8 minute read
Moving Forward with Eyes Wide Open
As Stephanie Gularte leaves the helm at American Stage, she confronts uncertainty about her eyesight and contemplates a reimagined future.
BY CINDY STOVALL
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This is not a story about theater. It’s a story about grace. Confession: This article is personal.
Personal because of the openness and candor of Stephanie Gularte – who, by the date of publication, will be the former CEO/Producing Artistic Director at American Stage Theatre Company.
Personal because she is a friend that I care very much about who is facing a diffi cult health challenge, to wit: It can be diffi cult to separate the journalist, not only from the friend, but from the nurse – which I was for so many years. It’s important to me that I honor our conversation and relay it in a way that not only informs, moves and inspires, but, above all, respects her and refl ects exactly what she told me. That’s why, for the most part, Stephanie Gularte is narrating this piece.
Over the past six years Gularte has been the guiding light at the helm of St. Petersburg’s top professional equity theater overseeing a half dozen annual productions, including the popular American Stage in the Park outdoor summer series, and a full schedule of summer workshops, apprenticeship programs and community outreach.
This interview took place in June, literally on the eve of Raise the Curtain, the 2021-22 season announcement gala – and the last offi cial function of Stephanie Gularte at American Stage.
“I’ve long noticed the little changes,” begins Gularte, referring to her eyesight. “I have a diffi cult time adjusting from bright light to darker areas. In theater, that’s a pretty frequent occurrence,” she smiles, “so it became a bit of an inside joke that I often needed help off stage.” “I had experienced some increase in night blindness and at times, just general eyestrain in reading or computer work. But everyone experiences that, right? It didn’t occur to me, as I made an appointment with an optometrist in February 2020, that it could be anything serious. I was noticing changes in my peripheral vision as well. Still, I could never have anticipated what came next.”
A Very Bad Day
“Friday, March 13, 2020, was not a good day,” explains Gularte. “As the seriousness of COVID-19 became an unavoidable reality for American Stage, it was the day we decided to ‘turn the lights out’ on live performances – hoping, of course, that it would only last a few weeks or maybe a month or so at most.
“For me personally, it was the day I received the official result, almost a month after my initial exam, of genetic testing that had been done to confirm a diagnosis of Retinitis Pigmentosa. I had no idea, at that time, what the ramifications were or what it really meant.”
Retinitis Pigmentosa, or RP, is a genetic disease of the eyes effecting about one in 4,000 people. It usually appears in childhood, often unnoticed, but can occur at any age. The genetic component of RP is a difficult to isolate gene(s) mutation that causes damage to the light receptor cells of the retina. Symptoms, like night blindness and peripheral vision loss, are progressive and degenerative - worsening over a period of time, and ultimately resulting in partial or even complete blindness. The spectrum of symptoms, progression and outcome is wide and varies greatly from individual to individual.
In Gularte’s case, the disease most likely had a childhood onset and to date, the eff ected gene in her case has not been identified or isolated, making specific treatment unavailable … for now. “The two realities were happening simultaneously with so much uncertainty around both things – both my diagnosis and the pandemic and its impact. These were two very different, yet very intense scenarios – both professional and personal that I had to get a handle on.”
“At the time, as I saw it, I had to focus on American Stage because ultimately, it was MY responsibility to figure things out and come up with a plan. We just had no idea of what kind of timeline we were dealing with or how long a shut-down would be necessary. During that same time, I also knew that I needed to learn more – as much as I could - about my diagnosis.”
After discussions with the team and the board members over the following months, by August, she made the decision to share her diagnosis and announce that she would be stepping down.
“Theater had been my center for so long and St. Petersburg had become my home. It wasn’t about whether or not I could do the job – though, personally, I had a fear that my overall process might already be impacted by my eyesight,” she recalls. “It was about what was best for American Stage.
“Finding an experienced producing artistic director takes time. And it was about what was best for my health. Sharing such personal information and having it be so public was difficult for me – I was concerned that some might think I was trying to garner sympathy. But I had to let that go. For decades, my job had centered around anticipating the way people were going to think and react to something I was responsible for creating – how would it be received by the audience - the critics? Would they like it? I had to find a way to let that go, too. But how do you do that?”
Photo/Joey Clay Photography
Adaptation
Stephanie’s thinking has evolved over time since last August when the announcements were made. “I was not ready to let go of it. Now I am,” she says.
“As far as my health, right after diagnosis, I became hyper aware of every perceived change. I was in ‘Oh my God’ mode. Were symptoms progressing rapidly? I couldn’t tell. Looking back at the course of my symptoms over a lifetime has been an almost surreal journey. Symptoms occurred in such small increments over such a long period of time, that I realized I had actually been making adjustments throughout my entire adult life.” “Over time, I see things much more objectively and I’ve become less panicked. I realize my symptom progression is continuing slowly and I continue to adapt and to focus on the vision that I still have. I diligently keep up with the research. And now, over time I have even become quite optimistic.”
Acceptance
Though there is currently no treatment for RP in terms of medication or surgery, there are things that can help delay symptom progression. Avoiding stress is a big part of this, says Gularte, which is part of the reason she needed to step back from the theater. A supplement regimen of things like vitamin A and Lutein are important for eye health. Of course, avoiding eye strain as in reading and computer work is important, and it is best to avoid sudden changes from light to dark – another theater constant.
“There is promising and active research producing new information all the time,” says Gularte. “Even other research, like stem cell and genetic editing can be potentially relevant to RP.”
She continues to go through rounds of genetic testing to try and identify the aff ected gene specifi c to her case. That knowledge can lead to making treatment more of a possibility. “No one in my family appears to be affected,” she says, “but my parents are undergoing genetic testing as well to garner as much information as possible. The Foundation for Fighting Blindness has been a true resource and they are doing incredible work.”
The Next Act
“Theater is a part of me and always will be. It just won’t be my livelihood anymore.”
“It is important to me to be prepared for a new reality. That said, I have actually put a lot of time and work into preparations for my ‘next act,’” said Gularte. Over the years she has studied and received certifi cations in health coaching, personal training, energy management and leadership.
“I have started an LLC called The Energy Advantage, which integrates creative practices with health and vitality practices through consulting, training, and coaching programs to inspire leaders and businesses to thrive. I am already doing some consulting, but will be offi cially launching my website theenergyadvantage.com on June 30. I am excited to bring together my background in the performing arts, and my leadership and business experience together with my passion for health and fi tness to help others.” She plans to head to California this summer to spend time with her family and grown daughter and divide her time between here and there.
“I was lucky enough to meet someone very special right before all the uncertainty of COVID and my diagnosis. Amazingly, neither of those things mattered. He has been an amazing source of love and support and I think the best thing I can say is that, despite all the uncertainty, I’ve laughed an awful lot over the past year. I feel very lucky.”
Stephanie's Faves
Photos/Kara Goldberg
“Good People” (2016) was the first show I selected for American Stage, and I directed it. That’s when I really felt the connection to the local audience and to the community. And I still think it’s an important play about class in America.
I was so proud to be the PAD as American Stage completed August Wilson’s American Century Cycle with “Joe Turner’s Come and Gone” (2017). We were only the 11th theater in the country to have done so and it meant so much to me.
Photo/Beth Reynolds
I experienced the most pure joy with “Mama Mia” (American Stage in the Park, 2019) – which surprised me because musical theater has never been my specialty, but it was just so much fun and such an incredibly joyful cast!
