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Main Gallery: Journey with Leukemia |
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I have had a lifelong passion for sewing, and began making things with a needle and thread when I was four years old. Throughout my life, I have commemorated special moments in my life with something that I would create just for that occasion. Whether a confirmation dress, a Christmas stocking, a baby quilt, curtains for a new home—through the rhythms of cutting, pinning, pressing, and sewing fabric, I would anticipate and dwell on what was to come.
When I found out that I had CML my life was completely rearranged in ways that I could hardly expect. Even (and especially) my approach to quilting changed. After I was prompted by a wise friend to express what I was experiencing in fabric, I immersed myself in the images, dreams, colors and patterns that would tell my story. Throughout the hope, despair, setbacks, treatment options, and challenge of bone marrow transplant, I
approached my first passion, fabric, and asked that it be my voice.
My previous quilt work was machine pieced in my studio in the evening after a day of work as an audiologist. When I became disabled and unable to work, I made smaller quilts, machine pieced at home, prepared to be quilted and embroidered by hand later. The time spent away from home waiting, sitting, and wondering was filled by my old familiar friends- the needle and fine threads, embroidery scissors and thimble. At every available moment—on trains, in waiting rooms, in meetings, I would take out my quilt and begin stitching—with every stitch hope, hope, hope.
My last hand-stitched work was “The Perfect Iris”—the roots soulfully embellished in my isolated room while I willed my sister’s stem cells to take root in my marrow. “The Perfect Iris” has been chosen by The Creative Center: Arts for People with Cancer and Novartis Pharmaceuticals for their 2005 calendar. Perhaps my work and my gift, which served as the focus of my prayers and hope through difficult times, will inspire others to grow too, stitch by stitch. |
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AN EXPRESSION
OF HOPE
38x45”, made
of dyed cotton, and embellished with “found
objects” such as twigs, gauze, shells and
embroidery thread.
December 2000-August 2001
This
quilt is made up of five horizontal sections,
beginning with the bottom section, which I
began shortly following my diagnosis. I was
trying to make sense of the “genetic
accident” that had occurred which caused
my CML. You will see 23 pairs of chromosomes,
represented by squares of two colors. The
red arrows point to chromosomes 9 and 22,
the two chromosomes that undergo a translocation,
and proceed to reproduce. In the past, CML
has been thought of as a disease with a poor
prognosis and limited treatment options.
The
second section shows some of the things I
carried and experienced in the first few
weeks after diagnosis. These include syringes,
gauze, a piece of my daughter’s childhood blanket,
as well as some of the words associated with CML,
such as “genetic accident”, “translocation”,
and “interferon-alpha”.
After awhile,
I entered into a time known as the “wilderness
of the soul” during which I mourned the loss
of my health, vitality, and future as I had envisioned
it. The contemplative angels are borrowed from
the work of William Blake, and reflect a sense
of tragedy, asking, “just what is
the meaning of this?”
The
next section uses a photo-transfer technique
to represent my treatment with Gleevec, a drug
that has been heralded as a major breakthrough
in cancer treatment. With Gleevec I would achieve
remission in a short amount of time, with very
few side effects. You may note that the copy
of the experimental drug bottle is signed
by Dr. Brian Druker. This
was a season of rejoicing for me and other
people with CML.
Many questions remain about
the long term benefits and possible resistance
to Gleevec, but as one of the pioneers
of treatment with this drug, I was given
some time with life, and this time became “hallowed”.
Finally, as a cancer survivor, I have a new found
ability to focus on the details of life, while
maintaining an eye to the distance with the assurance
that “all will be well’.
Shortly
after this quilt was completed, I began to
show signs of liver toxicity. Eventually, I
had to discontinue Gleevec altogether, and
considered options such as interferon and bone
marrow transplant. |
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In private collection
of Dr. Michael W. Schuster |
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PROFILE OF LEUKEMIA
20”x 28”,
machine pieced and hand quilted, embellished with
decorative thread and beads
Fall 2001
-following relapse-
A quilt entitled “Profile
of Leukemia” was created out of my astonishment
that I could look and feel just fine, while a potentially
fatal form of cancer lurked in my bone marrow. At
first glance, you see a bulb with well-established
roots, a graceful stem and a beautiful iris in full
bloom. But if you look carefully, you will see flames
of fire at the core of the bulb. The stem incorporates
phrases from a scientific article explaining how
some patients were becoming resistant to Gleevec.
Some of the flower petals are affected by the disease,
showing that they are of a “wild type”,
and have BCR-ABL”— a hallmark of CML. This
quilt now belongs to Dr. Schuster, who had frequently
admired it in my hospital room during my extended
stay for a bone marrow transplant. I promised him
that if I were cured, he would have it. He cured
me, and he now owns “Profile of Leukemia.
