I know what time the clock says it is, but my body is in some other galaxy where day and night are random stripes of dark and light, unrelated to waking and sleeping. The last time I fell asleep, it was eight in the morning after a long night of excruciating pain in my right sacro-ileac joint and a knot in my gut, in the spot called the ileosecal valve. It’s an old pain, long familiar to me, but this has been the worst episode I can remember. Inflammation in my gut overflowing its bounds and sending sharp agony outward in spirals through my whole body.
When the valve between the small and large intestines is irritated and jams open, toxins from the bowel flood back into the area meant for processing food and I slip into another familiar terrible state, a nightmarish semi-consciousness of auto-intoxication, where I drift on the surface of sleep, but can’t sink. Finally at eight, wary of the thresholds of epilepsy, I take Benedryl and Ativan and sleep for a few hours.
These are series of speculations on what recent insights in a variety of areas of science could mean for a community based healing movement that includes amateur research infused with radical understandings of what we mean by health and environment, and high expectations for our own empowered potential.
Epigenetics is what scientists call the discovery that events in our environments can change the outer skin of our genes, change the way in which they express themselves, turning them off and on depending on how our bodies read the conditions of life, and that those changes get passed on to our descendents. Dutch women who survived the famine of 1944 gave birth to low weight babies, as expected, but when their children grew up, they also had low weight babies. The story of hunger clung to their DNA and passed on the traits appropriate to a permanent famine. Combat veterans pass on the changes in their own bodies that come with the constant threat of sudden and violent death, and the DNA of their children born after the trauma wears a coat of camouflage, expressed in the symptoms of PTSD.
But if hunger and terror tattoo the skins of our genes with outdated survival manuals and a continuous stream of SOS signals, if the conscious acts of human beings to deprive each other of food and safety and life itself, mark us in inheritable ways, surely we can decide to mark ourselves, through an entirely different set of human acts, with messages of solace and solidarity, with a codex of healing.
1960, Puerto Rico
March 2, 2011 A few days after my last post I found out that my mother decided to stop treatment for multiple myeloma and start hospice. Sometime between a few months and a year or so, my mother will die, and I'll no longer be able to call her on the phone to share the joyful news that Paraguayan campesinas are marching with signs saying "Without Feminism, There Is No Socialism," and declaring that the best way to end climate change, hunger and extreme poverty is a feminist land reform that puts agriculture into the hands of women, or tell her about the delicious new word I discovered, or the wild thing I saw on wing or furred foot or scaled belly, or read her the newest bit of draft writing. I've dreaded this moment all my life, since I first understood that someday my parents would die.
c. 1970, Chicago
Over a period of days we made plans for everyone to visit my mother within the next two months, then, as her illness seemed to suddenly escalate, changed that to weeks and finally days. Ten days ago I flew to Boston and by the time I arrived, my mother was no longer able to hold a conversation.
March 15: My mother's laughter is a thread running through all my memories, along with her sharp insights, her one foot in front of the other courage, her delight in colors, birds, textures, plants and rare words like finifugal--"of or pertaining to the shunning of endings." Soon I'll be writing much more about her, but for now I'm concentrating on breathing, crying and scanning photos.
March 21: True to herself as always, my mother refuses to use Depends, refuses to be lifted, and through sheer force of will, rises to her feet to sit on a commode. Her will, it seems, holds the atoms of her being together, waiting, we think, til the last of the grandchildren arrive--not because she wants to see us, but because she knows we want to see her, and she can't stop taking care of us, can't check us off her list yet. Tomorrow, when we're all here, we tell her her tasks are done.
Her decline has been dizzyingly fast. I find myself wanting to talk to the mother I've been chatting with on the phone with once or twice a week for an hour at a time, to tell her what it's like, her dying. To say Mami, you were amazing today, or to laugh with her about the fact that when she's asked if she wants water, or a cover, or anything else, she's been saying "not particularly." Last week's mother would enjoy hearing that about herself. Or how she shifts into Spanish, in a high, childlike voice. She'd be so interested.
