NUESTRA HISTORIA

A COMMUNITY OF VOICES THAT
CANNOT BE SILENCED

WHEN Ale Serpas found out that she had a brain tumor, the experience that followed became one of the most important lessons of her life. Following a 12-hour surgery to remove the tumor, Ale contracted a severe case of pneumonia that paralyzed her left vocal cord. Even before relearning how to eat and talk, she lay in a hospital bed for months without being able to swallow her own saliva.

She was fortunate to have a voice therapist who not only taught her to speak again, but also helped her to explore what it was that she really wanted to say with her new found voice. It was more than speech therapy; it was therapy for her soul that helped her say many things about which she had remained silent before.

A few months after her surgery, while roaming through a local bookstore, Ale came in contact with mandalas for the first time. She was captivated by their intrinsic beauty and thought that if she had known of these spiritual symbols as she lay in the hospital bed with little to do and much time to pass, she would have found meaning and purpose during the arduous days of her recovery. This was how, unlike anything that had happened to her before, Ale found a hobby that awakened the creative spirit that had remained dormant in her for too long.

For Ale, making mandalas was cathartic. It becaVme her way of finding solace amidst the mute, unspeakable hardships of her life after surgery. The beautiful geometric forms of Buddhist origin symbolize the evolution of the universe while representing totality, structure, center, unity, equilibrium, and the search for peace.

“Your voice is like your fingerprint”

“Your voice is like your fingerprint,” Ale says. “It is unique to each person. If you loose your voice, and it returns, it is never the same.” With this thought in mind, mandalas became Ale’s outlet - a way to communicate her thoughts and feelings while unable to speak. Starting with coloring books, she later designed and painted her own mandalas and gave them to friends, family, and acquaintances as gifts. And this was just the beginning. Mandalas became more than art, more than therapy. In mandalas Ale discovered an opportunity to make a contribution by helping people in situations similar to her own.

She began researching voice disorders, their causes, and the people in El Salvador who suffer from voice paralysis and similar conditions. A specialist named Dra. Santamaria introduced Ale to the case of Ramón Juarez. After coaching high school soccer at Liceo Stanford in San Salvador, Ramón returned to his hometown of Tonacatepeque to teach physical education at the Centro Escolar Benjamin Bloom. He trained kids, coached soccer teams, and worked with the mayor’s office to organize tournaments.

“Losing your voice is the hardest thing that can happen to a human being. Having voice therapists in our country is very important because they can prevent surgery and the loss of life during surgery.

The best thing is to have therapists in our country and for doctors to refer patients so that everyone with voice disorders can benefit from them.”
- Ramón

“I’ve pretty much always lived a life oriented to kids,” he says. “But seven years ago I began having problems. My voice deteriorated and practically left me without the ability to speak. The doctors found that I had lump on my vocal cords. I went to a therapist that the doctors recommended; otherwise, I would have had to get surgery.”

Ramón learned that the lump developed as a result of using too much force when speaking, from talking too much, and from abusing his vocal cords while yelling instructions to the kids during soccer games. “When I lost my voice I felt completely let down because when you’re unable to speak, you’re unable to communicate and that is perhaps the most difficult thing for a human being to deal with.”

Thanks to the therapy, Ramón learned to manage his situation and was able to recover. “Our voices are a gift from God that we must protect like we protect our hearts, our spirits, our eyes, and our teeth,” he says. “I am grateful to the people who gave me the opportunity to say this. And I invite everyone to support projects like this one so that people with voice disorders can get the care they need to return to their lives and their families as soon as possible.”

Since her own experience with voice paralysis, Ale Serpas has turned mandalas into a means of supporting and empowering El Salvador’s community of people with voice disorders. Through her project, Mandalas para Voz, the sale of mandalas printed on various materials and products has become a way to pay for the health care that people with voice disorders need. The mandalas also have become a way to finance training opportunities for healthcare professionals who want to specialize in voice therapy in a country with few voice therapists.

By telling the stories of patients and voice therapy practitioners, Mandalas para Voz is raising money and public awareness to address El Salvador’s lack of voice therapy training and treatment options. Through Mandalas para Voz and its community, Ale is helping people reclaim their voices and their lives. “We transform a hobby into a purpose that allows us to change how we experience life,” she says. “We get to help people find their voice and the message they want to share.”

