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By Melissa Ford
A recent community assessment found that the stigma (public as well as self-imposed) of living with a mental illness, developmental disability or addiction is a real problem in our community. In response, The Community Mental Health Board of Oak Park Township (CMHB) has funded various agencies to create educational initiatives aimed at raising awareness and reducing stigma.
Frankly, I was surprised stigma was such a big issue, so I sat down with Vanessa Matheny, a project coordinator for CMHB, to learn about these upcoming initiatives. Secretly, part of my motivation for our meeting was to reconfirm my perspective that Oak Parkers really don't need anti-stigma initiatives because we are an accepting, open community willing to embrace others.
Oh sure, there may be a few people who choose to stigmatize, but I, for one, was not one of those people — or so I thought.
Beyond her work at CMHB, Matheny knows about stigma firsthand. Her brother, Nathanial, was diagnosed with paranoid schizophrenia. Her compelling story about caring for her brother over the last 10 years was the beginning of my own anti-stigma education. As I listened to Matheny talk about life with a mentally ill brother, I was in awe of her calm demeanor, inner strength and steadfast commitment to take whatever action is necessary to help her brother recover.
During our conversation, it slowly dawned on me — there really is a public stigma problem and I was a part of it. My lack of interest in learning more about mental illness, combined with keeping a distance from "those" kinds of people didn't add up to my self-proclaimed identity of being an open and accepting person. It was easier to not know about people suffering with mental illness. In some way, it felt safer.
Unknowingly, I was contributing to the isolation of others because of my own ignorance and fear, as well as impeding progress toward the availability of quality mental health services for all.
The real truth is that public stigma isn't just generated by people who are ill-intended; stigma is the by-product of ill-informed, even well-intended people — people like me, who are unaware of the deeply rooted beliefs they harbor about the mentally ill and the families who suffer with them.
Many thanks to Vanessa Matheny for her willingness to share her story to help all of us begin our anti-stigma educations. I hope her story touches you and compels you to explore your own perspectives on mental illness, which may inadvertently contribute to the stigma problem in our community.
Living with Nathanial's mental illness
I am one of four children. When I was 15, my older brother, Nathanial, was diagnosed with paranoid schizophrenia at the age of 18. Out of the blue, Nathanial began having irrational thoughts. He stopped eating, dropping over 30 pounds, because he believed we were poisoning him. His behaviors became even more bizarre — from shaving all his bodily hair to believing my stepfather was burying people in our backyard.
It was difficult to understand what was happening to Nathanial, but we soon learned that schizophrenia often presents itself in early adulthood and mostly in males. To this day, researchers have yet to determine the cause — drugs, stress, genetic predisposition, or some combination thereof — but pinpointing the origin of Nathanial's illness was the least of our worries. Garnering our own inner strength and resources to help my brother wasn't enough; our biggest challenge was the law in Illinois.
Illinois laws, in attempting to protect my brother's rights, constantly thwarted our every effort to help him.
In Illinois, adults diagnosed with a mental illness have the right to choose whether or not they want to receive medication. The problem with schizophrenia is that medication is a necessity, not an option, and my brother refuses medication.
When Nathanial received his first diagnosis, he slept in the hospital for five days, then was released, unmedicated, deemed ready for the outside world. Everyone, including the hospital staff, knew that sleep had not cured Nathanial, and releasing him without medication meant that at some future date, he'd be hospitalized again — or worse, incarcerated.
My best guess is that Nathanial has been hospitalized at least a dozen times (each stay 2-5 days) and jailed at least 10 times during the last 10 years. His jail time was often the result of officials in charge not wanting to hospitalize him. As his sister and one of his caregivers, I have felt incredibly frustrated because these institutions cannot help Nathanial recover. Medication is his only answer to living a healthy life.
We've adapted to his extreme behaviors since he refuses medication.
There were moments of rational thought and non-delusional behavior, lasting a few weeks maybe even months, but for the most part, Nathanial is completely irrational.
He engages in random behaviors such as covering his windows with foil, unplugging electronics and hiding them, writing notes to himself in third person, conversing with himself as if he were someone else, and interacting with imaginary people.
The amount of stress on my family was (and still is) tremendous, which has resulted in Nathanial being moved around a lot. Since we don't want him living on the streets and we cannot get him into a psychiatric hospital or group home, the burden of caring for Nathanial has been shared by many.
[Being] shuffled between family members is easy to understand when you know what it means to live with Nathanial: repeatedly locked out of your house, living in filth because he doesn't clean up or keep himself clean, endless damage inflicted on your home, as well as being on call 24/7 to advocate on his behalf if he's hospitalized or incarcerated.
Going away to college opened my eyes to the incredible amount of stress my family lives under.
As you can imagine, I loved every second of college because I had no responsibilities for my brother. It was a completely different life even though hearing about Nathanial's problems did not go away. My mother and I are very close and often she would call me asking for advice. We became very skilled at being our own internal support system — my parents and I — since external resources are not available for Nathanial.
During my sophomore year at college, my family was struggling more as Nathanial's health was progressively getting worse. Things were so bad that I finally convinced my parents to let Nathanial move in with me. Looking back it was totally unrealistic, but at the time, we were all desperate. But good things emerged from that very dark time living with Nathanial, including my decision to switch my major from history education to social work.
My hope was to empower myself, my parents, and other people caring for a family member with a mental illness.
Protecting rights vs providing care
It's important to protect people's rights. However, what do you do when someone won't seek the care they need to recover? It's a constant battle with my brother to take his medication. A hallmark characteristic of paranoid schizophrenia is refusal to medicate. Experiencing paranoia, a person can believe the medication will harm him/her or after being medicated, one can feel good, even cured, and believe there is no need to continue treatment.