So my plan is to write to her, talk to her, keep conversing--because today's mama, deep inside herself, tells me to shut up and go away when I explain that the trip to the bathroom is no longer possible, tells my father to make me stop. I'm glad she had her commode victory.
Meanwhile, stevia sweetened coconut milk chocolate pudding, abundant good food, lots of talking to each other and messages from friends gets us through. Plus rescue remedy. Gonna try for some sleep.
In the middle of the night last night I was up with my mother for several hours, adjusting medication, helping her onto a commode. Today she mostly slept, and hasn't been speaking, Sometimes she waves her hand around, lifts her arms, but mostly she sleeps, breathing through moisture accumulating in her throat, and we speak to her, letting her know both that her work is done, and that her legacy continues. It's been a joy fighting for her wishes, in the face of a nurse pushing catheterization, or those who want to over medicate. At one moment last night I was telling someone that we aren't going to decide what's best for her or interpret signals--we'll ask until she says (she was still saying things then) and she said softly "uh huh." Old friends came by to sit with her and the last of the grandchildren arrived.
We also talked a lot about funerals and burials and have decided to dispense with funeral home services. I'll wash her body with my daughter & niece, we'll dress & wrap her, and we're going tomorrow to see a place that makes burial baskets, fiber containers, and all sorts of biodegradable boxes. I'm exhausted from being up til 5 am, so off to sleep shortly.
March 23: My mother Rosario died at 3:30 a.am yesterday, March 23rd. I had gone to bed at midnight. I woke sudden;y at 2:40 with an image of her still face, so I got up and went upstairs. She was breathing heavily, as she had been for the last day. Lunece, her favorite caretaker for the last three years, had asked to do a night shift, even though she works two jobs and has children. My mother had asked her to be around as much as possible. She and I sat and talked for half an hour or so, and I spoke to my mother a little, as I'd been doing all along, telling her we were all OK and she could go. One of the hospice nurses had told us that women like her, who have been driving forces in their families, also have a strong identity in caring for their kin, so we should also tell her her legacy was safe with us, that she'd continue. So I told her we were OK because of her, that we were still following her instructions, that my father was napping and drinking enough water. I decided to go back to bed. Five minutes later I heard Lunece come down. She woke my father and told us Mami had stopped breathing. We went upstairs while my niece Olivia called everyone to come over. My mother took three or four more breaths at long intervals and then stopped. We all stood around, talking, crying, laughing.
After a while, everyone else left the room and my daughter, my niece and I washed my mother's body and sang to her, first a sacred song from the Yoruba tradition, and then Canta y No Llores, one of her favorite songs. We dressed her in a long red dress she loved, and arranged her on her bed.
We decided not to use a funeral home at all, and to do things ourselves. Yesterday we went to an alternative burials company called Mourning Dove, to look at biodegradable caskets. They had burial baskets, paper maché cases, cardboard coffins and then suddenly we saw a beautiful casket of woven fibers in several shades of brown. When we asked about it the owner told us it was made of banana leaves. We all gasped. It was perfect. She also showed us a breathtakingly beautiful shroud made of brilliant golden yellow dupioni silk, lined with little packets of white sage sewn into the lining.
My mother wanted to be allowed to decompose, to become soil and plants. Most cemeteries don't allow that, but we've found a way. Although the place she'll be buried requires cement grave liners with lids, we can request that it be put in upside down, without the lid, like the top of a butter dish, so her casket rests directly on soil. We can't plant things over her, but she'll be able to join the earth as she wanted. We're also putting soil from our land in Puerto Rico and Vermont into the casket with her.
I'll be staying here another week, then flying home to be part of the Sins Invalid show and taking care of various things. Then I'll come back and stay with my father for a few weeks and help him reshape the house for this next phase of his life.
