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Darkness Invisible

Radiant, generous and full of ideas, Nadia Trinkala played the roles of artist, entrepreneur, healer and friend so well that few knew she was being worn down by a mysterious lifelong disability

by Erin Pihlaja on June 20, 2012 · 2 comments


Nadia Trinkala photographed by Ray Felix

Nadia Trinkala and the other schoolchildren gathered around the instructor on the playground and waited excitedly for the new game to be revealed. Like most young children, Nadia was eager to please. When the teacher called out a set of instructions, the throng of excited children ran away quickly, scattering around the playground to complete their task. As her peers began to follow the requested steps, she alone stayed rooted in place.

It wasn’t until she was in her 20s that she told her mother what had happened that day. “She was probably 7 years old,” says Dianne Trinkala. “She said that she didn’t understand what the teacher had told them. That was the start of her feeling kind of slow. I asked her why she didn’t tell us. She didn’t know.”

This was in the mid 1970s, when Nadia Trinkala was a bright child earning good marks in an elementary school in Brunswick. She had blonde hair, bright green eyes and a generous smile. By all accounts, she was very clever. She wasn’t a troublemaker in school; if she had called attention to herself, her story might have taken another direction entirely. “I used to say, ‘Nadia pay attention,’ but that’s what parents say to young children,” says Dianne Trinkala. “We didn’t know she had a processing problem, she didn’t know. She had to study harder to get good grades; we just didn’t realize how hard it really was. As she got older, it got worse.”

Almost four decades after a young Nadia Trinkala stood by herself, confused on the playground, her body was found on the banks of Peebles Island, a state park nestled between the Mohawk and Hudson Rivers, part Albany and part Saratoga counties. Hikers discovered her body laying next to the turbulent waters on Friday, April 8, 2011. She was 44 years old.

Living a mother’s worst nightmare, Dianne Trinkala identified her only daughter’s body at a morgue in Albany. “She was wearing her winter coat, and her sunglasses were on top of her head,” she says. “It looked like she had just died. She looked so peaceful.”

If Nadia Trinkala was finally at peace, there in the cold morgue, what battles had she escaped from?

“It’s fairly recent, there were maybe early studies from the ’80s, but even the concept of Central Auditory Processing Disorder didn’t come into play until more recently, maybe in the late’90s,” says Maria Lifrak, a New York state licensed psychologist who is also certified by the American Board of Professional Psychologists as a neuropsychologist. Lifrak has been the director of Comprehensive Neuropsychological Services in Albany for 27 years.

“Not much at all was available 20 years ago,” Lifrak says. “This whole area of brain functioning—it’s developing now, but it’s very complex. We’re just kind of scratching the surface at this point.”

Nadia Trinkala was tested for CAPD sometime in her 20s, when there was much less understanding of the disorder and fewer resources available for it than there are today. We’ve grown accustomed to hearing cases of developmental disorders such as attention deficit disorder and dyslexia in school-age children, but it’s not always easy to spot the signs, and since CAPD is still in early stages of study, the task of narrowing down a diagnosis can be problematic.

“If a child is in school and they are obviously having difficulty learning, then the question is, ‘What’s the problem here?’ ” says Lifrak. “Is it an attention deficit disorder? Is it an intellectual problem? Gradually we’ve been able to see that there are some kids where it isn’t either one, it’s that the child isn’t processing auditory information correctly or completely. It’s not always easily identified; it might take some trial and error to figure it out.”

Once it is suspected that a child has CAPD, tests are given to determine how well the child can hear. “If that’s ruled out, then you go to brain functioning. The brain is a very complex organ, there’s a lot of different structures and there’s different levels of processing and so forth,” says Lifrak.

“Generally speaking, it’s difficult to determine at what point is the central auditory process not working right. Is it in the analysis of the complicated sound patterns, or is it in the understanding of the verbal language? There are many different elements of what could be the central auditory processing deficit. An audiologist, and sometimes a speech therapist, will perform very specific tests that pinpoint where the processing is impaired.”

