December 1, 2010

Lifestyles

A Vision To Quilt
by Linda Hixon

Terror.

That is one word that friends would never have expected to hear coming out of V Kingsley’s mouth. V, which is her entire name, does not terrify easily, at least to outside eyes. A vibrant personality with red hair, decked out in a leather biker jacket and go-go boots, V lives a full life. She is a single mother who supports herself and her young son as a quilter and overcomes her struggles with love and laughter.

That is, until she started to go blind -- a devastating fate for an artist and avid quilter.

But V’s story begins in a very visual, colorful world. Born of New England Yankee and Scottish heritage, she learned at the knees of two grandmothers to work with what she had. “I realized that just feeling the fabric of a quilt was a sensory experience, and by using fabric from real life a quilt would become infused with meaning.”

V’s quilting road took a lot of turns along the way. She studied art in college, and began a career in the theater, working as a property master and set designer. She was first introduced to a commercial sewing machine while trying to sew Venetian blinds from yards of chiffon to grace the back of the stage at the American Repertory Theater. “Here was a girl who was used to hand sewing in cotton. I was totally out of my league. But I did it.”

The experience renewed her interest in her childhood love of textile arts. Embroidering since she was eight, V picked up needle and thread and began the first square of a crazy quilt in her early 20s. The quilt would take years to finish, but the rebellious adolescent was coming home to her fiber roots. “There are so many stories in those squares,” she says.

Each square was hand pieced, and the names and birthdates of all the women in her family were included in the project. Each panel marks a milestone in her life, a way of processing the good and bad as each moment passed. One square marks the violent, untimely death of her mother, and is made from her old clothing and buttons. Another square shows the growth of V’s son as he emerges from crawling baby to walking toddler. Another commemorates the celebration of the passing of the millennium, and two squares represent the tragedy of 9/11. Sewn in mourning colors of blacks and grays and deep purples, embroidered towers are engulfed in smoke, and a tiny embroidered dump truck removes debris from the site.

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While living in this colorful and creative visual world, as her career as a professional quilter was taking off, V began to lose her sight. It was 2003 and she was only 37.

Her body seemed to be falling apart. Her mouth began to fill with painful lesions. She couldn’t eat, for months subsisting on smoothies and losing pound after pound, eventually dropping almost 60 pounds. The skin cells in her eyes disintegrated and her world became a hazy imitation of its previous vibrancy. The doctors were stumped, tossing around various diagnoses. It wasn’t until after her eighth hospitalization that a name could be put to her illness: cancer. There was a lymphoma the size of two bricks growing in her abdomen. However, cancer did not explain the mouth sores or her failing eyesight. Her body was allergic to the cancer and her own immune system was attacking her. She was suffering from Paraneoplastic Pemphigus (PNP), a rare and mostly fatal autoimmune disease, one that destroys the body's own cells. And since her cancer was inoperable, there was little the doctors could do to stop the destruction the PNP was causing.

“We almost rejoiced when we got the news it was cancer because at least we knew what it was. I didn’t have to lay down and die just because they said I was. I had something to rail against.”

Chemotherapy treatment was used to fight the cancer. The PNP was another matter. Immune suppressant drugs didn’t help and only left V vulnerable to infection and fighting for her life. A blood clot and massive infection invaded her lungs, and doctors told her she had three days to live.

V wasn’t ready to give up. She removed herself from all the antibiotics and left the hospital against medical advice. She decided to trust her body. She went home, wrapped herself in a quilt and prepared herself and her family for the worst. Her son, Parker, had just turned seven.

“Every time I said goodnight to him I had to say goodbye. I didn’t know if I would see him again,” V poignantly recalls. She filled out enough birthday cards so Parker would have one from his mother each year until he was 21.

"My battle cry was Remission or Release. And it didn’t look like remission was going to happen for me, so I just wanted release. It was a moral, ethical choice that I was making, to let the chips fall where they may."

