Jesse Caring for Carcinoid

2009-05-17T20:33:00.000-07:00

I have been living in Korea, teaching young children English, for the past five months. This is the country where I've done most of my training.

I started running and biking within the first few days of arriving. I was living in Geyongsan, a suburb city of Daegu, like all other cities in Korea, fringed about by mountains. My first runs were really tremendous. I stumbled out of the city onto paths winding into the hills towards the mountains. I never had any idea how far I was running, or how fast, but for a while, I felt like an explorer. I was always on the edge of being lost. And I knew that if I tripped or twisted my ankle I wouldn't be able to get back to where I had come. Even in English I didn't know the names of the places where I was working or where I was staying. (I'll never forget those forest runs, not knowing where I was, how far I'd come, whether I knew the way back, and all the while being overwhelmed by the horizons of mountains.)

I was also biking several times a week while living in Geyongsan. There was only one gym and it didn't have proper spinning bikes. So I pedaled away as fast as I could on an aerobics bike which was too small: when the bikes are too small, when the language all around is impossibly different, and when the training is a for a triathlon as it is for me--a struggle against a disease--then its easy to feel quite alone. And you can, perhaps, imagine me banging my knees against the handle bars at a hundred and twenty rotations per minute, as a way of struggling against it all.

After a month in Geyongsan I moved to Ilsan, a suburb city of Seoul. Not long after moving here I was able to join a gym and it's there that I've done most of my training. It's a kind of prestigous gym. At one point I think a number of Korean movie stars went there, or maybe they still do. I'm not sure. But I do know that I'm the only white foreigner who belongs to the gym. I'm significantly taller than the average Korean, I am white, I have curly hair, and I have only one pair bright yellow workout shorts. And I guess I share these details because these differences, not to mention the more profound cultural and linguistic barriers, have made my workouts rather isolated. It's not that there aren't lots of other people around, nor even that we don't sometimes smile and say hello in quite a friendly way, it's just that I've done all my training alone. And because of that each workout has become a a race against myself at the end of which I'm left wondering whether I've won or lost.

Let me try to explain.

In the last three months I've done most of my running inside on treadmills and all of my biking on spin bikes. The treadmill is painfully accurate and mockingly futile: you can never beat the treadmill. It says, 'incline: 1.5%', 'calories per hour: 1150', 'kph: 13.4' or 'mpk: 4:40'. But that's not very fast, it doesn't seem very fast, not fast enough, I'm in the same place that I started, so I increase the speed, inching up by percentage points to 13.6, then 13.8, then 14.o, then 14.2, then 14.4, to 14.6 till I get to fifteen and treadmill says 'mpk: 4:00' but it's laughing because I'm still where I started. I'm reaching the limit of what I can sustain for a five-k, but it just laughs. I can't help falling into its trap. I don't find these jokes amusing anymore. There is just one kilometer left. There is only one chance to make something of this race. I increase the speed to 16.0. Still nothing. Then 16.5, 17. 18. 19. 20. I've reached my limit. I can't go faster and further. I haven't gone anywhere. But I know precisely how fast I've come. And it hasn't been enough.

The spinning bike is a primal machine. It doesn't have the gadgetry of the treadmill. It recognizes us only as animals, like biped rodents pursuing the instinct to relieve stress and fear and desire. There is no way of knowing speed or distance because there is no speed or distance. There is only the energy invested or divested, whatever it is.

I can't help falling into the trap of the spinning bike. I'm only a simple person. I need to know if I'm doing enough, if I'm going fast enough, if the resistance is enough. But I can't know. So I add resistance and try to increase the rpm. Over and over I do this. Then I watch the progression of the clock and the droplets of sweat gathering into pools. In that moment sweat is the only evidence I have. The sweat profused is work achieved. I pedal harder and harder. It seems the faster the sweat is falling the faster I must be going?

Because after an hour, or forty minutes, or an hour and a half, it doesn't matter. I never know how fast I might have gone or how far. I end in the same place where I began, sometimes winning, sometimes loosing, because the race I'm in, it's against myself.

One Tri, Two Tri

2009-04-08T19:29:00.000-07:00

Friends. Strangers. My friends. I've come here today. Looking out. And looking back. I'd like to say. Just to speak a few words. To answer your question: Yes, yes. The answer is yes. True, I've been tired, and slow. But the answer. The triathlon, the training. It's all happening. It couldn't be helped. The response. The reality. The choice. And the overwhelming response. Yes, I'm in. I'm in. We're in. We're in this together.

