This blog is about the challenges faced by caregivers, educators, the young and the elderly, and others needing care and how policy impacts their lives.
Saturday, August 06, 2011
Walk it Out
I had the same experience when my daughter grew up and moved out of the house. I could not stand to be in the house. The emptiness was unbearable. I missed the sounds of girls running in one door and out the other. I felt haunted. I did what my friend did. I got out and walked. Even in the thick heat of the day, I walked. I tried to keep a fairly good pace, but I wasn't race walking. It usually took about 30 to 40 minutes but then the heaviness would lift and I would begin to feel good about life again. At one point, I began to pay attention to the birds around me. I later bought some binoculars and found a new hobby.
I read an article recently that stated that even twenty minutes in nature is energizing. I think the combination of being outside and paying attention to your environment along with the exercise you get from walking and the natural endorphins that come with it creates about the best anti-depressant you can find. And it's free.
Thursday, July 28, 2011
The Kids Are Not All Right, Glenn
What I find to be disturbing is how few young people in our culture care or know about how the political system, which affects almost every aspect of their lives, operates.
I have observed an appalling lack of political knowledge among my college students. The majority of them are ignorant when it comes to the different platforms of the two major parties. They do not know about any important rulings of the Supreme Court. They have no idea how to register to vote. And they’ve no inkling how government policies impact everything from how much tuition they pay to the safety of their workplace. They also believe that they are powerless to change anything.
The only thing they seem to be aware of is the price of gas. Now, that gets them fired up -- briefly. It doesn’t occur to them that more and better public transportation would solve many of their woes (including their worries about DUI’s).
My students are not stupid. Nor are they uncaring. But if anyone ever bothered to talk to them about politics it was too complain about paying taxes and having to support “lazy” people on welfare. Nothing of the nuances of public policy has drifted down through the cable news blather.
A high school course in US Government is not enough. Most students sleep right through it. Our young people could use a camp to inform them about our political system -- not for brainwashing or propaganda but for the sole purpose of helping them understand our government, our economy, and the mechanics of change. But it’s pretty apparent why that wouldn’t be popular here. We might somehow get a system that was fairer and more inclusive if people knew how it worked. And people might not gullible enough to be swayed by the likes of Glenn Beck.
Monday, July 11, 2011
Social Security is a Women's Issue
My mother did not receive a cost of living increase in her social security payments last year; and yet her rent went up $200 a month. Somehow we scraped up the additional money. She was fortunate enough to have three children who were able to help her make ends meet for the last seven years of her life. Not all women are so lucky.
According to the Social Security Administration, about 90 percent of all elderly women live solely on social security. In addition, women live longer than men and their social security payments are less; and few elderly women have private pensions. Another scary statistic: by 2030, one in four American women will be over the age of 65.
Terry O’Neill, president of the National Organization for Women, was recently interviewed on the NPR show “Here and Now.” O’Neill said that “the best marker of whether a woman will live in poverty in her old age” is motherhood. I was shocked. “Being a mother is the one factor that correlates strongly with living in poverty in old age,” she said, adding that we don’t have policies in this country that support caregivers. O’Neill noted that caregiving is largely unpaid and largely done by women.
Cutting social security benefits directly impacts large numbers of women -- not just the women who receive social security but their caregivers as well, which creates a vicious cycle. Women who take care of elderly parents will now have to do more with less.
According to a study by the Commonwealth Fund, 25 percent of women who care for a sick or disabled family member rate their own health as fair or poor, and more than half of women caregivers have one or more chronic health conditions. I can attest that while taking care of my mother, I often neglected my health for lack of time, energy and money. The study also states, “Nearly one-third of all caregivers (31%) report a decrease in their family's savings because of caregiving responsibilities. Overall, two of five women caregivers devote more than 20 hours per week to caring for a sick or disabled family member.”
The bottom line is that you don’t earn social security for your work as a caregiver. Cutting social security may sound like a good way to cut the deficit, but ultimately it will create more problems for the elderly and for their families.
Sunday, March 13, 2011
The Old Couple at My Mom's ALF
I told my mother about the work I was getting done on the roof of my house because squirrels had gone at the shingles like Arthur Anderson after internal Enron memoranda. Then I told her about other mundane events in my life.
“So the new thing is,” my mother began. “Well, I don’t know . . .what was I saying. Oh, nevermind, let’s not talk. Or let’s talk about something we know about.”
As my mother says, thoughts tend to slip off some neuron cliff in her brain. Well, she doesn’t say “neuron,” of course. That is one of those words no longer in that once-voluminous vocabulary.
A man and his little boy crossed the parking lot in front of us.
“Oh, look at that little boy,” my mother said, her voice full of delight.
I took her hand and she gently rubbed my fingers. She loves to touch, to be touched.
“My mother never hugged me,” she has often told me.
“My mother hugged me all the time,” I reply.
As we were sitting there, a slender man with silver hair pushed his wife toward us. He stopped not far from us and stood patiently, while his wife, gazing thru slitted eyes said, “Let’s leave here now. Let’s go. It’s broken. Let’s go. Let’s leave here now.”
