Erin Rachel Pincus Foundation
Dedication: August 8th, 1998
Erin Rachel Pincus
10 June 1981 - 12 January 1997
Her Story
Erin Rachel Pincus
10 June 1981 - 12 January 1997
Her Story
Through my foggy sense of security and repleteness, through a thin curtain next to my bed but seemingly miles away, I heard a quiet weeping surrounded by concerned family, trying to offer consolation and reassurance. As this awareness that all was not right everywhere in the world crept into my consciousness, I inquired what was the problem. Alas, another woman about my age had prematurely miscarried twins and had lost them both. Desolation. Inconsolability. G-d giveth, and G-d taketh away. Why me? Why her? Why now? Why both here together, at the same time, in an otherwise empty room, each of us marring the other's calm?
It was June 10th, 1981. It was the birthday of Jessie Amber and Erin Rachel Pincus, Erin the junior by 47 seconds. Jessie came first, head down, leading the way. Erin was breech, and the reason I had a C-section. She followed close behind. All anyone could say was how beautiful and perfect they both were. I was 29. My husband was 33. It was the peak of our lives. We knew nothing had ever meant as much, and that nothing would ever be the same.
Having been convinced I was having boys, I was completely unprepared for girl's names. We named them both that morning, in the recovery room, with the names that came to us through the heightened senses of the moment, and knew they were right. We shut out the rest of the uncertainty the world clearly had to offer, and took home our beautiful prize: our treasure, our jackpot, our Twins.
The first night home, a never to be forgotten dream came to my husband of a mischievous leprechaun sitting on top of a big bookshelf. As Erin grew, clearly she represented this elfsome spirit, obviously here on a great lark with her winsome sister who cheerfully sang her way through the house and our life. As they cart-wheeled, jump-roped, roller-skated, and hand-gamed their way through the years, the leprechaun and the butterfly were inseparable, two peas in a pod, never the same, yet never too different, complementing each other's existence, and as the twin Pied Pipers, leading a merry parade behind them wherever they would go.
Ever polite, ever friendly, ever a twin power pack, they were ever the center of attention at school and our workplace. They swam, they played, they read, they sang, they ran, they laughed. They passed time on computer games. By now we had moved from California to Ohio, where I had grown up. Erin was always winning things like "most enthusiastic camper". They had a smile and a hug for everyone. In so many ways it was a charmed life, right up through their eighth birthday.
I remember it was a lush green Ohio summer in 1989, with sunshine and crickets and summer camp. Erin, who had barely been sick a day in her life, lay on her bed all day through the Fourth of July with an excruciating headache. Before the week was done our life had shattered, as we all piled into the Cleveland Clinic Children's Ward, awaiting brain surgery. It seems a mostly benign but walnut-sized tumor had been quietly growing on her brainstem for who knew how long. Its pressure would kill her in 6 weeks if we didn't act fast.
We were lucky. Breakthroughs were being made all the time. We had wonderful doctors who cared and who were courageous. A seven and a half hour craniotomy allowed all the tumor which could be touched to be removed; though a brainstem tumor, by definition, cannot be completely removed, and all you need is one cell left behind to loom up later. The operation robbed her left side of much of its feeling, especially in her hand, but her resilience was astounding. She learned to walk again, regained her balance, practiced the guitar and monkey bars, and before long looked as normal as anyone. Only we knew the truth of the secret burden she carried. After awhile, outwardly anyway, mostly no one even knew anything had changed.
The next seven years and seven months of Erin's life were filled with everything wonderful we could fill them with, punctuated by numerous catastrophic events, operations, advanced treatments, and new techniques, which always seemed to miraculously resolve into normal life again. The surgery and treatments were of themselves each difficult and arduous. But afterwards Erin's love and exuberance would bring her to a new level of recovery. She amazed us and her doctors, event after event. We kept up our regular visits to the loyal and competent and ever-human Dr. Bruce Cohen, pediatric oncologist at the Cleveland Clinic. Erin became the surviving star, an inspiration to all. It seemed her love and tenacity for life and the people around her would have to ultimately win out, even in the face of the statistics, of brain cancer being the biggest and deadliest killer we have of children in this modern and high tech day and age of the 90's, when so many other problems are solvable, and the fear of death only an archived memory.