This tricky process is what the field of CAPD study has evolved to today. Back when 7-year-old Nadia Trinkala stood alone on the playground, her child’s mind didn’t understand why she could not figure out what her teacher was saying. It was being different from the other kids that left a mark on her impressionable being, and she began to hide the shortcomings that caused her pain.

“We’ve seen this with people who have dyslexia, or any kind of impairment like this,” says Lifrak. “They try to hide it, because it feels like a stigma, that starts when you’re a child. Children always want to be at least as good as everyone else, and if they’re not they try to hide that. Even the act of hiding it is a real struggle. A child would be aware that everybody else was understanding and they weren’t. So first of all a child might think, ‘I’m stupid.’ That’s often reinforced by other kids: making fun and calling names. It can be a very painful experience emotionally for a child to have this problem, especially if it isn’t identified.”

“When you knew Nadia, you didn’t see it unless you knew where to look,” says Dianne Trinkala. “Even if she didn’t understand what you said, she covered it up so well. If you were telling her something that she really had to absorb, she would absorb it later, maybe, but not while you were saying it, not if you gave her too many facts at once. I didn’t realize until a few years ago that she wasn’t absorbing probably half of the things I told her.

“Six months before she died, I told her a real-estate story, and it had different components,” continues her mother, a realtor. “She said, ‘Mom, I didn’t get one word you said.’ That was the first time in her life that she told me that. Even when she was admitting it in her later years, people didn’t believe her anyway. It was hard to believe because she was so good at covering it up. She had more of a disability in processing than we even know.”

Nadia Trinkala was known by friends and family for her flamboyant but well-crafted fashion sense, and around 1995 she started showing a flair for vintage furnishing and collectibles as well. She met Nick Metropolis, an iconic arts and furnishings dealer from Los Angeles, through a mutual friend around the same time. Metropolis invited her to come to L.A. to open a store for him.

“Naturally, Nadia didn’t think she had any limitations. ‘I can do it,’ that was always her attitude,” says Dianne Trinkala. “She had a lot of determination. So, she goes out there and she starts a store. This was from scratch: It was a raw building, they had to do everything to it. It turned out great. Nick had the words ‘Princess Nadia’ across the walls.

Nadia Trinkala

“But you know what, she told me she was under so much stress doing that, she cried every day in the shower. Anything Nadia did, she did well, but it caused stress. It was stressful doing everything that she did, but if she was able to do it easily to an ‘8,’ she had to be a ‘10’ or a ‘12’.”

When Nadia returned from Los Angeles, she opened a series of her own stores, Trink 20th Century Furnishings, and art galleries. The stores were very successful. “When we opened the store in Cohoes in 2002, we opened the door and the building was filled,” remembers her mother. “It was a 3,000-square-foot space with an upstairs gallery. There were traffic jams; the Cohoes police didn’t know what to do. I don’t know where they came from, but she had a following wherever she went.

“She closed it at the end of the year. One day she was open, the next she was closed. One of her customers from Japan had offered to buy everything in her store if she closed it right away. They bought everything and that was it.”

The successful businesses did more than earn Nadia Trinkala the reputation of entrepreneur, they brought people together. Misty Lemay, a longtime friend of hers, remembers the first time they met. Lemay wandered into a Trink store with a pocketful of cash gained from pawning her engagement ring. Lemay was looking to start a new life, beginning with some new furniture. “I was in my late 20s. I wandered into her store wearing leopard-print sneakers, ripped stockings, a tutu, and my beloved Cure shirt. I remember the outfit because she loved it. I knew with no doubt the moment I met her that we were kindred spirits.”

Lemay and Nadia talked and joked as they piled eclectic pieces into Lemay’s truck. They exchanged phone numbers. “I said the most awkward thing as I was leaving,” Lemay recalls. “I told her, ‘We are going to be best friends.’ I knew it was going to be true, but it was a funny thing to say. We both joked about it years later.”