And after three days, the chips fell on the side of life, not death. V's body began to rally. Over a year into her ordeal, the cancer began to respond to the chemo. Her online journal, started during the darkest days of her illness to keep her network of friends up-to-date on her struggles, is full of small victories: a day of being able to eat some real food, the kindness of hospital staff during a procedure. The doctors began using intravenous immunoglobulin (IVIG), a process that became a lifeline. Yet each treatment was costing almost $10,000 and the insurance wouldn’t cover it all.

So V began to quilt.

She started a yo-yo quilt, picking from her vintage fabric and hand piecing hundreds of bits of cloth to create the piece. Friends and family from across the country sold “tickets” to acquaintances and strangers, and even her father found buyers in foreign ports of call. V enlisted the help of the Unbound Quilters, a local group, to help with the finishing work when she was too sick to bring needle to cloth. The effort raised almost enough money to pay the bills for that first year.

In the midst of these triumphs, V’s eyesight continued to fail. No longer able to drive, read, help her son with homework or even care for her own needs, V reluctantly began “white cane training” in an effort to prepare herself to live as a blind woman.

“The word I have to use to describe losing my sight is terror,” she said. “I didn’t know what I was going to be able to do since my skill set was visual arts, especially quilting. I was not only losing my health and my sight, but I was losing my livelihood.”

V was declared legally blind by the end of 2004. Doctors tried to convince her to allow her eyelids to be sewn shut, a terrible option for a quilter, but one that would have alleviated the tremendous pain of the air crossing her eyes. V, hoping for a final miracle, spoke to a doctor at Stanford who had heard about the Boston Foundation for Sight. The foundation uses grants to help restore the sight of people with damaged or diseased corneas. Skymiles were even donated so V could fly east to have her Boston Scleral Lenses implanted and regain her sight.

“The process was so painful, but it really was miraculous,” she recalls. “Everything was in Technicolor!” But the process has not been without problems. The implants, which are like huge contact lenses the size of quarters, require constant care. “Now I have about 15 hours of pain free time with the prosthetics. It's not perfect. When I take the prosthetics out to clean them or at night, I am graced to be back in pain, reminding me of what life could be like.” She also has to tip a bottle of eyewash up to her eyes every 15 minutes of the day to restore the natural moisture most of us take for granted.

“I started right away on my sewing machine. I was still really quite sick, but I was able to see so I started creating.”

V still quilts on commission. Many of her new pieces are vibrant colors, the hand and machine embroidered embellishments are delicate and invite close scrutiny. Eyes appear in several of her pieces.

“Eye Can See” was created for the Boston Foundation for Sight and its founder, Dr. Perry Rosenthal. A large eye is graced with delicate eyelashes, hand and machine embroidered and embellished with her grandmother’s antique lace and buttons from her grandfather’s work shirts. She embroidered “Merci,” French for “Thank You” on the piece, but found a correlation to that word with the word “mercy,” something she feels she received from the staff at the Foundation. “I wanted to show my excitement at being able to see again,” she wrote about the piece on her web site. The dedication on the quilt reads, “with undying gratitude of a quilter emerged from darkness.”

V believes she is the only known person with non-operable lymphoma to have survived PNP more than two years. It is normally a death sentence. In her online journal, she writes,

“I am who I am as a direct result of the sum total of my experiences. I would not take any one of them away. I am driven to share what I can see, which is still very hard for me. I don’t know many quilters who have had the blessing I have, to go through the process of becoming blind and then to get to see again."
She continues to quilt and she continues to let her quilts go to others who can enjoy them.

"I was blind, but now I see." The lyrics of the beautiful old hymn "Amazing Grace" not only describe V Kingsley's experience and how she dealt with it, but also her miracle.

Linda Hixon is a former newspaper reporter, disc jockey, and radio news reader and writer. A textile artist and photographer, she recently returned to New England to pursue a legal career. Linda can be reached via e-mail.