A MEDICAL PROBLEM THAT WON’T GO AWAY

Posted By on February 1, 2016

 Robert—our daughter Stacy’s husbandand I were standing quietly outside the double doors that led to the medical center’s intensive care unit (ICU). It was early in the morning and Stacy was inside the unit on a respirator. The doors were closed. We had been asked to leave while the nurses took care of the patients.

A group of white-jacketed residents were walking down the long hallway toward us. Someone in that crowd had told a joke and they started laughing. As they came closer the bantering back and forth grew louder. A few of the residents glanced at Robert and me as they passed by but that didn’t stop their noisy voices. Finally, the ICU’s doors opened and then closed behind them.

Robert and I looked at each other. What was wrong with them? How could young doctors, moving into their shift in the ICU, be so thoughtless? They saw us standing next to the doors and must have known we had someone in ICU, someone we loved. And then I heard Robert say, “I hate those guys.” I knew just what he meant.

Stacy, suffering from breast cancer, had recurred more and more often during the course of her illness and was at the medical center for the last time with fluid in her lungs. Over the five days, when she had been rushed into the ICU, my husband Ed, Robert and I slept on the floor of the waiting room. There were no beds or lounge chairs available but several of the nurses had given us pillows and blankets. We thanked them but it didn’t matter to us. We rarely slept those five nights anyway.

We lost Stacy on day six.

A year or so later, Ed and I were invited to the medical center to talk about some of our experiences. Once in the conference room, we took our seats along with some other folks there for the same reason and, when the moderator turned to us, I spoke about them . . . that group of shrill residents making their rounds that night.

After the meeting and just before Ed and I were leaving the hospital for home, I saw the residents milling about outside the room. I walked over, planning on saying something that would, hopefully, take the sting out of my words. I got as far as “Hi–”, when one of the residents said to me without any preamble, “You know, we work very hard and have a lot of medical expectations to live up to. We need fun where we can get it.” I looked at him and then I walked away. There was no sense in starting an argument I couldn’t win. After all, I was merely a patient’s mother.

But I am also a medical sociologist and believe that doctors of all specialties have a responsibility to their patients, clinical as well as emotional. If a patient is unresponsive, as was our daughter, that responsibility should be transferred to the proxy, i.e., a family member, a close friend or a social worker.

I also know that, personally and professionally, all doctors are different in knowledge and in communicative expertise. They are human beings and have the same failings that many of us have. I know that.

But . . . there is research that points to an ongoing and long-established problem.

For example, an older study regarding medical malpractice and published in 1975 by David Mechanic, Director of the Center for Medical Sociology and Health Services Research, University of Wisconsin, suggested those deeper issues. Based on 1,017 interviews, he found a subgroup that reported doctors maintained poor doctor-patient relationships [because] . . . “they are too interested in money, they are less accommodating and more difficult to reach, and they are more impersonal or inconsiderate.” Later studies, from 2007 on, about the doctor-patient relationship found that in a number of cases they [doctors] lacked warmth and friendliness as well as an inability to bother with the patient’s concerns and expectations.

In addition, two recent books, with titles that tell clearly of this concern stand out: Treating the Ailing Doctor-Patient Relationship (2014) and Putting Humanity and the Humanities Back Into Medicine (2015).

And most telling, in the January 7, 2016 New York Times, in a review of the book When Breath Becomes Air the author, 37-year-old neurosurgeon Paul Kalanithi, was quoted as saying, “  . . .  when the oncologist is away, he [Dr. Kalanithi] is treated as a problem and not a patient by an inexpert medical resident . . . .” At the time, Dr. Kalanithi was fatally ill with metastatic lung cancer.

With all the interest today in health issues by patients and their families many of these problems should have disappeared. Yet that’s not the case. The medical residents and their behavior that December night in front of my son-in-law and me falls right in the middle of this area.

Relational interaction with the patient is an integral part of a doctor’s job. And doctors, to be adequately trained, require a holistic medical education that goes beyond knowledge of clinical terms, illness symptoms, diagnoses and treatment. The interaction between doctor and patient is key. Nevertheless, it is left out more times than not.

Most medical students can and do receive early training in their medical school curriculum regarding doctor-patient relationships. Some researchers find, however, that while these young students are patient-centered in their outlook, when they move forward in their medical career they become less so. By the fourth year, they have become ” . . . more doctor-centered or paternalistic.” In other words, getting to know their patients becomes less of an issue. Science is foremost, I know, but the humanistic part of medicine is fundamental as well.

Since patients now have access to the internet and the relevant knowledge gleaned from that entity what, I still wonder, fosters medical student and doctor attitudes, both good and bad, toward their patients? I believe that it is imperative to find out.

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For full transparency: Suzann B. Goldstein was a PhD student at Rutgers, The State University of New Jersey. Her dissertation topic: Doctor-Patient-Proxy Relationships!

 
Editor: Edwin C. Goldstein

INFORMED CONSENT AND CANCER: The Contrast Between Henrietta Lacks and McKenna Wetzel

Posted By on December 14, 2015

A few weeks after I finished reading The Immortal Life of Henrietta Lacks, a 2010 biography by Rebecca Skloot, an article in the Newark Star-Ledger popped into my head. The article, about McKenna Claire Wetzel, and written by Sandy Kleffman in 2012, was headlined Killer Cells donated to find a cure for other youngsters. I saw a connection.

Henrietta Lacks, a 31-year-old African-American woman, died on October 4, 1951 after a documented eight months of a very aggressive, terribly painful cervical cancer. She was treated in the segregated ‘colored’ ward at Johns Hopkins Hospital in Baltimore, Maryland—the colored wards opened at Johns Hopkins in 1894 and were desegregated sometime after Henrietta died.

Henrietta’s cancer cells as well as some healthy cells were removed during a biopsy and cultured without her permission or her family’s. Dr. George Gey, the scientist at Johns Hopkins who was given the tissue samples, isolated a specific cell, named it HeLa after Henrietta’s first and last name and watched with amazement as the first human cells to grow outside the body proliferated endlessly. He made no money from the cells but shared the discovery with researchers who uncovered new scientific information that was related to, among other things, the first polio vaccine, cancer, aging, mosquito mating and an experimental launch into space.

Quickly commercialized and generating profits in the millions, the HeLa cell line benefited everyone who has ever swallowed anything more potent than an aspirin. Because there was no informed consent in 1951, Henrietta’s family knew nothing about the cells’ fame until 1973.

Important stuff? Certainly.