This afternoon I went out to buy a dress for the burial. My mother loved bright colors and dressing in beautifully constructed garments and I had only packed jeans and shirts. I found the perfect dress, soft plummy red material, beautifully cut to flatter, and some short boots with lace insets. When I came back to the house, for a few seconds I thought my mother was sitting upstairs in her well lighted room and I was all set to run up and show it to her, knowing she'd get as much pleasure from it as I did. For those few seconds I forgot she was dead, so that remembering was like falling down an elevator shaft.
All day people have been stopping by. Sometimes it nourishes me and sometimes I have to get away and be quiet. Sometimes I cry spontaneously. But any connection with someone who's lost their mother recently makes me sob. I called my friend Shannon and was sobbing before she picked up the phone. I met my mother's friend Denny in the street in front of the house, and we embraced and sobbed right there.
I make huge batches of sugar free, dairy free chocolate pudding for my father. Ice cream and chips disappear fast. Puerto Rican rum on chocolate mousse ice cream. Thai noodles. Baked organic chicken thighs. Delicious Chinese food brought by a friend. Death and food.
And stories. All kinds of stories. Mostly my father telling about his own life to the grandchildren who live far away. Tales of all the years doing tropical island ecology among the sharks and the flying fish and Moray eels. Stories of his early political life, of how he and my mother became communist farmers in rural Puerto Rico.
Upstairs, my mother's body, laid out on the hospital bed, becomes less and less like her. I no longer want to go into the room. I want her in the earth, embraced by microorganisms, become humus. My beautiful mother needs to become soil and ivory bone, needs to break down the web of her tissues into usable bits of protein, needs to convert herself into beetles and earthworms and spores and be eaten by birds who will chatter and swoop among the trees of Mt. Auburn cemetery, her last craft project--to unravel. Tomorrow she can begin.
Saturday morning I walked over to the nearest City Car Share pod and began my first road trip in almost five years: an hour north to see Stephen Marshall, my contractor. Springtime in Northern California (yes, February is spring here) means fields of flowering mustard, seas of brilliant lemon yellow lapping against the dark bent trunks of live oaks. Rolling hills like the flanks of pale gold, short-haired beasts asleep in the sun.
I'm listening to Silvio Rodriguez' CD Segunda Cita, marveling at the way Cuban singers can put political precision and big word into such heart-stirring poetry. Dijo Guevara el humano que ningún intelectual debe ser asalariado del pensamiento oficial. "Guevara the human said no intellectual should be on salary to official thinking." And he goes on to sing the horrors of an artificial self, of a head without a will of its own, of a conditional heart. Driving between the yellow fields of Sonoma County, contemplating my vocation, I sing with him. Dijo el Che legendario, como sembrando una flor, que al buen revolucionario solo le mueve e amor. "The legendary Che said, as if planting a flower, that the good revolutionary is only moved by love."
To declare oneself a revolutionary in the time and place where I now live sounds pretentious. Like declaring oneself a saint. In his essay "In Defense of the Word" Uruguayan writer Eduardo Galeano writes about the assault on meaning, when "revolutionary" is used to describe the latest detergent, love is what one feels for a car, and happiness is the sensation of having eaten sausages. But I grew up in the decades of decolonization, in a house filled with the words of people for whom revolution wasn't about storming barricades, but about transforming societies to make them livable, joyous and just.
"The task of the revolutionary," my father says, "is to change consciousness." To affect the way people think, so that they are able to imagine a different way of life and begin creating it. In that same essay Galeano writes, "What process of change can move a people that does not know who it is nor where it came from? If it does not know who it is, how can it know what it deserves to be?" As a teller of significant stories, with a deep sense of historical context, this is what I try to do--to change our sense of who we are, where we came from and what we deserve.
The house I am building is a story; a story about what capitalism does to living cells, about the catastrophic rise in cancer rates and the murder of bees, the wildfire sterility of GMO pollen and the permanent states of inflammation so many of us suffer from. The steel shell my contractor is designing and pricing, is a poem about immunity, about constructing a habitat that allows my overburdened defenses to rest. And because this sleek, metal poem challenges the story that "progress" has made us safe, that "the market" protects us, that the practices of modern science are objective, pure and benign, because it alters consciousness about what has happened to us, what we deserve, it is revolutionary work.
