perspective.

My first teacher, Ama Samy, said to me, at least once, "Experience everything, but don't get carried away."  He has a rich Hindi accent, so it sounded like "Don't get caddied away."  This is good advice for anyone with moodswings, or who golfs.  

More from Howard's blog:  "Commenting on this passage, the Soto master Kosho Uchiyama urges us “to be resolved that whatever we meet is our life,” and to “see the four seasons of favorable circumstances, adversity, despair, and exaltation all as the scenery of [our lives].” Oh yes. The default scenery, in fact, that the Buddha warned us about. Life is not that fabled isle of bliss they promised . . .

but more like this at times:

Heavy.  And that's just the way it is.  Everything broken, including the medical system and, maybe, the doctor's phone.

This is making me think it's time to publish a poem I wrote years ago after being forgotten in an exam room. Really.  (A nod of thanks to Ken Vail, who drove me to that doctor and waited patiently.)

                             Doctor
or, Jean-Paul Sartre in the Examining Room           
           
Here in a windowless room–this dying body–
naked beneath a paper towel,
waiting, waiting for Doctor to come and ask,
How are you?  Where do you hurt?
How long have you felt this way?
Doctor is busy, invisible accountants
issue denials of benefits,
nurses in running shoes flash smiles.

Doctor is here I think he is running late,
this will explain our policies.
You are responsible sorry
I know these rooms are cold
but Doctor wears a suit under his lab coat
we keep it comfortable for him
here, here is a paper blanket
sorry we have no tea, the pot is broken
no one has time, time . . .

Are you still here?
sorry the office is closed
the computer is down please call
tomorrow for an appointment we are
automated for your inconvenience
please hold please remain
on the line, your call is important to us
your call will be received in the order 
in which you enter your patient account number
date of birth and death, social
followed by the pound   invalid   invalid

Sorry, Doctor has no more appointments
this year.  Doctor is at a convention
and does not answer his page
someone
will try to get back to you
in the order your call
was tomorrow

