A Deaf Recovery Story

By Kevin Coyle 

Losing control of your mind, of your very being is a scary thing. It impacts and influences everything: how you act and what you believe. I never thought it would happen to me. When I was a senior in high school, I thought that I would go to college and perhaps become a writer someday. As a deaf man I have some understanding of what it is like to have a disability, but nothing prepared me for mental illness.

I was diagnosed with a mental disorder after my first breakdown that occurred at an intense academic seminar. A chemical imbalance in my brain distorted my perception of me and my environment. Eventually I recovered enough to return to college. Only through regularly meeting with my psychologist and psychiatrist and taking my medications have I been able to maintain some level of stability. Even with all this help, I had several other smaller breakdowns that forced me to leave school for a few weeks at a time. Unfortunately, my peers could not understand what I was going through. Socially I felt very alone. I felt like I was hiding a big secret that I couldn’t let others know. My deafness made me feel even more alone. I could hear in one-on-one conversations in a quiet setting, but in the loud dining hall packed with people I was lost.

Fortunately my academic adviser did understand my situation. A funny and light-hearted person, he always brightened my day. He worked creatively with me to figure out how I could pass the requirements, despite my illness. He allowed me to take a lighter load when four or five courses proved to be too much. Even then I had to take many extensions on assignments just to get by. Finally, in May of 2007, I graduated with a self-designed degree mainly in philosophy and politics.

After I graduated I plunged to a new low. Although I earned a degree, my self-confidence was still crushed. I had no friends, nor did I have many contacts. I was scared of the world and God was nowhere to be found. I felt hopeless and in the dark. I didn’t bother to go to church. I slept most of the day and went through the motions of things without meaning or purpose. During that year I hit rock bottom. I saw no future in my life. Yet, my mom assured me that God loved me and there was a brighter future ahead. I didn’t believe her at the time, but it turned out she was right.

By the end of the year I was accepted into a program for deaf individuals who are mentally ill. All the members there were very nice and supportive. While living at the group home, I have made many friends, something I never had before. There I could understand people and be understood. The fact that we all have mental illnesses allows for a still deeper bond than deafness alone. We are like a family. We look out for one another and cheer up our fellow members when they are down. In their kindness and goodhearted jokes, I can see God working through them. Through friends, God has answered my prayers.

Another organization that helped me immensely is On Our Own, a nonprofit organization that is for and by people with mental illnesses. I will never forget the first time I entered the building nervous and shy. The staff member there listened to my story and helped me submit some of my poems for their annual publication, The Fellow Traveler. That was three years ago. Since those first steps into the building I have joined a writing workshop, attended annual conferences, served on the consumer council board, and participated in a mental health rally in Annapolis. For the first time in my life I feel a part of something that is making a difference in the community.

I have lived in the group home for two years now. The program is not perfect, but it has allowed me to slowly regain confidence in myself. I now attend a swim practice class at the YMCA. Recovering from the crushing blow my illness had on my self-esteem, I am rediscovering my passion for performing. Recently, I did a juggling and magic show for a local coffee company for their open-mic night.

My struggles humbled me and allowed me to appreciate the small victories in life. I have come closer to God and my spiritual side. I began to attend church regularly again, after a long hiatus. In the past, the words were empty and void. Now the Bible’s lines speak to me on a much deeper level than in the past. Church service makes me feel spiritually refreshed and ready to tackle another week.

Another thing that has helped me get through dark days is the comic strip Calvin and Hobbes. Calvin reminds me of the playful, creative part of me that I sometimes lose sight of when I am depressed. By my bedside I keep a copy of one of my comic strip books entitled, “It’s a Magical World.” On the face of it Calvin and Hobbes are trudging through the snow. Whenever I look at this cover I am reminded that life is full of wonder, beauty, and magic.

When I was a senior in high school I never dreamed that I would have a mental disorder, but sometimes good things come out of a bad turn of events. My mental illness, although unfortunate, has brought me into a warm and caring deaf community. Now I am so blessed with what I have. I am thankful for my friends who warm my heart, for my adviser who believed in me, for my family who stood by my side through thick and thin, and for the staff and doctors who work with me. Without them I would not be where I am today. I am thankful, but I still dream of a better life. I hope someday to move on to graduate school. How I will do this I don’t know, but I have faith that if I work at it, God will provide somehow, someway.

Kevin Coyle

http://promoteacceptance.samhsa.gov/publications/mystory/story_kevin.aspx

Have you seen my brother standing in the shadows?

A lack of services and the intractable nature of mental illness make for a bleak scenario.

By Sarah Dusseault

January 5, 2014

My brother John called me last summer to tell me that he had finally figured out our family secret. I was his mother, he said.

