Haunted by ‘imposter,’ bedridden artist feels helpless, but keeps fighting

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Amy Stacey Curtis, 47, remains largely bedridden at her home in Lyman. Known for her solo biennial installations at abandoned mills across Maine – such as her 2014 version, below – the artist has suffered a mental break that has left her disabled and struggling to find answers. (Brianna Soukup/Portland Press Herald)

LYMAN — The Imposter was there to take a life, and Amy Stacey Curtis had one to offer.

For more than a year, Curtis has been fighting a demon in her head that keeps telling her to kill herself and showing her all the ways to do it. She calls the source of those images the Imposter, an intangible entity that has hijacked her brain, derailed her life and created chaos where once there was order.

She’s seen numerous doctors and specialists and undergone brain scans and medical tests. She’s been prescribed eight antipsychotic drugs, and twice in the past 12 months, she’s been hospitalized in psychiatric wards.

Nothing has worked – although she’s still alive. So far, she has kept the Imposter at bay.

Curtis, 47, is one of Maine’s enterprising contemporary artists, who transforms physical spaces with three-dimensional artworks that change people’s perception of that space. She practices what is known as installation art, and for 18 years, from 1998 to 2016, Curtis created nine large-scale, interactive exhibitions in nine empty mills across Maine. She called it her “solo biennial,” and every two years with exacting discipline, she made new installations that explored such themes as memory, matter, time and space. Massive in scale, the intellectually ambitious project consumed all of her time and occupied much of her brain.

It was part of her larger personal effort to make sense of the world, to quiet the noise and create order out of chaos.

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When it ended, she had room in her life, and soon after, the Imposter started visiting.

“It’s as if my brain flipped a switch. If someone could just go in there and flip the switch back, it would all go back to normal for me,” she said. “I can’t see it or feel it. It’s more that I know that it’s there, and it continuously shows me these pictures of me killing myself.”

Curtis, who spends most of her time in bed at her home in Lyman under the care and watch of her husband, doesn’t think the Imposter presented himself because she was depressed about the conclusion of her project, which she was. She thinks he showed up because she made room in her brain for him. Her work is highly mathematical, intricate and detailed. When she relaxed her brain, the Imposter filled the void.

“I don’t feel that what’s happened to me is the result of finishing the project, like I am sad about it,” she said in an interview from her bed at home, surrounded by her two protective dogs. “I think it’s more that I kept myself distracted in the way that I did through my 18-year project. When I finished, my brain had space to do what it would do. It’s as if my brain said, ‘You can’t move on to the next thing yet. I need this space to do this thing.’ That’s what I think. That’s what my intuition is telling me.”

So far, answers have been elusive. She’s been diagnosed with suicidal psychosis, but that diagnosis hasn’t resulted in an improvement of her condition, and the drugs she has taken seem to have only made things worse. Curtis has developed an uncomfortable and uncontrollable side-to-side swaying and turning of her upper torso, described medically as tardive dyskinesia. It’s exhausting, she said, and has made her feel more isolated because her condition is physically awkward and sometimes makes other people uncomfortable.

She is tired and frustrated, and a recent appointment with a neurologist in Biddeford, which she had hoped would result in answers and a direction forward, left her and her husband, Bill, discouraged. After blood work, an EEG and an MRI of her brain, her doctor found no evidence of inflammation, abscess or a brain tumor. Lyme disease, lupus and Huntington’s disease have been ruled out.

“He thinks I have a form of schizophrenia and suggested a ninth antipsychotic drug,” Curtis said.

Her most recent neurologist, Dr. Peter Bridgman of Southern Maine Health Care Physicians Neurology in Biddeford, declined an interview to discuss her case.

SEARCH FOR A CAUSE

Her personal health advocate, Patricia Reis, a psychotherapist from Portland who has known Curtis more than 20 years, said Curtis’ case is desperate, urgent and sad.

Reis is not treating Curtis, but spoke to the Maine Sunday Telegram as a friend and advocate. She has conferred with some of her friend’s health care providers and is urging them to keep looking at a specific part of Curtis’ brain for even the slightest swelling, lesion or connectivity issue. Instead of taking more drugs, she thinks Curtis may be a candidate for transcranial magnetic stimulation, known as TMS, which forces electrical currents to flow to specific regions of the brain via electromagnetic induction.

