Dear Friends of Streetlight,
As we near the end of 2015, all of us in Streetlight give thanks for all of the people who have inspired us.
I invite you to watch our Streetlight Think Back Video to see the special experiences we have shared together here: Our Assistant Director, Drew Walker, organized the memories among our disease specific support teams, and also included various other special moments.
The song in the background is Rachel Platten’s “Fight Song,” performed by a few of our talented friends in their hospital room. This song reminds us to never underestimate the power of the human spirit.
Being a young person dealing with a chronic illness is not easy. One of our friends with cancer, Francisco Lourenco, shared in a TV-20 interview that “even with the insurance and all these things, we tend to get responsibility, but we’re not that far from the social needs of kids. So we’re kind of like forgotten in the middle.” You can hear more of Francisco’s story and his thoughts on Streetlight at this link here. Streetlight recognizes the importance of being an adolescent and the significance of finding quality of life in the most challenging circumstances. Viktor Frankl, a Holocaust survivor, writes in his memoir that “we cannot judge a biography by its length, by the number of pages in it; we must judge it by the richness of the contents… Sometimes the ‘unfinisheds’ are among the most beautiful symphonies.” We are all unfinished, and between our volunteers and patient friends, we are working together to add as much beauty as we can to each other’s symphonies.
This has been a year marked by growth. One of the projects we are excited to share with you is our Cystic Fibrosis Transition Yearbook entitled, “Inspirations and Exhalations!” Due to the generosity of some of our donors with a conviction for cystic fibrosis support, we produced a yearbook celebrating our CF friends graduating to adult care. In the yearbook, we collected quotations and pictures from the pediatric and adult staff, while showcasing our friends with CF with biographies and pictures. The patient biographies were either written by the patients or by their Streetlight friends who interviewed them. The yearbook is one part of our CF transition program that we have developed in the last several years. You can check out a virtual copy of the yearbook at this link here. On admissions, we now implement the CF Dining Days where each CF patient receives a meal of their choosing from BJ’s Brew House. Streetlight members pick up and hand deliver the meals to their patient friends. Due to the importance of nutrition for people living with CF, and the social challenges accompanying infection precaution isolation policies while they are in the hospital, these meals have become a powerful source of support to our friends with CF who regularly come to UFHealth for multiple week admissions.
This year, the Streetlight research article entitled, “Adolescent and Young Adult Palliative Care at the UFHealth Streetlight Program: Impacts on Pre-medical and Pre-healthcare Professionals,” was published! You can access the article at this link here. Our committed team of researchers from the University of Florida Center for Spirituality and Health facilitated this study of the impact of Streetlight on our volunteers. Through survey and focus group data, results support that Streetlight offers a unique experiential training in patient care unlike what is offered in medical school. Volunteers reported that their experience with Streetlight influenced their career choice and that the longer they were involved in Streetlight, the more likely they were to agree that their experience with Streetlight was transformative for them personally. For me, I think the reality of this research became clear when one of our old Streetlight volunteers returned to UFHealth as a pediatric resident. When one of our chronic cystic fibrosis patients met this physician, she exclaimed, “Wow, it’s a Streetlight doctor!” We hope to generate a new wave of compassionate “Streetlight doctors” that can be recognized by patients for their empathy, humanism, and sensitivity to the psychosocial spiritual side of healing.
2015 brought with it opportunities to share Streetlight to new audiences. Earlier this year, I received the honor to present the program at the UFHealth Palliative Care Conference in May. Dr. Kittelson organized a beautifully balanced conference featuring care providers discussing the physical, spiritual, and psychosocial needs of human beings receiving palliative care. It was a pleasure to share the stage with such outstanding company.
We also explored the online world of communication when I hosted an AMA on Reddit.com. An AMA, or “Ask Me Anything,” is a live, open-source interview where users from Reddit can ask questions about a topic. The Streetlight AMA garnered over 100 comments, facilitating a dialogue spanning various countries. At one point during the live interview, the Streetlight AMA was the most popular interview on the site, rising to the top of the AMA page! To anyone who participated in the interview by upvoting the post, submitting questions or comments, or even just going online to read it, thank you! Several of the questions were submitted by young people living in different cities sharing their experiences with chronic illnesses, and their desire for Streetlight support in their respective locations. This comment is one I found especially humbling,
“I had my first bowel resection for Crohns disease in my late teens. Not anything comparable to the people you help, but it did make me recognize my own mortality at a young age and it was terrifying. I was released from the hospital 2000 miles from my family and any support. There aren’t many teenagers who contemplate their mortality, let alone discuss it.
This part of your program is something I wish I had had. I expected some feels when I came here, but this part really touched me. Most places, when you are gone, that’s it. Your follow up and sharing cherished memories of past loved ones and acknowledging how they affected your lives is priceless. I don’t have a point, just a thanks, for what you do and sharing what you do. Thank you.”
The experience further reinforced the need for this type of age-focused support and was an effective way to spread the work of our program, and to connect with patients and health care providers from different institutions.
Looking to the future, we hope to uplift the voices of our patients and families in an upcoming research project focusing on the effects of Streetlight on our patient population. I am in the process of seeking funding and support for the project, which will determine the scope of what we can study. Although we have published research on the effects of Streetlight on our volunteers, I feel it important to establish Streetlight’s importance to our patients. We hope in 2016 to make this project a reality, and to produce data to support the continuation and expansion of this work. We will keep you posted on our progress!
In closing, I will leave you with some words of a mother whose daughter passed away this year. A treasure to our Streetlight team, her daughter’s memory will continue to live on in our hearts forever.
A few months after she passed, her mother reached out to us and shared these words in a letter:
“Thank you for the times you were there for her when we couldn’t be. All those movie nights, crying times, praying times, & happy times- thank you. I was always concerned about her being alone; isolated, but you helped bring life into that hospital room of hers. She loved hearing about what you were doing in your lives, your school, etc.
She lived vicariously through your lives and experiences. It kept her abreast of what was going on in the real world. She was on the pediatric floor but Streetlight brought things that catered to her age group. What a breath of fresh air that was for her. Not being treated like a little girl when she was a grown woman.
Circumstances prevented me from being with her all the time while she was hospitalized but what a comfort to know that even though she was isolated in a hospital room, she was able to overcome that obstacle and experience true friendships- to give and to receive love.”
I do not believe there is anything more fundamentally important than giving and receiving love. This is our Streetlight mission. We are here today because of the support from the UF Department of Pediatrics, and giving from our generous and compassionate donors. To all of you who have supported us in our effort to provide true friendship, thank you.