After having gone into what was believed to be full remission, Stephen had a second run in with Leukemia. This time it was much worse than before. His body, so fragile from previous treatment, could not endure a second bone marrow transplant and the disease was quickly taking over.
At the age of 23, Stephen was facing certain death. He saw someone that needed love and compassion much more than himself in the next room. A young boy, who was also battling the same vicious disease, and was left to face the fear of hospitalization and treatments all alone. John's parents were working night and day to pay for his medical bills and to take care of his siblings, leaving him isolated and afraid.
John touched Stephen so deeply that in the midst of his own struggle with mortality he made a very simple request for people not to look at him with pity but to do something for these heroic children that deal with life and death on a daily basis.
Stephen lost his own battle with Leukemia in May of 1998, but his selfless act of concern was the continuation of a movement that has been going on since the beginning of time -- the movement to make a difference, to see a need and do something about it, to reach out to others in your own time of struggle and as a result, learn what living is all about. This was natural to Stephen and in looking beyond himself and asking others not to help him but to help those less fortunate than he, an organization was started that has served tens of thousands of heroes and given wings to a legion of angels.
The Art of Elysium was created in August 1997 in Los Angeles, California and was an answer to Stephen's prayers. The organization bridges the gap between the artistic community and hospitalized children by bringing in acting, art, music and various other artistic expressions to take the patients minds off of their circumstance and to give them an outlet to express. Saint Francis said "it is in giving that we receive." Stephen knew this was the greatest gift of all and over the past 11 years thousands of volunteers have been able to experience this essential part of life.
Stephen is not only my hero, he is forever my angel and I was fortunate enough to grow up in Hattiesburg, Mississippi with him and to know the boy that he was and the man he became. On December 31, 1996 while he was in the midst of one of his worst bouts with Leukemia Stephen shared John's story with me. He said, "I know I can handle whatever comes my way, because I am not alone... but there are so many children, young children, who spend their childhoods in hospitals alone."
This conversation changed my life. The impact of Stephen's seemingly infinite capacity to be aware of others and to care for them, even as he was physically broken and exhausted, shook my heart and called me to do what I could to make a difference. I was living in Los Angeles and had recently graduated from film school and simply invited a group of 23 artists to meet at a conference room on the Universal Studios Lot. What came out of that meeting was The Art of Elysium and the opportunity that Stephen has given me to meet both heroes and angels on a daily basis.
In August 1997, The Art of Elysium's first volunteers walked into Children's Hospital Los Angeles to take music to the bedsides of patients on the fifth floor. There were three musicians and each were extremely nervous because they had never shared their gift of music in such a way. Upon entering the floor, a blonde haired, blue eyed 7-year-old girl in a hospital robe skateboarded down the hall on an IV pole. Rien was the most radiant little girl that any of them had ever seen. No one would have guessed that she had never experienced one day of health and that she had been battling Cystic Fibrosis since she was an infant.
She saw the guitars and quickly leaped off of the IV pole and said, "are you going to play some music for me?" They fumbled around a bit and finally got their guitars out of the cases and began to play for her right there in the middle of the hallway. All nerves were calmed and after about five songs they began going from bed to bed, interacting with the patients and bringing laughter to each child that they saw. That day these angels received their wings. Rien allowed these musicians to give her their songs and she gave them the courage to take those songs to others. The gift is always in the giving and every visit since, each volunteer has spread their wings.
Years later, Vessie was sharing her own music with patients in the Oncology unit at UCLA Medical Center. It had been a marathon session of about three hours nonstop. Her voice was strained and she was both physically and emotionally spent. As she exited the hospital, she saw an older man sitting on a small wall crying. Immediately, she turned around and walked over to him and simply asked, "may I please play you a song". He put in a request of "You Are My Sunshine". She played the song as tears turned into a smile, he told her that his wife had just passed away and that was her favorite song, and "thank you for coming and singing for me". His smile brought tears of joy to Vessie because that day she realized that her talents could not only help the children in the hospital but people in need outside of the confines of hospital walls. Were the children she worked with the heroes, were they the angels and she the hero, was the man the angel or is it all the same as long as there is the exchange of giving and receiving?
Russell Young was introduced to the charity in late 2000. A punk rock, bad boy Brit who was living in New York, he had left the world of music videos and photography to pursue his own kind of art. He was and still is doing massive silk screens that are raw and cutting edge. He wanted to go into the hospital to teach the children his process. In an excited, not to be contained way, he said that his process was about choice and that "the children are left without many choices while they are in the hospital and they can pick the colors and the image. They need this!" In he went to do his first workshop and somehow the world changed that day.
He brought in color paper, Polaroid cameras, various images and in his mad genius way, he taught them what choice was. They were going through the paper and snapping pictures and enjoying every minute of the workshop. There were options, possibilities, art and freedom. Russell left the hospital even more committed the organization and forever changed by the experience. "I wish I would have been exposed to this earlier in my career because we could have done really fun and crazy videos with the kids. It should be mandatory for young artists to experience this because think of what kind of workshops they could create."
With that enthusiasm he went to work on another series of art and donated pieces to the charity, the next series he donated even more and by the third series he was giving close to half of the series to the charity to sell to support the programs. Through his art the organization has raised hundreds of thousands of dollars and has been able to bring the experience and freedom of art to tens of thousands of children. He regularly participates in art workshops and believes that "there is no greater reward than to know that through my art I can make at least one child smile and by giving money to the programs I can contribute to teaching another artist this great joy." Russell is another angel in the story of Elysium that dear Stephen has touched.
Besides the children and the artists there are an army of people that give in ways that have allowed The Art of Elysium to work with over 26,000 children in 2008 alone. They are the behind-the-scenes creators that not only exist with this organization but with nonprofits across the world. They are the staff members that work tirelessly for little pay, they are the board members that have full time jobs but still manage to commit to meetings and events, they are the publicists who spread the word and recruit new volunteers, they are publications that devote content and give voices to people that need to be helped. They too are our heroes and our angels because without each and every one of them the organization would not have the support to deliver programs to the little heroes that are facing illness and isolation in their hospital beds. More heroes and more angels that are needed to make it happen.
The Art of Elysium is first and foremost an artists' charity because if it was not for the talents of the volunteers there would be nothing to take into the hospitals and share with the patients. The artists not only volunteer their time, talent and energy they also donate art, sell CDs and produce plays to raise money to give the gift of giving to other artists. It is a community of artists who collectively believe in making a difference through their own personal gifts. It is the hope of the organization that each artist who participates in any of the hospital programs walks away with the knowledge that their power of creativity makes the world a more beautiful place not only for the patients but for all and that they are inspired to look around and see where there is need and bring their painting, their voice, their guitars and their love to the problem.
Even if you do not consider yourself an artist you must know that everyone is a creator in one way or another and has something profound to share. Please share your gift with someone in need. Once you start looking you see opportunities all around you to bring a smile to someone else and to become their hero and angel.
I am truly humbled that I have been blessed in carrying out the calling that Stephen spoke to me that day and I only pray that I have the strength to take artistic expression to patients not only in the greater Los Angeles area but to anywhere there is a child alone in a hospital room and an artist willing to share. We will take art to children the world around because when I look around all I see is a world full of heroes and angels waiting to be of service to make something happen. It is who we are and once someone experiences the happiness of giving nothing else will ever compare.
Since August 1997 there has not been one artist that has gone into the hospital that has not asked to come back in and what else they can do. Heroes and angels are most definitely with us.