Years later, in August 2013, the Lacks family and the National Institutes of Health came to an agreement: a promise of acknowledgment wherever the HeLa cells were used in scientific papers as well as the appointment of two family members to serve on a six-member committee to regulate access to DNA code. Finally, after all those years, that raw issue seems to be resolved.

I know much less about little McKenna Wetzel. She was very young and therefore without a biography of note. All I know is that she loved soccer and was a bright, energetic and happy child. Her parents loved her dearly.

According to the Star-Ledger article and my own research, McKenna was seven years old when she was diagnosed with a diffuse intrinsic pontine glioma (DIPG), a particularly virulent and aggressive cancer that embeds in the brain stem. It is the second most common malignant brain tumor in school age children. Roughly four hundred cases of DIPG are diagnosed annually and almost all are fatal.

In 2011, six months after her initial diagnosis and two weeks shy of her eighth birthday, McKenna Claire Wetzel died. Shortly before her death and based on a kind neighbor’s suggestion, Dave and Kristine Wetzel made the decision—not the doctors!—to donate their daughter’s cells to Stanford University for research purposes. That caught my eye.

Although Henrietta’s cells were commonly used around the globe and in scientific papers published daily, McKenna’s donated cells were still only one of four that produced cell lines. As of this writing the investigators’ progress on mice creating DIPG-like tumors at some two dozen institutions had not yet been published.

And that brings up the issue of exactly what information is given to the patient. While not law, patient confidentiality and the Hippocratic Oath have been around since the late 400’s BCE. Patient-doctor relationships are sacrosanct. As they should be.

Informed consent is also not law. It is also not clearly understood.

Today, most institutions ask permission before surgery or any other procedure no matter how minor. The patient is given a form to sign that usually includes a line or more stating that any tissue removed may be used for “…education or research.” The Wetzels probably signed the form. Most of us have done the same.

John Moore signed it too. A plaintiff in an historic property rights battle, he was diagnosed with hairy cell leukemia in 1976. He signed an informed consent form for his surgery but eventually sued believing his doctor lied to him. He lost the case—in 1990, the Supreme Court of California ruled that a person’s discarded tissue and cells are not their property and can be commercialized. Moore appealed. The Court reversed, deciding that informed consent was inadequate because “ . . .  a reasonable patient would want to know that [his/her] physician’s professional judgment might be impaired by [his/her] independent economic interest.”

And so, new laws are created and old ones change. In this case, a controversy developed because storing blood and tissues for research does not legally require informed consent. Why not?

I believe in research and education, and I believe in the truth. One of Hippocrates’ lines—to “Calmly and adroitly conceal most things from the patients,” in general has become outdated. Physicians should tell the truth and they should do it in kindly fashion. (With emphasis on kindly!).

Truth is law, law is truth.

While not helpful for the Lacks family in 1951, today The Henrietta Lacks Foundation, founded by author Rebecca Skloot, helps to provide scholarship funds and health insurance to Henrietta’s descendants. The Foundation also benefits needy individuals who have made important contributions to scientific research, particularly those used without their knowledge or consent.

The McKenna Claire Wetzel Foundation raises funds for pediatric brain cancer and for researchers working in the field.

Both foundations are badly needed and both will someday help us find the truth.

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Editor: Edwin C. Goldstein

The Foundations

www.henriettalacksfoundation.org/

Henrietta Lacks had, in fact, a malignant adenocarcinoma, a specific type of cervical cancer, mistakenly diagnosed and discovered in 1970. In 1951 the treatment would have been the same.

www.mckennaclairefoundation.org/

In general, 1,658,370 new cancer cases are expected to be diagnosed in 2015. About 589,430 Americans are expected to die of cancer, or about 1,620 people per day. While billions are allocated to the research and fighting of cancer far more money is spent elsewhere.

To find out the various types of cancer that children are diagnosed with, please go to www.thevaleriefund.org . 

My next post will be on February 1, 2016. Happy New Year!


Editor: Edwin C. Goldstein

CANCER: Emperor of All Maladies

Posted By on November 15, 2015

crab

How many of you saw the television version of Cancer: Emperor of All Maladies? Hmmm. Well, let me tell those of you who didn’t see the documentary just a bit about it.

As you might know, both Valerie and Stacy, our only children, were caught in the web of cancer. Valerie was diagnosed with Ewing’s sarcoma, a bone cancer, at three and gone from us in 1976 at nine. Thirteen years after Valerie’s death, our surviving child, Stacy, at 25, was diagnosed with breast cancer and lost to us in 2001 when she was 37.

So, needless to say, I take umbrage with cancer.

But this post is not about our girls’ cancer at the time. It is about cancer over time.

And that brings us to Cancer: Emperor of All Maladies and the three-night special on PBS. The documentary, based on the Pulitzer prize-winning book by Mukherjee, an oncologist, researcher and author, was produced by Ken Burns, directed by Barak Goodman and shown on PBS from 3/30/2015 to 4/1/2015.

The film describes cancer from its very beginnings, around 400 BC, when the Greek word for the disease first arose: Karkinos, or crab.

Some have said the book is too long (it’s 470 pages plus acknowledgements, notes, glossary, photograph credits, selected bibliography and index!). It is long but it’s also very good and I liked it somewhat better than the film. Unlike an academic textbook, the language is clear and easily absorbed. It explains cancer through the doctors who worked in the field, from then to now, along with the accompanying research, the devastating failures and the remarkable breakthroughs. Interspersed throughout are the patients’ stories.

In 1898, for example, surgeons performed a distinctive type of radical breast cancer surgery: they cut deep into the chest, removed lymph nodes and enough other tissue so that the shoulder caved in making it impossible to move the arm forward or sideways. The process was terribly painful, miserably disfiguring and often fatal.

Over time, however, we’ve seen the changes. One specific development took place with the discovery of the gene Her-2 in a small subset of breast cancer. Soon after the discovery of Her-2 came the targeted drug Herceptin along with its ability to kill cancer cells. And that opened up the path to further achievement and successes for other types of breast cancer. Today, there is surgery, radiation, chemotherapy, hormonal therapy and various targeted therapies. Individually or in combination, they are likely to increase a person’s survival rate from approximately 17 to 30 years.

For childhood cancers, the survival rate has increased as well. There is now an over 80% chance of cure for ALL (acute lymphoblastic leukemia), Hodgkin’s disease and some large-cell aggressive lymphomas.

Progress has, indeed, been made.

Yet Mukherjee writes that this monstrous disease might be impossible to permanently erradicate since cancer has the ability for endless cell division. We know that cancer travels throughout the body; it assaults the various organs, damages the tissues and flouts countless drugs.