Reis wants her doctors to “absolutely rule out” any physical cause of Curtis’ condition before prescribing a new drug. Together, they are searching for a neurologist who is familiar with TMS and is willing to look at her MRI. If they can rule out a physical cause, then they can go back to exploring a psychological cause, whether under the umbrella of depression or schizophrenia.

Dr. David MacIsaac, a licensed psychologist in New York and New Jersey and member of the American Psychological Association, said the Imposter that Curtis perceives is similar to the voices that people he has treated have described to him as hearing in their heads. MacIsaac has not examined her case and is not treating Curtis, and spoke generally about his experience working with and treating creative people.

Generally, deeply traumatized suicidal people can trace their condition to environmental factors, such as childhood trauma and family history. Artists who suffer from this condition often fill their lives with intense bursts of creativity, and when they finish a project, “there is some darkness there. If they have any sense of getting to the top of the mountain, it will be reflected in negativity,” he said, and those feelings of negativity “will attack you like crazy.”

Clinging to the negative “hones their skill to see how things could be better, they foresee problems that everyone else ignores, making them very valuable for those who have to introduce new and creative ideas,” he said. “This special gift of art could also be seen as a potential life-giving talent that we might suggest is a life raft.”

Curtis, who graduated from Massabesic High School in Waterboro, has chronicled her condition and her medical journey through a series of posts on her blog, The Artist Plan. She began blogging years ago, to help readers better understand her art. For the past year, she has used the blog to describe her condition. Her posts have drawn attention, concern and sympathy in the Maine art world, where Curtis is seen as a unique and pioneering artist because of the scope of her work and her level of sophistication.

Andy Graham, the former owner of Portland Color and an engaged observer of Maine art, has taken an interest in Curtis and her condition. He’s always admired her work as an artist because of “the rigorousness of her process. She always seems to reflect the desires and challenges of being human.” When she began blogging about her illness, he paid more attention. His older brother, Dan Graham, is a well-known artist from New York who has struggled most of his life with a difficult-to-diagnose mental issue, Graham said.

He sent her research about brain swelling, offering possible clues about the cause of her condition as well as its relief. Although her medical team has ruled out inflammation, Curtis isn’t convinced and appreciates Graham’s concern.

“I have this strong awareness of the difficulties of exceptionality and how unique people like Amy are,” Graham said, explaining his personal interest in Curtis’ condition. “I have enormous respect for artists, realizing there aren’t a lot of them and many of them lead difficult lives. The work they produce in many ways is an attempt to explain themselves to themselves, and I think that has been true of Amy’s work.”

He sees her desire to explain her condition as an extension of her desire, as an artist, to create order in a chaotic world. “Amy is an artist, and the process of sharing this terrifying spell reflects the same desire to reveal herself through her art. I am not surprised, and I am also really proud to know her,” Graham said.

HELPING OTHERS AND GETTING HELP

Curtis said she is telling her story publicly to help others. Her father killed himself when she was 7. Some people have been turned off by the blog posts, but most of the feedback she has received has been positive. “It’s been most helpful for people who have lost someone to suicide,” she said. “You have it in your head that it was a choice they made to take their life. Now I know it’s not necessarily true. Some people have written, ‘I have a whole other perspective of my father or brother or sister or child who took their life.’ Maybe it wasn’t something they could control at all. Maybe they had an imposter, too.”

William Low, curator of the Bates College Museum of Art in Lewiston, described Curtis as “truly an original thinker, interested in mathematical theories and how those are visualized and experienced as visual art. I think she is one of our significant contemporary minimalist sculptors. While her works can appear simplistic, they are deeply felt and considered, and reveal an artist who feels strongly about the value and traditions of art activation and experience through audience participation.”

Curtis recently won a $10,000 grant from the Samuel I. Newhouse Foundation, which supports artists with disabilities. The grant program is named in honor of Wynn Newhouse, who was diagnosed with multiple sclerosis in midlife. He died in 2010. As he became constrained by the disease, he worked to dispel negative perceptions that some people hold about those who live with disabilities. The artist grants grew out of that desire, said William Butler, a foundation consultant.

Curtis won the grant because of the complexity and ingenuity of her art, he said. “The value is in the art, rather than the disability,” he said. “We’re trying to support people who are doing good work, like Amy.”