Nadia made friends with almost everyone. Even those who didn’t know her closely say that she made them feel like the most important person in the room. She had a charisma that attracted people, and a kind heart. “People would come into her stores and she would give them a job to help them out,” says Ray Felix, a friend of about 13 years who also met Nadia at one of her stores.

While the region celebrated the success of Trinkala’s stores and galleries, she still carried the burden of her disability and the issues that came along with it. “She made you feel like a rock star, like you were everything to her,” says Alana Matulis, who knew very well the struggles that her longtime friend went through. “There was no one more supportive or who rang my bell than Nadia Trinkala. She definitely was the best public-relations agent. She presented to the world what she wanted people to see. She was a very different person with each person she had a relationship with. There were very few people who knew all of the pieces.”

Trinkala’s public identity was so well-played that it was nearly seamless, and her gifts were so great that it was easy to focus on the positive parts of her. As another close friend, Jen Berkun, put it: “Her energy and her spirit outweighed her disability. Even people like myself saw her as the person she projected.”

Part of the frustration in living with a poorly understood disorder such as CAPD is that acquaintances typically have no idea what you’re going through, and often don’t believe it if you tell them; and medical professionals are prone to diagnosing the symptoms rather than the root cause.

“The major focus is sometimes on the emotional status of the person, which can also be upsetting—they know at some level that it’s not just emotional stuff, says Lifrak. “We see this with our patients who have brain injuries, mild brain injuries from car accidents and so forth. They go to medical people or other professionals, and they’re misdiagnosed with being some sort of an emotional or psychiatric problem, but they know that’s not the case. The doctors keep saying, ‘There’s nothing wrong with you,’ or ‘You’re fine, go back to work,’ or ‘You’re just a little depressed—that’s it.’

“The patient feels like they are not functioning the way they’re used to, and the experts are telling that they’re fine. That’s crazy-making.”

“I said to her just before she died, ‘Nadia, just accept your disability and work with it. If you didn’t have a leg, you’d have to work with it,’ ” says Dianne Trinkala. “She said to me, ‘Mom, if I didn’t have a leg, everyone would see my disability. I told her, ‘Nadia, you’ve been hiding your disability your whole life. How would anybody see it? You didn’t even know what kind of disability you had until you were in your 20s.’ It was so frustrating, and then when she would tell people they wouldn’t believe her.”

“A highly functioning person could be suspect to others,” says Lifrak. “They look perfectly normal and they seem to interact in a perfectly normal fashion—with the exception of not comprehending what other people are saying or comprehending only very straightforward factual statements. They might be watching your face carefully the whole time to try and get some information from lip reading or your facial expressions. It can be very embarrassing and anxiety provoking.”

Living with CAPD, and trying to hide it from others, is an emotionally exhaustive process. “There can be trouble with a job situation unless you’re doing something that’s very nonverbal, but even then you still have to be able to understand instructions that are being given to you,” Lifrak says. “You’d have to be able to say that you had this auditory processing problem, and needed things to be written down or explained in a simple way.

“A lot of people try to hide it. Then they feel isolated like they’re not in with the crowd or not able to be as easily social as somebody who doesn’t have this problem. Unfortunately, depression sets in; to not be understood by others, that’s what is so painful, because it’s like you are living this problem all by yourself.”

Those who didn’t know Nadia Trinkala closely had no idea that the young, vibrant woman was struggling. And why would they? Her accomplishments and her successes were impressive, and she was known as the girl who could connect anyone with the right person; someone who could, and did, help people in need.

Dianne Trinkala photographed by Erin Pihlaja

In addition to her eye for art, another element appears over and over on Trinkala’s resume: She was drawn to work that revolved around those with disabilities. In the early ’90s she worked for Residential Opportunities in Cohoes, and the Arc in Troy. Both organizations provide resources for those with developmental and intellectual disabilities. From 2006 to 2010, she worked or volunteered at similar area organizations such as the Center for Disability Services, Questar III Rensselaer Education Center, and Living Resources Corporation.

