Blue Peninsula: Essential Words for a Life of Loss and Change
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Blue Peninsula: Essential Words for a Life of Loss and Change
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Overview
"My son's illness is eight years old and has no name. It started when he was fourteen. He is now twenty-two. It is taking away his ability to walk and to reason. It is getting worse, some years more rapidly than others."
These words begin the first section of Blue Peninsula, a narrative of a son's degenerative illness in thirty-three parts focused around poems that have provided companionship and sustenance to the author. When multiple diagnostic avenues delivered no explanation for the worsening disabilities of her older son, Ike, Madge McKeithen "became a poetry addict--collecting, consuming, ripping poems out of magazines, buying slender volumes that would fit in my pocket or pocketbook, stashing them in loose-leaf notebooks, on shelves, stacking them on the floor. In the midst of all this grief, I had fallen in love. With words. Poems, especially. And just in time."
McKeithen draws on a wonderfully wide ranging group of of poets and lyricists--including Emily Dickinson, the Rolling Stones, Paul Celan, Bruce Springsteen, Marie Howe, Walt Whitman, and many others--to illuminate, comfort, and help to express her sorrow. Some chapters are reflections on friendships and family relationships in the context of a chronic and worsening illness. Some consider making peace with what life has dealt, and others value intentionally reworking it.
Not written to suggest easy solace, this powerful work aims to keep company, as would any individual whose loved one is on a course in which the only way out is through.
Product Details
| ISBN-13: | 9781429952323 |
|---|---|
| Publisher: | Farrar, Straus and Giroux |
| Publication date: | 04/04/2006 |
| Sold by: | Macmillan |
| Format: | eBook |
| Pages: | 240 |
| File size: | 1 MB |
About the Author
Madge McKeithen was born in Fayetteville, North Carolina, and attended the College of William and Mary and the Johns Hopkins School of Advanced International Studies. She has been a teacher, and a researcher and editor for a U.S. congressman and the World Bank. She lives in New York City. Blue Peninsula is her first book.
Read an Excerpt
Blue Peninsula
Essential Words for a Life of Loss and Change
By Madge McKeithen
Farrar, Straus and Giroux
Copyright © 2006 Madge McKeithenAll rights reserved.
ISBN: 978-1-4299-5232-3
CHAPTER 1
A Coming to Terms
* * *
A MATHEMATICS OF BREATHING
I
Think of any of several arched
colonnades to a cathedral,
how the arches
like fountains, say,
or certain limits in calculus,
when put to the graph-paper's cross-trees,
never quite meet any promised heaven,
instead at their vaulted heights
falling down to the abruptly ending
base of the next column,
smaller, the one smaller
past that, at last
dying, what is
called perspective.
This is the way buildings do it.
II
You have seen them, surely, busy paring
the world down to what it is mostly,
proverb: so many birds in a bush.
Suddenly they take off, and at first
it seems your particular hedge itself
has sighed deeply,
that the birds are what come,
though of course it is just the birds
leaving one space for others.
After they've gone, put your ear to the bush,
listen. There are three sides: the leaves'
releasing of something, your ear where it
finds it, and the air in between, to say
equals. There is maybe a fourth side,
not breathing.
III
In my version of the Thousand and One Nights,
there are only a thousand,
Scheherazade herself is the last one,
for the moment held back,
for a moment all the odds hang even.
The stories she tells she tells mostly
to win another night of watching the prince
drift into a deep sleeping beside her,
the chance to touch one more time
his limbs, going,
gone soft already with dreaming.
When she tells her own story,
Breathe in,
breathe out
is how it starts.
— Carl Phillips
My son's illness is eight years old and has no name. It started when he was fourteen. He is now twenty-two. It is taking away his ability to walk and to reason. It is getting worse, some years more rapidly than others. Doctors continue to look for a name to call it. Until they find one, it is known to us by the names of its symptoms — progressive spastic paraparesis, Bence-Jones proteinuria, subcortical dementia — and intimately by its subtle violence, the anonymous thief ravaging our dreams and twisting our son's life.
falling down to the abruptly ending base of the next column,
smaller, the one smaller past that ...
He had been healthy and characteristically happy, our firstborn. Isaac, we had named him, "the one who laughs"; he chose to be called Ike when he became a teenager. During the second half of 1997, as he approached his fifteenth birthday, his walk became stiff-legged, progressively awkward, lurching. The pediatrician referred us to an orthopedist and he to a neurologist. November 13, 1997, a Thursday afternoon, the brilliant pediatric neurologist who would pursue the first battery of tests examined Ike and said, almost to himself, "There is definitely something wrong here." We had begun the leap across the divide from "before" and "normal." We had no idea that eight years later we would still be suspended, waiting for an "after," a diagnosis, a place to land.