I've been training. I have to admit. Not just this week, or last week, not even just last month. But the running and the biking. It's somehow been worked into the weeks, the months, and reduced to habits and routines since this whole thing began.

But that's just a part. You see. And we can only run so far as our legs can run. And swim so long as we can hold our breath. Each of us. We try to do it all. To hold it all together. All of us. To work harder and harder. To go faster and faster. But there are no ends reached. They're too far for one person. And we remember, as we let go, as we give up, that we're already there. That we've already found, the end we sought.

What I mean to say. Last year. This year. There were times. There are times. When I was tired. I thought, this is more than I can handle. We did one triathlon. Can we do two? And it's not just the training. Because you ask your friends and strangers. And you don't want to ask too much. To be that person who always asks. But I know now, that it doesn't matter. They say, yes or no. Usually they say yes. You say, 'this cancer has a name'. And you don't have to explain. That's something everyone understands. The answer, the response. It's always the same. 'Let me see, see what i can do. Yes, yes. I'll do it.' I'm in. We're in. Yes, yes. We're in this together.

And the relief. The letting go. You let someone else do it, carry the burden. That's what this is.

Last year Joseph (the youngest Blackwood) was asking his friends if they'd come to the triathlon. During gym he once asked a friend who didn't know what a triathlon was. He didn't know how far you swam or biked or ran. But Joseph said, 'we're doing a triathlon because my mom has cancer'. And he said, "I'll do it". The reality, the response, the answer, when you're fourteen, is yes. I'm in. I'm in.

Last November I happened to cross paths with a stranger over breakfast. We talked for a while. I discovered he knew about building websites and he took a couple of hours to answer questions that I had. Afterward he said, 'well, if you need some help reworking your website I might be able to help you'. Then recently, as I was trying to thank him for all the work he's doing, he said, 'well, I don't have much money, I'm not much of an athlete, so I'm just trying to do what I can to help'.

That's what this is. The reality, the response. That we run as far as our legs will go. And we try, we try to do it all ourselves. But we can't. And it's then that we find, that there are others, strangers, friends, family, who understand. Who can. And they do. And they say, I'm in, We're in. We're in this together.

Wednesday, March 18.

2009-03-18T07:27:00.000-07:00

I guess there's no better day to write a new blog than today. There's nothing special about today. I have no insights, nothing I've been waiting to say, no reason to break the silence of the last nine months, no way of getting beyond all the things that haven't been said, no way of writing all the unwritten. It's just another day, almost mid-night here, about to disappear again.

I should have written immediately after the triathlon. I was excited, relieved, thankful. There were so many reasons to be thankful, so many people to thank. We take these mysteries, all the pains and sadness of life, and marvel as they become beautiful.

I spent the summer nursing two packages of sunflower seeds in a half a dozen plastic buckets. Most of the seeds died because sunflowers need more room to grow than a plastic bucket provides, but I watered those that survived everyday. Somehow they too became beautiful. Here are a few of the photos of those that survived, against the odds of the plastic buckets.

A word on training

2008-05-29T05:36:00.000-07:00

A word on training:

I love running. Almost like a name you’re born with; I don’t remember learning to run; I could run before I could remember. I am myself when I run.

I remember learning to bike, on Speedy, a silver BMX inherited from my older siblings. We lived in a small town—though it seemed big then—with open doors, a line of credit at the drugstore, dirt roads, penny candies, and unlocked bikes. Almost everyone learnt to ride on Speedy. Biking then, as it always has been, was a casual means of getting from one place to another. I biked a lot with Ben. We picked up snacks on the drugstore line of credit, took our dad his lunches, escaped the summer heat at Sullivan’s hole, collected tad-poles, and went biking simply to go biking.

Swimming: for me there are two types.
The first is natural as a means of survival or pleasure; I have always loved this first swimming. And because water is heavier than our bodies there is something in swimming akin to flying. They both use the same word—floating—for remaining above. I love diving in with closed eyes and feeling the water in darkness all around me.
The second swimming must be bought (though it’s never paid for completely). It will take everything from you, this second swimming, in return for four strokes. As a competitive swimmer I gave everything to the sport like an unrequited lover. I trained for it as I trained to wake up at 4:00 am.