He patted her arm and said, “No, it’s okay here.”
We made some room for them on the patio and he wheeled her up and sat down. I looked over at him. His eyes were expressionless. His wife was curled into herself. She began a monotone monologue, constantly repeating things. Water was a refrain. Down the hill. New York. New York. New York.
I tried to imagine her as a younger woman -- someone who ran a household, maybe had a job, tended to children and grandchildren, probably cooked. Maybe they danced. Maybe they loved each other madly.
Now here she was -- a mynah bird. His eyes met mine. He was a portrait of patience, of devotion. I wanted to cry. I wanted to hold him so tightly and say over and over again, “You are a good man. You are a good man.”
Sometimes, I get really tired of being the good daughter who comes to see her mother three times a week. I get tired of the constant expense. It’s difficult for me to make long-term plans because I don’t know what I’ll do with her. I travel for my work and for pleasure, too, but I don’t like to be gone too long. There’s this tether that’s wrapped around my heart.
But today as I looked at this man and his wife, I felt ashamed of those feelings. His wife didn’t look like she’s anywhere close to my mother’s age. I wondered if he ever wishes he were free. This woman is not the same woman he lived with for God knows how many years. But the love was there. In every tender gesture.
His wife got agitated. I don’t think she liked us being there.
“Take it easy, Mary,” he told her and patted her hand.
My mother looked down at her hands.
“I don’t know what causes these purple splotches,” she said.
“It’s just that your little veins have been on the planet a long time,” I told her. “They’re leaky.”
Then she laughed. Her laughter was as melodious as it ever was. Her eyes shone. She may not remember shit, but she was there with me in the moment fully present. I got up and wheeled her inside for dinner. Before we got to the dining room, I bent down and kissed her hard on the cheek, hugging her.
“Oh,” she crooned. “I’m so lucky.”
“So am I, Mom. So am I.”
Saturday, February 12, 2011
Cup
It's just a ceramic cup. It fills the hands nicely when it's full of warm peppermint tea. It was smoothed and rounded by someone's hands on a potter's wheel. The bottom flares out like a belly. The handle is perhaps 3/4 inch wide and 1/8 inch thick. The cup is sturdy but not heavy. The color is many blues like the ocean. My friend gave it to me before she died so I could drink tea on my home from visiting her.
I slept in her house the night she died at hospice -- in the guest room where I aways slept when I visited. But that night I didn't really sleep. I lay in the bed for hours, reading anything. I wasn't particular about what it was. Sometimes I'd get up and wander around the quiet, empty house. Nothing felt real -- not the green walls adorned with quirky works of art, or the small kitchen, or her bedroom with the large regal looking headboard and all of her vintage clothes and shoes and the painted crutches leaning against the wall.
I found an old worn pair of slippers she must have worn and I slipped them on my feet. I had brought the cup back, but decided I would keep it.
A couple of months ago, my roommate used the cup. I said, "You might not want to use that cup. It's the one thing no one is allowed to break."
Thursday, February 10, 2011
Poem Inspired by a Photograph at the Mint Museum
in our shabby lives
concocted of chain link
and clapboard
when the fog has taken
everything else
are we willing to leave
this blue invisibility
and burst into the pale
orange light where
nothing is hidden
anymore?
Or do we pass by and wander
along the cracked sidewalk
like coyotes hungry
for yellow cats?
Sunday, December 12, 2010
Requiem for a Friend
The story that Freedan had written involved a little girl who lived on a planet called Lumin. Everyone on the planet was born with wings, but they had forgotten how to fly. It was up to the young girl to help people learn how to fly again, but the mighty “wingless” class did all they could to prevent her.
I liked the story a lot, but there were also a few places where I found it read a bit too much like 19th Century Americana. When Freedan explained to me that the story had been inspired by a young girl who was part white and part African-American, I countered that people on other planets would not have the same racial backgrounds that we had, and another planet might operate by very different rules than ours. But, of course, in our minds, the heroine was a mixed race child with golden wings.
One of the the first things I did was change the spelling of each character’s name. The girl, Alexandra, became Alixandra. Thatcher (the insipid school teacher) became Thatchin, and so on. I decided that grass might grow down as well as up depending on the season, and I added a couple of moons. Otherwise, I kept the story intact, fleshing it out as prose.
As I transformed Freedan’s screenplay into a novel, I took a chapter every day to the small “hands-on” learning school my daughter attended and read it to the children -- about 50 kids from kindergarten thru fifth grade. It was such a hit that for the Halloween party that year, many of the children and faculty dressed as different characters from the book.
I finished the book, and in the meantime became close friends with Freedan. Although he was in his fifties, he had the boyish enthusiasm of a 20 year old. Quite fit with (Paul) Newmanesque blue eyes, he had a surplus of women in his life, and he had recently fallen in love with a gorgeous black woman in her 20s. She was calm, almost ethereal, while he bubbled over with joy.
