Do Whatever You Want and The Devil Take the Hindmost

I’m getting old. Old enough for Medicare, old enough just to do whatever I want. Let me say that I’m ethical enough–and yes, old enough–that this most likely does not involve inflicting any real harm on others. But it might involve the rudeness of truth, and the chaos of spontaneity.
For example, when I hear bad news about or from other people I no longer try and “understand.” Or mirror things back. Or be soothing. I’m much more likely to say–that is fucking terrible, and I’m really really sorry to hear it. If I care deeply, I’ll probably just burst into tears and curse more.
No one has ever accused me of being too suave, too reserved, too controlled. I often have sharp penetrating insight into situations–and now I’m more willing to share that. Is all this insight true? I don’t care. It’s what I see–and I’m happy to start talking about it. Right now.
What it boils down to is that I realize I can’t do much about anything–not for myself, not for others. I can keep a person company, and I know I’m pretty good at that. Some of this is because I’m now a grandmother. I can’t make the world safe. I can’t learn to walk or talk for the baby. I see her–a lively active seven month old–wild with frustration because she can’t walk on her own. I’m certainly not offering sympathy or advice to a baby. I’m singing a lot of show tunes, often from Guys and Dolls, and embarrassingly “Hey Big Spender” from Sweet Charity. I figure we’ve just got to pass the time until her brain is developed enough to figure it out.
I’m kind of applying this to myself as well. My fear of death, my creative process, my sometimes tangled relationships…I’m just killing time until I understand. Or not.

Why Is The Baby Crying?

When my daughter Isabel was an infant, someone asked me that. I remember thinking, heck, if I knew I’d write a book called “Why Your Baby Is Crying” and retire on the money. Babies cry, scream, and howl. Unexplained crying is called colic–and I know parents who regard their lovely grown offspring with a certain horror left over from those months when the baby never slept and cried ALL THE TIME. In Bali, during evening crying, people say, “the baby is talking” and there is some truth–and solace–in that.
My 4 1/2 month old grand-daughter Grainne is interesting to watch. A premie, she seems to still be in a rush. She flips herself over, squirms, almost crawls. This took a lot of work, and hours and hours of kicking. She coos and vocalizes, looks in my eyes as if she adores me, looks at the pattern on my blouse and the ceiling fan like her new best friends, smiles, giggles…and then, for no discernible reason, starts yowling, goes rigid as a board, is 100% misery. Usually feeding her puts her right to sleep at this point until she wakes up and starts all over. But sometimes she yowls for quite a bit.
She is a really good baby by her parent’s estimation because she sleeps through the night, eats heartily, and is incredibly cute. But good or not, she is a baby. I try to enter her mind. What if I screamed every time I felt faintly burpy, frustrated, or confused? I play this little game with myself.
I’m hungry, sort of.
What I really want is a cafe au lait and a muffin from Counterculture.
But I have to drive down Baca Street, and it’s hot out.
I feel faintly conflicted.
BUT if I was a baby, I figure I’d be shrieking by now.
However, I have a car, cash, and volition. So I go to Counterculture instead. The muffin is excellent. I finish it, but could use a little more. If I was a baby, I’d start shrieking…Now I realize it was too much coffee for my reflux…But since I’m not a baby I just live with it.
Let’s be honest–sometimes I do yell, and curse. At those I love but temporarily hate, at health insurance providers who are lying to me, etc. etc.
But it is good it is infrequent because I’m not as cute as a baby.

You Are Not The Boss of Me

My social media feed is often full of things telling me how to think and feel. I must do this, I must do that, eat this, that, not this, that, protest this, that, agree with, disagree with…the list is endless. Much as I enjoy hearing what others are doing and thinking, I don’t like being subjected to a barrage of control. I feel that ideas and actions are being increasingly policed, but in ways I find repetitious, not revelatory.

What really set me off was a Facebook response to a privately sponsored writer’s residency that paid a stipend. No good deed goes unpunished as the offer was attacked from every possible angle—including that they didn’t fund authors enough! I’ve been involved with the vision of possible residency using a Tiny House, and I found this conversation downright depressing.

Then it occurred to me I don’t have to worry. My family tried to control me and I left New Jersey the day after high school graduation. Just a heads up to the universe-—bossing me around does’t work as a form of communication.

I am, however, a willing servant to my autumn blooming roses and my dirty suminagashi tray…Photo by Isabel Winson-Sagan

Some Moments of Joy

The moment just before the bowl of noodles arrives.

Unfolding a map to plan a journey.

Reading what the children wrote about water falls.

An orange cat that isn’t mine in the shade of my car.

Happy I’m not single.

The tenor’s voice swells and peaks singing about love.

I can afford the necessary medication.

That is a very large squash in the garden.

I do not have to eat dinner with the president of the United States.

I now have A LOT of pens.

No One Does It On Their Own by Miriam Sagan

I was very struck my this thought from Mia Mingus:

“With disability justice, we want to move away from the “myth of independence,” that everyone can and should be able to do everything on their own. I am not fighting for independence, as much of the disability rights movement rallies behind. I am fighting for an interdependence that embraces need and tells the truth: no one does it on their own and the myth of independence is just that, a myth.”

I was just out in my vegetable garden. It is a raised bed, to my waist. I don’t have to bend over. It was designed and installed by several millennials–family members and a neighbor. Part was a gift, part was paid for, all was received with gratitude. It has a great hoop shade design. And now more lemon cucumbers than one household can eat.