When she read about the awards, Curtis wasn’t sure if she qualified. Most of the artists who have won Newhouse grants have struggled with lifelong disabilities. Curtis suffered emotional trauma as a youngster, but never saw herself as a disabled artist – then or now. “I asked my psychotherapist about it – ‘Is what I am going through a disability?’ She said, ‘You are completely disabled right now. You are in bed.’ She helped me understand what I am going through is a disability.”

In addition to the money, the award includes an exhibition in New York City in April, which will be attended by other artists who won awards. The gallery that is hosting the exhibition and gathering cannot accommodate Curtis’ installations, which require time and space to install. Instead, Newhouse will show some of her drawings. Curtis plans to attend the opening and reception anyway. She is eager to meet other artists, and feels inspired reading about them and their accomplishments. The award, she said, feels like an affirmation, and reminds her that she is not alone in her struggles. “It feels like, yes, I can do this,” she said.

The Bates museum will show her work in the fall, in an exhibition of drawings titled “Time and Place.” It will open in late October.

BOUND TO HER BED

The Newhouse money comes at a good time. If this were a typical year, Curtis would be teaching a professional development course for graduating MFA students this semester at the University of Maine in Orono, her alma mater. Her husband, a structural engineer, cannot work with the same consistency as he has in the past because Curtis requires supervision and care. A crowdfunding effort has raised more than $17,000, enabling them to stay in their home and maintain their lives. The Newhouse grant buys them more time to figure out their way forward as they search for answers to Curtis’ condition.

She has been bed-bound for six months and is constantly fatigued. Staying in bed is a way “to make everything seem a little less overwhelming,” she said. “Just to sit and be is really hard. I haven’t been able to do any sort of relaxation, or anything like that.”

She attended an art opening at the Center for Maine Contemporary Art in Rockland this month, and enjoyed getting out and seeing people. But those outings have been rare.

Curtis and her husband live in a well-kept house on Clarkwoods Road in Lyman. They moved here in 2006, attracted to the quiet rural setting. A picture window facing a snow-covered field is covered with get-well cards. On the walls of their home hang dozens of pieces of art they’ve collected, often through barter with other artists.

While their home appears tranquil, it’s been anything but since the Imposter showed up almost exactly one year ago.

“Someone has to be with Amy all the time,” her husband wrote in an email. “When she is left alone, the Imposter knows she is alone and wants to make her end her life during that time. If I have to go somewhere for errands or whatever, I either take her with me or drop her off at my parents’ or a friend’s house.”

He has hidden all the knives and anything else that Curtis might use to harm herself. She has described 20 ways she can end her life with things they have in their home. When he prepares a meal, she goes outside and up the driveway so she can’t see where he’s hidden the knives or hear the doors or drawers that he might open to retrieve them.

Her husband works when he can, from his home office. “Mostly, it is just hard for me to concentrate to get much done,” he wrote. “I can’t focus on my work because I have to be aware of Amy at all times. It’s been very hard, but it’s what we have to do right now.”

Over the past year, they’ve developed a routine that begins with her alarm going off early in the morning so she can take her medicine. Bill takes out the dogs and makes breakfast, and she generally goes back to sleep until late morning. He works upstairs while she sleeps downstairs. When she wakes again, they have lunch.

“I usually have to make this for her, but sometimes she can do this herself,” he said.

While she is awake, Curtis spends time on Facebook, which is essential to her feeling connected to her friends and family in Maine and elsewhere, and then it’s back to bed for much of the afternoon.

He works while she sleeps.

“At night, we eat dinner in the bedroom,” Bill said. “We eat stuff you can just heat up. Amy only uses plastic spoons and forks to stay safe. My parents and sister give us food a lot, which is a big help. I try to do more work at night, especially if I have a deadline.”

FACING THE PAST – AND THE FUTURE

Since the mid-’90s, Curtis had worked to heal from childhood trauma, which she says included sexual, physical and emotional abuse, as well as her father’s suicide. She went through 11 years of counseling, several years of healing body work, and nearly a year of intense eye-movement desensitization therapy to recover from depression and complex post-traumatic stress disorder, or C-PTSD.