Freedan told me once that he could “see.” Actually, he told me this several times. What he meant was that he could perceive the universal field. I believed him. There was something extraordinary about the man. He felt it was his mission in life to teach other people to see. That’s what he was doing with “Alixandra’s Wings.” It was an allegory, of course, but he had also created an exciting adventure story.
While we shopped that book around, Freedan lit onto another project. The light of his life was his beautiful teenage daughter. She’d been in some student films, and Freedan wanted to produce a movie that would feature her, as well as a student director from the film school at Florida State. I would write the script based on an idea that he and I came up with. I was thrilled with the idea. We rented some office space, we had long meetings, we traveled in search of locations, and I wrote and rewrote. We even managed to get a few investors.
In March of 1998, Freedan flew out to Los Angeles, where his girlfriend had recently moved, to try to find a “name” actress to help us make the film more enticing for investors. One day he called me from his girlfriend’s apartment. He said he couldn’t move half of his body, and his speech was slurred.
“You’ve probably had a stroke,” I said. “Get to the hospital. Now.”
But it wasn’t a stroke. It was a brain tumor, a particularly nasty kind called a glioblastoma. The next three months were dreadful. He came home, and we watched this vibrant, energetic man waste away. His daughter was devastated. Money was an issue because we had made certain commitments, most notably to our director who was afraid of being sent back to Belarus where she was from. Freedan’s ex-wife was understandably upset when Freedan gave me money to help keep her here. That was money his daughter would need. Looking back I realize I should have done things differently.
But the one thing I’m glad I did was to create an audio-book version of “Alixandra’s Wings” before Freedan died. I made two hundred and sold almost all of them. The money paid off some of the debts we had incurred in our movie-making venture. Freedan was pleased. He wanted Alixandra’s Wings to be like a virus. I learned years later that some kids listened to that book over and over for years. I know my daughter did. Adult friends told me they listened on long trips and didn’t want to get out of the car.
Freedan died in June, and the book became a file on my computer. I had my own books to write and sell. I had my child to raise. The book didn’t fit with what publishers wanted, and I didn’t have the technical expertise to publish the book myself. I also didn’t have illustrations for it. So I let it sit.
It took me 12 years to come back to it. A college friend of my daughter’s, who is a brilliant artist, jumped at the opportunity to make the illustrations. Someone else offered to help me with the technical aspects of publishing the book, and he did a beautiful job. His 11-year-old son, Jack, was the first to read it. “Awesome,” Jack reported.
Now Alixandra’s Wings is available as a print book, an e-book and an audio book on Itunes. I hope I’ve honored my friend’s vision at last.
Alixandra's Wings
Monday, November 29, 2010
For My Future Self
When I am on my deathbed, will I remember the last day of October in the year 2010? Will I remember walking through the field at the top of my neighborhood and noticing the small faces of wildflowers as I trundled through tall weeds, how I stopped to bend down and run my fingers over some yellow berries, low to the ground? Will I remember that day, the light a more subtle creature than summer's full-on blast, the warm sweet air? And how on that day I walked through the field in brown velcro sneakers, my green cotton drawstring pants and my white t-shirt? How there was no dog at my side and for once no ache in my heart? Will I remember how the dirt was sandy and pale orange-brown, the grass green and how at the edge of the field, dried oak leaves covered wide swatches of ground? And some leaves on the trees were still bright green, others were yellow and still others had turned dark red? Will I look back on that woman whose heart sang its two notes over and over, whose lungs absorbed life with such ease, and whose legs moved with strength and purpose? Will I remember that for once there was no longing, no pining -- just the simple pleasure of being.
Of course, I was decomposing even then. Cells had begun dismantling the set in preparation for the day we'd call it a wrap. Memories were being (and will continue to be) churned, crushed up, dissipated. But I hope that this one escapes and comes back to surprise me -- a gift from one me to another.
Monday, October 11, 2010
Coming Home
Monday, October 04, 2010
Summer Evening
Sunday, September 19, 2010
On Civilization and Its Discontented
I’ve been thinking a lot about the role that emotions (especially anger) plays in our lives and in the affairs of the world. As I watch the posturings of TV pundits or stumble across the shrill invectives from the radio talk show screeds, I am stunned at the flood of emotions pouring out of them and the corresponding rage and hysteria reflected in the faces and incoherent ramblings of their followers. Anger has a place in the panorama of our emotional lives, but I fear it’s only purpose these days is to rip apart the fabric of our society.
This morning I had a dream in which a woman was saying terrible things about me to other people. I felt an enormous, engulfing rage. I screamed at her, telling her she was evil. I even threatened to hit her “upside the head” with a folding chair. When I woke up, I wondered what that was all about. I opened my journal, wrote down the dream, and made a list of things I was angry about -- my mother’s Alzheimer’s, my ex-husband’s various slights, a job promotion I didn’t get, the tea partiers, to name a few.
