Nick K. doesn’t hesitate to talk about his illness because he’s better now. After years of working to overcome the voices and confusion, he wants to share his story with others, to inspire, educate, and provide hope for those who are suffering from a mental illness.
For most of his life Nick has suffered from schizoaffective disorder, an illness that left him unable to work, unable to take care of himself, sometimes unable even to tell reality from dreams. But recently, after all the pain and difficulty, Nick has found hope as a client of Psychiatric Rehabilitative Services, or PRS, Inc.
With its administrative offices in the City of Falls Church, and locations in Reston and Mt. Vernon, PRS has been providing assistance to individuals in Northern Virginia with mental illnesses for over 40 years.
At PRS, 63% of the clients suffer from schizophrenia, an illness similar to Nick’s schizoaffective disorder. The National Institute of Mental Health (NIMH) lists the two illnesses as the most common type of serious mental illness, with nearly 1% of the entire U.S. adult population affected.
Symptoms of these illnesses include hallucinations, often auditory in nature, where the person hears voices talking to him or about him. There are also delusions, where the person believes things that others clearly see are not true. There are thinking disturbances, where the individual jumps from subject to subject without a coherent line of thought.
While many mental illnesses don’t start until the late adolescent years, Nick began having symptoms from age five. He remembers hearing voices in his thoughts when he was a young kid. “I didn’t think anything of it,” said Nick. For years he ignored the symptoms, he would push them out and go on with his life.
When he reached puberty things started to change. “My voices and thinking became too unbearable,” he said. It was no longer something he could control and hide. “I just got very angry at everyone,” said Nick. “I hear people and they’re not there.”
After years of trying to help him, his parents eventually had to put Nick in the hospital. “My illness got in the way of the lives of my mom and dad,” he said.
But the hospitals didn’t bring the hope he desired. With psychotropic medications still in their infancy and with doctors still learning how to correctly prescribe them, Nick would often find himself switched from drug to drug in an attempt to control his symptoms. “Some of the meds were more bad than good,” said Nick. “Some made me too sensitive. I didn’t feel right, I was sleepless,” he said.
When one hospital couldn’t help him, he would be switched to another hospital, always hoping that at some point there would be a place that could provide a solution for the maelstrom in his mind.
“I felt like I was a disaster waiting to happen,” he said. He described himself as, “a time bomb, and I was like, ‘boom!” he said.
Finally, Nick ended up at the Northern Virginia Mental Health Institute. While the Institute worked to help him deal with his illness, they also referred him to PRS where he started to take part in their day program.
The PRS day program has a wide diversity of clients, from recently accepted members with very little functionality, to more advanced clients who are taught life and professional skills.
When Nick first started at PRS he didn’t want to get involved. As the other clients took part in activities, he would simply watch. As part of the rehabilitative process PRS insists that clients take whatever time they need in order to feel comfortable.
Nick gradually started taking part in the activities. His first project was quilting. “I liked making patterns fit. It looks good,” he said. One of his quilts took home first prize at the fair.
Day after day, as he worked piecing together the bits of fabric, he was also starting to piece together a new life for himself.
During this time, he moved into his own apartment, part of Stevenson Place, an assisted living development in Fairfax County. He said that the day when he moved in was one of the best days in his life. Up to that time, he had never lived on his own. He was starting to see a new life open up for him.
By 2002 Nick was excelling in the day program. He was named the 2002 member of the year and started learning work skills in the hope of beginning a professional life.
The skills started off as simple things. “I tried working on the phones. It was hard at first and then I got used to it,” he said.
With the help of PRS employment services Nick finally landed his first job at Petsmart. With a lifetime affinity for animals he has felt right at home working with pets. “It’s probably been my whole life,” he said, “Each pet has a certain different personality that I love.”
Nick has now been working part-time at Petsmart for a year and a half, and will soon begin another job working at Food Lion.
With the help of the right medication he has been able to find relief from the worst of his symptoms. Now the voices don’t come like they used to, and much of the fog has been lifted. He finds joy in supporting himself and leading his own life, but he can still remember the dark days before he walked into PRS. He said that without PRS, “I would be miserable. No money, no food, no nothing.”
Elisa Kosarin, vice president of resources and development for PRS, has been witness to a lot of people, who, like Nick, have fought their way through the difficulties of mental illness.
She has seen their development from their first day through the door, to the day when they land their first job. For her, the experience is a lesson in hard work and intense focus, by the clients, the employees, and all the volunteers who make the daily miracles happen at PRS.
With every success, though, comes the knowledge of how difficult overcoming a mental illness is.
