Thursday, May 20, 2010

Decision Portraits

I first came across the work of quilt artist Susan Lenz-Dingman through another blogging needle friend and her sister, Wanda Lenz of Wanda's World (Wanda lives in Germany.)

She engages in many innovative and compelling techniques like her stained glass art series and her grave rubbing art quilts.

But it is her Decision Portraits series that captivates me the most.


Susan's intent is to portray important, everyday decisions. There is no judgment in her work, she merely wants to document the decision made. She uses a xylene transfer method on tea-stained muslin designed to give the quilt a newspaper look. The result shows a specific person but also suggests others in the same situation. Each work is suppose to be both individual and universal.

And I was blown away by how effective this artistic method is when I had a very strong personal and emotional response to this portrait...(read more about it here)


Many of you know that I lost my Mom to acute leukemia two years ago. She was 70 years old.

When I saw this portrait of this woman who had survived aggressive treatment, I was moved by her story and delighted for her outcome.

But I found myself scrolling down through all of the other portraits, searching for the alternate decision...for the person who either chose aggressive treatment and died because of it or for the person who refused further treatment and let life takes its own course.

I didn't see either one. So I contacted Susan and asked her if she would be interested in stitching a portrait of someone who refused further treatment.

You see, my mother went through two 6-week in-hospital stays -- with only a one week break in between-- on the Hepa Filter unit for leukemia patients at the Sidney Kimmel Cancer Center at Johns Hopkins Hospital. My mother's diagnosis was very dire. She had about one year to live with a 50% chance of extending her life if she chose to participate in a clinical trial that gave her the best chance for remission.

At first, her answer was "ok. yes, of course" because the diagnosis was new to her, she hadn't had time to process what it all meant and, of course, she wanted to live...to live to see her granddaughters and grandson grow up...to still be part of her family.

During the first six weeks of treatment, they used chemotherapy to kill off all of the bad cells and the good cells within her bone marrow...and then we waited for her good cells to begin to grow back. It was miserable for her. After all, it had had only been one week from the time of her initial diagnosis at her annual doctor's check-up in Florida to her first inpatient stay at Hopkins. And then she was almost killed by the aggressive treatment...weakened, loss of sleep, sick, loss of appetite, loss of hair...misery.

Because of the lack of white blood cells, she was totally at risk for infections and had to be in completely sterile environment throughout the course of her treatment. Which meant she had limited visitors and was unable to see her friends or grandchildren.

When she began to feel better, they told her she could go home for a week but that she had to come back again for another six weeks of treatment. She groaned. She wept. She left the hospital and went back to Florida...got her affairs in order...had a week of freedom. And then returned to the hospital, where she was almost killed for the second time.

By the end of the grueling 12 weeks, I think she would have pulled out her own hair if she had had any. She was released from the hospital, and only had to come back for transfusions and weekly blood tests to see if the leukemia had returned. She had a great Summer and we partied at the beach where she celebrated her 70th birthday and 50th wedding anniversary. It was possible to be in remission for a year and we were hopeful.


In the end she wasn't that lucky. Her leukemia levels returned in October and her doctor prepared the admission papers for another round of chemotherapy and torture. And my mother said No.

I'll never forget that day. My Mom's doctor was a wonderfully energetic and accomplished leukemia expert named Judith Karp...and she was almost the same age as Mom. They had a good relationship because Dr. Karp could relate to my mom's strong-willed nature and her hatred for a clinical environment that removed her self-control.

So, there we were in for a routine visit and Dr. Karp was busily writing her orders and clinical notes. Head down, her eyeglasses perched on the tip of her nose...ready to admit my mother for her Round 2 and Mom said No.

Dr. Karp stopped what she was doing, dropped her pen, pulled her glasses off of her nose, turned, looked my mother straight in the eyes and said, "no...Are you sure?" I got the impression that she didn't hear this every day. This No.

And my mother, with moist but determined eyes, said Yes. And my father and I slowly watched the scene as tears puddled in our own eyes.

And Dr. Karp said. "You, my dear, are a very brave woman."


When we left that day, Dr. Karp gave my mom a long, meaning-filled hug. She kissed her on the cheek and said, "You've got guts". Mom laughed and thanked her for all she'd done. We left the office and we didn't see Dr. Karp again though she did oversee Mom's care when she was on hospice.

My mother had about six more months to live; four of them good. To be in the home that she loved, surrounded by her family and by the life that she had built for herself. The last two months were harder, but I was proud of her.

Proud that she chose to die at home rather than die in the hospital like so many others do. She was brave to refuse further treatment. It's not a choice that many people can make. And it's one of the most difficult.

For 10 years, I was lucky to work as an administrator with some of the country's best geriatricians providing health care to senior citizens. And I applaud them for the work they do in explaining the unbelievable risks that seniors undertake when choosing to aggressively treat diseases. I admire geriatricians because they get patients to think about their own death and how they'd like it to go.