Stephen and I talked about a fundraising event. I suggested that we bike across the country, from ocean to ocean, as a family. Of course, I’d never biked more than twenty miles at once; but I liked the idea of it. In response Stephen suggested a walk-a-thon or a hunger strike. He said, ‘I’d rather not eat for six weeks. I could say I won’t eat till I raise a million bucks’. I think my mom suggested the triathlon. There’s a kind of poetry—cooperation is essential—to having three sports in one. I see now that it takes determination to be a triathlete.

In October I started on the bike, doing seven or maybe twelve miles, and working hard to keep the speed over seventeen miles an hour. I wanted it at twenty-four. I was not wanting to finish the triathlon as much as I wanted to win it. It’s difficult not to associate competing in the triathlon with competing against cancer. The biking has been the most discouraging, it’s so easy to feel that carcinoid is something I’m racing against. I feel it there behind me and I push harder and faster, sometimes tears are streaming down my face because I feel that I can’t be fast enough, and I make the gear harder and pedal faster. Never can I go fast enough, I stop and look beside me, no one is there, no one is chasing me.

Over the summer I started swimming again, once or twice a week, after a six year break. By March, after I twisted my ankle, I was slower than when I started so I signed up at the YMCA. Swimming is the sport my mom loves best and she dives into it with the darkness and stillness of early mornings. Before the day has begun there’s an innocence to what it will be, like a house just cleaned with everything in its place, or a bed newly made with ironed sheets; at dawn my mom notes the outside colors—still reticent of the dark they are richer than any other time of day. For her the early dark is an hour of creation, like a present still wrapped the birds begin to stir and it’s their anticipation that makes the darkness hers. Often I’ve woken, with the rest of the family, to muffins or other baking, or floors already washed. For me, this darkness and stillness has offered a great time to sleep. So the first time my alarm went off at 5:45 my immediate instinct was anger before remembering--for years this has been the hour of my mom’s master’s swim practice--I struggle to find my alarm (after all, everything is dark). Not today, I decide. I’m too tired. I roll back over and go to sleep. Four minutes later, ‘Jess, are you coming?’ I’m awake again, and still angry with the dark, it’s mocking me, I know it. This time I get up.

Waking up for masters has become less painful. I’ve gotten stronger and my ankle has gotten better. It gets light earlier too and that makes me less angry. Inside my mom has already been up for forty-five minutes and had her coffee. It’s not that she’s less tired than me or has fewer reasons to sleep. But she’s more frugal with her time and better at making more out of less.

Running
I’d like to run more than I can, more than my body will let me. More than a couple of runs a week and my body starts to fall apart at the knees, hips, and ankles. I love the idea of running as much as the activity. I’d like to be a long distance runner. My thoughts are simpler when I run and they fit better into the reality of one step after another; as much as I like the idea of flying, life is better suited to running. I wish that I could run without ever getting tired. I have mountains in me and deserts that I need to run across, and one of them is carcinoid

The Only Thing Stronger Than Diamonds

2008-03-08T05:35:00.000-08:00

I decided this time to try to write a practical blog, so you might know something more about me and something more about my mom and something about what my family is trying to do.

If you know me well then you know that I’m not a morning person, or put another way, I’m not a person in the morning, not at least until I’ve had a coffee or two. So the other morning just as I was having my coffee and becoming a person I was surprised to note that my mom was in full workout apparel but also wearing a diamond ring. I thought, this is curious, workout clothes and a diamond ring, and mom doesn’t have a diamond ring, even more curious. But then I remembered, the ring is not stolen, it’s an engagement ring, only given by dad this year, since he was too poor those 32 years ago. Still, I focused on my coffee and I thought: workout clothes and diamond ring: curious. So I says, ‘Mom, where’re you goin?’

She says, ‘To my weight class.’

‘With a diamond ring?’

‘Yes. Nice isn’t it?’

‘Yeah, and it goes well with the blue shorts’

She smiles, ‘My fingers get swollen so it’s hard to get on and off.’

Not so curious I think.

‘But,’ she says, ‘I do take it off to go swimming. I know they say chlorine doesn’t affect diamonds but I take it off just to be sure.’

‘So bleach is stronger than diamonds?’

‘Oh, yes. I think so.’

Everyone always asks or whispers after they meet my mom, ‘how does she do it? The house is clean. And she’s so small after having ten kids.’

After thirty-two years of marriage, I think, it’s not belief in diamonds that keeps her house clean, but maybe bleach is stronger than diamonds?