My mom and I still talk at least four times a week about my brother and his condition. It's a full-time job. How can we help him? What form needs to be filled out? Where can we go for services? Occasionally, we take him back to the hospital, but there isn't much success. On numerous occasions we have waited hours in intake with Nathanial, only to have him decide he doesn't want help and we end up leaving. Or we get him admitted; then he refuses medication. In no time at all, he's released and back in our care.
There's a real dilemma when it comes to getting Nathanial the care he needs. My mom has partial guardianship over his finances but was denied full guardianship when she went to court. The judge handling the case asked Nathanial if he wanted full guardianship and he responded with a simple "No." This left him in the position of having to approve our requests for care and other services whether it's medication or treatment. The problem is that he doesn't know that he needs help; he's not capable of a rational decision.
We do everything and anything we can possibly think of to take care of Nathanial — from bringing him to psychiatrists to evaluate his need to continuing disability care to contacting hundreds of agencies to get on a waiting list for a group home. The wait list, by the way, is anywhere between three and five years.
We're damned if we do and damned if we don't.
Holding out hope
Many people wonder why we have been unsuccessful at getting Nathanial into a psychiatric hospital or group home. Psychiatric hospitals are mainly for crisis intervention (if someone is a threat to him/herself or others), and the goal is quick recovery, which translates into reintroduction back into the community, often leaving people starting from square one. Group homes are limited options since residents have to be med-complaint and cannot have a history of drug dependency, and the latter often accompanies a diagnosis of mental illness.
Nathanial's monthly stipend for rent, food, water, clothing, and utilities comes in the form of a monthly Social Security disability check of $600. Barely covering his essentials, my parents are forced to shoulder the financial burden for the majority of his needs; otherwise Nathanial will be living on the street.
At this point, Nathanial has two housing options: living on the streets (while we wonder if he is dead or alive) or my parents providing him with his own home. Fortunately (and unfortunately), my parents have the financial means to provide a home for Nathanial. The upside? We have some control over his safety because he isn't on the streets. The downside? By providing my brother a home and taking care of him, we have consciously denied him access to more intensive treatment (which he really needs) from a psychiatric hospital or group home.
My brother, the consumer of mental health services, is not being supported.
We check in on Nathanial once or twice a week, yet when we visit, it literally looks like we haven't been there in months — broken furniture, spills, food everywhere, and dirt. We roll up our sleeves and get to work: doing his laundry, cleaning his house, getting him groceries and constantly repairing the damage he does to his home. He puts holes in his floors; we spend an entire weekend installing new floors. He punches holes in his walls; we repair those walls, too.
The government still needs to find a way to provide people with resources and solutions. The system has failed us, but I continue to try and I want to believe that there is something that will help him. Until then, visiting him on a weekly basis, cleaning all weekend, repairing damage to his home is our best choice. Otherwise Nathanial becomes a street person, scraping for food, trying to survive. My parents and I have discussed it over and over; Nathanial is better off in his own home than on the streets.
My brother loves to go to the grocery store, especially on Sunday when the stores are teeming with shoppers. He has a big burly beard, red hair, dirty finger nails, and he's probably worn the same clothes for weeks. But there are people there who talk to him like he is any other person. I'm so grateful. Of course, there are some people who walk away and I understand; Nathanial, unknowingly, brings stigma onto himself. In some ways, I'm a buffer, a neutralizing factor because of the way I look, like anyone's sister.
I normalize Nathanial, so people are more apt to let him be.
I've dealt with stigma my entire life because of my brother. I'm a happy person, and I deal with a lot, taking care of my brother. I have many friends who do not want to know about my brother. I have other family members who do not fully understand what is going on; they are busy with their own lives. When people disconnect from my brother, whether it's family or friends, it makes our lives harder.
It's important that I talk about Nathanial, in hopes that others will better understand him, not judge him, and realize he's ill. I'm also blessed with an amazing board of directors and boss, Lisa DeVivo, executive director of CMHB, who understand my chaotic life. Occasionally, I have to leave work early because the police call, and Lisa understands.
I know that if I hadn't gone into the field of social work, I don't think I could function at work because there are always demands from my brother. My mom goes above and beyond, but when she can no longer care for Nathanial, it will become my job. I know that and I know what I'm in for. I can't leave my parents with all this work.
It's too stressful, heartbreaking, overwhelming and it occurs every single day.
Reducing stigma is my mission
Mental illness affects one in four people, so we truly need to be educated. My mission is to reduce stigma and change the laws in Illinois for care. If I don't tell my story, then I'm never going to feel like I've done anything to impact this problem. Maybe through my example, others will open up about anxiety, depression, and other mental illnesses so we can begin to have honest conversations, compassion for one another, and create an inclusive community.
It seems that changing perceptions and deeply seated prejudices takes time.
The majority of my friends know that my brother has a mental illness. There is nothing to hide. I have other friends who don't want to know about Nathanial or believe mental illnesses are made up. They view mentally ill people as being lazy and feeling sorry for themselves. I've met people who believe the government is enabling the mentally ill not to be responsible and take care of themselves. This is horrible because I have lived with it firsthand. Mental illness is not made up. Not everyone I interact with is going to understand, so it's especially frustrating when people view me and my family as encouraging Nathanial's behavior.
I'm doing exactly what I love working with CMHB, every second of it. I help my brother because if I didn't, who would? I'll even do his laundry to make sure he's a little bit healthier along the way. I'll do whatever I can to help him and other people with mental illnesses by fighting the laws and policies that keep people from receiving adequate care.
Maybe one day, with enough education, people will learn that someone suffering from a mental illness is still human, a person with a life — like you and me — a person who needs extra help and care and love.