Then I realized that I couldn’t say I was honestly “angry” about those things because anger is an emotion with distinct physical symptoms, and I was feeling none of those symptoms. For me anger feels like a hammer banging around inside my head, my chest feels as if something is squeezing my lungs, and my heart feels like a roaring tiger in a cage. My eyes sharpen with the proverbial daggers, and my voice cuts like a sword. Of course, these are only metaphors, approximations of what anger feels like, but everyone who has felt it knows that anger is something physical with visible manifestations. If someone were to say to you in a calm voice with a smile on her face, “I’m angry about what you did,” you’d laugh dismissively. That isn’t anger.
So if I’m not feeling any symptoms, I can’t honestly say I’m angry about something. I can say that I “get angry” about these things. But I’m not walking around feeling angry all the time. Anger is an emotion, a chemical reaction, that arises in certain situations. We can also bring it on by obsessing about those situations, nursing old slights, or fuming about the wrongs of the world.
Sometimes we use anger as a tool to get other people to behave a certain way. My ex-husband used to say (rather regularly I’m afraid): “That pisses me off.” The plosive “p” and spitting “s” of pisses effectively conveyed his interior physical state. I would try not to do things that would provoke that statement because his anger created unpleasant sensations within me of guilt and worry. Let me not pretend to innocence here or victimization. I have used anger as a way to bludgeon others to my will as well. With the exception of a few saints, we all do it. Yet most of us realize at some point that anger’s usefulness is limited. In fact, anger and its accompanying tantrum is more destructive than helpful in most situations. We look foolish, we drive people away, we do things that later we wish we hadn’t. Sometimes we hurt or kill innocent people and damage or even destroy our own communities.
In our less civilized days anger must have been extremely important to our survival. Anger is the “fight” part of our “fight or flight” response. Nature programmed us with two options in the face of danger -- anger or fear. Fear tells us to run, but sometimes running away from a life-threatening situation is the wrong thing to do. Sometimes to survive we need to pick up a stick and slam it upside our assailant’s head.
The problem comes when the perceived threat is not really a threat. Nature gave us anger for life or death situations when an immediate response is required. But we have learned to use it for the most minor infractions. Someone is going too slow in the fast lane so we snarl and pound our car horns and figuratively shoot them with our fingers. This anger gives us a little charge of superiority, which is no more real than the supposed threat.
You don’t have to watch your television or scroll through your Facebook status updates for long before you see someone exhibiting signs of rage. Because we are communal animals, we often “catch” it. We may feel that person is attacking us or we may feel that whatever is threatening that person also threatens us.
This threat or perceived danger often has no basis in reality. Our lives are not in danger. Even our way of living is rarely affected. As a friend of mine noted when we were marveling over a recent public display of fear and resentment, “These are people who have never missed a meal.” Our feelings, which feel so real to us, can be manufactured or manipulated by someone who stands to gain from the blind anger of others.
That’s the thing about anger. It’s a blind beast. For good reason. When our forebears were being attacked by another tribe, they needed to be able to face the threat fearlessly -- with a certain blindness as to the consequences. Often, however, that very blindness keeps us from recognizing the factual evidence that tells us that the outrage du jour is not a serious threat. The adrenaline in our system says, “yes, yes, yes, the threat is real, kill it.” So we dance around in our anger like puppets and blindly begin destroying whatever we can lay our hands on.
And even when the threat is real. We can choose to overcome it without resorting to rage. We are more than the chemical cocktail stirring around in our bloodstream. We are also rational beings. We do not have to react from our lowest instincts. Or if we do react, we can ask ourselves what is really behind the reaction. It’s easy for me to see someone behaving angrily and to get angry in return. The challenge is not to get hooked into their anger. The challenge is to stay focused on factual evidence. The challenge is to choose love instead of anger.
Interestingly enough, love is a rational choice. Genuine love of others builds community and does not destroy it. If the community is healthy, then we will be healthy. Love is not blind. Love chooses to look beyond the faults and foibles and fears of others and see the truth. Love is fearless.
I am trying to figure out how to answer anger with love. I’m not quite there yet, but I know that’s where I want to be. I want my message to the angry people around me to be: there is nothing to be afraid of. We have problems, yes, and we can solve them if together we look at them rationally. It’s easier than you think.
Friday, July 23, 2010
Feather by feather
Thursday, April 01, 2010
A Bit of Sanctimony
Friday, March 19, 2010
For whom the bell tolls
I suppose this is not the first time in American history that it has seemed as if we were on the brink of collapse. But it is the first time in my lifetime that the very ground under my feet has felt quite so earthquake shaky. Of course, on the day of 9/11, a lot of us had the sense that the world as knew it had ended, but somehow in the weeks and months that followed we realized that the world was still spinning around in space and people were still getting up and going to school or work. We would mourn the dead and lose what little sense of trust we had, but our civilization -- this democratic republic with all its corruption and petty scandals -- would march forward defiantly.