The first symptoms were progressive spastic paraparesis. Paraparesis is paresis, incomplete paralysis, and para, of the lower body. Spastic, his legs are stiff, brick-hard, and they do not move well at the knee, the ankle, or the hip. More recently, they often become entangled. He twists himself up, falls. Hyperreflexia, abnormal Babinski: Ike's toes fan up and out when the sole of his foot is stroked by the doctor's hammer, the classic indicator of a major problem in the central nervous system's corticospinal tract. Ike's legs have too much tone and excessive reflexes; his inhibitory impulses are impaired. More now, there are repetitive tremors and bounces that last for several minutes. Sometimes he tells me that these more sustained tremors are beginning to hurt. Progressive, it is getting worse. He has gone from walking with only an apparent limp, to a lurching, lunging walk using walls and railings, to the use of a cane or walker and scooter or wheelchair. He can walk only a single city block now. His pulse races with the effort. It is hard to avoid imagining a time when he will be unable to walk, period.
More than forty disorders on the original differential diagnosis were considered and eliminated in the first months. Brain and spine MRIs, a skin-muscle biopsy, blood tests, gene scans — I sensed that we were in good hands. I was completely unprepared for no answer, for uncertainty, silence. I simply did not know that "none of the above" was among the multiple choices of modern medicine. Naïve, perhaps, but I am not alone in this. When friends asked about a diagnosis and we replied, "Nothing clear yet," their looks showed disbelief. Surely we had not been to the right doctors, asked the right questions, used the right words.
Obvious things were quickly ruled out. No lesions. No family history of degenerative disorders. Tests continued. Fibroblasts from the skin-muscle biopsy were stored here, tested there. Little pieces of our son flew everywhere. "Orphan diseases," rare and rarely well funded, entered my vocabulary. My Web browser "favorites" list grew long with rare disorder Web sites. We followed up on each hint of a treatable condition, as well as the untreatable, valuing even a name for the unidentified intruder. We flew to New York and Philadelphia and the Mayo Clinic and discussed Ike's case on the phone with specialists in Durham, Baltimore, D.C., New York, Ann Arbor, and Boston. I took Ike to physical and psychological therapists — and to back specialists. He and I took up swimming after school to strengthen his back and maintain his mobility. I volunteered with an ALS patient and attended a national family conference for one of the orphan diseases for which Ike was being tested — to stare down my worst fears. I found heroes in places I had never wanted to go looking.
As we lived forward — at work and school, at home and in our community — slowly, almost imperceptibly, Ike worsened.
... so many birds in a bush. Suddenly they take off ...
Our coping depended on framing Ike's illness as static; to see it progressing was unbearable. Our relationship with our pediatric neurologist was understandably strained. A committed clinician, he reported what he saw, and what he saw was worsening. I knew he was too smart to be inaccurate. Ike said it was too depressing to go to see him, and so, for a while, we did not.
During Ike's senior year of high school, Bence-Jones proteinuria appeared in a routine exam. Substantial amounts of a kappa light-chain protein in his urine, and we were off and running again, new questions for the oracle. Hematology joined neurology among the medical specialties that might hold clues. More consults and scans and biopsies, a few more things ruled out, and a new "condition" named MGUS — monoclonal gammopathy of undetermined significance. Undetermined significance. More things "not normal," more indicators to monitor, yet no more understanding of cause or prognosis.
Ike left home for college in September 2001, four years into his illness, with a scooter to get around, a dormitory resident adviser who himself lived with a physical disability, and a learning support program, should he need it. No longer living with the day to day of Ike's illness, cut into by a friend's death in an automobile accident and by my small portion of the enormous grief of 9/11, in September, October, and November of 2001 my life reverberated with emptied-ness. I left full-time teaching and began to write, and as Pablo Neruda puts it,
... Poetry arrived in search of me.
I became a poetry addict — collecting, consuming, ripping poems out of magazines, buying slender volumes that would fit in my pocket or pocketbook, stashing them in loose-leaf notebooks, on shelves, stacking them on the floor. In the midst of all this grief, I had fallen in love. With words. Poems, especially. And just in time.