“She worked with people with disabilities ever since she was a teenager,” her mother says. “She understood them, and she worked with the autistic very well, but it took a lot out of her. It took a lot of energy, and she gave a lot of her energy away, helping other people.”

Her friend Ray Felix saw her devotion to assisting people living with disabilities. “She really was, still to me, a brilliant shining entity,” he says. “The first time she took me to visit the Carriage House, she walked in and everyone lit up—she clearly was someone who understood them and had complete compassion for them.” The Carriage House Arts Center is an organization that provides art instruction to people with disabilities. Trinkala, herself an artist, was at home in this environment.

“She took me to a nursing home,” recalls friend Jen Berkun. “She could just bring the life out in the elderly. She would ask the women silly questions like, ‘How’s your boyfriend?’ They got such a kick out of her. She’d ask the men to dance and they would. She loved them and they felt it. She was also so good with disabled kids. Kids who weren’t known to be verbal responded to her, sometimes even verbally. Kids with sensory issues would calm down around her. She vibrated on a different level than the rest of the world. If there was anyone I’ve ever known who wasn’t living on this plane completely, it was her.”

Only a few years before her death, Nadia Trinkala seemed driven by a purpose that she was only just beginning to realize. She knew all too well the impact of living with a disability, and she knew the pain from the wounds a child bears when they feel as though they are different from their peers. She was an artist, as well as a healer, and was drawn to helping those in need. While she had spent years working in centers dedicated to people with disabilities, she desired the accreditation required to bring her love of art to those in need in an even more dedicated setting.

In 2009, she enrolled in the Creative Arts Therapy program at the New School in New York City. “She was excited, but really nervous, about going to New York City to get this certificate,” says Felix. “Going back to an educational setting was hard for her. When I moved her down to Brooklyn, I stayed a whole week to help her acclimate. I remember walking her to her first day of school. I knew how much of a struggle it was, but she mustered all of her strength to go through with it. She felt it was important; on a certain level [she] did it not just for herself.”

Friends were proud of her for taking on the challenge, but they were also worried. Alana Matulis and her husband, Jesse, pleaded with her to consider other options. “We felt like the energy in New York City was destroying her,” Alana says. “She withered down there. We saw her dying—she aged 10 years in two.”

“She wanted to fix everything—literally, no kidding,” says Berkun. “She was determined. New York City was an energy drain for her. She was surrounded by so much negativity and anger, and she always saw people’s needs, but didn’t know how to shelter herself.”

“The New School was good—she learned a lot,” says Dianne Trinkala. “But I think it took a toll on her health. It was stressful; she didn’t think she would be writing any papers in this program but there were four of them. [Her father] Mike read the psychology book along with her and he saw for the first time how hard it was for her to understand these things. She could do it, but it took time for her to process it. She’d say, ‘I think I’m going to take a nap,’ and she’d go lay down for 10 minutes and then get back to it. It was exhausting for her to do things like this.”

With much effort, Nadia finished the rigorous program at the end of 2010. Her graduation ceremony was scheduled for May 2011, but she died before she got to see the certificate that she had worked so hard for.

Shortly before she died, Nadia Trinkala was coming to terms with her limitations. Even before she completed her schooling in New York City, she had toyed with the idea of a foundation called the Human Citizen Project. The motivating idea was to focus on the connection shared among human beings, not the things that divided them. She asked people, “What does it mean to be a human citizen?” She received positive feedback and thought of creating a facility complete with energy rooms where people with sensory issues could control the stimulation they received, along with other therapeutic practices. But as her ideas grew larger, she became more aware of the difficulties she would have.