While Erin was never a complainer and always courageous, she never grew fond of hospitals, and developed quite a distaste for blood and needles. Lover of animals and rescuer to human cruelties, where before 1989 Erin had wanted to be a vet, the reality of the job transformed her life goals to her other love of fun and color and art. She still tried out for the volleyball team and the Wolverettes football dance team, but she couldn't excel in this the way she could have before the illness. Art became a more realistic and satisfying outlet for her. Though her left hand would shake as she would hold the paper, she diligently worked at her art skills, working her way towards her new and real goal in life - to be a Disney animator.
Erin had always been a fanatical fan of Walt Disney and all his cartoons. Since she was a baby, she had been glued to those animations, cheering for Mickey and Minnie and Donald. As she grew up, she still loved those cartoons, and read books about Walt Disney, the visionary who had made so much possible. While other teenagers moved on, Erin could still be found watching Silly Symphony, with a big grin on her face, eyes shining. Little notepads could be found around, with Erin's happy cartoons dancing across the pages. She would practice how to draw Mickey, how to make a figure move.
Erin's talent was not so much in the pen, as in her ability to grant life to everything around her; a Tinkerbell with fairy dust, but in a very down-to-earth, realistic way. She'd scold us for watching movies that were too depressing. She'd rather watch reruns of "I Love Lucy" for the hundredth time, and laugh out loud all over again. No airhead here. Her artwork was up, happy, but with intent. She'd always find a kind word for a left out schoolmate. She'd always cheer up the teachers, the doctors, the parents, even when she was the one with a problem. As she got older it was always she who went up to the boys at the dances, boldly bringing her sister into lively conversations.
But right through, she always wanted to be a Disney animator. So early on, with her future so uncertain, we wrote to the Disney people, and asked if she could meet one. In 1992, when she was 10, we were lucky enough to be ever so cordially received at the Florida Disney Animation Studio. She got to meet Mark Henn, who had just drawn Jasmine for the upcoming animated feature, Alladin. We got a tour, she got to see how things were done, she got an autographed picture of Mark, which still sits framed above her desk. Mark told her she could write him, so she did; in fact, all through the years. And somehow Mark found time to write back. She would send her artwork, he would tell her about their movies to come. She hoped to be Staff one day, and was quite serious about it. We researched where the best Art Design school was, where she and Jessie could go to college together, and prepare for the future; she on to Disney Studios, we hoped, Jessie on to her love of Classical and Semitic Archaelogical Studies.
Everything looked good, looked possible, for a good life, a normal life. The girls burned so bright together. But then, when Erin was 15, we hit another catastrophe. The tumor had grown, and it seemed this time it had changed its nature. Maybe the radiation had mutated it. No one can say. No longer benign, it looked like this time we might lose the battle. There was one chance, something new called immunotherapy, which Erin might qualify for. First, more surgery was needed.
It was summer again, 1996. We talked about the situation and its implications. We asked Erin what she most wanted to do, and to our surprise, she said she wanted to go to Israel. She wanted to meet her pen pals and visit Jerusalem. And thus began the next chapter of our lives, a new path which Erin led us down. Another unbearable stint of brain surgery in June, but as soon as the bandages were off, we were on a plane to Tel Aviv.
This was a real pilgrimage. How could the Almighty take our beloved Erin from us? How could such a bright light be snuffed out so early? We tried to ignore all this, and proceeded to have the adventure of our lives. Walking cane in hand, Erin toughed it out, and walked up to David's tower, rode the cable car up to Masada, recited her tehillin at the Kotel, the Western Wailing Wall. We touched the past, explored our Jewish heritage, and prayed for the future. Then we returned for the last bout of surgery, and on to the immunotherapy.
The last months were hard, but we were all together at home. Family had always been Erin's highest priority, and we stayed together to the end, determined to avoid the cold austerity of a hospital room, and ever hopeful for a breakthrough. As near as anyone could tell, it seemed that the immunotherapy successfully killed the tumor cells. We wished it could have been done earlier, when she was younger and stronger. But even now, it was so new, there was no experience for how to dispose of the mass it left behind, and eventually her brain simply ceased to do what it was supposed to do. Her last week was very difficult. Having been sustained on steroids and other drugs, her wracked body could hold out no longer, and she was gone from us one terrible, agonizing day. G-d took her painfully from us on a winter afternoon, January 12th, 1997, the 4th of Shevat, 5757. She died in her father's arms with her immediate family by her side. She was buried within 24 hours, as is Jewish custom, by and alongside her people. All things come from G-d.