On November 9, the college called. Ike was disoriented, confused, approaching paranoid. Enter the third symptom, dementia. Although most of his illness had been chronic, gradual, incremental, this was acute, a crisis. A detailed neuropsychological exam confirmed observations — marked cognitive decline in most areas, chunks of IQ lost, substantial drops in speed of processing, retrieval. Still no "why." College was gone, doctors' visits resumed; a new stage required our entrance. In June of 2003, six years into his illness, MRIs confirmed brain atrophy, loss of gray and white matter, and still no known cause.
... There is maybe a fourth side, not breathing.
Poems became almost all I could read. I tucked them inside the thick file of Ike's medical records when we headed for Mayo again, then to a geneticist, and to Children's Hospital of Philadelphia. I read and reread them in waiting rooms and exam rooms and sometimes hid in them when the world I could touch was too much. poems spoke to me and sometimes for me.
With a diagnosis, like it or not, you belong somewhere. Without a diagnosis, nowhere. There is no group for Those Waiting to Know. No national organization. No informational brochures. But you can curl up in a poem and sometimes find there what you need — a way to wait, humility, perspective, love — to go back out.
The poems I collected, at times near lifesaving in various stages of my son's illness, have again kept me company as I have been writing in recent months. I would not have considered writing about Ike's experience without these poems; with them, I can try to hold the gaze of examination and reflection. As I looked back through those I had collected over the years, I saw poems about creating a space, admitting vulnerability, the incompleteness of knowing, connecting through suffering, and finding energy and life in the midst of it all. Some have the feel of an unanswered question, some of a questioned answer. Some contain; some leak. Stopping short of or at a place other than with a complete answer can be abided when a poem goes with you. Poems can suggest and value incompleteness, the understanding that derives from partiality, the knowing in part that is both horrible and beautiful.
"Wait until another symptom develops, until something worsens," a doctor instructed. Asked to acknowledge such powerlessness relative to my son, I could not catch my breath. Now, sadly, eight years later, I know what the doctor meant. I could not have abided seeing it without the poet.
My son's symptoms are worse. The speed of the degeneration has picked up in the last year. Conversations with him do not now flow; they are more analogous to the work of mining gems or the haphazard discovery of shells at the water's edge, sometimes extracted with considerable effort, at other times stumbled upon. In this, "A Mathematics of Breathing" reminds me to keep breathing and shifting perspective and allowing for the possibility of new dreams.
Mathematics is about quantities and operations, amounts and processes. So is knowing — things known and ways of knowing them. And so, this poem suggests, is breathing — the fullness of life as well as its rhythms, in and out. Forms abound in its lines — architecture, calculus limits, graph-paper crosstrees, colonnades and vaults, equilateral triangles and squares, a thousand nights and the odds hang [ing] even. And processes — thinking, falling, dying, paring down, sighing, leaving, listening, releasing, finding, telling, watching, sleeping, touching, dreaming.
Not breathing seems to me a sort of involuntary non-movement, the holding of our breath that comes with intense fear or stress or sorrow. In the stillest, saddest places, something from outside must coax movement. In words and form, this poem does. Breathe in, / breathe out ... these lines draw attention. The lines are breathable pairs — inhales and exhales — spread out, pulling air in. Not packed too densely, the poem breathes and invites response.
It starts with the suggestion, Think, an offer to cross the threshold and step inside. A colonnade stretches into the distance. Eyes, tracing its lines and repetitions, move. There are certain limits in a world of man-made structures, the territory we are used to. Arches and fountains fall down, and the promised heaven is never quite met, but vaulted heights are reached, and the colonnade does provide support; it does hold up the cathedral. The dying in this poem is a perspective, a way things look given the parameters of space and perception. In experiences of ongoing loss, in our son's degenerative illness, this poem reimages the falling away. Diminishing is dignified. Loss, illness, degeneration is placed in an aesthetic order, validated by construction, the way buildings do it.
The second part of the poem moves closer with the more familiar You have seen them, surely, the poet standing next to the reader to look together at something familiar, to venture a new take on something already known. Honing, focusing in, paring / the world down to what it is mostly, the poem takes the reader to proverb, to "before a word," a known thing containing wisdom, sometimes puzzling but just the same an assumed truth. The "bird in hand worth two in the bush" proverb, and the birds taking off, as if the particular hedge itself / has sighed deeply. The poem constructs a triangle from the releasing of something, the awareness of that release and the air in between — Ike's reliable good health leaving, our admitting the sadness, and the time or space or whatever it is that is needed in between. Another equal side, the fourth side, / not breathing. From the loss to a perception of it, to traverse the ... air in between ... involves crossing a territory of not breathing.