My parents had a rugged individualistic attitude towards life. They often rejected help from their own children, and certainly never depended upon friends or neighbors. I found this attitude exhausting.

Many years ago, when I was suddenly widowed and was raising a six year old child, I realized abruptly that although I tended to see myself as the giver I was now about to start taking–maybe without an end in sight. People did some amazing things for me–my pride was easily overcome by my admiration for both their caring and inventiveness (Who knew I needed a large homemade raspberry cheese cake? Or to have my daughter taken for a camel ride? Not me).

In terms of disability, although I’m grateful to the movement for existing I can’t identify completely. Abortion on demand and death with dignity are things I firmly believe in, and the disability movement often opposes these. I’m not about to debate these issues here, just to say they are the backbone of my social beliefs that I’m not interested in modifying. I try to show respect for other beliefs, and hope that feeling is mutual.

That said, I truly appreciate Mingus’s thought we don’t have to strive to be totally self-reliant. This isn’t just about disability, it applies to community, artistic endeavor, and more. Anthropological thinking suggests we need a group of 40-150 people just to survive. And maybe twice that to find unrelated mates. There is a mystical Jewish belief that we reincarnate in groups the size of a small village. I’m always looking to recognize my soul mates so I don’t have to go it alone.

Opening my eyes at 72 by Cheryl Marita

Opening my eyes at 72These past posts have made me think about the idea of bucket lists, and how they focus on living.  And today I accepted a challenge from a friend to join Yoko Ono in her “Cleaning Piece III” – try to say nothing negative about anybody – for 3 days, for 45 days, then for 3 months.Does this include me?  Does it include politicians?  Does it include people I work with?  I imagine the circle spiraling.  Outward to include more people, inward to give me strength to be quiet.So here I am, thinking about a bucket list of endeavors that take me more inside than traveling to the Galapagos.  A bucket list that will challenge me to grow as I age.  Slowing down like a turtle in my life may be more productive than rushing to see one in the wild.Slowing down is what my interactions with patients tell me everyday.  Bearing witness to myself and others insists that I slow down.  Certainly, discussing hopes and wishes for end of life with a fifty year old, a ninety year old, a thirty year old all deserve softness and time.   And being quiet is part of slowing down.  Having time to think, respond, reflect.Urgency, accomplishments, checklists, twitter, texts all demand quickness in response.  Sitting silent with patients as they mull over information demands slowness in response.  It requires respect for the process, for the life that we are sharing at that moment.I think this is at the top of my bucket list at 72.  Slow down so I can share a moment of intimacy with my patients, slow down so I can not respond in haste with a negative comment about a person (even a politician or a president).Takes me to a thought I want to ponder this week.  From NIMO in the “Gratefulness” blogWe arrive empty handed and leave empty handed.  So then, how do we want to spend the time in between? Even this blog has slowed down as we amble towards our goal of advanced directives, of discussing with family and friends our thoughts about end of life care.  I think I will play the “Go Wish” game this week.  It’s a slow game, and it will help me add to my bucket list and help this blog bear witness to our contemplation.

How I Learned About Evil

How I Learned About Evil

There are things I like to write about—sex, death, love—and things I’ve had trouble writing about—being ill, my father’s gangster family. And then there are things I haven’t written about properly at all. I’ve made stabs, little forays, attempts. All have failed.
These things are connected, I realized, when once more I tried to address them. They all happened in the 1970’s. They all happened to other people—I was a bystander. They have overlapping casts of characters. And at the heart are some secrets of mine. Or, if not exactly secrets, things I have trouble…writing about.
Actually, they are about sex, death, and love. And evil.
Now, I live in a household when 50% of the people (my husband Rich) do not believe in capital E Evil. I probably mostly believe in the Jewish concept of the “evil inclination” as opposed to the good. I don’t think of evil as a personified force walking the earth (a traditional enough pursuit for the devil, though).
And when I say “evil” I see it through the lens of my own experience and society. I see it as racism, fascism, and violence. And I am willing to try and touch on one of these difficult to write about topics.
When I was twenty years old, someone I was close to lost her extended family in one night of the “dirty war” in South America. I’m not ready to elaborate and have the privacy of others to consider. Let me just say that decades later when I walked into SITE Santa Fe’s show on The Disappeared and saw the flag of Chile made out of human femurs, I blacked out.
As a result of the murders of the family by fascists I also witnessed the single greatest heroic act I have ever been close to. An individual, essentially unsupported by law or government, went into terrifying hostile territory to save some children who had miraculously survived.
As I begin to write about this, here and in my notebook, I see that I veer into fiction. A few details change. The narrative becomes more coherent and less messy—essentially less like life. I always experience this process, but here but seems more necessary. I’m not going to write a novel, but neither is this straight out confession.
I was raised to see the world as a terrible place. My father could mention Hiroshima and Auschwitz before breakfast. In many ways, I had to leave the east coast and go to California to learn that the world was also beautiful. In my family, the beauty was a secret, kept apart. I suspect that we were the reverse of others, who kept evil the secret.
This leads me to our current day. I may be easily upset, but I am not easily shocked. I could try and ignore my father’s obsession with the past, but I could not ignore what I had experienced, even if it was indirect. Actually I am grateful that I have spent my adult life trying to accept, explore, and understand both sides of our reality. This is not the time to stop.