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ALL
WILL BE WELL
19”x13”,
machine pieced and hand quilted, with embellishments
Winter 2002
-all options exhausted except
for bone marrow transplant-
One of my quilts is featured on
the 2004 calendar for the Blood and Bone Marrow Transplant
Information Network (bmtinfonet). . I created “All
Will Be Well” after the infamous words of St.
Julian of Norwich. This quilt is of a gentle landscape
with a long view across the beauty of creation to
a place of peace and trust. I pictured myself with
the two angels in the foreground—just looking—not
anxious or worried. When I identified with the whole
of creation, my own existence became part of the
larger whole, rather than obsessing about things
over which I had no control. No matter the outcome,
I could go to a place of gentle observation with
this quilt when I began to really trust that “all
will be well”. |
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GOD
SUFFERS TOO
13”x19”,
machine pieced and hand quilted/embellished
Winter 2002
-waiting-
This quilt was created out of the
sadness that I felt as I prepared to leave my life,
as I had known it, to not just take, but to embrace
the risk of bone marrow transplant. The quilt began
as a peaceful, meandering path through a luscious
green valley. Of course I was thinking of Psalm 23
and the “Good Shepherd”. I knew I wanted
the path and journey to be one of calm resolution,
but when I envisioned the One who watches over all
of us, I was drawn to an image in deep mourning.
When I thought about what God might be experiencing
as his children suffer, I did not think of God as
a judge, or one who tests, or is impassive. I imagined
that God suffers too. Of all the quilts I have made,
this one means the most to me. When I was just barely
hanging on to life, I would look at God’s tears
and know that the God of all joy and creation, is
also the God of sorrow, and I was not alone. |
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UP
THE GOLDEN STAIR
13”x22”,
machine pieced and quilted
Spring 2002
I continued to think about the journey
of bone marrow transplant, the journey that would
lead me to cure. But I knew that it would be a perilous
journey, fraught with life threatening side effects.
I wanted to mark each part of the journey mindfully
and carefully. I created this technically challenging
quilt to climb the golden stair with fabric. |
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100 DAYS CALENDAR
29”x29”, made with hundreds of hand-dyed fabrics
Spring/Summer 2002
-preparing for transplant-
We made the decision in the spring of 2002 to take the risk of bone marrow transplant in fervent hope for the cure of CML. We tried to learn as much about the procedure as we could, and read David Biro’s book entitled “One Hundred Days”. The one-hundredth day after the stem cell transplant is an important milestone. Usually if something awful is going to happen, it does within 100 days of transplant. Once you make it to Day 100, chances are good that the transplant will continue to go well.
This quilt is a calendar of 100 squares, each one representing a day post transplant. I chose the colors randomly, and thought about the days to come as I pieced each square. The quilt was in my room at the hospital and, beginning on Day 1, we moved an angel pin to each successive day. At last we made it to Day 100 in October of 2002, relatively unscathed. |
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THREE NEUTROPHILS!
13”X 14”, machine pieced and hand quilted, embellished with beads
Winter 2003
- recovering-
This small piece is how I imagine a bulb to be that has been “conditioned” and prepared for new life. The roots are strong and viable, and there is the beginning of growth in the bulb’s center, but the bulb itself has been wiped out. This is what I think my bone marrow may have looked like when, after two weeks of waiting for engraftment, my nurse practitioner declared joyfully—“Three Neutrophils!” This was our first sign that my sister’s donor cells were taking up housekeeping in my bone marrow. |
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| Not for
Sale. Cards will be available in the future. |
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COLLAGE
DURING TRANSPLANT
10 x 13”, cardboard,
Japanese papers, stones, parchment, silk thread.
Summer 2002
-during transplant-
Before I was admitted for BMT, I had
all sorts of grand ideas about what I would do with
all my “free” time in the hospital. I brought
books to read, CDs to listen to, a quilt to sew, and
I even thought about bringing my sewing machine! I
had been warned by other survivors to not expect very
much in terms of energy, but I was pretty naïve.
I realized how “flattened out” I was when
I couldn’t even pick up a book or thread a needle.
An
art therapist, Daniela Mizrahi from The Creative Center: Arts for People with Cancer, made her gentle
rounds on the BMT unit every Friday. She admired my
quilts that I had hung up in the room—“Profile
of Leukemia”, “100 Days”, and “God
Suffers Too.” We talked about color and composition;
she brought art books she thought would interest me—books
about Japanese prints and collages. I did not have
the energy (or trust) to actually do any artwork until
about a month post transplant when she proposed that
we do a collage together.