We, her parents and her 15 year old twin sister, were left alone and lost. Our observant Jewish Community of Cleveland sustained us as best they could. But death of a child is a very hard thing to live with. All Erin's courage, tenacity, and love, was still in the end ripped from us, in the void which Death leaves behind.
So, you would think the story would end here, but strangely enough it does not.
Living in a rural section of Northeast Ohio, on a private wooded plot, we had kept pretty much to ourselves, right to the end. When we sat shiva, the seven days of intense mourning in the Jewish custom immediately following the death of a loved one, we were absolutely shocked to find our house filled to the brim with people, morning, noon, and night. It seemed everyone who Erin's life had touched over the last fifteen years had come to pay their respects. In fact as a testament to her life, a majority of her schoolmates hadn't even known what was going on. She had put up such a brave and normal front for so long, that hardly anyone had even known she had brain cancer, let alone that it was terminal. With the announcement made, an outpouring of feeling was given to our family. We were amazed to discover the degree to which Erin had touched people's lives.
In the last months before Erin died, we were given a great and wonderful gift, from Mark Henn's wife, Pam Henn. She found a way to try to grant Erin's wish to be accepted as a Disney Staff Animator. She made Erin a beautiful Staff bag, with Staff t-shirt and hat, and most importantly a book signed by all the Disney animators with signature drawings. It was probably one of the last things Erin really saw before she was agonizingly wrenched away by the Cancer which was destroying her ability to function; that and her Lady and the Tramp spaghetti dinner musical globe.
Erin had this way about her, of affecting people, climbing into their hearts, and grabbing a little piece of their souls. Letters, cards, memorials poured in from everywhere after Erin passed on. Gifts to charities, trees planted in Israel, a Joan of Arc statue behind the Florida Animation Studio, all in Erin's name. We built an online Internet library (http://www.mnemotrix.com/tachash) of sacred Jewish texts in her name, which people all over the world regularly access twenty-four hours a day for scholastic and religious studies of Jewish texts. The Erin Rachel Pincus Artist Scholarship Fund was set up at her West Geauga High School, annually awarding a senior art student for "up" work in Erin's way, using color and art in a positive manner using traditional and classical style. A tree was planted there in her name, with a plaque bearing her trademark expression, a smiley face and her impish daily question to her friends and family, "So, how was your day?"
Then came the final story, at least for the moment, which belongs to Erin and to Pam Henn. It seems Pam had bought one of Princess Diana's dresses at a Christies auction in New York, shortly after Erin died, in Erin's memory and name, not knowing the horrible end that was shortly to befall Princess Diana herself in that famed French tunnel. Now suddenly, in 1998, the memories of both Erin and Lady Di are all wrapped up in this beautiful dress, with an accent that only time and a Divine Hand could lend.
So where should such a thing lead? Obviously, only down a path of kindness, compassion, and artistic inspiration. Pam decided that this dress should be donated to the Kent State University Fashion Museum, where artists of the future can come and learn to emulate that which is beautiful, to be passed on to others who want to see. And hopefully to act as a vehicle to pass on energy from those who have it to give, to those who need it.
Kent State has been kind enough to offer a home for the dress, and for what it represents, and to channel any contributions this exhibit might bring about to our family's favorite charitable institution, Bait Lepletot, Girlstown Jerusalem, which offers a home and education, solace, sustenance, and a real future to homeless Jewish girls from all over the world, who have no where else to go. And through Kent State's kindness, a young woman from the Girlstown's own School of Fashion may someday be offered the opportunity to make a mark in the world of clothing design through all our efforts. This, and continued research for children's cancer treatment, to finally get a grip on this murderous disease, is what we can hope to leave behind in the wake of our dear daughter's death.
I asked Pam, why did she want to do this. After all, she had only known Erin from afar, and had only met her a few times. She explained to me that Erin had touched her in a way no one else ever had. Her imagination was so big, I guess that it reminded her of what they were all trying to do, what she was trying to do, which can become so easily forgotten under the trappings of life's noise. In a world of ego's and commercialism, a pure heart can bring one home again.
Kathy Pincus, Erin's Mother - August 9th, 1998
(Written before the launching ceremony of the Erin Rachel Pincus Foundation)