Streetlight Thinkback 2016

As we round out 2016, we come together and reflect on ten years of Streetlight support at UF Health.  Streetlight began as a gathering of seventeen high school and college students inviting teenage patients
to a weekly hospital event called, “Unplugged.”

 Ten years later we have had approximately 400 UF student volunteers who have partnered with over 2,000 teenage and young adult patients at UF Health.  We have grown each year, and rather than looking at those formative years as drafts, they are just as much a part of our Streetlight story as present day.

And you, reading this message, are a part of that story.

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“I’ve realized we meet many of the patients in a vulnerable time of their lives and truth is they also meet us in a vulnerable time of our lives. I don’t think I can ever say I’ve carried our friends more than they carried me. Every single patient I’ve met has played an important role in my transition into adulthood. I’ve shed a lot of tears, had tons of laughs, and learned so much about life, friendship, and medicine.”
-Ciddjyne Chery, 2016 Streetlight Volunteer Graduate

There are so many voices that make up Streetlight.  Above is a senior reflection from Ciddjyne Chery, a devoted volunteer who graduated from UF this year after serving three years in Streetlight.

Ciddjyne captures what Streetlight is all about: authentic human connection.  In an authentic human connection, there is emotion, reciprocity, and impact.  It’s not about who is in a wheelchair versus who is standing; it is about supporting one another through our life journeys wherever we are.

Although we find that breaking down the hierarchy between “sick” and “well” is integral to maintaining dignity, we must acknowledge the extraordinary life altering experiences and eventuating wisdom found in our chronically ill teenage and young adult patient population.

Thus, this year we have invested our efforts in uplifting the voices of our patients, the voices that can teach us so many valuable lessons.


In March, Streetlight represented at the Pediatric Palliative Care Nursing Conference at UF Health by holding a panel discussion. Gabriel Dantzler, Daniel Maher, and Adaobi Ugochukwu candidly and eloquently shared their experiences as adolescents managing Ewings Sarcoma, Acute Myeloid Leukemia, and Lupus Erythematosus (respectively) to a crowd of health care providers.

When it comes to patient care, we feel that the voice of the patient must be involved in provider education. Thankfully, we have some incredible people Like Gabriel, Daniel, and Adaobi, who not only use their experiences to educate the medical team, but also have joined our team of volunteers so that they can support other young people in the hospital going through similar challenges.
As one of our patient friends stated,

“Some may be thirteen, but they hold a precise part of wisdom others aren’t allotted until they are 80.”

And sometimes, those of us in Streetlight have the privilege of being a voice for those who can no longer share their story.  I had the opportunity this November at the Story: GNV Conference, presented by Self Narrate, to share some of the wisdom and perspectives I have learned in Streetlight.  I spoke about our partnership with a special young man with cystic fibrosis, and the lessons he taught us in love and resiliency through his life and most recently, his death.

You can check out the story here:

Our friends with chronic illness are our greatest teachers. Their stories help us to live our lives with more fullness and intention, and thus we need our patients to help us make Streetlight the best program it can be.  We are excited to announce that Streetlight was awarded a Children’s Miracle Network Clinical Infrastructure Grant so that we can evaluate our program and enhance our support. We are looking forward to an exciting new avenue of research.


And as we continue to write the future stories of Streetlight, we hope that we can expand and deepen our support for our patients who must endure lengthy hospitalizations within the confines of their rooms.  Some of our heart transplant patients spend over a year in the hospital, limited to their room as they wait for an organ.

sl-gaming-league-logoWe are seeking funding and working with our IT Department to develop the Streetlight Gaming League, a new network that would connect patients from within their hospital rooms through new generation game systems like PS4s and Xbox Ones to commune virtually.  Video games are a way to form a new identity, empower others on a team, and the chat features on the new systems allows for conversations outside of game play as well.


For one young man who spent six months at the hospital for a bone marrow transplant, video games gave him purpose to endure:

“When I was in the hospital my games were basically a way for me to put myself in a different scenario from the one I was in…

Video games let you be someone else, albeit not forever, but just enough to let you get away and save the world…

It’s video games that can let you be anything you want.”

Video games help one to live the story of one’s choosing, an autonomy that is hard to come by in the regimented inpatient lifestyle.

With support, we seek to overcome the physical boundaries that separate our patients from making relationships, and connect volunteers and patients through a positive community of engagement.


You have become a part of our Streetlight collaborative story, and we are richer because of that.

In closing, I will share the words of someone who is living out the story of Streetlight—JJ  Burgesslowe—a  young man whom I met six years ago as a patient, and now know as an inspiration:

“The importance of Streetlight, is to be that one shining light in someone’s journey thru the long walks of life. That they can look up to when the roads ahead seem dark and shallow. To be a remembrance to the patients that people care, and who will be there even when others may not.

 

The goal is to bring comfort & connection.

 

Many times people have walked the roads afraid, lost, alone. The energy from Streetlight not only uplifts but you all shine!!! To brighten and better the future of patient care… I don’t know much but over the years this is what I’ve gathered. And I think that’s just half

of the amazing power of STREETLIGHT!!!”

As we look back on ten years of Streetlight,

We thank you for your support–
Whether it’s been as someone who we met as a patient, a volunteer, a member of the medical team, a community member, a UF Health employee, or as someone who felt personally convicted to donate to our program and see us make this ten year mark.

Thank you.

There are Two Ways to Give…

Make a Gift Online Here
*No Appeal Code Necessary

Or,

Mail a check addressed to “Streetlight” to:

Streetlight/Emily Sullivan
1600 SW Archer Road
PO Box 100296
Gainesville, FL  32610