TOUCHED BY LYME: Docu-drama rings alarm about Lyme epidemic
In the summer of 2013, 17-year-old Joseph Elone from Poughkeepsie, NY, returned from two weeks at a summer camp feeling lousy, with a cough, a sore throat, and other symptoms that just wouldn’t clear up.
He finally went to the doctor, who among other things gave him a Lyme disease test, which came back negative. The doctor diagnosed him with a virus and sent him on his way.
In a shocking turn of events, soon Joseph collapsed outside his family’s house and died without ever regaining consciousness. An autopsy showed Lyme spirochetes in his liver, heart, lungs and brain. The official cause of death was Lyme carditis—a condition which interferes with electrical signals in the heart.
Understandably, his parents and brother were devastated by the loss. Yet, in time, they wanted to share their story to help shine a light on the growing Lyme disease epidemic.
Thus began a remarkable artistic collaboration between the Elone family and Storyhorse Theater, a project started by writer/actor/filmmaker Jeremy Davidson and his wife, screen and stage actress Mary Stuart Masterson. The result of this partnership is a docu-drama called “The Little Things: One family’s battle with Lyme disease.”
I was familiar with what happened to Joseph from news accounts and had read about “The Little Things” when it premiered in Poughkeepsie last year. I finally had a chance to see the production last week in Vestal, NY, where it was presented in conjunction with the Southern Tier Lyme Disease Support conference. I went into it wondering how the story would be told.
The staging is quite simple: four actors sit on chairs, with words and pictures sometimes projected on a screen behind them. The characters are Joseph’s parents, Benedict and Diane Elone, his older brother Emmanuel, and Joseph himself (though his is mostly a silent presence, with a few riveting exceptions).
The actors, David Pegram (Emmanuel), Cornelius Davidson (Joseph), Kellie Overbey (Diane) and Leon Addison (Benedict), make us totally believe we are in the presence of the actual family members.
They speak their parts—most of it taken verbatim from transcripts of conversations between the show’s creators and the Elones—as if we are guests in their living room, and they are telling us what happened.
It feels so incredibly REAL. Layers of painful emotions, leavened occasionally by lightness and even humor. Kind of like you’re attending a wake, where people smile through their tears as they recount fond memories of their missing loved one.
Yet, it’s so much more than that. Their poignant words, so skillfully communicated by these actors, paint a greater picture than merely the tragic tale of a young life cut short.
The story of Joseph Elone illustrates much of what’s wrong with the standard medical approach to Lyme disease.
Here was a young man who returned from a camp in Rhode Island—a state known to be highly endemic for tick-borne diseases—who presented with flu-like symptoms in the summer time. (Ring any bells, people?)
He went to the doctor in his home region of NY’s Hudson Valley, also a place that is highly endemic for Lyme disease. So tick-borne illness should be high on any local doctor’s radar.
Yet, based on the results of a crummy lab test, which even the IDSA and the CDC admit isn’t accurate in the early weeks of infection, the decision was made that Joseph couldn’t possibly have Lyme disease.
Would immediate Lyme treatment have staved off this young man’s death? That will remain forever unknown. But how heartbreaking that Joseph and his family never had the chance to try.
The hour-long production of “The Little Things” was followed by a question-and-answer session with Lyme disease expert Dr. Richard Horowitz and the show’s creators, Davidson and Masterson.
Here’s an ironic twist revealed during that Q&A:
The husband and wife who created this show had never had any personal experience with tick-borne illness before. They became interested in the topic because Joseph’s family lived in their area. Yet, sometime after the show was launched in 2015, Mary Stuart Masterson and two of the couple’s children contracted Lyme disease!
It appears that their cases were caught early, and they seem to be doing fine. (Though Masterson says she continues to freak out about even the remotest possibility of tick exposure.)
“The Little Things” is excellent theater. Coupled with the medical perspective of Dr. Horowitz at the end of the show, it’s also a compelling way to ring the alarm about an epidemic that should no longer be ignored.
Click here to learn more about Storyhorse Theater.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.
I’d love to see the production, but not enough to travel back East! I’m constantly telling my son and daughter-in-law who live near Nashville, TN to take care, but…. they don’t. 🙁
We now live in central, CA and have a large family of squirrels in our backyard. I do tick checks on myself every time I walk on the grass now. It’s really warm out, so I wear sandals. I have late-stage, chronic Lyme, Was bitten 28 years ago when we lived in a suburb of Buffalo, NY. I had the “flu” three winters in a row. Finally, in 1996, the bottom dropped out and I could no longer function. Two years later, I learned of a Lyme specialist in the L.A. area. He diagnosed me with Lyme right away, based on all of my symptoms through the years. I had another friend with Lyme in southern CA who had his heart stop a few times, and the doctors still refused to believe he had Lyme. He was infected in Colorado while on vacation. And the list goes on…. My heart goes out to this family!
Your loss is unacceptable medical mispraction. I have Lyme disease live in Florida. Lyme doeant discriminate when where it affects us. I have been ill since July 2015 to present . Only just recently my good friend helped me find a LLMD LYME DISEASE DR in Florida, the only one down here. The non-LLMD LYME disease dr, and insurances and politics and lack of funding are neglecting our care. I have written to Elizabeth Warren, who is a “fighter for the people”. Im on Facebook and im not givin up. Sharon Murray
What a touching review, Dorothy. It sounds like a lovely production!
I would love to see this show. And cheers to the family for keeping their sons memory alive in a good way for a great cause.
I tell my husband that this Lyme will be my death in the end. He doesn’t want to believe it but I know in my own body that these little nasty aliens are destroying and invading my body section by section. Being middle class, with children, living in a coal country area with corrupt city politics, only one of us working, makes me have to accept the fact that I can’t get treatment and That I will die young. Use to scare me but I’m embracing the truth of it. My only hope, and the only hope among thousands of others is that we will be recognized sooner than later and get the chance to heal.