When she came with her beautiful
and interesting array of papers and a piece of cardboard,
I told her I had been imagining new life forging its
way through my bones. By then it had looked like the
transplant had “taken”,
and I was beginning to generate my own white cells.
I made a very rough sketch of bones, and we each tore
pieces of paper and glued them on the cardboard, talking
quietly about how tenacious life can be. After she
left I continued to work, constructing a brick wall,
with the tentacles of a brand new plant, pushing its
way through the bones, through the bricks, to the light
of day.
I took “Bones” home with me uncompleted,
and it stayed that way for many months. I just couldn’t
finish it. Finally it occurred to me to call Daniella,
and I asked her if she would meet me when I came to
the hospital for an outpatient visit to look at it
with me. We sat together in the new BMT unit’s
family lounge, tearing paper, checking it out, gluing
it carefully, talking quietly about the tenacity of
new life.
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THE PERFECT IRIS
16 x 30”, machine pieced and
embellished by hand fabrics
Summer/Fall 2002
-anticipating cure-
I machine pieced “The Perfect Iris” in the spring of 2002 in preparation for my transplant. It shows a perfect bulb, perfect stem, and perfect flowers. There is no evidence of anything amiss anywhere—just as it would be for me after the transplant. A regimen of total body irradiation and chemotherapy would completely wipe out my bone marrow. An infusion of perfectly matched stem cells from my sister would be the beginning of disease-free bone marrow.
This quilt has more handwork in it than my other pieces because I embellished much of it while I was in the hospital over a two-month period. Over and over I would stitch the elaborate root system, praying that my sister’s cells would take root and flourish in the same manner. When Dr. Schuster declared me “cured” of leukemia, I gave myself permission to finish “A Perfect Iris.” |
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BMT
SURVIVOR’S BOX
13x16”, a shadow
box with images and
treasures from my transplant
Winter/Spring 2003
This box contains many of the images and “things
I carried” during my bone marrow transplant.
It began when I made a doll-sized hospital gown with
5 stars and several medals to represent what Dr. Schuster
had told me during my transplant—that I had earned
5, maybe even 6 stars, for bravery. Survivors have
come through a battle, a bit battered, but survivors
nonetheless. Then I began to add other images, like
a bulb with a flower made of 4 Gleevec capsules. The
phrases “waiting for the other shoe to drop”,
and “playing the card” are represented
here, as is a picture of my sister Cathy’s stem
cells ready for transplant. A storage box contains
many of the things a BMT patient must give up for awhile—crowds,
shoes, pets, fresh fruit and vegetables, hair, sense
of taste, plants, etc. I made a bandana out of the
one I wore when I lost my hair. In the upper left corner
is an image of death, which hung over my head, but
Dr. Schuster and his team pulled me through to safety.
I found it to be very cathartic to put all these potent
images together into a collage. |
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A
GENTLE PATH
13 x 19”, machine
pieced and hand quilted/embellished
Spring 2003
-who watches over you?-
In the months post transplant I continued
to identify with the quilt I had made in hope and despair, “God
Suffers Too”. But I did not want a mourning figure
to be the last word. I had thought that I would make
a new quilt with the same landscape, except that I
would put a celebratory figure in the foreground. The
figure would have arms uplifted, as if going over the
finish line. But when it came to actually designing
another perspective of the One who watches over us,
I could not continue. Instead, I left the space blank,
to be filled by the observer and his/her vision of
how God watches over those on the BMT journey. When
I look at this quilt, I envision a watchful shepherd;
some may see an angel in repose, or a warrior prepared
for battle. The idea is that God Himself does not change,
but out perceptions of God may evolve with our present
circumstances. |
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In private collection
of Cornell New York/Presbyterian Hospital |
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MEDALS
OF HONOR
26x26”, silk
fabrics, machine pieced, quilted and embellished by
hand
Summer 2003
-gift to BMT team at one-year anniversary-
This quilt was made upon the one-year
anniversary of my successful bone marrow transplant
in recognition of the heroism of the transplant team;
caregivers, families and friends of transplant patients.
Dr. Schuster told me that I had earned “5 stars” for
bravery during my transplant. I believe that the stars
belong not only to me as a patient, but also to everyone
that accompanied me on this difficult path to cure.
The
quilt consists of nine “medals” which
were foundation pieced with brightly colored silk fabrics
with various embellishments. The text on the center
square is a quote from the handbook given to patients
of Cornell-New York Presbyterian Hospital to prepare
them for transplant. It reads, “it is important
to remember that you are not alone, your team is available
to help you through what may be a difficult period.” The
text around the border lists categories of heroes,
including physicians, family, nurses, technicians,
friends, etc. |
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