“I just thought, well it’s something that you live with,” says Dianne Trinkala. “I never thought it was a big thing, but apparently as she got older, it got in her way more. She said, ‘Mom, how can I start a foundation? I can’t go into a meeting and understand what they’re saying. I’m going to have to take someone into a meeting with me so they can tell me what happens afterwards.’ ”

Instead, she found the Brown School in Schenectady. The school had launched the MindUP program, an educational initiative created by the Hawn Foundation. Created by actress Goldie Hawn, the foundation focuses on counteracting stress, depression, and violence among youth. According to the website, “MindUP is anchored in current research in cognitive neuroscience, evidence-based classroom pedagogy, best-practices mindful education, precepts of social and emotional learning (SEL), and guiding principles of positive psychology.”

“Nadia went to the open house at the Brown School in the fall of 2010,” says her mother. “Later when I e-mailed the head of the school, Patti Vitale, I told her Nadia had been there. When we spoke, she said, ‘That was your daughter? I remember what she wore. She was here first, she came at the very beginning and stayed to the very end. I was so impressed by the questions she asked, and the only thing I could think of was that I wished parents asked those types of questions.’ “

After that open house, Nadia excitedly told everyone about her discoveries. She felt that she had found a school that helped children cope with difficulties in their early years, something that she had desperately needed and couldn’t find.

“I told her that of all of her ideas, working with the Hawn Foundation was doable,” says Berkun. “I would have liked for her to have met Goldie Hawn to express her visions. [Hawn] was somebody who could have made them happen.”

Even though there seemed to be more on the horizon for Nadia Trinkala, she was exhausted. In addition to her disability or possibly because of it, she had suffered for years from bouts of anxiety and depression. “She hated the medication because she felt like it killed her creativity,” says Dianne. “She said that she couldn’t think on it. It was amazing how it just numbed her. She said, ‘Mom, I can’t cry. I take the medication but I can’t function, what good is it?’”

Sharing her time between New York City and Cohoes, and struggling with a deep and overwhelming depression, Nadia made the decision to move back to Cohoes for good. “In the two weeks before she died, she would wake up in the morning and she would say, ‘Mom, I’m shaking. I’m shaking so much inside.’ I asked her why but she didn’t know. She couldn’t stop the shaking.”

Jen Berkun found a psychiatric nurse practitioner who agreed to see her at 9 PM that Tuesday. Dianne Trinkala picked her daughter up for the appointment, which lasted three hours. “She had Nadia come in for one hour, then Nadia called me in and said, ‘Mom, I’m never going to understand this, it’s too much for me to absorb,’” Dianne says.

The practitioner told them that Nadia needed to be on medication for the rest of her life. She gave them two prescriptions for anxiety and depression. “I don’t think at that time that Nadia got the full impact,” her mother says. “The doctor said that she could either send Nadia to the psychiatric ward now or that she could go home with me. I thought, ‘Oh that’s fine, she’s coming home.’ Nadia seemed fine because she was smart and clever and could almost fool anybody, and she did for all those years.”

They left, and it became apparent that Nadia was still absorbing what the practitioner had told her. “We went to the car and she was upbeat,” says Dianne. “She said, ‘Now what did the doctor say?’ I told her some of the things, she told me her plan of action, and she was really upbeat.”

The next day Nadia had an appointment with her regular psychologist. Her father took her to that appointment, and afterward they stopped to fill the prescriptions that she had gotten the night before. The label on one bottle read, ‘anti-psychotic.’ She responded very badly to those words. She told her father that she didn’t want to take them. Together they drove to Cohoes to get her car.

“She told her dad to leave the medication in his car because she would head over to our house in a little while,” says Dianne. “When he got home, the phone rang. It was her. She said that she wanted to stay at her place with her kitties that night.” It was Wednesday night.

On Thursday morning, her father called her to see if she was coming over. “She was really upset, she was crying,” her mother remembers. “Mike doesn’t panic, but he did. He handed me the phone. I said to her, ‘Nadia you have to go on the medication.’ She calmed down and said she would probably come over in the afternoon.”