Still, toward the end of his last chapter Mukherjee gives us a credible way to look at this ancient adversary. He writes that cancer might not be cured but, instead, would be constrained by longer and longer remissions, through “treatment, resistance, recurrence and more treatment” (Mukherjee, 462). This would represent a different kind of win. No longer would it be an early death but instead a prolongation of life: in other words, death as it should be, in old age.

But let’s go further. It’s also possible that the scenario Mukherjee finally proposes is not quite right. After all, he’s talking about the future and we all know how the future changes with each passing year, or month or even a day. Today, we have in our labs (www.cinj.org/treatment/breast_oncology.html) a process which drills down to the tiniest details of molecular and genomic information personalized to each patient: it’s called precision medicine. So, perhaps there is a cure for cancer. I certainly want to believe that. Wouldn’t you?

I’m not fussy, though. I’ll take it either way, whether it’s Mukherjee’s reflections or my hopes.

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Editor: Edwin C. Goldstein

UNEXPECTED LIVES

Posted By on October 15, 2015

Hi Everyone:

It’s time for me to start blogging again and I am thrilled! Writing activates the mind, creates discipline and promotes happiness (I did read that somewhere.).

But first, since playing catch-up is a requirement, I’ll start with . . .

My memoir: finishing it was critical during the time away from you. I wrote and wrote and wrote and finally came up with my fourth draft and the new title, WHY US? One Mother’s Story. It is now spiraling through the ether searching for an agent.

If you’ve read About The Author, you’ll know that my husband Ed and I lost our only two children to cancer: Valerie, diagnosed with bone cancer at three and gone at nine and Stacy, diagnosed with breast cancer at 25 and gone at 37.

WHY US? One Mother’s Story begins with Valerie’s story, goes on to our establishment of The Valerie Fund, an organization that supports the comprehensive health care of children with cancer and blood disorders and then continues with Stacy’s story.

Side by side but hidden within the stories’ narrative about the girls is the bounce that Ed and I managed to develop over time, the bounce that is best described by a tennis ball that’s been used too often. The color has faded, the fluffy felt has worn off and, if you look closely, the ball is misshapen. It has changed yet it still bounces. So yes, we bounce but perhaps not as high.

The above is an abstract of my memoir. You’ll have to read the rest when I get an agent and he or she finds a publisher for the book—by the way, anyone out there know of a good agent? Any agent?

Ed and I moved forward, once more, after we lost our second child, Stacy. The Stacy Goldstein Symposium on Breast Cancer took place on a day in October 2004. Dr. Susan M. Love was our keynote speaker for the symposium. Two Stacy Goldstein fellowships were awarded in 2006 to two medical scientists at the Rutgers Cancer Institute of New Jersey. And when we were comfortable with that, the establishment of the Stacy Goldstein Breast Cancer Center at the Rutgers Cancer Institute of New Jersey for patient care and research; that took place three years later in June 2009.

Under the circumstances, I don’t think any of you will be surprised, if you read from time to time blog posts connected to cancer, blood disorders or other related health problems. But first, a little light in the day.

To that end, we go to the post . . .

 BETTER THAN COOKING!

depositphotos_26661991-Art-white-wine-on-the-summer-sea-background[1]

And so I’m telling you, people, I’m not cooking again. Do you feel the same? No more cooking? Ever? Well then, please join me in a glass of wine.

To be fully transparent, I do cook. Occasionally. When I feel like it. The last time was for the first night’s Seder of Passover 2013 (the holiday commemorates the liberation of the Israelites from Egyptian slavery.). I had 26 family members and friends that night. Half-way through the preparation, however, I said, “Why am I doing this? I’m tired of washing vegetables at the sink, stirring the pan on the cook-top and running to the market for things I’d forgotten. And yes, my legs hurt.” Oh, too late, Sue. Too late.

The Passover dinner was wonderful. Every year it’s wonderful. I loved it. I’m not doing it again. This is not a surprise to anyone who knows me. I’ve simply stopped cooking. I don’t know how happy Ed is but I’m wild with excitement!

For every previous Passover, I insisted on doing all the cooking myself. That includes the brisket, the honeyed chicken, the potato pudding, the veggies, the dessert cookies and whatever else it took. I accepted no help from anyone except Ed who took care of the chopping. He was good at it. Oh, the only item that someone brought was our neice Linda, before she and husband Bobby moved to Florida; they’d bring the soup. It was wonderful. I made the matzoh balls. I think. I don’t remember.

In any event, I was able to say to everyone, for every Passover, that I did it all. It was my way to remind the guests that I could, indeed, cook and that I did it for many years. As for the days after the Passover dinner, Ed and I ate at home. The leftovers were ingested with delight. And, I was done.

Now, we go to the home of friends or family for their terrific Passover dinners. I help in their kitchen a bit. I joke a little. I sit when told to, eat when told to and listen to everyone talk at once. It’s great.

So, Passover 2013, was my finale. When I tell some of my friends that I’m no longer cooking they look at me in surprise. They say they get tired of eating out. And that’s fine. I have no problem with that. For them. Personally, I never get tired of restaurant food or any food that’s outside of my kitchen.

Oh, wait. Before I forget, I did cook six dinners for my husband after that 2013 Passover. Real dinners: dinners that he’d never eaten before. Neither had I. It was risky, I know. I got roped into it because of our new kitchen.

A little back story. I’ve been wanting a new refrigerator for years: mine was quite small. As things happen, one Sunday afternoon sitting in the kitchen with friends of ours, Kenneth and Bill—Kenneth is an interior designer and Bill is an architect—I mentioned my refrigerator. And before Ed and I knew it, Kenneth had designed a spanking new, beautiful kitchen which included a new, beautiful fridge.

Ed was happy with the kitchen project. Shocked but happy. He was the boss and soon began calling, in the name of  building that new kitchen, all the people who had worked for him in the past. It brought back memories of the good old days at E(d) & S(ue) Kitchens. In any event, the kitchen is done. It looks terrific, given that it’s generally untouched.

Despite it’s untouchability, though, Ed decided– shortly after the new kitchen was installed–that I owed him six dinners, something never before mentioned! Six dinners? It did sound like fun though and, for some crazy reason, I decided to do it. I didn’t know that Ed meant six dinners per year. Oh no. No. NO. I stood my ground and six dinners it was. FOREVER.

My cooking is finished. We go out to a restaurant–I’m not fussy where–and we enjoy ourselves, talk to each other quietly and eat and drink our wine. I think it’s amazing. I believe Ed does too, but I’m not sure. Maybe.

Again, I’m glad to be back. Would you now like to join me in that glass of wine?

See you next month . . .