On a seemingly ordinary night in April 2013, just three months before graduating from high school and embarking on her new path as a university student, Vale Molina’s life changed forever. Returning home after an evening out with friends, Vale realized that she had left her cell phone and asthma inhaler behind. “I decided to take my car to pick up the things I’d forgotten. That decision changed my life.” It was the first rainstorm of the year. Water inundated the highways. Vale lost control. “My yellow Volkswagen slid, spun out, and crashed against a post on the driver’s side.” Vale’s head injury became inflamed and her brain swelled with fluid. The doctors called it cerebral edema. They decided to put her in a coma for three months and tried to reduce the swelling. The inflammation caused a hemorrhage that resulted in damage to a part of the brain that controls motor skills. Even today, nearly five years after the accident, Vale is unable to write, walk, or talk as she once did.

“The most frustrating thing about losing my voice was trying to communicate and make myself understood,” Vale says. “This has been one of the most difficult things throughout my recuperation process.” She adds that relearning to speak is just as challenging as relearning to walk. But unlike many people with voice disorders who have not been able to find voice therapy specialists in El Salvador, Vale has been able to persevere and prosper with the professional support and friendship of her therapist, Ahni.

“If a guitar has no strings and makes no sound,
is it still a guitar?”
- Vale

Sitting in her office at San Salvador’s Centro de Audición y Lenguaje, Anna Hilda, or Ahni for those close to her, talks about her origins and what motivated her to become a therapist. “Since high school I have always attended the Special Olympics,” she says.

“Working to help others has always been my calling.”

Ahni works out of this office in the mornings, spends the afternoons providing private therapy sessions to patients in their homes, and continues to see Vale five times per week. “It’s about being compatible in personality and emotions – not just technique,” Ahni says about the importance of forging meaningful relationships with her patients. Ahni and Vale began working together two years ago, after Vale’s former therapist moved away and wanted to leave her post-accident recovery in the hands of a trusted professional. The bond between them was instant and Vale’s recovery has rapidly progressed ever since.

Ahni was born in San Salvador and got her undergraduate degree in special education. But when she decided to specialize in voice therapy, she went to get training and qualifications in Mexico because of the lack of opportunities in El Salvador.

Upon graduating, Ahni moved back to San Salvador and began working at the Centro de Audición y Lenguaje. Her passion for the work is obvious. “I came to learn,” she says. “We get patients from all over El Salvador with all different kinds of communication disabilities.” She has provided therapy to patients young and old who have been diagnosed with voice disorders.

Common causes of voice disorders, she says, include vocal abuse, cerebral vascular accidents (strokes) that often result from traffic accidents and an insufficient blood supply to the brain, and vocal cord paralysis resulting from genetics and surgical interventions.

Ahni explains that another of the most significant causes of voice disorders is a lack of information. When someone feels that they are losing their voice, they start making more of an effort instead of using the correct techniques. Others turn to doctors who oftentimes treat the patients with medication for a long time instead of referring them to specialists.

Following an unusually long cold, Frida Candray, one of Anhi’s ongoing patients, decided to see a doctor and understand the cause of her discomfort. An endoscopy revealed that she had a lump in her throat which needed to be removed immediately. Her condition post-surgery came as a surprise: she could no longer speak correctly and her taste buds failed. That’s when the doctors referred Frida to Ahni, with whom she continues working today.

“When someone loses their voice, they feel as if the world comes down upon them.

It’s important to have voice therapy because this recovery is progressive – you don’t magically get better after a surgery.

So if everyone had access to therapy since the first symptom in a preventative way, I think our country would be better off.”
- Frida

“We therapists are the channel for that information,” Ahni adds. “Even the doctors themselves sometimes fail to detect voice alterations. They give antibiotics but don’t tell the patient to try voice therapy, which is better than medication. There are patients who say that they have taken medication for a long time but then they come here for a month and already feel much better.”