Wait—we have just been informed
Doctor is no longer with us. 
Doctor is dead.
You are condemned to be free.
~~~~~~~~~~~~
p.s.  Put in one more call to the doctor just now.

Life in the Real World

I was enchanted to read a description recently of our local metaphysical expo:

It is a place where love and light fill every crevice and then spill over the top into the real world.

Actually, what more needs to be said?  One could just rest in that image.  But it did get me thinking about that term, "the real world."

There were years when I'd go on the AMA Samy retreat at Grailville and experience it as a place of love and serenity.  Arriving home after all the goodbyes had been said, I'd feel my responsibilities descend on me like big gray backpacks full of cement.  The world I lived in was populated by difficult people and too many things to do (that is, things I thought I had to do).  My need for creative time always felt squeezed.  Play time, forget it. These problems stood waiting for me like a home invader behind the kitchen door.

Here I am using that interesting word again:  problem.  It seemed clear at those times that the sunny silence of retreat was time spent with the absolute, and real life was a mess. 

Depends on what you mean by a mess.  Yes, much of life, lots of it, is out of your control, and some of it involves conflicts.  People let you down or undermine you, other people don't return calls, important meetings are cancelled, you fall and your life is changed.  You are an organic life form that ages, gets sick, dies, and so does everyone else. So does the siding on the house.  Everything keeps changing out there.  The sunflowers from the wedding die.

But the digital pictures survives - above is one from Cassie's wedding - as do the memories. And there are many opportunities here for connecting, receiving with gratitude, giving.  I have faith in the possibility of a life in which love overflows.

I am remembering a line from Robert Frost's Birches , which is, now that I think about it, about this - bliss, grief, nirvana, samsara.

Earth's the right place for love:
I don't know where it's likely to go better.

Tempus fugit, and Don't Forget It

In my day - I was born in 1942 and grew up in the fifties - a girl couldn't even contemplate a sport like this.  I was 30 before I ever met a woman who could pilot a plane.  I was awestruck. 

A lot has changed since then, thanks to the many cultural revolutions, including feminism.  And my bones have changed, too, and are, oh, brittle, due to a lifetime of scorning milk and kidney failure and also just plain aging.  I know what broken bones are, and there's no way I would try a jet-ski or even surfboard now.   Or anything that might jar me sufficiently to lead to a long, long rehab.

We do age.  And the time keeps coming and coming and you realize that today you can't do something you could do only yesterday.  Anyone who tells you different is trying to sell you something.  So live with no illusions about tomorrow - you don't have forever to get to Paris.



When I picked out the above video and listened to it, it seemed so sweet, so innocent, so sort of Buddhist in its emphasis on this day, and I'd thought John Denver was like the public persona honored in the video.  Just now I read over his bio in Wikipedia and found that his life was not innocent or easy.  He was only 53 when he died crashing his private jet. He'd survived crashing his Porsche two years earlier.  From Wikipedia -

 In 1996, nearly a year before the accident, the Federal Aviation Administration had learned of Denver's failure to abstain entirely from alcohol after his drunk driving arrests, and had previously revoked his medical certification. . . . [Therefore] he was not legally able to fly at the time of the accident. However, there was no trace of alcohol or drugs in Denver's body at autopsy.

I know.  It's sad. I didn't think this post was going to go this way, and I suspect he didn't think that flight was going to end that way, either.  I'd been playing over in my mind all the people I've known who have lost abilities as they aged, including me and, actually, every old person I know.  Actually, that's more real to me, because I've been close to people who didn't see it coming and had nothing else to turn to. 

Time to go to the bottom of the blog, again, and think about The Five Remembrances.  Cheers.

The Fast Lane

Over the last couple of weeks I have had to face the condition of this body-mind - I don't say "my" body because it's pretty clear I'm just renting it from the universe.  I'm getting afraid of getting that final eviction notice.........
And of course, it's not just about that deteriorating spine, cervical, thoracic, lumbar, the osteoarthritis has covered every base.  It's -

Distraction.  Did it take me half an hour to figure out how to put the Google calendar gadget on my home page? then, how to add to it?  And why was I in my e-mail anyway, that caused me to see it?

Actually, that is not off the point at all.  The point is, I'm old.  I'm not just getting old - you could say I'm getting older; I'm old.  Case in point, why do I still have my regular glasses on?  I need to wear my computer glasses when I'm at the computer or I make my neck hurt trying to look through the screen at exactly the right angle.  I can't do that bifocal tilt.  Like I said.....
~~~
And now it's an hour or two later.  1:00 pm, to be exact.  Lunch at 2:00 and I haven't worked on my collage for this week, except in my mind.  It was more important to catch up with my friend Laurie, and to pack a hospital survival gift basket for Tina, who is in intensive care in the heart unit, I'm sorry to say.  She is 76, I believe, and has struggled with breathing problems for years now.  Death will be a relief from that.  She doesn't want visitors, so I'll drop the basket off.  Someday I'll write to tell you guys how to pay a hospital visit.  I do know how.  But I am not only respecting Tina's stated wishes, I also know hospitals are danger zones for me, on immunosuppressants.  So I don't insist.

And my e-mail just beeped to inform me that Sarah's funeral is next Saturday....I can't figure out how to add it to the Google calender now.  Pause to add it to my phone calendar, at least.  It will send me an alarm to remind me, too.  How does any old person get by without a smart phone?....

And got an e-mail from the museum about a lecture on Degas' dancers next week, and I have the perfect friend to go to with it - an artist and a dancer (though no longer dancing on her feet).  Left a message with her.

I was going to say, it's been very very very very hard to accept being this old, as if it happened all of a sudden, though it didn't.  The back thing has scared me, that's the truth.  MRI this Friday eve, so we will have you know, more information.  Then options.....And I think maybe this post ends up showing not only how it is to be old in your body, but also how you begin to constantly lose people you love, and that will go on until all your friends and family are dead, though I dearly hope never to lose my daughter and grandson (still, it can happen).  It's constantly acclimating to the changes in yourself, which feel right now like a snowball rolling downhill.