That is only a small story, but if you can imagine keeping a house clean for eight boys, one husband, and two girls, you can imagine that it takes a lot of belief in something other than diamonds.

I said that I wanted to write something practical and I do. There seem to be about as many ways of approaching neuroendocrine tumors, carcinoid, carcinoid syndrome, or this silent cancer, as there are people. Sadly, the most common approach, for those that aren’t stuck with it, seems to be to dismiss it as a ‘very rare form of cancer’. Even among oncologists it is often misdiagnosed though it currently affects about a hundred thousand Americans. That is approximately one in every three hundred Americans. This categorization as ‘very rare’ is the primary challenge faced by the NET community today. My family is working with our many voices and many blogs to both make a noise for this silent cancer (though even our boisterous voices are not enough) and to help raise the funds that will identify the genes that cause neuroendocrine cancer.

As I said there are about as many ways of approaching this cancer as there are people. It’s not always easy to take something impractical or indefinite and put it into practical or definite terms. Like Ben I find that I bike faster and faster against the indefinite, and like Anna I want to keep running—away or forward—just to keep running.

On Christmas I sprained my ankle and I’ve only recently started biking and running again, though I’ve been swimming but without my feet. It’s been discouraging getting weaker because of something outside my control but my ankle is now getting better and I'm getting stronger again.

My family is training for a triathlon, we are training to give a name to something largely unspoken, we are training to make a noise for something unheard.

I want to run so fast. And I will.

December

2007-12-14T09:24:00.000-08:00

I want to gather into a jar all the things my mom has said, gather together each sentence and word as round, misshapen, and shapen jewels of many colors—to later pull them out and roll them in the light and watch as they toss careless wisdom headlong into the air. I open up my arms to pull them to me and I think back on all my life. But one by one they vanish.

It makes me proud to see my mom so strong and brave, she doesn't want to show people herself. I wish I were better at showing, at remembering.

There are lots of things I don't do well, that I'd like to do better.

I wanted to give my mom more hugs, but I have not done that better. There are lots of days my mom is tired and she doesn't feel like getting up. But she always does anyway, and she hides it expertly. The other day she didn't go swimming but she still managed to make muffins, 'muffins that taste like donuts', that's what they're called; she's been making them since we were kids and wrapping them in wax paper—hot from the oven—for our lunches. Three brothers were coming home that day. Sometimes it's easier to remember things she does, rather than the things she says. That day she was not feeling as well or as strong as before. But it shows more how strong she is.

Sometimes I wish humans weren't so frail and forgetful.

God says, 'cry all you want, I'll be here all night'
'Either way,' He said, 'I didn't have any other plans.'

Today she is feeling stronger. In the triathlon it's running she fears most, but this morning she ran three miles. It's good to hear a little pride in her voice when she says it.
You might wonder, 'what the glass-ceiling is for a mother of ten kids in today's world?' I wonder too, but she prefers to highlight the achievements of others. That's what love does, it holds everyone up, but it makes itself invisible. It's hard to write about and remember an expert love that has made itself invisible; it has vanished into others. But I'd like to try to tell you the way love makes the frail and forgetful strong.

August

2007-12-14T09:02:00.000-08:00

"If we do not think of time as inexorable then it can be measured as the ocean—it does not move irrespective of its planetary positioning, its unfathomable mysteries cannot be dissected by science, and its many cresting currents differ in tempo and motion. It is a frontier for exploration unwieldy as the oceans, mountains, and deserts, stretching forward like a waiting plain."

Transformation
I

This spring harboured the first signs of transformation:
My sister said, 'mom has gray hair. I've never noticed before'.
Afterwards I made a mental promise to be wary of these signs; as a watcher I am indefatigable. So I watched but could not see the gray just yet. Still, I'm sure it's there. My clairvoyant sister was married last year; she was the first; she always sees things before I do.
My oldest brother is about to be married. He is a traveler. In another age he might have become a shepherd, or a sailor—content to move constantly. Today, I feel he is wary of traveling, on the phone he says, 'how's mom Jess; she sounds tired'.
'Yes, some days she does, but she puts on a good face. You can hardly notice'
When you are married you can hear things differently--from the outside, and as an onlooker.
As I said, this spring was a harbinger of transformation; the substance has not changed only the tempo.

