The evening began with a heartfelt welcome from the coordinator of the SLE Workshop, Jillian Rose. She highlighted the accomplishments of the workshop over the past twenty years, giving the audience a feel for the scope of the program:
"We are here to celebrate the 4000 lives that the workshop has reached over the past 20 years," Jillian noted. "We are here to celebrate the 112 presenters who helped to educate our members throughout the years, and we are here to celebrate the connection and partnership that has been formed throughout the lupus community, as well as our outreach in person, over the phone, and through the internet, via our Workshop summaries, and the vision of our founder, Roberta Horton, who has given us a reason to celebrate by making this all possible 20 years ago."
Jillian went on to highlight the leadership by persons with lupus, the friendships, support, and learning that have been forged by the program, and the ongoing commitment by the members, health care professionals, families, and friends of HSS' SLE Workshop.
The program was then turned over to Roberta Horton, who delivered special words about the workshop. She talked about the need for the program and how the SLE Workshop originated:
"The workshop started simply because it was evident that people needed a forum to talk with others about what it was really like to live with lupus," Roberta noted. "Before the advent of the SLE Workshop, special words had been exchanged between lupus patients in waiting rooms, in rest rooms, and in our cafeteria. Words that needed a forum, a work in progress -- a workshop." Roberta also underscored how the Workshop represented HSS' Rheumatology Division's commitment to integrated care - care that honors the whole person.
Roberta went on to thank our supporters over the years and highlight the vital role that the workshop plays in the lives of those who participate in it. She also expressed appreciation for the passion and creativity that went into the planning of the night's celebration by Jillian Rose, and for Jillian's deeply committed leadership of the workshop over the past year of her student internship.
Special honors were given to the Workshop's most frequent guest speakers and avid supporters over the twenty years, which have strengthened the program and made its longevity and vitality possible. These included Dr. Stephen A. Paget, Physician in Chief and Medical Advisor to the Workshop, Dr. Michael D. Lockshin, the Director of the Barbara Volcker Center for Women and Rheumatic Disease, another Workshop Medical Advisor. Also recognized were physicians active with the SLE Workshop, including Dr. Theodore R. Fields, Dr. Melanie Harrison and Dr. Rachelle Scott. Others honored for their contributions to the Workshop were Sr. Margaret Oettinger, OP, Enid Engelhard, LMSW, and Lisa Chiccine.
The honorees expressed their appreciation for their awards and shared a few words about the workshop, what it meant to them over the years, and just how they felt receiving the awards.
Dr. Paget said, "This is really an extraordinary event. I was thinking before about the cumulative love, caring, thoughtfulness, and support that this workshop has been for people with lupus and those who love and support them over these past 20 years, and it's very important that you appreciate that we hear what your needs are, what your life is about, and are here to make it better, through research, care, and educating physicians….and for developing an institution dedicated to make your lives better…this is a wonderful, wonderful honor for me, but the best honor is for you to live the lives that you want to lead."
Dr. Lockshin followed by saying, "There is nothing more satisfying to me - when I first encounter a eighteen-year-old or twenty-year-old woman who has been diagnosed with lupus for the first time and has never encountered the disease or never perceived of not pursuing the lifestyle that she wants to because of lupus - than to be able to turn them to Roberta or Jillian and let them find that they are people who have been there; people that they can relate to. It's a tremendous resource to the hospital."
The other honorees went on to say equally wonderful things about the workshop and their experiences with it -- it was a very poignant part of the program.
Carmen Hylton, who was a past co-facilitator of the workshop and who had made many significant contributions to the workshop and its members, was then honored in a moving tribute. Dr. Kagen, who was Carmen's doctor in the past, penned some very eloquent words about her that captured her passion and spirit, which were read by Dr. Paget:
"Her interest and concern for others, particularly those with lupus, led her to form friendships and bonds with other patients and with the SLE Workshop, in whose endeavors she played an important part. Her humanity and inner strength inspired and strengthened those of us privileged to have taken part in her care. Her presence remains fresh in our minds and increases our resolve to support efforts to conquer this disease and to bring relief to its sufferers."
The attendees were delighted to hear Ms. Ellen Schecter deliver a keynote presentation. She continued the tribute to Carmen Hylton, a dear friend who inspired everyone who attended the first six years of the SLE Workshop. She then went on to read two excerpts from her recently completed book, Fierce Joy: A Memoir of Healing.