The Consolation of Buddhism

Another sunny morning, though not as pretty a blue.  I woke up slowly in a dark room, then sun coming through the pinholes on the blinds.  All around my ribs and back was hurting lying there, where the shingles wraps around my torso, and moving made it hurt more, so the first thing I did was take some oxycontin.  It's 9:30.  Church is at 11:00, means we leave at 10:30.  I thought, maybe we should just go for lunch.  Meet our friends, be out in the air, be around some people.  Tom isn't up yet.

 As I made my coffee I thought, the primary consolation of Buddhism is that this is how things are supposed to be.  You are supposed to decay, fall apart, wear down, and at some point the life force will leave you altogether.

Now, that is a very gray proposition.  I thought of a metaphor to grasp it a little better. 

Suppose you came to life as a painting, a beautiful masterpiece of color and texture and line that was the product of thousands of hands.  You are unveiled, born.  You are perfect, and the world loves you just as you are.

At first you just enjoy being, experiencing your own self and your capabilities.  But before you have mastered living as this creation, you begin to be harmed, scarred and wounded, to have one failure after another.  In art terms, the world has turned to something else, and isn't interested in you anymore. 

You go to your creators about this, and they tell you, Yes, you're supposed to get scarred and wounded.  And you have an allotted lifetime anyway.  Maybe it will be 80 years, maybe one more minute, we're not in charge of that and neither are you.  Then you'll be gone.

If the building doesn't burn down and the sprinkler system doesn't ruin you, you'll get your full allotment of years.  But you will slowly be degrading all that time, coming apart.  Paint dries and flakes off.   A careless mover lets the canvas get ripped on a sharp corner.  It is fixed, but not very well.  The whole thing darkens with age, and people are not interested in it any more, there is no novelty to it, so it is moved to a far gallery where it often stands alone. 

I know what you have to say about that: It isn't right.  Right meaning you don't like it that way.  Right meaning if you were a designer god, you'd have done much better than that.  Maybe.  I'm working on it myself - how to have a living creature that is not organic, not based on carbon atoms.  If I want to keep it two-dimensional, as in the metaphor, maybe I should paint in titanium.  Or silver coated with gold, an older technique.  Gold does not decay, that's why we value it so.  But I don't know how to breathe life into something so that it will be self-animating from then on - perpetual energy - people have been reaching for that one for a long time.

Or I could make it a story.  Design a story that somehow shows the world as it is, but better, a story with a satisfying ending.  Here she began, here she ended just doesn't sound like a very appealing jacket blurb, does it?  So I think I'll wander away from my initial statement that the truth about aging and death is the chief consolation of Buddhism.  No, it's probably the chief wisdom.  For consolation you're going to have to find another writer.  It's easier to fix a picture than a story.  Sometimes soft focus helps.  See?

Staying alive is a lot of trouble

[Here is a Christmas video to make you smile. If you want to see it full-screen, go to: http://www.youtube.com/watch?v=jm3dm5J5r0A]
We were to spend yesterday with my daughter Cassie, her husband Chris, and our grandson, Otto - it was either that or the end of next week, since they are traveling to Canada Christmas day to be with Chris's family.

But Tuesday night I had a high fever.  I felt okay Wednesday, even energetic, and decided I was over it.  Wednesday night, the fever appeared again, and was there Thursday morning.  Both days I talked to Beth, the poor post-transplant nurse who is on-call (while the doctors disappear), and both days she asked me some questions and thought I had a UTI - a common infection among kidney transplant patients.  And that I should go to the ER, where they could collect and analyze a urine culture.  Of course the transplant center is closed for four days.  I have a whole rant about this kind of thing.  Sickness does not take a holiday, but most of the medical profession does.