II

Time, as you may have noticed, runs in different wavelengths. The wavelength of fear, for example, is inordinately long, almost to the point of being still; but it is also deep as the ocean, hiding the known and feared; it is deceptively clear and glassy on its frontiers, perceptible, almost translucent; but it is impenetrably deep, murky, and lost—it is a wandering wavelength that rides beneath the surface of our lives.
Joy, happiness, contentment, or laughter has its own rhythm. This wavelength is not marked by duration but rather anti-duration. Happiness, no matter how lasting, is instantaneous. It is the most akin to the eternal, cresting in the concurrence between the mortal and immortal.
As a child, my mom first learnt about time—that it was not inexorable. It is not as the adults say nor as the requisitioned calendars, minutes, and hours reflect it to be. As children know, and she remembered, it can be bent by desire or will into anti-linear shapes. Small fluctuations, obtuse angles, or gentle undulations are the most incidental variations. They often pass by our attention, felt as invisible curtains but unseen (as invisible curtains). We look back now and then, almost wondering at what we missed. Grown-ups have names for these mysteries. (I’ve heard them spoken, ‘the distracted fit’, ‘the moment in and out of time’, ‘the winter lightening’, ‘the music heard so deeply that it is not heard at all’, and ‘déjà vu’).
As children we are born almost immune to the passage of time. We are blind to age; it is incongruous and flat; the day is long, like a hunger; and Sleep is an implacable thing, upsetting and comforting.
Long before she stopped being a child, Cathy became an older sibling. This deep overlapping of immunity with understanding was not without effect. As a child, time continued as a frontier of exploration but as an older sister she practiced manipulating his boundaries, and bending deeper curves into his linear course. Sleep still was implacable. She could not concede to Sleep and bend time to her will.
Time-worn parents will recognize that children are affected by a different sleep then the parents themselves. Children's immunity to the passage of time-motion grants Sleep complete mastery over their resting souls. Burdened by hours and years, adults hardly ever sleep this way. For Sleep overpowers the mind and will. Children do not notice but responsibility grows and we resist his implacable deliriums. (I know now that you cannot conquer Sleep without wounding him, or without asking him to limp from wakefulness to wakefulness.)
Whether Cathy knew what she was practicing when she challenged the boundaries of time or if instinct simply continued in its immunity, I can't say. I think perhaps both, understanding and instinct. She has always liked the idea of cause and effect, that questions can be framed by answers, and where answers end music flourishes. As a sister and a child she learnt both to swim and to play piano. These two aegis, fashioned in the time of overlapping, have resisted all change and form her vanguard against all struggle.
I can only speculate about the new limits explored by the twelve-year-old Cathy. The intricate weaving of time-immunity into the linear-efficacy of answers, effects, and crescendos was completed long before I began to exist.
The calendar year, as you know, is bent around seasons. Winter weaves cold and longing into the bones from within long days of darkness. The wavelength of winter is slow but profound, like fear. Much of our lives are accomplished in winter when our facientia are driven by rhythm and independence to become facta. Our doings become retrospective, the winter is a historical season where doings become deeds.
Spring moves quickly, like the wavelength of joy its duration is almost always instantaneous, as the movement of light.
Autumn is the crepuscular twin of spring; he is thoughtful, reticent, and full of longing and years but also readiness.
Summer is unbridled and unpredictable. The days are long, hungry, like childhood, and full of light or rain and untold stories.
Time is bent around these; and his linear course is given an almost circular wavelength. Our lives, bound to these eclipses, often end where they began—in knowing. Yet, we forget to notice, unless we cease to move or remain free from time's cascades. Old age knows this.
Cathy was twelve (but the measured years are not themselves important, only the instant, the moment) when she discovered that time was not inexorable.
I can only guess at her time-mastery over the next fifteen years and the years afterwards when I was still immune to time. Yet, I can see in hindsight that the island where she raised her own children was susceptible to long winters. Even in the summer I can remember my mom wearing sweaters to combat the cold and longing that persevered through her constant effort and efficacy—a sign that comes only with the winter wavelength.
The signs of long winters surround thirty-five years from pregnancy to adolescent maturation, like an artic plateau blanketed by thawless snow and a planetary sun. In this space the glacial solidifying of time allows the human will a freedom outside the natural evolution of minutes and hours. Here, in the winter-wavelength, the will can assert its efficacy as prior to the diurnal rhythms of eating, sleeping, and waking. This is the wavelength that the twelve-year-old Cathy adapted to herself and bent to her will. (If you cannot lend your imagination to understand what I mean, then consider this: my mom has always achieved more than is possible in a given day, without regard to herself, and without losing her spirit of optimism)