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Editor: Edwin C. Goldstein

Spring Blossoms

Posted By on May 1, 2012

Hi Dear Readers:

A blossom of information has already bloomed and awaits your attention. The Valerie Fund, an organization that supports comprehensive health care for children with cancer and blood disorders in New Jersey and New York City, has been serving sick kids and their families for over 35 years. To observe the occasion, The Valerie Fund’s VOICES was published.

VOICES is a book filled with astoundingly wonderful photos of our resilient Valerie Fund children, their poems, and their artwork. Insightful quotes by the children’s parents and siblings add to the book’s power.

VOICES, a team effort first conceived by Bunny Flanders of The Valerie Fund, and involving writer/editor Rhonda Silver, graphic designer Mary Tedesco, and me, is now on sale at The Valerie Fund’s website http://www.thevaleriefund.org. Please click on ‘Gift Shop’ at the top of the organization’s web page and take a look. This is truly a book to cherish.

On a far different note, another spring season blossoms for me with fresh writing possibilities and some computer clean-up tasks. These kinds of blossomings, though, require a sabbatical from my blog for several months. I am confident, however, that I will see more flowering from the fruits of my labor,

  • And since hope springs eternal, in mid-May with the help of an editor, I will begin restructuring my memoir, Unexpected Lives (working title), in a renewed effort to find a book publisher.
  • I am working on a second book, Breathless: Resilient Mothers in Challenged Families (working title), with my co-authors Cherie Castellano and Mary Beth Walsh about resilience in Moms with special needs children. These children run the gamut from autism to cancer to cerebral palsy and every serious illness in between. By the way, our book on resilience is still looking for additional submissions. If you know a mom with a special needs child who would like to submit a chapter about her resilience, please contact me.
  • The third project involves my website http://www.suzannbgoldstein.com. It needs to be spruced up: more content will be added and the site’s maneuverability improved. The web master will do most of the work but I’ll attempt to be a bit more courageous and do some of that maneuvering myself.

I will try to keep you all updated as to my progress. In any event, keep watching. I’ll be back!

Suzann

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Suzann B. Goldstein lives with her husband Ed in the Watchung Mountains of New Jersey. Suzann and Ed established The Valerie Fund, an organization that supports children with cancer and blood disorders in New Jersey and in New York City. Suzann has her Master of Arts degree in sociology with a sub-specialty in medical sociolgogy from Rutgers University, is a published author and poet, and has just recently completed her memoir, Unexpected Lives.

 


Editor: Edwin C. Goldstein

TOOTING MY OWN HORN: And Hoping I Don’t Blow it

Posted By on April 1, 2012

In January, I was told that I had been chosen as an Outstanding Woman of the Year in Somerset County by The Somerset County Commission on the Status of Women (SCCSW); the award category was for Public Service. A dinner to present the awards was to be held in March to celebrate Women’s History Month.

Chaired by Paula Marasco of Bernardsville, the SCCSW committee sifted through many names and ultimately recognized nineteen women in various categories for their “ . . . personal accomplishments and dedication . . . ” to their communities. I was one of those nineteen.

An estimated 300 people filed into the dining room of The Imperia in Somerset, NJ on March 23. The evening was lovely and crowded with family and suppporters of the award recipients, all milling around and talking excitedly.

I was honored by the award but panicky that I had to stand up and give a speech, one out of nineteen. Then I discovered that the categories were listed alphabetically in the program and the speeches, of course, were tied to their categories. Public Service was speech number 18. Uh Oh! That meant I not only had to worry about what to say but whether or not people will hang around long enough to hear me. Or, on the other hand, perhaps they might be too drowsy to listen to me speak. I desperately needed a glass of wine.

Wine did not help one bit and my food was put on hold. But the night was fun-filled. Jokes and laughter abounded and I loved it all. Except when I thought about speechifying.

The first seventeen speakers were heartwarming and those women were well chosen for their accomplishments. Which made me even more nervous.

To my surprise, the time and the speeches flew by; all spoke well and with passion. Equally surprising, the audience seemed wide awake and attentive. Most important, however, given the circumstances, my public speaking juices and my innate sense of competition had finally heated up.

The need to cut Abigail Adams from my speech, though, was disappointing. I originally wanted to praise her for her grit, but my speech was running over the time limit so I’ll tell you now what I wanted to say that night in honor of Abigail and Women’s History.

Abigail Adams, in March 1776, wrote to her husband, who would become our second President, “John, I desire you would remember the ladies,” and she bothered him about women’s rights throughout their marriage. Continuing on a firmer note, she cautioned, “If particular care and attention is not paid to the ladies, we are determined to foment a rebellion, and will not hold ourselves bound to any law by which we have no voice or representation.”

She was some woman, that Abigail, courageous and wise at a critical time in American history. Remembering her, I thought, this speech is not about “foment(ing) a rebellion”; this is merely a talk in front of friendly folks. I can do that!

I heard my name. Ed was poking me. It was my turn.

I stood up, walked to the podium, looked out at my audience, and began:

Thank you, Paula, and thanks to the Somerset County Commission on The Status of Women for my award in Public Service. Also, thanks to Carolann Garafola, the Mayor of Warren, and Bunny Flanders of The Valerie Fund for their efforts on my nomination.

And a very special thanks must go to my husband Ed, my other half. My Muse… My Lodestar… My Exemplar. Together, in all manner of things, we have taken care of our children, worked in our business, and shaped our public service goals. And, as an aside, he has suffered through, and opiniated on! every single draft of every single thing I have ever written.

As you can see, I’ve found the right guy. Thank you honey for being you, and for encouraging me to be all that I can.

My lost loved ones, too, have played their very important roles.

My older brother Stan was the first to push me toward public service. Our mother died when I was nine. Stan was fourteen and he was my best friend. Twelve years later, when he was twenty-six, Stan died in an auto accident. But by his example in his short lifespan, he taught me to feel concern for others, to avoid self-pity, and to be strong.

Shortly after his death, I took my life’s savings, the entire $20, and mailed it to Stan’s Hebrew School administrators telling them to offer a scholarship in his name to a young person in need. I didn’t analyze it at the time; I just knew I had to do something.

As it turned out, making that donation comforted me, and I did it yearly.

Fast forward to early 1970: our three-year-old daughter Valerie was diagnosed with bone cancer and treated at Babies Hospital in New York, over an hour’s car drive from our home. There were no pediatric oncologists in New Jersey in 1970 so most of our time was spent in caring for our ill child and traveling to and from the city. Stacy, our older daughter, was separated from us too many times to count. The guilt was overwhelming.