I've had many UTI's over the years of low kidney function; they are not in my bladder, but in my old kidneys, which are still in there.  I told the nurse that; but they never believe you know your own body.  I told them the post-transplant nurse suspected a UTI; they shrugged it off.  So I was asked an array of embarrassing questions about my elimination system, same old questions by one person after another, until finally a junior surgeon came in.  She assured me it was 95% likely I would be admitted so they could give me IV antibiotics; she had to check with her boss.

I didn't have too bad an attitude, had known they would be very cautious, and had brought my Kindle with me.  Maybe, I thought, there would be carolers in the halls tomorrow, and cookies, though I am afraid of homemade cookies right now - in their own kitchens, people don't wear latex gloves like they have to in commercial kitchens.  Maybe they cough on the food, or their children help out, bringing a swarm of germs from school.  I am not paranoid:  a transplant patient I know has had two seriously bad infections from what he calls "church food."  Sad, but true.

This is the first "event" I've had in these ten weeks, and it was not a rejection episode:  the blood draw showed creatinine and BUN were fine, yes!  Laura's kidney has worked wonderfully, a miracle from start to finish. But it was an event.  Meanwhile, I asked for blankets until I had on five layers, and was still cold.  Tom draped my parka and fleece pants over me.

Five long, tedious hours of all this were marked by three sweaty failed attempts to put in an IV until they finally got one in my thumb - they wouldn't call the IV team, they never believe I know my own veins.  The IV was never used - a nurse came in and briskly announced that they were sending me home on oral Cipro - lots of it, ten days.  That makes three antibiotics I take on a daily basis, the other two intended to prevent things like this.  Amazingly, a nurse was right in with discharge papers and the prescription.  Amazingly, it was free at my Kroger's pharmacy.

"I am of the nature to grow ill," I reminded myself.  "I cannot avoid sickness."  (A version of The Five Remembrances is on the bottom of this page.)  And, "A transplant is a treatment, not a cure."  And I told Tom, "This staying alive is a lot of trouble."  But at least I had gotten up a few decorations, including the beautiful evergreen swag for the door that our neighbor Cindy surprised us with.

Of course, all this medical had exhausted me.  I was so happy to be home in our comfortable bed, under the electric blanket, finally warm enough.  Who knows, maybe I'll feel up to the 5:00 p.m. Christmas Eve service today?  Or church Sunday morning.  Or not.  Church or not, I remind myself that I don't hate the medical profession, that these are just human beings doing what they think they ought to do.

Plots and Zen

This morning I underwent what I once would have considered a grueling ordeal - examination of my stomach and colon by inserting tiny cameras into my body.  

I was prepped, that is mostly naked except for a hospital gown (but they let me keep my socks on, and I was wearing nice socks), and wearing an IV, left hearing aid out and in a plastic bowl, glasses off, and Tom sitting beside me.  You wait like this for GI procedures, on a gurney in a little examination room with a curtain for a door and just room for a beloved to sit with you.

I was relaxed and in a good mood - yesterday was the worst of it, and I knew I would be unconscious for the procedures.  I thought how terrified I had been the first time.  I like to lay that down to having a vivid imagination (cancer?) but in fact I think it was neurosis.  General anxiety heightened by fear of letting go control of my intimate body, and fear of the results (cancer?) 

I said to Tom, "Six years of meditation," meaning that's when I had the last colonoscopy.  A day's meditation most often doesn't seem spectacular.  You may not be conscious of the ways it changes you.  But day after day, year after year seems to have mellowed me considerably. 

Lying there I got to thinking about the novel I read last night, a comical-mystery chick lit.  It had a number of important plots or troubles, which were all handled like dominoes falling in the last few pages.  This is a great problem for writers - how to make the mystery novels to do this smoothly.  The explanation of the crime is not nearly as interesting as the detective's process was.  This seemed to illuminate something about dying for me - that people who have a lot of plots in their life, things unsolved, may be agonized at death. 