Then the economy lurched. When my next door neighbor, an architect, lost his job, I didn’t worry too much for him. Surely, another job would fill its place -- in time. When my journalist friends lost their jobs, I understood that journalism was floundering and not likely to recover. The prospect of a country without a powerful fourth estate is not a happy one, but we are an enterprising people, and I was sure we would cobble together another (though certainly less comprehensive) system for disseminating information. We do have the Internet and while bloggers are no substitute for informed and tenacious journalists, funded by high-powered media organizations -- okay, I’m thinking “all the president’s men” not FOX news -- there is still enough journalistic fire out there that I figured a new system would eventually emerge from the rubble.
Architects and journalists and all their kin aren’t the only ones suffering. Almost everywhere schools have started cutting back or even closing their doors; public education has always had its head on the chopping block. And yet somehow it didn’t feel as if the sky was caving in. Economies falter, but they also recover.
So what is it now that makes my breath catch and my brow furrow in fear. It is simply this: the closing of the libraries. In my municipality, twelve libraries are shutting down. One of them is “my” library -- a bright, attractive building with lots of light and lots of books. While it isn’t usually overcrowded, it’s never even close to empty. Always children can be found in the children’s area, surrounded by Harry Potter and Goosebumps, teenagers write their awful research papers on the computers, and adults wander the stacks looking for a good mystery.
My friend, who is without an Internet connection at her house, goes to one of the doomed libraries several times a week.
“Where will all those old people go?” she wonders. “They’re always there, reading magazines and newspapers. What will they do now?”
And what about the people who can’t afford to buy books? That’s what I’m wondering. I’m thinking of all those stories of great people who grew their intellect in a little local library. Quite often I resist the temptation to whip out my credit card and clutter my already cluttered house by buying books that I can find in the library.
Who doesn’t love a library? A library is a place you can go to in any town and discover the world. A place you can go to sit in a comfortable chair and read great literature or great trash. A place where books and other media are free for the taking as long as you bring them back later for someone else to enjoy. A place with free wifi and the sound of an air conditioner humming.
And buried under that loss is the nagging question -- where do we go to learn the truth? What happens when a populace is not able to freely educate itself? The library stands for something in our society. It represents the last vestiges of freedom and opportunity and equality. That’s a hell of a lot to lose.
I know there’s a recession going on, but I live in a rich city. Shiny buildings cut the skyline. We’re even building a museum for NASCAR. Last night some friends and I ate at a fancy restaurant -- all chrome and glass -- and big square plates filled with delicious foods like roasted butternut squash ravioli and risotto. Handsome people laughed and drank as if they were in a commercial for some random product. Nobody was going hungry there. Sometimes I take walks in the neighborhood of McMansions near where I live. The houses are not for sale. No foreclosure signs stain the mahogany doors. In the driveways: big boxy vehicles for sport and transport, jet skis and a Mercedes, BMW or some other foreign coupe.
And yet we can’t afford to keep our libraries open? What will happen to all those books? What will happen to those buildings? And what about those wonderfully patient people who are always willing to answer the stupidest questions and eager to help you find a book or answer a question?
The canaries are dying in my city, and there’s nowhere we can go to escape the poison.
Friday, October 30, 2009
On ghosts, impermanence and osteoporosis
In 1990 I moved with my three-month-old daughter to Tallahassee, Florida, where I had gone to graduate school for a master’s degree in creative writing in the mid-80s. I had re-enlisted in grad school to get a Ph.D. because I figured if I was going to be a single mom, being a college professor was a wiser choice than working 12-hour days as a freelance journalist. My daughter’s father was having a temper tantrum because I’d gone and gotten myself pregnant against his express wishes. How I did that without his participation I’m still unclear about. But two years later Hank arrived in Tallahassee, too, with toys for his little princess and a check for me. I took him back.
My mom lived in Edenton, NC, by this time and we’d make occasional forays up there to visit. The drive from Tallahassee to Edenton took an eternity -- especially the one time we got off I-95 and decided to take the scenic route along Highway 17. Somewhere in an alternate universe a man and a woman are still on that highway with a little girl in the back seat, asking, “How much longer?” The parents automatically answer, “About an hour.” Our destination was always about an hour away.
My mother also came to visit us in Tallahassee at least once that I can remember. I know this because I have a picture.
My mother became old in fits and starts during the 1990s. Every time I saw her, I noticed some surprising new mile marker in the aging process.
On this particular visit I discovered she could no longer keep up with me when we walked anywhere. I found I needed to walk very, very slowly. Her heart, she explained . . .she had congestive heart failure. WTF? She never had anything wrong with her heart before. The past 20 or so years she’d been an inveterate walker. Walking was what we did together: long, brisk walks. That was her exercise, as well as a wonderful way for us to spend time together, to talk and laugh. And now all of a sudden (or so it seemed to me) we were cr-aw-ling. We’d become characters in a movie, moving in slow motion, each step exaggerated and excruciating as the world seemed to stop spinning in space. Of course, I hadn’t planned for this when I got her and Emmy in the car to go to the opera at the university. I carved out just enough time for us to speed over to campus, find a parking space and sprint to the opera hall. That was my normal M.O. I didn’t know there was a new normal in town.