Ellen prefaced her tribute to Carmen by referring to what she called "the secret handshake of illness." She explained, "This handshake serves us as a silent code, a spiritual semaphore, that says, 'Yes, I know how you feel. I can't completely trust my body either. Part of me is always waiting for the next flare; for my other leg to buckle; for another unexpected crisis.'" Ellen went on to talk about how she met Carmen at the workshop and about the relationship they forged, and how that helped to inspire her throughout her life's journey.
"Carmen Hylton was a woman of dignity, kindness, and grace of spirit, and I think of her almost every single day -- especially when I need a jolt of her gusto," Ellen remarked. "'Ellen,' she told me, 'I will do whatever I must to get from Point A to Point B. I don't care what I look like, I don't care how long it takes me, I don't care how much it hurts. I just want to get where I want to.'"
Ellen went on to talk about the many contributions Carmen made to the SLE Workshop as a Co-Facilitator and guest speaker, and concluded her tribute by showing a powerful video interview with Carmen.
After the video, Ellen read two pieces from her memoir. The first piece she called Up, in which she described the unconquerable determination of trees and weeds to grow upwards toward the light, no matter what conditions they face or what obstacles plague their way.
"You've seen them. They rise up out of the corners in trashy lots. Tough as copper pipe, they fight their way sunward from dirty footholds in storm sewers or subway shafts." She used this as a metaphor for her struggle with the inexorable nature of chronic illness and her determination to show the same resilience as the trees -- to keep pushing up toward light.
In her second piece, entitled Down, Ellen detailed her arduous climb down an Italian Alp with her husband while using crutches and leg braces.
This story represents a challenge that Carmen, Ellen, and every other person struggling with chronic illness faces: What do we do to get past our physical restrictions? How do we live when so many opportunities are taken away from us by disease?
As Ellen explained it, "This is one way: If you can no longer climb up, why not climb down?"
Ellen's emotional readings served as an excellent bridge to some of the Workshop's members' lupus stories.
Cynthia Jones and Olympia Osborne began by presenting a chapter of their lives with lupus:
Cynthia highlighted how HSS had saved her life multiple times through her trials with lupus. She revealed that HSS was not only a part of her life, but also a part of her mother's life. HSS was, she said, "like family." She expressed the deep appreciation and respect she had for the continuum of care that HSS has provided to her and her family over the years, and explained that it's this continuum of care that has kept her going.
Olympia Osborne called her time with lupus "an eventful journey", as she described the multiple medical procedures that she has had to endure as the illness attacked her young body. However, she credited the SLE Workshop with helping her be able to endure some of the changes that she has gone through with the illness.
"Joining the SLE Workshop has made drastic changes in my life," said Olympia. "It has educated me about the disease and how it affects me. It has empowered me to be proactive in my fight, and now I have a more medical eye and voice in my care."
She punctuated her speech by saying, "My name is Olympia Osborne; I am a person with lupus, and lupus is not me."
The audience roused in applause as Olympia made her way back to her seat.
Finally, it was time to honor the Workshop's founder, Roberta Horton. Jillian Rose and Wendy Doran presented Roberta with a plaque and strategically placed her in the front of the room to sit.
To everyone's surprise, Wendy, Jillian, Cynthia Jones, and another participant had choreographed a dance number to honor Roberta and her contributions to the workshop, to commemorate the Hospital's research efforts, to drive home to Roberta how much she really meant to the members, and to thank her for having a magical vision and seeing it through. The group danced to three Tina Turner numbers, "Whatever You Need", which represented Roberta being there for whatever the members needed, "When the Heartache is Over", which anticipated the relief that would be felt when a cure for lupus was found, and "Simply the Best", which honored Roberta and her vision for the workshop.
There was a groundswell of emotion by participants at the conclusion of the celebration - a feeling of real community that the workshop represents - as they joined together to honor each other and participate in a special honor to a very special individual.
It was a blast! The program concluded with thanks and farewell delivered by Jillian Rose, then the audience mingled with members, speakers, and friends, and the participants raved about the program before heading home.
SLE Support Program at HSS
Learn more about the SLE Support Program, a free support and education group held monthly at Hospital for Special Surgery.
Summary by Jillian Rose, LMSW, Program Manager, LupusLine and Charla de Lupus/Lupus Chat