Death is never pretty. But there is a way to do it more gracefully. I think my Mother found that grace and she died in her own way, the way she lived her life.

I am delighted that, after getting permission from my Dad, Susan will be stitching Mom's decision...Refused Further Treatment.

Susan is on a short time frame as she prepares for a solo exhibition (Sept. 10-October) at the City Gallery at Waterfront Park in Charleston. It will spotlight her Decision Portrait Series during the MOJA 2010 Festival. And she still needs more portraits. You can see the list of desired portraits here on her blog and here's what she wrote to me just yesterday...

"There are still lots of portraits on the list, but the ones I'm most interested in are Divorced with stitched words reading Irreconcilable Differences; State of the Economy with stitched words reading I never thought I'd accept food stamps; and any of the ones about "aging" and/or "beauty"....like tanning regularly, having cosmetic surgery, taking Viagra or Botox, etc. "

If you're interested, you can email Susan here. She needs a signed release form and a high-resolution image (the higher, the better) and she needs to finalize everything no later than mid-June.

Thanks for listening to my story and I'll update you here when Susan has finished Mom's portrait. I sent her the picture you just saw above.

27 comments:

Carol said...

I was reading Susan's blog the other day. How funny that we both landed there approximately at the same time.

Your mother was so beautiful. Her story is perfect for the portrait project.

I read all of your commentary, but I kept thinking of how your mother must have felt. How hard it must have been for her to make that decision, knowing how painful it would be for her family. I would guess that it would have been painful for her to watch her family while she lived through the pain and discomfort of the treatment.

I have a sense that your mother was a kind, considerate, loving and beautiful giving person. I have a sense that when she made that decision, she felt that she had lived a full live, and felt the love of those she loved. I sense that she felt this life was over and she felt peaceful with her decision...that she was ready to find whatever is in the light.

I can't believe the feelings that came over me when I saw your mom's picture. Seeing it before I ever read any of your commentary, I felt a very deep sense of peace.

Very Much Love to You Susan,
Carol

Jane said...

I sent in my picture to Susan a couple of weeks ago: "I chose a lumpectomy." I was so furtunate that my treatment worked. I'm sure you miss your mom, but I think she was brave.
Jane

Denise Felton said...

I love Susan's Decision Portrait series, too. I look forward to each new posted work, even the ones that I find personally painful. I am so glad you approached her about including your mom and her decision in the series. I know it will touch so many people.

And thank you for sharing photos of your mom. She was so lovely.

Vicki W said...

Your Mom knew the value of time and family and she deserves to have this beautiful portrait done! The mother of a friend recently died of ovarian cancer. She chose no treatment and was gone in 4 months but she lived those 4 months exactly like she wanted in her home. It was beautiful.

MosaicMagpie said...

What a story you have told here. Your mother was not only brave she was an example to you and others that were lucky enough to have known her. Such a tribute to have Susan do this portrait for you. I recently lost a friend to Breast Cancer and she too said No. I made a doll as a tribute to her for a Relay for Life auction. The doll can be seen on my blog. Your story touched my heart, brought a tear to my eye and I thank you.

Debbie

Missy Ann said...

*sob*

I've told my husband that this is the choice I would make. The choice I think I would make. The choice I hope I'm brave enough to make it the time comes.

Thank you so much for sharing your Mom's story.

Catherine said...

What a project!!

Your mother was a beautiful and brave woman. Thank you for sharing her story.

Loralynn said...

Your story really touches home for me. My Step-Sister is fighting breast cancer that has moved into her organs and bones. Cancer is such an ugly thing to touch our lives and your Mother did it with grace. The picture you sent will make a fitting tribute to her. She was a lovely woman. I truely believe that the eyes are a window on the soul and her eyes show strength, intelligence and resolve. I look forward to seeing her finished portrait.

Nellie's Needles said...

I saw the first ones in this series when Susan had the CyberFyber exhibition. It's a powerful project and the addition of your mother's decision will add a even more.

Thank you for sharing your and her story.

flyingbeader said...

Once again, Susan you brought such a rush of emotions to me through your story of your Mom & her refusal of treatment. I guess it just brought back to me the story of my Father. He didn't have enough time...soon I want to be brave to write about him. Thank you for sharing.
dot

MosaicMagpie said...

Susan, I was so touched by your blog post today. I blogged about your blog and sent my readers your way. I am new to blogging and hope this is okay to do. If not let me know and I will take the post off.
Thanks, Debbie

Judy S. said...

What a wonderful tribute to your mom, Susan. That same light of courage and kindness shines from your eyes too. Thanks for sharing your touching story. Hugs too.

Front Range Stitcher said...