Imagine an alchemy whose intricate pattern allows the alchemist to live outside the normal boundaries of age and time. Such a pattern should answer many questions surrounding Catherine's appearance, her age, her size, and her habits of forgetting to eat, or to sleep, or forgetting to sit for days at a time. Most of all, however, it should answer the question of preparation, of constant preparing and the physics of efficacy within the economy of time.
III
As I said, time is neither linear nor inexorable.
Carcinoid began to show itself toward the end of the long winters. The cold of the ocean wavelength left my mom coughing with asthma or something else. She began to feel her bones although her age had not changed.
As her youngest approaches high school a chrysalis from winter to the summer-wavelength has become more apparent. Yes, years of preparation and winter planning have surfaced through the newly softened ground. Cathy is putting behind her the slow-ache of the winter-wavelength.
The Zamias, lavender, tiger lilies, black-eyed-susans and all the others whose names I forget, have over taken the garden and are growing in the soft soil beneath the house, bursting through vents and breaking crevices through the pantry floor. The bathrooms also have taken on a chimera of summer colour. Imagine them as chameleons scurrying in rhythm to the crescendos of summer-time. The windows have been opened throughout the house. My mother explained, 'there was too much old dust circulating in the renovated bathrooms'.
As a watcher, I understood even more than she; the winter light was faded, the walls had begun to peel, and the air had been breathed too many times. Real light is scintillating and the summer breeze is young, like childhood. In the chrysalis of time my mother had recalled these things. Without noticing, she remembered herself a granddaughter.
In the renovation of seasons, or of time, my mom has had the walls repainted; the struggle to keep the flowers from breaking through the floor is constant. Ominous florescent lights have been cut out, leaving sky-light and sky-darkness. The winter-china and Christmas decorations have been carried out from the dining room. A cherry-wood table has been built in their place. Like the foundation, it is so heavy it cannot be lifted. With outstretched wings, its falcon surface glides from one side of the house to the other. On its underbelly there is an engraving 'fabrique enchantee au milieu et au centre'
Catherine the musician has ordered a complete renovation of the exterior house. Once white, it has been sullied by years of suburban breath. I heard her talking to her mother 'off-white is opaque; if the house were blue it would seem translucent or cloudless under the sky.'
She has initiated a household transformation of wavelength. Summer glides peacefully and inconspicuously towards fall. Like childhood, duration is not the context of measure. Insight or music are perhaps better messengers of the summer substance.
Strawberries are growing directly below the kitchen windows. They must have been planted in some former year's preparation. Their gifts are constant—seeming to draw from the well of unchanged things.
The hibiscus blooms each day but only once before dying. Physics requires that the number of blooms be limited; but each day the laws of science are upended. Like the strawberries, the hibiscus seems to draw from the well of unchanged things.
The doctors have noticed that my mom's bones have lost some of their warmth. For years we have been buying calcium-enriched products to slow this process. The doctors have prescribed a shot that makes her bones stronger but it drains the life out of her stomach. Still, her bones grow stronger.
While waiting for my mom I made friends at the oncology clinic who said they would pray for my mom. They asked her name and said, 'baby, pray ‘n is like plant ‘n flowers – you ain't but got to plant 'em to make 'em grow.
They prayed right there in the sitting area while I waited for my mom to finish her shots. When my mom came out they laughed but it was love, it wasn't laughter 'my word, she is young and she is pretty'. My new friend smiled and turned to me 'now you don't forget what I said bout flowers'. Then she turned to my mom 'you goina be a'right honey'. She didn't say it like she had to, or wanted to, but like she needed to, like she'd seen into the future and into the past, she said it again, 'you goina be a'right honey'. The summer moves fast and slow all at once. I still have not noticed my mom's gray hair; we have been so busy preparing for my brother's wedding. In the summer the galaxy completes its journey from north to south; in the planetary rotations it is the season closest to the eternal. Some days the twelve-year-old Cathy is back. Today I heard her giggle on the telephone with her younger sister. Sleep comes earlier now, than he did in the winter. The bone-weariness should not have come, the astronomy is wrong. She is in the garden now, weeding and planting, and her face is red, I cannot tell if it is the sun or the Carcinoid; but she can't see her own face and she is smiling, it is summer-time and smiles are found in the well of unchanged things.