We lost Valerie in 1976, and soon after, The Valerie Fund — I called it our third child — was born in the living room of our Warren home. One year later, we opened The Valerie Fund Children’s Center for Cancer and Blood Disorders at Overlook Hospital.

We didn’t need an organization to remember Valerie — memories of her j’oie de vivre still make us grin — but we did need the comfort of knowing that other families with seriously ill children could find treatment closer to home, right here in New Jersey. Ed and I and all the people who volunteered their time and gave of their money worked hard to make The Valerie Fund successful. Today, The Valerie Fund supports seven children’s centers throughout our state and one in New York City. The Valerie Fund also runs a free one-week overnight summer camp, Camp Happy Times, with on-site medical care for children who have or have had cancer.

Fast forward again to 1989: our surviving child Stacy was diagnosed with breast cancer. She was a determined young woman, close to us, her parents, in every way as she battled her illness, thoughtful and loving in marriage and in child-rearing, and with a straightforward sense of reality. She was a model for living life as fully as possible. We lost Stacy in 2001. She was thirty-seven.

A few years later, Ed and I joined the fight against breast cancer with a focus, this time, on research as well as clinical care. In Stacy’s name, we supported fellowships for two young M.D./Ph.D. scientists, both young women, working in breast cancer research at Rutgers Cancer Institute of New Jersey.

In 2009, in collaboration with The Cancer Institute, we renamed their breast cancer center the Stacy Goldstein Breast Cancer Center. And when we see our two scientists over lunch or in their labs, I give them orders, “Work faster! Work harder! Find that cure!” We all smile; we all know that I’m serious.

I believe that the bedrock of public service includes the voices of our loved ones, a deep-rooted concern for others, and a lot of determination mingled with the gift of j’oie de vivre — a joy in LIFE. And on that path to public service, we learn, again and again, that when we give, we also receive.

Thank you for being here and for listening. This is an award I will always cherish.

And I will. I will also cherish the knowledge that I was the only speaker to receive a standing ovation that night. Astonished at the response, I left the podium to walk back to my table but was stopped by the many people in that dining room who were either cancer survivors or who have or have had loved ones with cancer. One woman told me she was a breast cancer survivor and had a son who was also a cancer survivor. Another, a man — a husband, brother, father? — simply touched my shoulder, nodded, and stepped away.

So. For all of us, our work is not yet finished, not by far.

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Suzann B. Goldstein lives with her husband Ed in the Watchung Mountains of New Jersey. Sue is co-founder of THE VALERIE FUND, has her Master of Arts degree in medical sociology from Rutgers University, is a published author and poet, and has just recently completed her memoir, Unexpected Lives.

 


Editor: Edwin C. Goldstein

Remembrances of Times Past

Posted By on March 1, 2012

Donnie Moorin died on Monday, February 20, 2012. He was 79 years old. Donnie, his younger sister Carole, and their parents lived two houses away from my family on Charles Street in Bridgeport, CT. Carole and I have been close friends since babyhood.

Donnie’s death shattered the peace of our Florida vacation — my husband Ed and I were on Longboat Key at the time — and instantly pushed memories of my past to the fore. They flashed by unordered, the past mixed with the present.

Memories. We forget. We combine. Or we elaborate upon them. Some bring a smile. Some tears.

For instance, my memories of Charles Street, right or wrong, include the following. They bring a smile.

  • My kitchen windows and Carole’s bedroom windows faced each other across two backyards, the views unobstructed, and like Mrs. Goldberg of early TV fame, we shouted to each other out of our respective windows until some adult hollered, “Stop it, you kids!”
  • Carole and I, during a crazed period of early adolescence, shaved our arms and eyebrows together in the privacy of her bathroom (Don’t ask why.).
  • She and I tumbled down the concrete stairs of her house holding tight to one another and have argued about whose fault it was ever since.
  • We smoked our first cigarettes together in my bathroom, standing close to the wide open window and working hard to wave the telltale smell outside.
  • And, last but far from least, Donnie wouldn’t let me walk on their sidewalk. My big brother Stan retaliated by forbidding Carole to walk on ours. Just retribution!

Additional snippets of memories, those dog-eared corners of my life, surfaced for me with a vengeance in the funeral chapel that Tuesday in Boca Raton. Unaware for the moment of my surroundings one thought intruded on another. I came to attention, however, when I heard friends in the midst of their eulogies call him Don or Donald. To me he was always Donnie. I wanted to stand up and cry out, “No, not Don. Not Donald. But Donnie. His name was Donnie!”

Back home two days later, still locked into the memories of my past, I turned to some old photos. One black and white in particular stood out. I don’t know who snapped the picture but five little kids stood facing forward and had been clearly commanded to look at the camera: Donnie, Stan, Carole, Sue, and Boopsie, the son of the Moorins’ upstairs landlord.

We were on a grassy field at an overnight Jewish Community Center camp in CT. It was visiting day. Did Boopsie go to camp? I don’t remember. But I’m sure Carole will remind me. She has a memory far better than mine. She doesn’t forget, combine, or elaborate. In fact, I am taking a big chance in writing about the old days because she will correct all my errors, and there will be many. I can handle it. After all, these are my memories, and they’ve settled unalterably into place, mangled or not.

The 3” x 5” camp photo makes us look curiously squat. And very young. The memory of that day so long ago somehow eludes me. I look at the photo often but it is just a photo. Were we really ever that small? A slow smile spreads across my face as my mind’s eye tries to imagine the five of us restlessly waiting for the end of the photo shoot.

Another photo is one of my mother standing in front of our apartment house and holding me, the baby of the Bresler family, in her arms. She died when I was nine years old leaving me without most memories of those early years. I often look at that photo as well.

It is a special black and white, and without fail, it brings tears to my eyes for the mother I missed in life and blocked from my mind. Although I do have many, I need no photos for those loved ones who are now gone but whose memories I have retained clearly: my twenty-six year old brother and best friend, my dad who brought us up with the help of my grandmother, and most painful of all, my girls, Valerie at nine and Stacy at thirty-seven. All are gone. The tears drip down uncontrollably.

See what Donnie’s death has wrought? And it surprises me that all the deaths before Donnie’s fall helter skelter from my heart, rising up so quickly in such vivid color, creating such emotions.

Yet, with the passing of the years, the sadness that often creeps upon me is just as often short-circuited by reminders of humorous past episodes. That part of my past becomes what I call the in-between times: the good memories when life was lived with a big grin and a great bounce. Those are the sustaining moments when I forget the sorrow and remember to grin.

And I discover, again and again, there can be laughter among the tears.

