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.”

https://leavingevidence.wordpress.com/2011/02/12/changing-the-framework-disability-justice/

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.https://morselsofmarita.com/

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.

Chapter 1,000 in The Mama Saga by Devon Miller-Duggan

Chapter 1,000 in The Mama Saga

When I left the house to have an early morning mammogram, I checked in and she was lucid and fine. When her aide arrived half an hour later, The Mama was lucid and fine. She was fine when I came home. She was fine until sometime around noon when the aide sent my daughter up with the message that The Mama was having a stroke. My daughter clearly thought one of them was being dramatic (both are maybe prone to that, and since TM has both dementia and 50+ years of MS, we can’t always tell what’s going on). But the aide, who is wise and has seen a few things, was correct. So I stuck an uncoated aspirin under TM’s tongue and called an ambulance. Dithered a bit about whether to have her taken to the Level 1 Trauma ED, where I have had a number of pretty non-happy experiences that went on for hours and hours, or the Level 2 to which I usually take her because it’s fast, nicer, and reliable. Went for Level 1, partially because that’s the hospital that has a floor dedicated to the Hospice outfit that we’ve had good experience with. It turns out that being a critical case in a Level 1 is an immeasurably different experience than being a mere kidney stone or busted something or other. Other than to say that from beginning to discharge, every human we had contact with was operating at peak humanity and peak competence, I’ll spare you the details. What was interesting was The Mama. First, in case you ever wondered, no matter how entangled/close/intimate you might be with your loved one, when they super-focus on you pleadingly in the ED and repeat “NO, NO, NO…” over and over, you will probably not know what they are saying “no” to. “Don’t let me die,” “don’t let them take me away from you for a CT scan,” “I am damn well NOT having a stroke,” and “let me go; no intervention” are all among the possibilities, and aphasia pretty likely will make it impossible, absent a Vulcan mind-meld, for you to tell what you are being asked to do or not do. This is the point where I offer a public service suggestion: you cannot possibly imagine how important it will be to have a legal directive and a POA with you, because the ED is definitely not the place to figure out that stuff, let alone have to make guesses or judgement calls. Because no matter how good you are in an emergency, you will be dumb enough to ask a neurologist you will later find out is an MD/PhD whether he has any experience with MS, and that is no predictor for good decision-making.

Back to The Mama. It was a monster arterial clot. Since, unlike invasive interventions, are on the table, I okayed TPA but no transfusions should it cause a bleed. It worked like whoever invented it dreamt it would. She was better 15 minutes after they administered it. Which meant we were back to her normal cycle of mild aphasia followed by periods of clear speech, followed by milder aphasia-Lather, Rinse, Repeat. There were three interesting bits: the first was when she spent 20 labored minutes trying to get out a sentence that finally formed into “I don’t want anything to be wrong with me that will affect anyone else!” Since this is about 8 hours after she’s been admitted and I am several flavors of gonzo-tired/wired, my unspoken immediate response to that was “too late for that one, Mama!’ But I did what you do and kissed her on the forehead and said “I know. It’s okay.” The second happened shortly after that. She’s gotten super-sensitive to discomfort as the dementia has progressed. She has a particular animus for BP cuffs and pretty much always looks at me like I am feeding her to a dragon when a nurse pumps the cuff. Having spent much of the day fretting at it, she suddenly figured out that she could slip it off, so she did. And then spend a good 2 minutes giggling maniacally. That was both hilarious and disconcerting. I was glad my daughter was there to see it. Otherwise the whole family would have accused me of hyperbole later… And the third interesting/revealing/weird moment was during one of the every-20-minutes neuro-exams—the verbal part. It went sort of like this:

Nurse: What’s your name?

TM (giggling and twinkling her eyes): Devon.

Nurse: Do you know where we are?

TM (still twinkling): Devon

Nurse: What’s your birthday?

TM (twinkling and bobbing her head happily): Devon

Nurse (with infinite patience): Do you know why you’re here?

TM (serious now): Devon

Nurse (giving up, looking at me quizzically): Well, that was interesting.

My Daughter (looking sympathetically at me, talking to the Nurse): You have no idea.

Me: blank, blurry “save me” stare at the ceiling, then nod to nurse, who then seamlessly moves on to the physical part of the exam and pretends she didn’t just witness that. I figure that the nurses in the Neuro-ICU probably see lots of weird interactions.

So here we are back home and back to what vaguely passes for normal. The world inside my house certainly runs in extremes. On the one hand, I started sobbing while carrying a basket of laundry upstairs this morning. Not a big deal—I suspect this will happen off and on for a few days. But my 19-month-old grand-daughter, who lives here and was behind the gate in her parents’ living room about 20 feet away (her parents were talking about job hunting and didn’t hear me—I wasn’t very loud) heard me and came over to the gate, leaned her head against it and started chanting “Oma, Oma, Oma!” until I took a nice deep breath and told her I was okay. Then she went back to stepping on all her noisiest toys while her parents were talking. Like a toddler should.

Say Good-bye To Something by Isabel Winson-Sagan & Miriam Sagan

Say Goodbye to Something

Goodbye to the self that I never really was, to my false future, to dreams unmet that were replaced with better dreams. You were great dreams and schemes and plans while you lasted- I was going to go to grad school, get a Scottish boyfriend, and be lonely and miserable far from home. I was going to go to Black Mesa and herd sheep and be in a lot of pain from sleeping on the ground. I was going to be an academic, isolated in an office, moving every year, mildly unfulfilled. Thank you, imperfect and flawed dreams of mine, that were replaced with healthier alternatives. Thank you for your sacrifice, alternative timelines. And good-bye for now, until you surface again in thought, reminding me of how much better off I am without you.