Somehow we got to the opera before the curtain rose though I’m sure I had a mental breakdown as we moved with glacier-like speed along the sidewalk.
I kept thinking there was some way to “fix” my mother. At the time I had come across some “Tibetan rites.” The man who had gone to Tibet to discover them claimed they’d have old bodies dancing like teenagers. Oh, I was always onto something.
“Here, Mom, just do this,” I said. With my lithe 37-year-old body I demonstrated the rites in the living room of our little ranch house. Spinning was the first one. I got my mom to slowly spin three times. (You’re supposed to build up to 21.) She couldn’t do it. She was out of breath and a bright red blood spot suddenly bloomed in my mother’s left eye.
Shit, I thought, I’ve killed my mother. She’s had an embollism or something. She somehow survived my improvements efforts. Of course, she was a big disappointment to me, having gone and grown old like that. Where was my playful friend?
In the picture I have of her from that visit she is standing by the fountain in front of the auditorium at Florida State, wearing a dark velvet dress and holding the hand of four-year-old Emmy, who has one leg out in an arabesque and is balancing on the wall of the fountain. My mother is heavier in this picture than she had ever been before -- not fat, by any means, but solid, seemingly immoveable.
This is the last picture I have of my mother without a walker.
The Buddhists teach impermanence. An idea that still confounds me. In my mind my mother is permanently laughing and vigorous -- physically strong and intellectually at the top of the mountain. But right now, as I sit on my front porch on a chilly autumn morning, yellow poplar leaves carpeting the ground, I am aware of my own mortality slowly ticking away inside my body. My doctor has informed me that my bones have already begun the process of deconstructing themselves. One day my daughter will look at me in shock and dismay as I can no longer keep up with her. And I -- this I of this moment -- will just be a ghost in her mind.
Monday, September 28, 2009
The Reluctant Self-Promoter
Heretofore, I have never had the opportunity to use the word “heretofore.” But I do now. Heretofore, I have not blogged about anything in particular. Oh, I always planned to do a “writing” blog but never got around to it. Instead I would blog about missing my kid or taking care of my mother or taking walks or occasionally about politics. My blogging was sporadic and random.
Now, however, I am blogging for a purpose: to track my journey as I attempt to promote my new novel, Picara (note inclusion of title for promotion purposes, which I had to go back and add). I am doing this because that may be the only way I can stand it. If I write about the rejection and the humiliation and all the other things I dislike about self-promotion, at least it will serve a purpose. Something enjoyable (writing) will take place as a result. Also, I think it will keep me on track. I will continue to put myself out there like a youtube wannabe movie star because that is what I am supposed to do if I want to keep doing this thing that I love. Keeping a blog will nudge me (I hope) in the right direction. And maybe some other reluctant self-promoter will realize he or she is not alone.
To clarify, I don’t actually mind giving readings and book signings. I like it. I like meeting people who have read my work or who are planning to read it or who just like the cover of a book I wrote. And I love doing workshops for people who write or who want to write or who think they might want to write. That stuff is fun.
What is not so fun for me is getting out and pushing myself. I’m not sure why, but that part is painful. Just the other day I was reading a chapter in a book on women’s health as research for a freelance gig. And I came across the definition of “borderline personality.” This was interesting to me because about 20 years ago I was married for all of about three weeks. My then husband and I saw a therapist once who later told my husband that I might be a “borderline personality.” I had no idea what that meant, but I damn sure didn’t appreciate it. I mean the guy had talked to me once. And I was not the one screaming and kicking doors in. (BTW, former husband and I are now friends again; we have forgiven each other.)
So now, 20-something years later I read the description of a borderline personality: “poor self-image; unstable relationships; mood swings; impulsive behavior; extreme fear of being abandoned; self-destructive behaviors. . . .” Damn, that was me at one point in my life. For the most part, I’ve managed to quell the craziness. No one who knows me now would call me impulsive or self-destructive. My moods aren’t any worse than any other menopausal maniac. I am separated from my current husband, but we were in a stable relationship for the past 18 years. As for abandonment, well, I’ve experienced it bigtime and handled it okay. So . . .all that leaves is poor self-image.
I’ve been working on that. For a long time. So part of my mission here is to be honest while at the same time not berating myself. My Science of Mind friends and mentors say to be careful of your words, be careful what you own. I think it’s okay to own up to the fact that I’m a reluctant self-promoter, but that I’m willing to do it. So tomorrow I’ll call up the local B&N once more and mention that the girl on the cover of my book goes to a high school near their store and that we might get a few of her friends to come for a book signing. And I will call up the funky little import store on Central Avenue again to see if they’ll be willing to be the venue for my party. And I’ll call the bookstore in Durham and try to convince them to have me do a book signing there in conjunction with a local radio interview. I mean, I’m not Pat Conroy. I’m Pat MacEnulty, and they haven’t heard of me in spite of my five books. So they don’t jump up and down like they’ve just won the lottery when I call ‘em up. This is going to take some effort.