Narration, story-telling, is unique among the arts in that it has plots.  A plot arises from some disturbance of the main character's equilibrium.  Think of Scarlett O'Hara and the luxurious life at Tara just before the war hits.  The interest lies in the character's efforts to regain balance.  So there is often a fiction to begin with, a life that seems to be perfect until - whatever.  A stranger comes to town. 

Here's where I transitioned to thinking Buddhist.  We readers of novels may very well not have balance in our daily lives.  We can spend our lives unsatisfied, complaining, thirsting for that something more - that illusion that would be so much better than the present moment.  To me one of the excellent points of the Buddha's story is that he did have it all - all the things people commonly think would make them happy: the  money to buy pleasures, power, dancing girls.  He had it and perceived its emptiness, how dissatisfying it was. He saw that and did not try to push the truth away. 

I am rambling.  I was told not to drive today, that I would still be under the sedation.  I do feel quite relaxed, but then, I feel that way when I have been given the rest of the day off.
[image:  Perfect Leaf, Imperfect Picture.]

Sheba Aging

Sheba's doctor called.  Thyroid normal, creatinine higher.  He wants us to give her subcutaneous therapy for a couple of weeks, I think he said once a week, and continue the antibiotic, then make an appointment later this month so he can sedate her and look at her mouth.  Maybe there's an abcess there, or a badly decayed tooth.  Poor kitty.

Maybe I can learn to do the subcu, motivated by the knowledge that to have a technician do it costs $20.  That's on top of a bag of the liquid that costs, did the girl on the phone say $27? Can that be?  That would be once a week.  84 problems?  85?  I need to drop a couple off the other end.

Sheba looks very fine today, not afraid of us, sitting here beside me on her chair accepting frequent petting. Above is a picture of her sleeping there, trustful and relaxed, at home.  With work, we humans can understand sickness and old age, and learn to accept them as inevitable - accepting death is harder - but animals are only confused and afraid of losing their abilities.  That makes us especially want to comfort Sheba and care for her.

Dim and Cool

August, high noon
In the month and hours of fire, how soothed I feel by coming into my study, where the accordian shades are drawn.   There are thunderstorms coming in; I knew that before I checked the forecast, because my hands have been aching - weather sets off my neuropathy - and now my arms and back are aching, which is fibromyalgia.  That makes me think the storms will be here before evening.  I'm sure my grandmothers' generation was attuned to this kind of effect, as in "The rain makes my rheumatiz act up."  But we have been so optimistic, dreamed that we are creatures of personal will who can control everything, reach every dream, solve our 83 problems through technology, and surely cure every illness and become immortal. 

The problem with sickness and death that is now being discussed at length as the baby boomers pass 60 (for instance, see the current New Yorker) has much to do with this fight, fight attitude.  We believe we must try to defeat the most hopeless illness, survive even multiple organ failure, endure everything that could conceivably give us more time.  Time for what?  Well, the article does talk about that, what people want at the end of life, and none of it can take place in the urgent care unit with a feeding tube, a colostomy demanding constant attention, heart failure, pancreatic cancer.  There is no peace of mind when you persist in fighting the huge army of the inevitable.  It seems to me that hospice care is far more likely to give that peace of mind, and the chance to say goodbye to those you love instead of stringing out the inevitable heavily sedated against in acute discomfort.  Well, I remind myself that I have little enough say about when and how I die.  Perhaps no say at all.  I think of Art Gish, whom I wrote about July 29.  Seventy years old, hoping to live another twenty, killed driving his tractor when it flipped over on him and caught on fire.  Just like that.  Thus.

Too much fire, aches and pains, dim and cool somehow led me to thinking of all that.  Now I'm going to lie down on my yoga mat in shavasana (corpse pose).  I am behind a closed door, protected from interruption by a Post-it on my door that says "Meditating."  Close eyes, relax, lie still and perhaps be rejuvenated enough to go out and get some groceries, or maybe not.  I think I'll recite the Five Remembrances first. (See bottom of this page.)
[And see the video in the post below if you want to relax, too, or at least smile.]

