08 July 2003
Jean Schwab
People say that girls blossom, like flowers, as they move from their teen years into adulthood. The analogy suggesting that they eventually arrive at a point of full beauty and maturity. If they are correct, then Carolyn Shepard was in full bloom.
A spectacular flower, like a stargazer lily, open wide to the world around her, sending pulses of fragrance outward each day, drawing the world to her, opening and opening with each smile. Daring those of us nearby to try to ignore the wonderful spectacle of her life, the fullness of her affection and the grace of her love.
I, like so many of you, could not begin to ignore her, who would want to? I was lucky enough to be extended an invitation into the life that was Carolyn Ella Shepard, and even though my invitation came later than many of your did, I did not hesitate to accept.
When I met Carolyn Shepard, in the fall of 2001, I met a teenage girl fraught with all of the emotions, opinions and anxieties that accompany most teenage girls: appearance (hair, body, face), boys, school, independence, and the struggle for it,
friends, maturity, and the meaning of life. I met Carolyn under the cloud of a new leukemia diagnosis, and hoped at that point to be able to support her through both her adolescence and her cancer.
Carrie evoked feelings in people, rather than words. Her name on my clinic list brought an instant smile, because I knew that she would arrive in full possession of her physical and emotional truth for that day. Translation-what you saw was what you got. Good, bad,pukey,tired,anxious,silly,etc. Carolyn was herself.
In the beginning month of her treatment, when steroids made her moody and exasperated, she came to clinic in tears, saying, “I don’t know my own mind, these drugs are making me crazy, do people go crazy on steroids? I am going crazy. I need to stop taking these. TODAY!” But she continued to take them, like so many do, until the dose was finished. Her maturity surfacing in the face of a most unpleasant situation.
When decisions were needed regarding her treatment, Carrie often asked the most direct questions, not wanting to be spared the complete picture of her symptoms. Wanting instead to make wise informed decisions with the input and support of her parents.
She took pleasure in the kind-hearted mocking of her oncology team, picking up on our quirks and peculiarities and teasing us without hesitation. Thanks to Carrie I may never completely lose the title, POOR DUMB JEAN. But in her familiarity with us, she was drawing us closer, making us a part of her family, and I believe, gaining strength from our acceptance and affection.
Carrie understood that acceptance and healthy coping were far superior to whining and withdrawal. When inpatient with a bleeding mouth for her birthday, she simply loaded up on Ativan and smiled for her pictures with Josh Hartnet’s adoring gaze just over her shoulder. Months later, looking at those same pictures, she marveled at her shocking appearance and was grateful that she had no memory of the pain.
Carrie was not elusive. She was open to all comers, willing to share the details of her diagnosis and treatment, to describe her frustrations and invite newly diagnosed patients to call or e-mail her if they needed to talk-many did. In those instances, she became an ambassador of sorts, able to relate, be reassuring, and unfailingly kind.
When a new friend and patient lay dying in a room nearby hers on 4W, Carrie wept, covering her head with her pillow and asked me, “Why is this happening? Nothing makes sense, she is such a good person, and her family will miss her so much. I don’t know what to say, but I want to say something to her mom.” She never failed to remember to ask about the friends she had met, especially those she had not seen in a while, knowing full well that her questions had answers and the answer might not be easy to hear.
I remember her grinning and running toward me during the holiday party last winter, so eager to share news about an old friendship/new boyfriend, and I remember her sadness when things ended. Even in that universal life experience, when many teens would find themselves stuck in bitterness, Carrie continued to open wider to make room for that friendship again.
Carolyn was careful with people; her friends can best speak to that. She preferred gathering people close in laughter and celebration to shave heads, attend prom (inpatient or not), host a slumber party, or watch the Sox win. Carrie went to Aspen and on the road with Aspen; she went to One Step and teen groups. She went to school, youth group, fundraisers and funerals, and at each place she continued to blossom, spreading her humor, warmth and grace, and making meaningful connections.
So, I watched Carrie change, in full view of her parents, in spite of her cancer, her relapse, her fungus, and I listened as her concerns became those of an adult facing her own death.
She loved you all so much, Marybeth, Jeff, Luke, Scott and Nora. She wanted not only more time for herself, but also more time with each of you. We sat, Laura, Carrie and I, less than 2 weeks ago, after another hateful confirmation of her relentless cancer, and we cried together, because words were useless and tears made sense.
We cried, with Carrie and for her, and for ourselves a little, and then, as many times before, we began to laugh when Carrie joked that her “support team” did not seem to be very supportive. After a few moments, Carolyn whispered, “I just don’t want to do this to my family.” Do what I asked? “This,” she said, “this sadness, this pain, this dying.” She was not so much afraid for herself it seemed, but for her family, and in her heart, for all of us here without her.
So, my vantage point was different from yours, not that of a parent or sibling, teacher, doctor, neighbor, uncle, or friend. All of you have Carolyn tucked safe in your hearts and in your prayers. Her face is forever preserved in your mind’s eye at a variety of ages. Most of you have far more memories of her than I, and you have shared your prayers and wishes with her both in person, and on her web page. I feel grateful that I was present with her during her leukemia experience, I feel honored to be here tonight, and I feel angry that cancer has robbed us all of her glorious spirit. She was throughout her life, a magnificent y oung woman, a glorious flower, remarkable and unforgettable.
I will miss her greatly, and like all of us here tonight, I will keep her safe in my heart and memory, and I will remember all of you in my prayers.