I have learned over long, hard decades, the power of a personal story deeply embedded in context. What I am setting out to do is to tell the story of my body, my aging, ailing, female, Caribbean Jewish, immigrant, disabled, queer, art-making, epileptic, childbirth-scarred body—and to deepen that story with history and widen it with ecology and global vision, until in encompasses everything I am burning to write and speak and make art about.
And the vision of what I want to do has changed the shape of the house, the strategy for funding it, the network of collaborators I’m building, and what I dream about at night. But most of all, it’s given me back that sense of anticipation, of knowing that I’m living inside an epic tale of adventure, where messages and teachers are everywhere, and neither time, nor effort, nor any experience at all, is ever wasted.
This time, though, I’m not setting out alone. At fifty-seven, I exist in a rich, dense mat of relationships, able to chart a course in which adventure co-exists with planning, where amidst the magic of happenstance, messages can also be asked for, and teachers encountered by design. The encounters I am planning for are with people whose passions overlap with mine, with organizations that can make good use of my brief presence, with archivists and librarians who can put their fingertips on things I need to know, and also with landscapes, from the closest we have to pristine, to those as scarred and ailing as the sickest among us.
It is both shocking and unsurprising that in the thirty-three years since my first epilepsy diagnosis, not one neurologist has ever suggested environmental factors a possible cause, in spite of the fact that our environment is filled with neuro-disruptors designed to devastate the central nervous systems of insects. There are huge vested interests behind the pretense that profit driven science is safe, and that the massive amounts of toxic substances produced by that science have no significant negative impact on people or ecosystems. At every step, attempts to trace the connections between carcinogens and cancer are hampered, but at least people are aware carcinogens exist. No-one talks about epileptogens.
When I was a child the world was full of unusual things, astonishing realities. Just the thought that we were part of a galaxy which was one of millions, a speck of life in a vast expanse of space, made me shiver and sometimes kept me up at night. As a child you are both shocked by reality and take for granted that it's strange. That caterpillars wind themselves up in silk thread, dissolve their own bodies and remake themselves into butterflies. That blood races around inside our bodies. That people organize wars. Or insert parts of their bodies into other people's bodies and this results in new people. My brother and I thought that as we moved through the world, we left energy trails behind us and that at the end of life, it would be like letting go of one end of a stretched rubber band---we'd go flying backwards along the path we'd traveled, only a lot faster--which is why we took care not to tangle our trails around lampposts our other people. We didn't want to get bruised.
This is the beginning of a major project I'm undertaking, to tell the story of my body, and particularly of my chronic illnesses, in the context of the poisoning of our planet for profit.
I was born on a farm in western Puerto Rico in 1954. My parent, blacklisted communists from New York, were unable to find work in the political climate of the 1950s, and bought an abandoned coffee farm, where they started growing vegetables and raising hens. This way, they guaranteed their food supply in spite of McCarthyism. During my mother's pregnancy with me and the first two years of my life, I was exposed to large quantities of the pesticides DDT, dieldrin and lindane, as well as smaller doses of parathion. As it turns out, I also have a genetic variation in my liver enzymes that makes my body very inefficient at breaking down and getting rid of a large range of toxicants, so that what I get exposed to hang around for a long time.
After my return from Cuba in September, 2009, I enjoyed excellent health for several months, but was then exposed to a toxic level of mold in my apartment and became very ill. In April I was diagnosed with diabetes. In May it was a genetic liver condition, in June I learned I had antibodies to every single mold I was tested for, in July I tested positive for chronic Lyme disease and in August I found out I also have Bartonella, another tick-borne disease. In late June I had to leave my apartment practically overnight because I could no longer breathe there. I spent the summer camped out in various living rooms and offices while I tried to find that was chemically safe for me--free of natural gas, mold, carpets, new paint, smokers, scented laundry products, etc. In September I finally found a room in a house that's mostly OK for me.
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