Loving people before they die

I want to keep this short. Tom is baking zucchini bread for the church potluck Thanksgiving tomorrow, and I want to sit in the kitchen and knit and listen to NPR with him.

Sunday, a lay leader at our church - Unitarian - came up to me during coffee hour to tell me a certain woman was in intensive care, and had been asking for me. I'll call her oh, Mary. A common name in the generation above me. Mary is a sturdy 83 years old and has been causing me trouble intermittently during about thirty of those years. I'll spare you (and myself) the details, but on one occasion her gossip caused me what I saw then as grievous harm. Over the years, however, I came to think she was a ship without a pilot, and we no longer felt like enemies.

Dependency syndrome" hardly begins to describe her affliction. It was dangerous to let her into your life the least little bit. She would then call you time after time. Invite you repeatedly to lunch. Get you to come over for dinner and then try to give you anything she owned, everything in her freezer, all the food in the house, cast-off clothes. A compulsive shopper, she had a huge ever-growing wardrobe. I talked once to a woman who was in a church discussion group with Mary, who told me Mary had inveigled the entire group into helping her move, and it was an endless nightmare.

For years Mary came running in late to church on Sunday morning, because she had been changing clothes, she told me once. She always ran all the way down the center aisle to the very first row, where she could hear. She came running in late to my meditation groups, too, where she insisted on making people move so she could sit right next to me and cup her hand over her ears. During discussion she wanted compulsively to hear every word, every word, so she would cry out, "What? What did he say?"

She was a hypochondriac and a lapel hanger-on, a person whose loneliness was so excessive that she interrogated you with staccato questions, one after the other, interrupting your answers, to keep the conversation going, so you couldn't get away. So of course, everyone learned to avoid her, to avoid eye contact with her. Including me. That made it sad to think I was someone she asked about when she ended up in the ICU, kidneys failing, heart having stopped and started again, everything failing. Why me? It took me a while to remember.

She had called me last summer, worried about her kidneys. She had many anxious questions. And I decided to sit down and stop tapping my toe and give her whatever time she needed. We talked for quite a while. I assured her that I felt her kidney doctor was doing the right things. Toward the end I remember calling her, "Hon." That was unlike me, but she so clearly needed some affection. Her life strategy had been such that it denied her what she wanted most. After that phone call, I hoped being nice to her wouldn't lead to problems, and indeed, she called not long after to invite us to a potluck at her retirement community. We turned her down politely. That was the end of it.

Now she was asking about me. So I did what anyone who read this far would do, I suppose, stopped by the hospital Sunday afternoon, setting aside my rigid policy of avoiding places that might give me antibiotic-resistant TB (for new readers, I have very low immune function).

Intensive Care is always sobering, even if you're used to medical stuff. It takes all the Zen you can conjure up to accept death in such a cold, impersonal place.

She was sleeping when I got there, propped up in bed with an IV in her jugular vein, and neither her glasses nor her hearing aids. She did most of the talking in a low, hoarse voice I could hardly hear. She told us her daughter had gone back to Chicago. She told us nobody had been to visit her but Eric, the minister. She said she just isn't hungry, she said they told her she doesn't qualify for the kidney transplant list, all she likes is Sierra Club to drink. Sierra Mist, she meant And pudding. She likes that. She was bored but hadn't turned on the TV. She couldn't see it anyway. She said she did things wrong, she should have managed her diabetes better. Blame, I thought. Is that how she's coping with this? I hovered close over the bed and shouted that everybody cheats on the diet a little, and I thought she did pretty good, that making it to 83 was a long life. "Really?" she asked, with a kind of childlike gratitude.

I don't really expect to go back - we used up every bit of conversation we had. I suppose her daughter will be back in town over Thanksgiving, and maybe stay. I keep thinking about how when someone is dying, all your dramas with them, all your little preferences, fall away, and you see the simple, resounding truth of life and death, the same for all of us.