With that in mind, I remember Donnie as I last saw him about nine months ago at his niece’s Bat Mitzvah. He looked wonderful. We all joked and reminisced about the old days, and we hugged and kissed. Now that’s an in-between time, and a memory to store away forever!

So, Donnie my friend, although many stories are lost over the years, one certainly remains and carries with it a smile along with this generous offer: you can always walk on my sidewalk.

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Suzann B. Goldstein lives with her husband Ed in the Watchung Mountains of New Jersey. Sue is co-founder of THE VALERIE FUND, has her Master of Arts degree in sociology, with a sub-specialty in medical sociology,  from Rutgers University, is a published author and poet, and has just recently completed her memoir, UNEXPECTED LIVES.


Editor: Edwin C. Goldstein

True Love or Our Never-Ending Quest to Change Each Other

Posted By on February 1, 2012

Change is in the air. All sorts. All ways. All driven by society. This perpetual transformation pushes developments in technology, science, economics, communication, education and … the list goes on.

          There’s another equally long list, certainly significant, but not quite so dramatic, that involves much smaller change: really just a penny’s worth. Nevertheless, that kind of change seems to be perpetual too. I’m referring to the behavioral changes we humans try to induce in others, the changes we can’t resist promoting: weight change, smoking cessation, healthy eating, green living, exercise, frugality, neatness, listening, etc.

Attempting to bring about behavioral change in others is a habit that we humans believe is within our rights. Unfortunately, it is frequently circular, such as ‘I want to change you; you want to change me.’ Thus, you and I bounce back and forth chaotically and, in the process, provoke little change.

And so, through the years, I have learned that when we try to change certain behavioral characteristics in others, failure is often at hand. That does not stop me. Nor does it stop anyone else.

A first-person example is required here. When I was very young, and until I left my father’s home, he often said to me, “Suzann, turn off the lights when you leave a room. I don’t have stock in the United Illuminating Company.” My beloved father’s comment was just a little testy. And I found it weird, when some years later, my husband Ed said the same thing in almost the same words.

In the early years of our marriage, Ed would begin by saying “Honey, please turn off the lights when you leave a room.” In later years, I’d hear, “Sue, shut off the lights when you leave a room! We don’t own shares in Public Service.” His tone was just a bit testy, too. The campaign, by both my dad and my husband, to effect change in me broke down but never stopped. To this day I sometimes hear that command in my sleep, “Turn out the lights when you leave the room!” Admittedly, Sue’s failure to change.

In my defense, I like lights on in a room even before I get there. Therefore, I don’t turn them off when I leave. I can’t explain this but it’s a fact.

Our grandson likes lights too. When Jonah was about 2-1/2 years old, he started playing with the light switch near my side of the bed. I didn’t try to change him. Oh no! I didn’t say, “Jonah, stop playing and turn off the lights.” I simply sat quietly and watched as he turned the switch on and off, whispering, “Yights on, Yights off. Yights on, Yights off.” I thought Jonah had to be exceptionally smart in order to understand the connection between light and switch.  That story might not be relevant to this discussion. Sorry.

So, returning to the topic of behavioral change: the failure to attempt change in others exhibits a strange but clear pattern. At first, change may or may not seem to work; then it may work intermittently; finally, the change, if it has occurred at all, disappears completely.

Reducing that concept to the personal once again, my husband Ed has tried over the years to change my conduct on many issues besides lights. He and I just celebrated our 50th wedding anniversary. I was lucky to have found him. He is wonderful. But I do recognize that we have lived together happily for all those 50 years while continually trying to modify each other’s behavior. `

On one of our earlier dates, Ed took me to La Cave Henri VIII on East 50th Street in Manhattan. Over dinner that night, Ed made his first attempt to change me. He couldn’t resist. I was not a good eater. In fact, I was a lousy eater. My other dates would look at my plate at the end of dinner and ask, “Is that all you’re going to eat?” They were thinking of their newly emptied wallets and envisioned most of the expensive dinner on my plate disappearing with the garbage.

In great contrast, my honey-to-be, looked at my plate on the table of the elegant La Cave Henri, looked at the fork in my hand, looked at most of my food scattered to the edges of my plate, looked at the big empty space in the middle—my effort to make the uneaten food vanish from sight—and said, “If you don’t want to eat anymore, don’t. But don’t play with your food.” I shrugged, put my fork down, and grinned. It was almost but not quite love at first sight. I  was truly impressed.  Ed’s attempt to change Sue was a success. It was a noteworthy and courageous undertaking.

Five months later we became engaged; two months after that, we were married. Bliss for another two months.

Ed and I moved into a rental apartment in Plainfield, NJ. Then, he and I had our first fight and I pulled out a suitcase to pack up and leave. I was very angry but don’t remember why. In short time, though, I recognized the implications of the suitcase lying open on the bed: it was nighttime, I had no car and didn’t know where to go even if I had one. In truth, I was relieved when Ed grabbed the empty suitcase, closed it with a loud bang, and thrust it away into the closet where it was normally stored. After a short but intense staring match, we talked it out. I would no longer run away. Our discussion and Ed’s firm stance had changed me, and introduced the idea that true love conquered all.

Later, however, he told me that his actions were based, not on love, but on what to do with all the wedding presents we had recently received. Give them back? Too embarrassing. What a way to keep a marriage going, no? Nonetheless, Ed did modify my behavior. I had learned to stand my ground and fight back. I’m not sure that he was happy about that. Partial success on Ed’s part to change Sue.

Yet another attempted change: over time, Ed has complained that I don’t say I’m sorry, even if I’m not. That doesn’t make sense to me but it does sound terrible, doesn’t it? “Why can’t you apologize,” says he. “Because I didn’t do anything wrong,” says I. If I’m not sorry about some perceived wrongdoing, from Ed’s perspective anyway, how can I say I’m sorry? It gets complicated, but Ed continues to work on it while I remain firm. Again, Sue’s failure to change.

On the other hand, Ed doesn’t close the side door when he leaves the house for the mail—our mailbox is about 100 feet away at the foot of our driveway. I’ve tried everything. First, if it’s winter and if I’m in a nearby room, I whine that I’m cold when the door is left open. Next, I tell him that he’s wasting the heat and costing us money. At last, I start to holler. To no avail. The door stands open when Ed gets the mail. I don’t bother in warmer weather. I’m not cold. And yes, I know. It’s my fault he doesn’t change. I’m not consistent. But what about Ed’s inability to wipe his feet when he comes in from the outdoors and tracks all kinds of junk onto my clean kitchen floor. I plead, “Please, please wipe your feet, Ed.” Consistency is not an issue here! Ed’s failure to change includes two for one in this paragraph; not fair, you say? I’m sorry.