Wendy Gradison, the president of PRS, talked the News-Press about mental illness being like other personal disasters. She compared it to somebody trying to overcome the loss of a limb or paralysis, except a person with a mental illness doesn’t have any balance or clarity in coming to terms with their dramatic loss.
As they face the most difficult challenge of their lives, they are left without any of the mental tools to deal with that challenge, like a mountain climber trying to scale a rock face without a rope.
Because of the immense challenge, it was previously believed that serious mental illnesses were incurable.
Kosarin talked about how ideas about curing mental illness have shifted over recent years. “There wasn’t much expectation [in helping the mentally ill], but that has really changed,” said Kosarin. Now with the help of improved medication and their rehabilitative services, clients can work towards a full recovery, or at the very least be able to control their symptoms and lead a relatively normal life.
Kosarin pointed to the dramatic results in clients’ lives as a result of PRS’s assistance. Out of the 737 individuals served at PRS in 2003, 96% of them remained out of the hospital and 100% have remained in permanent housing. Of those members taking part in the employment services program, 64 % of them were placed in competitive jobs, which are defined as jobs that anybody can apply to, and are not set aside specifically for people with disabilities. Elisa pointed out that for those not receiving treatment the percentage is around 10% nationally.
Though the programs have proven successful, Kosarin emphasized much there is to do in the battle against mental illness. In a report by the Surgeon General it was said that 5.4 % of adults suffer from a serious form of mental illness that profoundly affects functioning. These illnesses include schizophrenia, bipolar disorder, severe depression, panic disorder, and obsessive compulsive disorder.
The Surgeon General also stated that only half of people suffering from mental illness receive treatment. This means that in Fairfax County alone around 19,000 people suffering from mental illness are calculated to be receiving no treatment at all. Kosarin emphasized that there is a lot of work to do. “We need the funds so we can serve more people,” Kosarin said.
That view, though, is not mirrored by the state legislation or budget, which hasn’t made psychiatric rehabilitation a high priority. Kosarin pointed out that Virginia is 48 out of all 50 states in providing funding for psychiatric rehabilitation. As a result of this funding deficiency, the organization has had a difficult time being able to provide services to those who are referred to them, presently there is a wait list at all three of PRS’s locations.
While the services are not free for the clients, and they are required to pay annual dues, these dues only cover about 1% of all the yearly operating costs. In a breakdown of their revenue, 80 % of the funding comes from government grants and contracts and another 6% in private grants and contracts. The rest of the money for the center comes from contributions and sales revenue from products made by the clients of PRS including quilts, jewelry and ceramics.
Finding funding for the programs is Kosarin’s primary focus. She has recently been working to get unrestricted donations through corporations and private donors. PRS is a non-profit organization and all donations made to them are tax-deductible.
Part of the difficulty in finding money for their programs comes from the fact that the majority of psychiatric funding goes to children’s programs. The reasoning being that more can be done for people in their formative years.
The problem with that thinking in regards to mental illness is the fact that the majority of mental illnesses don’t make themselves apparent until early adulthood.
Another problem with finding is people’s aversion towards the subject. Kosarin talked about the reaction of people towards their work. “We are very overlooked partly because of the stigma,” said Kosarin.
She said that even today people are still hesitant to talk about mental illness, seeing it as shameful and even frightening. As a result not many people understand mental illnesses, and don’t know about the symptoms of the illnesses or the solutions that are out there.
Erasing the stigma about mental illness is one of PRS’s primary goals outside of the direct care of the clients. They have been campaigning to de-mystify mental illness in the public awareness.
Their work targets three areas that they see as being important in the lives of their clients: family, employers, and the surrounding community.
The NIMH says that the family is one of the most integral parts of a person’s recovery. It makes recommendations for family members to learn as much as they can about their relative’s illness in order to provide support and motivation throughout their recovery process.
They also state that family education is important because many mental illnesses have been shown to be genetically linked with a possibility of that it will show up again in other family members.
The second focus is to teach employers that those suffering from mental illnesses, with proper care, can be fully functioning and often very able employees.
PRS’s work also includes teaching people in the community that those with mental illnesses are not something to be afraid of, or have an aversion to, but to be accepted accept them as colleagues, neighbors, and even friends.
As part of this process, PRS now hosts walk-throughs of their facilities for people to see their programs and talk with the clients. Kosarin said that the only way to understand the work that goes on in the organization is by meeting the clients. “The importance [of our work here] can only be told through the stories of our clients,” said Kosarin.
After years of working towards his own recovery Nick K. is hoping that his story will provide a venue for discussion about mental illness and perhaps, inspiration for others who are dealing with their own illness. “I want people to hear this,” he said. “I want people to realize there’s hope.”