In the meantime, I am grateful for Lorri, who is redesigning my website and serving as a stand-in publicist. And for Lynda, who invited me to San Miguel de Allende, and Heather at the Portland Library for saying, “Come on up!” Their support balances out the not-so-great things about this venture. It’s a beginning.
Thursday, September 03, 2009
A Day at the Medicaid Office
During my lunch break I had called the SSI office. A message told me I was “caller number twenty in queue.” I finally got to a human, but he managed to cut me off. So I dialed again and in only fifteen minutes I had another human.
“Please don’t cut me off,” I said to him. “It takes way too long to get to a human.” He promised he wouldn’t.
I told him my story: my mom had been on Medicaid 18 months ago, the last time she was in the rehab center. I explained that when she got better we put her in a private pay facility because there were no long-term Medicaid beds available. But now she was back in rehab and we needed the Medicaid again.
He transferred me to someone else and I got a voicemail. She didn’t call me back. So a few hours later I leave work and call her again. Lo and behold, she answers. In my utter naivete I was sure that this was something that could be done by phone or online. Wrong. I am required to go to the office and fill out an application in person.
As I drive to the office, I wonder how this would get done if I were not here to do it – or if I had the kind of job where I couldn’t leave to go take care of my mother’s medical problems. Or what if I was sick myself, or disabled? This is how people’s live spiral out of control, how they go bankrupt, how they die forgotten and alone.
The Social Security Administration building in Charlotte is an imposing brick building not far from uptown. As you approach the entrance, you join the huddled masses yearning for healthcare. Most of the people milling about are minorities. According to a Healthcare Forum I went to recently, 35 percent of African Americans are without health insurance. I don't know what the figures are for Hispanics. For whites, it's 6 percent. But I've been part of that 6 percent. I know what it feels like to simply decide you can't get sick. Many of the people here are women. They have children or they are pregnant or both. I wonder why so many Americans are poor. Why aren’t there enough jobs for us? What happened to the idea of affordable childcare?
I go inside and a woman at the information desk gives me some form to fill out. No pen, but I’ve got my own. I find a little desk and fill out the form, then I go stand in a line. When I get to the front of the line I have to sign a piece of paper. Then go sit in another area and wait. Hmm, I think. Okay, maybe this is what the crazy “keep your government hands off my healthcare” screamers are picturing. I know it doesn’t have to be this way. Government manages to do a lot of things pretty damn well. Education, road building, libraries, policing, fire fighting. But maybe this sucks because it’s for poor people. Maybe if it was for everybody they’d get more efficient. Then again, maybe it would be like the DMV. Whatever. No one should die or go broke so that Insurance CEOs can wipe their butts with hundred dollar bills.
This place has kind of a festive air about it. I watch a preteen girl herding her younger siblings; a dad and his severely disabled son; a lean, athletic young black man in a wheelchair with his hands in bandages. Everyone has a story. After an hour of sitting I’m still wondering what about this whole experience couldn’t be done online or by phone. A couple minutes before five, just before the place closes, a case worker leads me back into the warren of cubicles for an interview. The cubicles are small; the walls brown. I sit down in a plastic chair and stare at a line of screws sticking out of the wall.
The case worker, a strapping bald man, seems like a really nice guy but I’m remembering a guy I knew who worked for social security in another town and who had a predilection for smoking pot and exposing himself to teenage girls. Whatever this particular guy does in his spare time, he seems perfectly willing to approve my mother’s application.
There’s just one problem. I’d forgotten that when you get on Medicaid, they take your social security check and leave you thirty bucks a month for spending money.
“But . . .but . . .how will we pay for her room at the assisted living place?” I ask. “Her social security check pays for a good chunk of the rent. Then my brothers and I make up the difference.”
“My hands are tied,” he says with a shrug.
Tears start marching down my tear ducts for a general meeting just under my eyelids. Words of doom and desperation swirl around my brain pan.
“But . . . but . . .” I begin again. “She’s only supposed to need rehab for a couple of weeks and if she loses her place, then where will she go?”
“I understand,” he says. “Some people have mortgages and they have to choose between their homes and their healthcare.”
This makes me feel so much better.
“It’s not going to work,” I tell him, trying to keep the whine out of my voice. We continue with the application.
Like a rat backed into a corner, my brain begins scurrying around the problem as I wait for him to print out the forms. What can I do? Will I need to yank her out of rehab? Surely the assisted living place won’t take her back in this shape. She can’t put any weight on her right foot. She needs so much help getting off and on the toilet, getting in and out of the bed. Will I need to go over to her place and move all her stuff out? Money for movers, money for storage. What will I do about that albatross of a bed she has? Is it time for her to move in with me? Will my new roommate be willing to help me out with her? Is she moves in with me, will I ever get any work done again? Will I ever be able to travel? What about sleeping? She needs a lot of care. A lot. And how can I get her in and out of my house without a ramp? What about bathing her with no shower downstairs?
Finally, I stop. I realize I can’t make any decisions without more information. Tomorrow, Scarlett. We’ll figure this out tomorrow.
