The Pennsylvania Lyme Resource Network is sponsoring a presentation of “the little things.” This theatrical docudrama tells the true story of the Elone family and their teenage son who died from unrecognized Lyme disease.

It will be held Oct. 13 at Ursinus College’s Lenfest Theatre, in Collegeville, PA. The evening will be a fundraiser for the Pennsylvania Lyme Resource Network.

I attended a presentation of this play in New York in 2016. What follows is the review I wrote at that time.

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Teen leaves camp with flu-like symptoms

In the summer of 2013, 17-year-old Joseph Elone from Poughkeepsie, New York, 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 went twice 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, Joseph soon collapsed at his family’s home and died without 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.

A remarkable artistic collaboration

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 docudrama called “the little things: One family’s battle with Lyme disease.”

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 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.

More than just a tragic tale

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 treatment have helped?

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, Masterson and two of the couple’s children contracted Lyme disease!

It appears that their cases were caught early and as of this writing are doing fine. (Though Masterson says she continues to freak out about even the remotest possibility of tick exposure.)

“the little things” is excellent theater and a compelling way to ring the alarm about an epidemic that must no longer be ignored.

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Expert panel

The October 13 presentation will be followed by an expert panel discussion including Mary Beth Pfeiffer, author of “Lyme: The First Epidemic Of Climate Change”; Garth Ehrlich, Ph.D., of Drexel University College of Medicine; Marina Makous, MD, former professor at Columbia University’s Lyme and Tick-borne Diseases Research Center; Martin Mulders, MD, local internist focusing on chronic illness and integrative medicine; Nicole Chinnici, MS, forensic scientist and Director of the Northeast Wildlife DNA Lab, the largest tick research center in Pennsylvania; and Julia Wagner, MBA, President of the PA Lyme Resource Network.

A special VIP reception with Davidson, Masterson, the cast, and panelists will follow the event.

Click here for ticket information.

Click here for more information about children with Lyme disease.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.