Which reminds me of a story about Marlo Thomas and her husband Phil Donohue when they were newly weds. He flagged down a taxi one day and, in a gentlemanly gesture, held open the back door of the cab for his wife. While he was doing that, Marlo hopped into the front seat next to the cabbie. Phil was astounded because once he had seated her in the back, alone, he would have gotten into the front and spent the ride blithly chatting away to the cab driver on his left, as was his habit. As was Marlo’s habit.

Did he change Marlo? I’ll bet he tried. Did they work it out by taking turns, by flipping a coin, by calling out “Odds or evens? once, twice, three, shoot!” or did they simply fight over the front seat each time they took cabs together? How was it settled? Was it ever settled? Probably failure to change on both sides.

Well, did I change Ed? Did he change me? What about Marlo and Phil? Any changes there? Probably not as often as any of us would have liked. Our attempts, though, are as perpetual as our hopes for modification. And despite failure, we humans remain everlastingly optimistic about changing the behavior in others, especially when it comes to our loved ones.

Not that it’s impossible . . .

Dear Reader: What about your attempts to change your loved one? Anything interesting?

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Suzann B. Goldstein lives with her husband Ed in the Watchung mountains of New Jersey. She is co-founder of THE VALERIE FUND, has her Master of Arts degree in medical sociology from Rutgers University, is a published author and poet, and has just recently completed her memoir, Unexpected Lives.
Editor: Edwin C. Goldstein

Happy New Year!

Posted By on January 1, 2012

Hi Everyone:

My post today is a series of short, evocative poems in honor of the New Year. They fly out to you, wonderful readers, with my best wishes for a very happy, healthy, and peaceful 2012. Special mention also speeds through cyberspace to my terrific husband Ed, born on January 1, the most exceptional New Year’s baby there ever was — Happy Birthday, Honey. He has loved me for 50 years; hard work that, especially since it includes reading all rough drafts posted to my blog, Unexpected Lives!

My poems of choice are haiku1. After reading all three I believe you’ll nod your head, grin, and then, as I did, find them permanently glued to your psyche.

This first haiku is appropriate for those of you who feel just a bit gloomy come 1/1/2012, or who simply want to bypass the annual celebrations. Know that you are not alone!

New Year’s Day­­­­­ –

Everything is in blossom!

I feel about average2

 This second haiku is indulgent: I love chocolate at breakfast time.

New Year’s Day –
granola breakfast special
with chocolate chips
3

And this last speaks to the sheer beauty and hope embedded in the new year.

Night snows
the words on New Year’s Day
clean and white3

From my family to yours: CHEERS! BOTTOMS UP! L’CHAIM! SALUD!

The next post to my blog will be on 2/1/2012. I’ll see you then!

~

1)      Haiku is an unrhymed, syllabic form adapted from the Japanese: three lines of 5, 7 and 5 syllables. Because it is so brief, a haiku is necessarily imagistic, concrete and pithy, capturing a single moment in a very few words. By Bob Holman & Margery Snyder, www.About.com Guides.

2)    Written by Kobaayashi Issa (1763-1827), a Japanese poet and lay Buddhist priest of the  Jōdo Shinshū sect, this haiku is one of many translated and published by Robert Hass in 1994.

 3)   A Dictionary of Haiku Classified by Season Words with Traditional and Modern Methods  by Jane Reichhold www.ahapoetry.com/aadoh/newyear.htm).

 Suzann B. Goldstein lives with her husband Ed and a tree named Buster, (Read about a Shih Tzu named Buster; 12/1/2010 post, A Half-baked Story About a Crazy Dog and a Nutty Squirrel; Source: www.unexpectedlives.com). Sue is co-founder of The Valerie Fund, has her Master of Arts degree in medical sociology from Rutgers University in New Jersey, is a published author and a poet, and has just recently completed her memoir, Unexpected Lives.


Editor: Edwin C. Goldstein

Books of Glass

Posted By on December 1, 2011

I’d like to tell you about the glass books — 8” x 10” pieces of clear glass hinged together in pairs, and graced, front and back, with wonderful works of art by everyday folks. Each of these ‘books’ tells a different and very human story about the effects of trauma and the coping behavior that might stem from it including substance abuse, eating disorders, anger, and everything else imaginable.

That’s the GlassBook Project in brief. The concept was created in 2009 by Rutgers University professor and artist Nick Kline in collaboration with Project Partner Helga Luest, the Witness Justice national nonprofit organization, and other artists, writers, survivors, students, and community organizations. Through the GlassBook Project, they hope to raise country-wide awareness and understanding for the way in which people respond to the abundance of emotional and physical wounds that seem to exist today. Since its inception the books have been exhibited in art galleries, educational institutions, and at federal and state meetings. They have drawn much attention.

Finding a way for the individual to express his or her reaction to personal trauma via an artistic form requires digging down deep into the psyche in order to first comprehend what is happening and then to interpret that knowledge for others to see — in this case, designing art-covered glass books that become a means to an end. Thoughtfully expressing the responses to trauma through a glass page is as significant as the end goal to disseminate information: in other words, to educate. Thus, the GlassBook Project is not only about creating images on glass: it is a teaching moment for those who see beyond the artistically bright colors and glittery objects; it is about reactions and the need to understand.

As terrific as it sounded, when the idea was first presented to me as a project for the Mom2Mom2 peer support program, I was skeptical. How would the GlassBook Project be helpful to the program’s recipients, primary caregiver mothers who have a child, or children, with special needs, e.g., autism, developmental delays, cerebral palsy, leukemia?

Mom2Mom’s program director, Cherie Castellano, however, recognized the importance of the GlassBook Project. Under Cherie’s wings, interested moms who were connected to Mom2Mom gathered to create their own glass pages with the guidance of artists Sarah Stengle, Nick Kline, and trauma expert and advocate Helga Luest.

The Mom2Mom group titled their collection of glass pages, Breathless. It was to be an advocacy and education effort, an artistic and absorbing outreach experience.

When the Breathless project began, I was invited to attend a training session although I wouldn’t take part in the project; I’d be away for most of the sessions. Besides being a huge fan of the Mom2Mom program, and despite my initial reaction, I was curious, and accepted the invitation, rather eagerly I must say.

On the day of one of the earlier training sessions, I sat down at a long, artsy-messy table in a sunny room in an art/media building on the Rutgers-Newark campus. Next to me was my friend, Amanda (Mandi) Grimes, a Mom2Mom volunteer and the mother of an adorable three-year-old Valerie Fund3 Children’s Center patient. We knew each other well. And in a flash, the two of us were discussing our glass book pages! No longer was I an observer.