IWS

***

say good-bye
to my inheritance
to wanting something
money, love, approval,
a glass honey jar
shaped like a hive
it made me feel close
first child of my mother and father
to be promised
“you can have this when I die”

thank you, grandpa George—
we used to say that
paying the bill
at the nice Chinese restaurant;
he’d left us all money
and we spent every penny
even when the tax accountant
yelled at me
from Miami
for being a hippie

and so I’ll say
ciao, adios, I hope
we don’t meet again

I now possess
all I’ll ever inherit:
fear, a crooked smile, a fedora
what my father called
“the Yankee dollar”
what now seems just a breeze
in the evening
from land to sea.

MS

Devon Miller-Duggan Turns 64 and Reflects on That and More

This Week

I turned 64. I like that I have now reached the age when I don’t have to ask my husband “Will you still need me? Will you still feed me when I’m 64?” mostly because I have a year in which I’m a line in a Beatles song. I’m not sure why that amuses me so much, but it does, and I’m not inclined to expend much energy figuring it out. Maybe one of these days, we’ll rent a cottage in the Isle of Wight. If it’s not too dear…

I saw a list on line the other day of Beatles songs John Lennon didn’t like. A handful of my favorites are on the list. Either I have given up on being edgy/with-it, or it’s possible that Lennon and I don’t have to agree. I have friends who know and like my poems who are fondest of poems I think are mediocre, and I know for certain that I have given up fretting about this. Anything I can manage to give up fretting about is a good thing.

And my husband did feed me, in fact. I bought the steaks and peas and potatoes and Boursin (for the potatoes), but he cooked. And, besides, I was doing the weekly grocery shopping for my mother, so I had time to noodle around in the store thinking about whether I wanted steak or king crab. He likes to cook more than I do these days, and he got everything done perfectly.

I don’t particularly like it when my birthday coincides with Mother’s Day. I have mixed feelings about both, and having them happen together just seems like too much to process in one day. So I did the morning routine for my mother (tough to schedule an aide on the holiday), went to church, probably let myself get talked into helping with an internet book club set up between young South African women and young American women, shopped for my mother (who was aware neither of my birthday, nor of Mother’s Day, which was okay with me) took a nap, did some submissions stuff, played Words with Friends, and spent the rest of the day either crocheting or eating and watching TV with my husband. The highlight of the day was probably when I told my 18-month-old-grand-daughter I loved her and she came over and kissed me (a first—she’s plenty affectionate, but this sort of specificity is new, and she chirps/sings as she walks, which is pretty wonderful to live with).

It’s been a complicated semester. I had a kidney stone early on and have never quite felt like I’ve gotten my feet under me. I’m teaching a new course—typically, I came up with a nifty idea about doing imitations of a bunch of poets, but only semi thought it through—this is one of the parts where being an experiential learner doesn’t always work out for the best. The course will be better next time I teach it, but seems to have not been a disaster, as nearly as I can tell, this time ‘round. My other two classes had big, tough issues I’ve never dealt with before, neither of which should go in a blog–one a headbanger, one a heartbreaker. And I lost 30-40 hours at the beginning of the semester to a new Faculty Evaluation System put in place at Pretty Good U that is a total POS (it has, for instance, gone down in the middle of contract renewal system, of course). And I’m pretty ticked that I am going to start having an actual attendance policy in classes (I’ve done quite nicely for years with one that consisted of “You expect me to be here, don’t you? I expect the same.”), but absences have gotten way out of hand. I blame the zeitgeist. Meanwhile, my mother’s slide downward has picked up speed—she’s almost out of language, and has begun to be seriously short of breath. And I have been trying to get her whole home-health-aide situation re-settled since the week between Xmas and New Year’s, when we found out that the coordinating insurer had pulled out of the market, and the new one won’t deal with Home Instead. In the northern of Delaware’s 3 counties. Just the one. Meanwhile, I am trying to coordinate between 4 companies/agencies. Much of this would be resolved by paying home-health-aides living wages, but they’re all for-profit companies, so…

The yard’s a mess, though it’s full of flowers. It’s been a weird, long, cold spring, so some things hung on forever. I’ve never had daffodils still blooming when irises came up. It was pretty. The stripey pale pink azalea has been in bloom for ages. But it got stinky hot just in time to fry the lilacs the day after they bloomed. I haven’t walked the back yard for several weeks. I’m betting there’s some poison ivy out there somewhere. And I think I’ve decided to forgo the fancy wood play-set-with-house-and-climbing-wall that seems to be the suburban standard in favor of an old-fashioned swing set. But the poison ivy will have to be dealt with first.

Our cello prof tends to favor 20th/21st c. music, so I don’t often go hear him (I’m fond of some, especially of the elegiac sort, but often feel like I’m wearing uncomfortable underwear when listening to much of it), but he did a 2-night recital of Bach’s Unaccompanied Cello Suites several weeks back. It was imperfect and glorious and made me so goofily happy that I email fan-girl-ed him. We’re going to try to have coffee. There’s much too little cross-departmental conversation around here, just because depts. are so big and we’re all so separate, so that’s kind of nice.

Last day of class tomorrow. Mostly, my students will be reciting the poems they’ve chosen to memorize. That’s nice, too. And it’s looking like I’ll survive to teach another semester. The summer’s big projects include reading all the books of poetry I haven’t gotten to all year and re-organizing the bookshelves. Could definitely be worse, which, these days, is saying a lot.