Blog – The Second – I’ll sing clear and free

2007-04-12T09:31:00.000-07:00

The last couple of months have been overcast and slow—as February and March tend to be.

Tuesdays

Every other Tuesday my mom goes in for her shot. Since she started going twice a month her symptoms seem to be fewer. I am always working when she goes to get it, but afterwards it is difficult for her to sit—as a mother of ten she has never really taken pleasure in sitting, and now on these days when she would, she does not—“A lot” she says, “Depends on which nurse administers the shot.” One nurse in particular is so careful and gentle that my mom can almost always sit afterwards. Another nurse tells my mom that it doesn’t matter who administers the shot, or how fast. On these days she can almost not sit at all. And then she also does not sleep.

I see all of these things afterwards. She goes to her shots alone. I teach children Latin verb and noun endings. At the end of the day we are both tired.

Fire

In January when it was coldest, my dad would get up at 4:30 to start the fire, and to start my mom’s car before she would go to swim practice. At night they would fall to whispered conversations by the fire, talking about the day and other things—the way young lovers used to do—before finally falling asleep—the way the exhausted will do.

Embrace

My mom is waiting for my dad to come home; it is not a Tuesday but a day of other appointments that my mom has been to while I have been at work and everyone else has been at school or else far away. I ask, “How were the appointments today?” She answers, “I’m really tired right now Jess, and I’d rather talk about it later. Right now I just want your father to hold me in his huge arms; and I won’t feel alone, or tired, or vulnerable.” My mother is not often this open, and when she speaks she has tears in her eyes. It’s hard to face our fears or loves so directly.

The stumble

In February my mom got so sick she said that she’d take a shot everyday and never complain. She never does complain and hasn’t ever really been sick as far as I can remember. Once or twice she was sick after major surgeries but never before without a cause or a convalescing end. It’s like hearing the virtuoso stumble and forget the music for a moment, bewildered by blindness or deafness or by sudden arthritis.

Spring

Spring is always an amazing season—the most delicate and determined—inevitably one finds the limp bodies of fallen chicks; or one sees frost glistening solidly over the early blooming crocuses.

It’s no mystery to me that Easter falls at this time of year as new life overwhelms the cold and the dark with warmth and colour.

On Easter Sunday my family took turns speaking about this new life. My mom says, 'Life is contradictory at first. I am very good at math but I also love poetry. I know that I have Carcinoid but I also fear nothing. I see myself standing in the wind and I feel my hair blowing. I hear the words of the hymn saying, 'I'll sing clear and I'll sing free''

First Blog

2007-03-17T15:22:00.001-07:00

My name is Jesse Blackwoood. I have seven brothers and two sisters. I am the fourth oldest. It’s hard to guess what they are now writing or thinking—we have kept these first entries hidden from each other; to write our own thoughts, without the thoughts of things already said bearing down on us.Standing alone now, it is much harder to speak up, more difficult still for the youngest, who is thirteen and still a boy; it’s not fair to ask him to.
Carcinoid does not ask, soundlessly it makes itself present; black and empty it breeds emptiness: endless emptiness, stretching out and closing in, tighter, and tighter, without name and without limit, a force out of reach and control. Life, for a minute, is winded, paralyzed; the pulse stops, the lungs to not breathe, the stomach tightens and sickens, all muscles are frozen, any movement impossible; only the eyes work—the messengers of the mind and soul—counting the seconds of a time that has stopped, looking at a world that has ceased to be, and searching over the sudden frozen river, for any weakness, any infirmity signifying spring, or some assailable approach, but finding none, despair washes the eyes with sleep.
This is the first response, an overwhelming victory for the enemy, allied with fear: Fear drags out hope, the unerring servant of truth, strips her of her unblemished clothing, and beats her almost to death before the face of impossibility.
This is Fear, not Carcinoid.
Truth remains locked in his house. Fear struts and shouts outside his gate but his words are muted by the music played inside. Truth sees fear from time to time, a hallucinating idiot outside the gate.
Enraged by the futility of his yelling, Fear storms off to torment another mansion.The enemy gone, Hope awakens, regains consciousness and pulls herself wearily toward the music.
The eyes are next, rubbing away sleep and welcoming a new day. Yesterday’s battle seems more like a dream—unaccountable even to the reality of names—Carcinoid is largely unknown. And we do not stand alone.
Truth is the last to speak, ‘Who is Carcinoid?’