As it turned out, the process is as interesting as the art itself, and working on a page, even as a novice, is as therapeutic as the satisfaction that comes with completion.

And so, as I listened to Sarah explain the techniques of working with glass, I also kept my eyes on the faces of the moms around the table. How did they react? Well, they were engrossed in every word that issued from Sarah’s mouth. The only sounds heard were questions asked and answered. The interest discovered as well as the short reprieve from the moms’ stress-filled lives was apparent in that GlassBook session and immediately changed my mind; both the experience and the resulting art I witnessed that day seemed invaluable to me and would no doubt be even more so once Breathless was exhibited.

The moms’ work,  the materials used, the colors, the stories, and the supportive camaraderie discovered at that table were all part of the GlassBook Project. But the work was not yet done. When the glass pages were finished, each mom had to write an artist’s statement describing the meaning behind her art. No easy task that. Yet both the art and the artist’s statement would, I had no doubt, be wonderous.

Afterwards, over lunch at a diner and through emails, Mandi and I discussed the whys and wherefores underlying the art, hers and mine. Our two glass pages would be linked together and although she and I talked, I had nothing to do with the the concepts essential to our  book. Mandi worked it out and put it all together; I contributed the photos! And what a job she did. I was truly breathless.

I saw our glass books displayed for the first time at the Autism NJ annual conference in October 2011. Mom2Mom’s Cherie, autism expert and advocate Mary Beth Walsh, and I had presented a workshop on resilience based on a book we are co-authoring, working title: Resilient Mothers in Challenged Families. Mandi and my husband Ed set up the Mom2Mom glass books display while Cherie, Mary Beth, and I discussed resilience in front of about twenty mothers of children with autism.

Later, as I walked up and down our exhibit table slowly examining each glass page, I saw that the transference of the moms’ trauma responses onto artful glass pages was done with such beauty and honesty that it did indeed take your breath away.

The small missing link was my artist’s statement. Everyone bothered me until I finally wrote the story behind my glass book pages. Following is Mandi’s statement and then mine; they are accurate descriptions of the art that traced our trauma and the trauma that guided our art.

Amanda Grimes’ Artist Statement

You are looking “through a mother’s eye” on the day I received my baby’s diagnosis of Leukemia.

In my book, I wanted to express the traumatic experience of my son and me. At Jacob’s birth, I had finally found my world. It was my beautiful baby boy. My job when I became a parent meant to love and protect my child. Everything I did, I did for him, and having him made some of life’s crazy turns easy…until the date that I never want to remember. I engraved this date on the glass, barely visible to signify that it will always be there—February 16, 2010.

Behind the date is a mirror with the image of the world, because when I became a mother, my child instantly became my world. But at that date and time, my world was also shattered. Hurt and fear took over, and I knew something was terribly wrong with my only twenty month old baby. I was completely devastated to learn there was a monster inside my baby boy that was stealing his smiles.

On the back side, you can see the picture of my eye, with my baby boy in the middle. This monster forced him and me into a bubble and a new over-protective life. We could no longer participate in everyday activities. My baby was trapped in a bubble that trapped me inside as well. I want to share this devastating experience with viewers, to expose this new, isolating world that I must continue to live in, a reality that I didn’t ask for.

Suzann B. Goldstein’s Artist Statement

The front cover of my glass book page shows a hazy photographic image of my two children smiling at me as they lean back against a beautiful cactus tree, a Pachypodium lamerei. In my imagination, the clarity of the tree’s leafy, enveloping branches shield the girls from harm. The back of the glass piece shows a blurred view of the same protective tree while my daughters have moved forward into the light. The fused imprint, front and back, always arouses in me a gamut of emotions from sadness to astonishment.

Both girls, two years apart, were diagnosed with cancer at different times in their brief lives: Valerie diagnosed at three with bone cancer and lost to us six years later, and Stacy diagnosed at twenty-five with breast cancer and gone twelve years after that.

Embedded in glass, their photo, taken years earlier and inventively superimposed in front of the tree offers me a well-preserved memory of Valerie and Stacy playing on the lawn in front of our home. Although gone from us now, their joie de vivre shines through and continues to shine undimmed for all those who knew them.

The three forms as a whole represent the in-between moments of life — those moments that recall a happier time despite illness. The unusual and memory-inducing permanence of the glass page allows me to return their broad smiles with a grin that is sometimes mixed with tears. It is the same reaction I get when I pass by the living tree on my many walks along a quiet Florida street. Those memories are important to me.

I call that tree Georgia. It looks like it might be a Georgia O’Keefe watercolor. But while fully-leafed in this piece, Georgia is most often bare. Nonetheless, she remains a sight to behold: tall and straight with branches stretching high to the bright blue sky.

And so, my girls and Georgia are a reminder to look upward when I feel down, to remember my lost children and their smiles, and to enjoy nature’s beauty as well as the memories that reside within us all.

My thanks to Mandi Grimes who so creatively developed my glass book pages as well as hers. She and I are connected through friendship, but it is more than that. She knows me well. We talked long about my piece but it was Mandi, the artistic mother of a three-year-old, who captured the concept and did the hard, innovative work of putting my scattered thoughts to glass.

Please click on http://www.glassbookproject.org/. In the beginning, simply wander through the site and see the many gorgeous glass pages. Then, on the left side of the screen, scroll down to the Glass Books section and click on Breathless. The colorful icons at the top of that screen will show you each of the moms’ artful work. Find Mandi’s pages and mine under the letter G. See how they are hinged together. They evoke anguish and joy both at the same time. Look carefully. Note that these pages as well as all the others speak to a mother’s love, a love that remains steadfast and transparent throughout time.

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1. The Mom2Mom program at the University of Medicine and Dentistry of New Jersey – University Behavioral HealthCare (UMDNJ-UBHC) provides a compassionate and encouraging environment for mothers of children with special needs. Call 1-877-914-6662 or email mom2mom@umdnj.edu.

2. The Valerie Fund, supporting comprehensive healthcare for children with cancer and blood disorders since 1976; www.TheValerieFund.org., 973-761-0422.

Suzann B. Goldstein lives with her husband Ed and a tree named Buster (Read about a dog named Buster; 12/1/2010 post, A Half-baked Story About a Crazy Dog and a Nutty Squirrel; Source: www.unexpectedlives.com). Sue is co-founder with Ed of The Valerie Fund, has her Master of Arts degree in medical sociology from Rutgers University in New Jersey, is a published author and a poet, and has just recently completed her memoir, UNEXPECTED LIVES.

 


Editor: Edwin C. Goldstein