Looking back, she sees that her 18-year art project might have been an unconscious effort to keep herself busy and a way to set aside her trauma and “things my mind felt I wasn’t ready to face.”

Still, when her final mill installation closed at the end of October 2016, she felt good. “I was happy, and free from the heavy weight of my past,” she wrote in her blog. “However, I anticipated I’d have some sadness around finishing my opus.”

She admitted as much in an interview with the Portland Press Herald/Maine Sunday Telegram that fall, telling the paper that she was “excited, freaked out and sad” about the conclusion of her 18-year project – and curious about how her life and art would change without her “solo biennials” to guide her and provide order in her life.

She struggled with depression that winter. By the following February, she was back in her studio starting new work and feeling what she described as a lingering “veil of sadness.” On March 2 of last year, she decided to talk to her primary care physician about taking an antidepressant. Less than a week later, the Imposter showed up.

She described it in her blog:

On March 8, 2017, a larger part of my mind became determined to end my precious life. It set out to end all I had worked toward, to end my time with my beloved husband and family, to end myself, and to end my chance to continue to make all I could make as an artist.

This suicidal compulsion was not something I could control, nor something I wanted to have happen. This was a palpable ‘other’ in my brain, the imposter, and it held only this one goal – to end me.

The smaller part of my mind, the me, became determined to save my life, to do all it could to sabotage this larger part of my brain before the imposter could take over, take hold, and drive my body to do the unimaginable.

My husband Bill, begged me to fight, never left my side, and called my doctor first thing in the morning.

Curtis ended up at Pen Bay Medical Center in Rockport, because that was the nearest psychiatric center with an available bed. She was there 2½ weeks. She felt safe and comfortable at Pen Bay, and found a measure of relief.

“I feel safest in a psychiatric ward environment,” she said. “You have all those people who are making sure you are not going to do anything, and anything you could do something with is not in the vicinity.”

She describes the experience as surreal and almost like being in a minimum-security prison, “which made me feel safe. There are rules you have to follow, and you wear hospital clothes. You could bring your own clothes, but they had to be inspected so there was nothing you could hang yourself with. The laces were taken from shoes, pull strings taken from sweatshirts. I found a lot of safety and security in that. I am a patient person. I never complained.”

She was in a deep crisis when she arrived and had a plan to kill herself within a few moments of her arrival, and told the staff as much. ” ‘I am a very creative person,’ I think I said I was a sculptor because I didn’t think they would know what an installation artist is. ‘I have a plan,’ ” she told the staff. ” ‘I cannot be left alone.’ ”

She spent most of her time at Pen Bay in a common area, coloring. She can find humor in aspects of the experience, and compared it to an artist residency. “All the patients, we became a community and supported each other. When it was time to eat, we all came together and shared how our work was going. It was just like a residency: ‘How is your work going.’ It was crucial to talk about that with your peers.”

She was hospitalized for a second time, for nine days in August, at Spring Harbor Hospital in Westbrook.

The hospitalizations occur when Curtis feels like she is close to acting on the urges of the Imposter.

“I can so easily see how someone could lose this battle quickly,” she said. “I’m a fighter and have been through a lot already, and have had a lot of counseling. That’s why I have survived this. I have fought it for a year now.”

And so she searches for answers. She lies in her bed, surrounded by her dogs and supported by her husband and friends. Every other week or once a month, she writes a blog about her situation, to let people know how she is doing.

It’s her way of connecting, and also a way for people to connect with her. She loves hearing from her friends, who leave comments on her website. “It bolsters my spirits,” she said. “For me, it helps me feel like I am still part of the community. Bill reads the comments, too. The other day he told me, ‘I am really glad that you are reading all these comments. These are all the things I want to say to you, but it’s hard for me to find the words.’ Every time he reads them, he cries. This is all so overwhelming.”

Curtis wants to live and she wants to make art again. She wants to get out in the world, resume teaching and go to openings. She wants to see her friends.

For now, she would just be happy if the dyskinesia stopped because when she does venture out with her husband, people treat her differently. They don’t know what to say.

“It’s heartbreaking to people. It’s sad,” she said. “They want to do whatever they can to help, but no one knows what to do or what to say. Everyone feels so helpless.”

Bob Keyes can be contacted at 791-6457 or at:

[email protected]

Twitter: pphbkeyes

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