Monday, August 24, 2009
Cold, cold hand
“No morphine,” I tell the emergency room doctor who calls me as I’m driving late at night from Tallahassee, where I’ve been taking a mini-vacation, to Charlotte where I live.
The next day when I get to the hospital I tell them again: “No morphine. I know she says she’s in pain. She’s always in pain. But no morphine.”
The doctor agrees with me, but that night someone gives her morphine anyway. The next day the doctor writes that she’s allergic to morphine in her chart.
The last time she was in the hospital they loaded her up on Sister M. And she got so loopy we thought she’d had a stroke. She couldn’t complete a sentence. Thoughts were amorphous things floating like clouds far above her grasp. It lasted for weeks, months really. She tried to communicate but couldn't.
The next day I am sitting in the green chair in my mother’s hospital room and she’s methodically examining her cover sheet. She has a pen in one hand and a partially completed crossword but she is not doing the crossword puzzle. Instead she runs the edge of that sheet thru her fingers. When I ask her what she is doing, she has no idea. Finally, she drifts off.
My friend Patti says, “So many of my women friends have been taking care of their mothers longer than their mothers took care of them.”
Good God, I think. Decades.
Now my mother is sitting staring blankly out at nothing, wearing a green hospital robe, a purple DNR wrist band and a heart monitor. She has expressly stated that no rescue attempts should be made in the event she gives out. But she’s not really that sick. She’s 91. She’s in constant pain. She’s often confused, but there is nothing drastically wrong with her, nothing a few months of blood thinner and ten or so other pills a day can’t cure.
My daughter is entering her first year of college. I hope she remembers the instructions I give her on my cellphone as I sit in the parking lot of the hospital.
“Honey, if they want to give me blood thinner, if they want to give me antibiotics, if they want to give me anything, just say no. Let nature have its way. Do you hear me?”
She says that she does, but who knows what it will be like when we're there.
My mother said to me in the hospital: “When my time comes, I don’t want you to be sad. I want you to be happy for me. My life as me is effectively over.”
“I will miss you terribly,” I answer. “But I will be happy for you.”
Sunday, August 23, 2009
Homage to Wendy
Dean and I walk the beach, talking of sea turtles, guitars, old friends.
“Tell me the name of those again,” I say, pointing to tiny clams that disappear bottoms up in the brown wet sand.
“Donax,” he says.
“That’s right,” I say. “I always think it’s gonads.”
Returning to the thin arm of sand, stretched before the low beach house, Dean sits on the towel while I wade into warm water, my joy meter ticking upwards as the waves canter toward me. And I dive into the murky Gulf, thick with salt and seaweed. Far across the water, the horizon stretches in a long flat line.
“It always changes,” Dean had said. And he’s right. It used to be you had to walk miles for the water to reach your shoulders. And now I’m just twenty or so yards out and it’s plenty deep enough. And yet it’s always the same, too, I think, laying my body on the surface as waves jostle and knead and tease me like a cat with a toy mouse.
Yes, God, this is why I came, for this, for this. And a voice in my head says, this would make a nice poem. Not my voice, of course. It is Wendy whispering, not wondering why I turn up – bad penny that I am. She never scolded me when she was here, just gave me that look sometimes that said, “simmer down.”
And now she exhorts me to clutch the seaweed, the long water grass, brushing my fingers, to breathe in the pungent, ancient scent, to stop simmering now, and live life at a full boil.
Wednesday, October 08, 2008
Merlyn the Iron Dog
Merlyn is a poor excuse for a dog. He hates to ride in cars. He has allergies that cause him to stink. His anti-allergy medicines are expensive. He is quite smart and will be obedient just long enough for you to actually trust him, then zoom he runs off, laughing at you for being such a fool.
And yet I find it impossible not to love him. I love him more than any of the other dogs we ever had. The thing I love most is that if you yell at him, he won't slink away but will come stick his nose in your hand, as if to say "You know you love me so stop being angry."
We were despondent Monday night. I drove H to Backyard Burger so he could get a burger. I just needed to get out of the house. Then we went to the video store in what we figured was a futile attempt to find a movie we could both enjoy. We needed distraction big time.
Of course, nothing looked appealing. Two heartbroken people stumbling around the video store, one of whom doesn't really like many movies to begin with. We were just about to walk out when I saw the box for Iron Man.
"Hey, I heard this was good," I said.
And it was. And for two hours, we kept the grief beast at bay. I love the way fantasy and reality mixed in this movie. It was hilarious in spots; Robert Downey Jr was a revelation, something very Deppesque about his performance. Of course, the big fight finale was OTT. Hollywood endings always are. But the very end of the movie? The last line? Brilliant.
So now, three days later we are on our way to pick up the prodigal dog. It's not degenerative bone disease. And it only cost $2000 to find this out. We'll see how he fares. Maybe he'll turn out to be as resilient as Iron Man. Whatever. You only get so many years with a dog, so if he smells bad and doesn't behave like a good dog should, you love him anyway. Cause when they're gone, you're in for a big hurt.