Another way, the poem suggests. In my version ... begins part III. Scheherazade is spinning out cliff-hangers for her very life. The reader has escaped the stock-still not breathing of the last line of part II for territory riddled with risk — odds, winning, chance — not just movement but creativity and inventiveness in the face of each day's dangers. Leaving denial to risk death daily, fending it off to stay alive for the chance to touch one more time / his limbs, going, / gone soft already with dreaming, and in that dreaming to envision the shore of a life shaped by illness.
The poem contains loss, risk, and continuing. It ends with the word starts, in a single inhale line. It offers life as a quantity to be held and asks the reader to breathe it in and out. The last line — is how it starts — draws the breath in. Ours is to exhale, respond, create ... continue.
CHAPTER 2Acquiring Losses
* * *
ONE ART
The art of losing isn't hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster.
Lose something every day. Accept the fluster
of lost door keys, the hour badly spent.
The art of losing isn't hard to master.
Then practice losing farther, losing faster:
places, and names, and where it was you meant
to travel. None of these will bring disaster.
I lost my mother's watch. And look! My last, or
next-to-last, of three loved houses went.
The art of losing isn't hard to master.
I lost two cities, lovely ones. And, vaster,
some realms I owned, two rivers, a continent.
I miss them, but it wasn't a disaster.
— Even losing you (the joking voice, a gesture
I love) I shan't have lied. It's evident
the art of losing's not too hard to master
though it may look like (Write it!) like disaster.
— Elizabeth Bishop
Lose something every day. Your world is a slowly contracting circle. You can picture that; it isn't hard to master. You can't keep track of things, so just give them up — your car, your cell phone, your computer. You can't explain yourself to people who knew you before, so just give them up — former friends. You can't run anymore; when you swim now, it's about your arms, your legs weighty, anchors — give it up. Sit. This losing must go farther, faster. This losing, finally something you can master, finally something I can master. All I have to give up is where it was you meant / to travel — just the dreams and hopes of what your life would be, my son, just its full, round shape, just the dream that you would stretch out into it as you grew and loved others and knew their love, the hope that you would sometimes share with me the sense you had made of things, of your world. But you won't be doing that, will you? ... disaster.
(Continues...)
Excerpted from Blue Peninsula by Madge McKeithen. Copyright © 2006 Madge McKeithen. Excerpted by permission of Farrar, Straus and Giroux.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Contents
Preface,A Coming to Terms,
Acquiring Losses,
Crying in the Car,
Clarity,
Looking,
Looking Again,
Signal Changes,
Lines to Cross,
To Bleed,
Open to It,
Sifting Questions,
Well Wishers,
Vividly Inarticulate,
Courage? Yes,
Bearing Things,
Shards,
Making Light,
In the Details,
Central Park Boathouse,
Slanted,
Along with a Life,
Houses and Hearts,
Naming,
Grief Work,
Holding Patterns,
Body,
Rocking,
Shipwreck,
Surprises,
Sensory Illness,
Shelving Selves,
Without the Loneliness,
Reading Group Guide
About This Guide
The questions and discussion topics that follow are designed to enhance your reading of Madge McKeithen's Blue Peninsula. We hope they will enrich your experience as you explore McKeithen's moving story and the poems that give her clarity in the face of her son's degenerative illness.
Introduction
Madge McKeithen's son Ike was fourteen years old when he began to have symptoms that seemed outside the parameters of typical growing pains. The medical community was at a loss to give him a definitive diagnosis, but the prognosis was undeniably a challenging one: over the next eight years, McKeithen watched Ike lose his ability to walk, to think clearly, and to live without continual care. A teacher and editor, she found new power in the antidote of poetry-not so much for comfort but for understanding, a way to distill particular truths through words that were by turns unflinching and soothing. In more than thirty succinct, wise chapters,
Blue Peninsula collects dozens of illuminating poems, accompanied by McKeithen's candid recollections of Ike's unfolding illness.
McKeithen draws on wonderfully wide-ranging poets and lyricists, including Emily Dickinson, Paul Celan, Elizabeth Bishop, Bruce Springsteen, Marie Howe, Walt Whitman, and many others. Some chapters are reflections on friendships and family relationships in the context of a chronic and worsening illness. Some consider making peace with what life has dealt, and others value intentionally reworking it. McKeithen writes that her book "is not about resolution, but about connection." In that spirit, Blue Peninsula is a unique work that does not provide easy solace, but aims to keep company.