Sometimes doctors don’t even know what a voice vtherapist is. And this is why the lack of voice therapy specialists in El Salvador is such a big problem for people with voice disorders. “Graduates in special education - that’s our title,” she says. “But what has truly certified us are the years of working and learning all of this.”  If voice therapy were a formal career path that healthcare practitioners could take in El Salvador, she says, there would be more specialists and the practice of voice therapy would be better known and more widely accepted.

Common causes of voice disorders, she says, include vocal abuse, cerebral vascular accidents (strokes) that often result from traffic accidents and an insufficient blood supply to the brain, and vocal cord paralysis resulting from genetics and surgical interventions.

“It's important to have specialized therapists in El Salvador because rehabilitation is essential to oral expression, where you express your ideas, your opinions, your emotions. Not being able to do this is frustrating.” Because of the lack of voice therapists, Ahni has had to deny therapy to patients who need it because she doesn’t have enough time to help everyone. She has searched for other voice therapists but has struggled to find them.

When Delmy Hernandez learned that she had a lump in her throat that needed to be removed, the doctor told her that the surgery would be an outpatient operation and that she would be able to leave the same day. “But that’s not how it happened,” she says. The operation began at 7am and by noon she still hadn’t left the operating room.

“I had respiratory failure and excessive blood loss so they transferred me to the intensive care unit.” While saving Delmy’s life in the operating room, the surgeon damaged her recurrent laryngeal nerve, which caused her vocal cords to fail. For six months Delmy couldn’t speak, and for a year she was unable to breathe. She had to sleep upright and passed every moment of every day in a sitting position.

Common causes of voice disorders, she says, include vocal abuse, cerebral vascular accidents (strokes) that often result from traffic accidents and an insufficient blood supply to the brain, and vocal cord paralysis resulting from genetics and surgical interventions.

One doctor in particular recognized how much pain and suffering she was experiencing and proposed experimental surgery - a posterior cordectomy. Even though the vocal cords the doctor removed were already dead, and even though her voice had recovered somewhat since the previous surgery, going through the whole ordeal for a second time again resulted in Delmy losing her voice.

When she returned to the hotel, where she had worked as a nurse, Delmy found herself with Ale Serpas who wanted to help once she learned about everything that had happened. Ale brought Delmy to a doctor in Guatemala. After extensive assessment, the doctor determined he couldn’t do much for her and that the only way to regain her voice would be through voice therapy. “So I went to voice therapy in El Salvador,” she says. “It’s important that there are voice therapists here because, as professionals, they teach us to speak in a way that improves the quality of our future lives.”

“When the doctor tried to save my life, he damaged my laryngeal nerve. And that’s when I lost my vocal chords.
Having a therapist changed my life because everything is different now that I have my voice back.
Although the process has been slow and I’ve had to be very patient, I did it and I feel very happy.”
- Delmy

Delmy’s success story became Ale’s inspiration; if she was able to help one person then she could help many more. “My encounter with Delmy gave wings to Mandalas para Voz,” Ale recalls when asked about the origins of this fruitful project.

It is easy to see the enormous impact that Mandalas para Voz can have for patients and practitioners alike. El Salvador needs more specialized professionals to provide voice therapy to Ale, Vale, Ramón, Frida, Delmy, and the many others with voice disorders. Mandalas Para Voz is working to improve the public’s awareness of this issue. And it is raising money through the sale of mandalas and other products to finance the training of many more voice therapists in El Salvador so that everyone here who needs voice therapy can get it.

MISIÓN

HABLAR A TRAVÉS DE LA EXPERIENCIA. De los mandalas aprendimos que la evolución parte de un punto céntrico dentro de nosotros y que desde ahí podemos lograr muchas cosas. Queremos compartir nuestras lecciones de vida con todos los que vivan algo similar y darles muchos recursos para salir adelante y evolucionar.

VISIÓN

CREAR UNA COMUNIDAD DE VOCES QUE NO SE PUEDEN SILENCIAR. Nos imaginamos un mundo lleno de voces que se han negado callar y que han seguido gritando y cantando y diciéndole al mundo lo mucho que vale la pena seguir luchando por lo que tenemos que decir.

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MANDALAS PARA VOZ

CONTACTO

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info@mandalasparavoz.org
95 Av. Norte, #624
San Salvador, El Salvador.

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