Some day, and if there is still room left on the Internet, I'm going to make a list of things I've learned from or pondered about reading your blog. It's more than reading, it's an exchange of the familiar articulated so well making it easy for all to comprehend and feel.

I didn't know about Decision Portraits and recognize it as being nothing short of genius. Yet so simply human.

But the greatest treasure from visiting your blog today was the new found insight gained by viewing the family portrait. There's so much about a person divulged in a family portrait. Who looks alike, who doesn't; who is older; who is open who is closed; nice, generous, happy and in your case where did this amazing spirit spring from.

I am so touched by your mom's final story and will always be reminded that dignity can be possible in all stages of life. Thank you Susan for sharing her images; I find great comfort by understanding that the human shell was never meant to endure all things physical; but the human spirit, now that is a different story.

Elmsley Rose said...

I have tears running down my face, and my carer is due in 3 minutes.

Seahorse Ranch Girl said...

I have had 2 people in my life go through something similar to what your mom went through. The first was a 45 year old gal, full of life and a fighter. The cell-killing phase was the end for her, but she was willing to risk it all for a chance to live. The second was my dad, at 73, with a rare and swift cancer. One round of chemo sent him reeling. After months of recovery, he had just begun to gain some strength, when the cancer took him; 8 months from diagnosis to death. The joy in your mom's eyes and smile could light any life.

Susan said...
This comment has been removed by the author.
Susan said...

Hi!
I just returned from a day working in Charleston which was planned in order for me to attend an art exhibition opening at City Gallery at Waterfront Park. I don't really know anyone in the Charleston art scene. Most of my evening was spent on the second floor walkways, looking down through the incredible space to the floor below and watching people mingle, look at art, and in planning. I mentally thought of which portraits will hang on which walls. I imagined the groupings of Decision Portraits. I thought about the lighting and the best heights for the work to hang. I examined the labels, the fonts on the labels, and the pedestals for additional information. I visualized the distance between the portraits and the other work I will be displaying. Mostly, I thought about the stack of work waiting for me to stitch....including your mother's portrait. Then, I drove the 110 miles back home and read your lovely blog post. I must say that I'm totally energized, ready for the weekend which starts at 5 PM tomorrow....ready to stitch until late Sunday night and then every weekday after 5 PM. Thank you so much for sharing my work with others and especially for sharing your mother's decision through my series and stitches.
Susan Lenz

coral-seas said...

Dear Susan. Thank you for trusting us with this very touching account of your mother's decision. It must have been very painful for you. I have been following Susan's blog for a few months. I know that she will do justice to the beautiful portrait of your mother that you have submitted. I hope she knows about the blue and can find room for some Grammy Aqua on her portrait.

You and you dad made a brave decision to do this; I think it will help your healing.

Gerry Krueger said...

How you must miss your mother and cherish the memories... Not only was she brave and strong she was an incredoble beauty. As I looked at your family portrait it looked as if there is a legion of young women to look to her as an example of strength.... I have a cock pheasant stutting around this morning... Jack must feel like that amid all those lovely girls...

Hugs Ger

Allison Ann Aller said...

You all are giving a rare gift with this accounting and undertaking...thank you, Susan....

Marty52 said...

Aahhh, Susan, I'm sitting here at work with tears in my eyes. You have such a way with words, sweetie. The Dr was right, you're mother was a brave woman, and so are you. It's such a beautiful photo and the portrait will be a treasure. Thanks for this.

An Innocent Abroad, Part Deux said...

Thank you for sharing something so personal, yet so universal. Your mother was a beautiful woman, and you can just see her glowing as she is surrounded by all her loving family.

And what an interesting project Susan is doing. Life as art, art as life, it's all interwoven.

Hugs,
Susan

Evelyn and Lise said...

Thank you for sharing your mom's story with us. I have just come back today from Edmonton, AB. My dear and close cousin passed away last week from bone and lung cancer.We also have been following her story since February, when she found out that she had cancer. It's been a very hard time for all of us who loved her but it's also been a time to really come close together as a family and be more loving to each other. She was a brave lady and will be missed. Lise

Ingrid Mida said...

What an incredibly strong person your mother was! Her beauty and grace is in her eyes and lives on in your heart.
Thank you for sharing her story. I admire both you and your mother for your beauty and courage.

Sew Create It - Jane said...

Thank you for sharing your mother's powerful story...it is a beautiful tribute.

Faith said...

Reading this brought tears to my eyes. Your mom looks like a wonderful lady, beautiful inside and out. I've been watching these portraits as Susan has posted them and will look for your mom.

Barbara C said...

The portrait will be a wonderful tribute to your mom, and your account of her illness and death is a powerful tribute to her as well. Thanks for sharing this important but difficult story. We should all be so lucky as to witness someone we love confront death with such strength and such grace. A big hug to you Susan.

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