It was 11:30 AM. When Dianne got off the phone, her husband decided that he would drive to Nadia’s apartment to bring her the medication. When he got there, she, and her car, were gone. “Because of the way that she was that morning,” says Dianne, “I called around and asked everyone, ‘Have you heard from Nadia?’ No one had. We never heard from her again.”

At 5 PM the family was able to put out an all-points police bulletin on their daughter. Her father drove to Peebles Island, as did some of her other friends, but they went to the Cohoes side of the park, where she usually parked. The police eventually found her vehicle on the streets of Waterford, leading her loved ones to believe that she didn’t want to be found. Her phone was left in the car, which also seemed to confirm their suspicions.

It was Friday when Dianne Trinkala heard someone at her door. As she climbed the stairs toward the entrance she could see through the window that someone standing there. “As soon as I saw the gray uniform I knew right away,” she says. “I said, ‘It’s Nadia, right?’ I thought it was the state police, but it was the park authorities. They had her keys and her pocketbook and they said, ‘We’re not positive it’s her.’ I said, ‘You have her keys, you have her pocketbook, you found her car, and you’re not positive?’ I really expected it at that point.”

It is clearly painful for Dianne Trinkala to recount these moments. She is quick to flash her smile, similar to her daughter’s, but her eyes hold a sorrow that belie her positive and warm demeanor. She and her husband joined a support group specifically for parents who were grieving the loss of a child. They went to it for a while, but it didn’t seem to help. They walked the trails of Peebles Island in an attempt to get some closure.

“The man who did her autopsy said she went by the water,” Dianne says. “We walked it to see if we could figure it out where she was, if we could get some feeling. I think we found the spot. The water is very turbulent there.”

“WhenI found out,” says Jen Berkun, “it was as bad as it gets. I laid on floor, screamed and pounded on it. She was more like my sister than a friend. This loss has been so consuming. In some ways it’s hard to remember what it was like before she died.”

Jen Berkun photographed by Erin Pihlaja

Other friends have expressed similar sentiments. “I would have chained her here on Earth rather than to have had her ripped away,” says Lemay. “I feel as if I have lost a limb or a part of my heart, and I am forever changed.”

The Capital Region was shocked. Nadia Trinkala’s Facebook page was flooded with posts. Every major local media outlet covered her death. Memorials were set up in her name. Friends, reeling from the news, organized a celebration of life ceremony at the end of that month. It was held at the Cohoes Music Hall, and by many accounts, the venue, which seats about 350 people, was filled. People spilled into the street, which the mayor of Cohoes had closed down to vehicular traffic.

“The whole celebration was magical,” says Dianne Trinkala. “My friend said there wasn’t a dry eye in the place, and I thought, ‘Thank God I didn’t turn around.’ I wouldn’t have been able to make it through.”

Those close to Nadia continue to hold events in her honor. In May, a silent auction was held at the Fulton Street Gallery in Troy, the proceeds of which benefited the MindUP Program. The people Nadia Trinkala had brought together over the years were still doing her work, even though she was no longer with them.

It’s been more than a year since some hikers stumbled upon the lifeless body of a woman that many now call ‘Our eternal butterfly.’ The grieving process has not been easy, but slowly the pain is growing more bearable.

“We have accepted that’s what she wanted to do,” her mother says. “ We say, ‘Darn you, Nadia! We don’t care if you were struggling, you should be here!’ But we understand that the struggle had gotten so hard that she probably couldn’t stay. She didn’t have the strength to pull it together.”

“The amount of work she did before she left—it was a lifetime of work,” says Jen Berkun. “She was brilliant in her own way. She was an idea machine. A few weeks before she died, I called her and told her, ‘You are going to fly like a bird—soar when this all over.’ I was overcome with this feeling like she was going to finally done with all of the struggles she had. I told her, ‘You are going to break free, you are going to be free.’ I had no idea what it meant at the time.”