I am not, of course.
My brother is 38 years old, but I will always think of him as he was in his early 20s, when he was diagnosed with schizophrenia. His good looks landed him work as a model, and he was a math whiz.
Today, he is still attractive and wickedly smart at times, but his skin is weathered from years of homelessness and he is missing half of a finger on his right hand from one of his "stays" in a county jail. He is unmistakably homeless but still charming enough to persuade passersby to give him clothes or a beer, or to play a game of pool.
His homelessness always starts with stopping his medication. Eventually he gets into trouble, usually from self-medicating with alcohol, and bounces from incarceration to forced hospitalization. It has happened over and over. He spent Thanksgiving locked up in Twin Towers for stealing a $4 strawberry Budweiser.
His latest round of homelessness began last spring after his landlord lost his apartment building to foreclosure and all of the tenants were evicted.
John had stopped taking his medication a few weeks before he lost his home, blaming the fact that yet another Valentine's Day had passed without someone to share his life. Since then he hasn't accepted offers of help because he has stopped thinking rationally.
Not being able to help him is immensely frustrating. In my professional life, I have worked to build housing and create programs to end homelessness. But the system is broken, especially for homeless people with severe mental illness, like my brother. My family and I just keep hitting dead ends trying to get him help.
It's not that money isn't being spent on him. Study after study from across the country has demonstrated that the cost of dealing with people like my brother, who ricochet from the streets to hospitals and jails and back, is exorbitant. I estimate that, in the last year, the federal government, several counties, the state and local communities have spent more than $1 million on John.
And all of us — taxpayers, my family and John — are getting nothing for that money. The government could have bought him a cute single-family home in Pasadena with a full-time social worker and spent less.
My older brother Steve has tried to get appointed as John's conservator, but each time the matter has come before the court, John has convinced a judge that he is capable of managing his own affairs. John passes his days in conversation with imaginary people, but he is still capable of repeating a few memorized sentences that a judge accepts as proof he can care for himself.
For weeks at a time, he goes missing. Then he turns up in an emergency room, police station or hospital. He's been picked up for throwing himself at cars or belligerently talking to himself. He spent July in a hospital where he imagined that family members were with him. The hospital released him to a board-and-care facility, claiming he'd been stabilized, but he stayed only briefly before leaving.
In September, a friend found John asleep at my house. I called an outreach worker from Housing Works to try to get him help. They came and worked out a plan with John for housing and healthcare, but he changed his mind later in the day, walking away from the social worker, back into homelessness.
I found him again but couldn't persuade him to accept help. He says that I don't understand his profound loneliness and that my "options" are not what he wants. His appearance has deteriorated. He is thinner and his skin is blistered from sun and cold. I tried to feed him, but he wasn't able to sit still long enough to eat much.
A few days later, he was forcibly hospitalized for a couple of weeks but wouldn't allow the social workers to contact me. I again lost track of him until I checked the police records on his birthday, Nov. 13, and found out he was in jail.
There are programs that work to interrupt this kind of cycle, but there are far too few of them, serving far too few people. As a result, stories like my brother's are not unique.
I know from my professional experience that progress has been made to end homelessness. But I have also seen firsthand the overwhelming failures in parts of the system. Discharge plans after imprisonment or hospitalization are required, but they are rarely useful. And gaining access to programs that work remains extremely difficult. For most of the chronically homeless mentally ill, we waste large sums of money on ineffective interventions.
My family and I live in dread that one day we will get "the call" informing us that John has lost his life. But my brother never gives up hope that he will find a girl/job/apartment.
We had breakfast together recently.
He had been released from jail the night before and walked through the night to Pasadena. He called at 6 a.m., and I went to meet him.
We made big plans about getting him a place to live and connecting him with services. I left him at a barbershop about to open because he wanted to get cleaned up. I went back after dropping the kids off at school, thinking things might get better. But by the time I returned, he was gone.
For the next few days, I drove around with a full duffel bag of clothes and supplies looking for my brother. I found him eventually. His medication had been stolen and he was holding on to a brick wall, talking to himself, on Colorado Boulevard.
Sarah Dusseault was a senior policy advisor to Eric Garcetti when he served on the City Council. She was deputy mayor for housing and homelessness in the administration of Mayor James Hahn.

http://www.latimes.com/opinion/commentary/la-oe-dusseault-homeless-brother-20140105,0,4599082.story#ixzz2qBPfrfJY

LA Times Opinion pages answering "Have you seen my brother standing in the shadows?"

Re "Have you seen my brother standing in the shadows?," Opinion, Jan. 5

Sarah Dusseault's story about her brother' struggle with mental illness and homelessness was heartbreakingly familiar.
My sister with schizophrenia has been repeatedly homeless, jailed and hospitalized. We were fortunate, though, to have guardianship and conservatorship awarded in New Mexico. There is no guarantee of stability, but we have some leverage to help her.
Simply from a state expense view, keeping our mentally ill out of jails and hospitals saves money. But from a human standpoint, who is better to help, support and advocate for the broken? We definitely need the state's help, but its workers have office hours and large caseloads. The state needs the families' help too. Can't we all just work together?
Dusseault's efforts to help her brother sound tireless.
I know she can never give up. I hope her brother finds someone, maybe in group therapy, who understands loneliness.
Diane Wetherbee
Dana Point
Dusseault's estimate of $1 million in public money spent in vain on her schizophrenic brother in just one year is an eye-opener.
The decision made decades ago in California to empty our mental hospitals and basically dump sick people on the streets has led to this mess. Community mental health clinics and counseling to take care of these people have clearly not worked.
Homeless advocates have fought long battles against committing these people to mental hospitals where they actually could be taken care of. Being in an institution would mean that people like Dusseault would know that her brother was not in jail or wandering lost on the streets — and was instead safe and taking his medication.
Robert Newman
West Hills
For those of us who have a loved one with schizophrenia or bipolar disorder, Dusseault's poignant essay was hauntingly familiar.
It is difficult enough to help a child with a mental illness, but when he reaches adulthood, forget it. The courts and other parties, as Dusseault demonstrates, tend to favor his rights, to the frustration of his family.
Despite the incredible setbacks that Dusseault's brother has encountered, he "never gives up hope that he will find a girl/job/apartment." That line put a lump in my throat and a tear in my eye.
How can we sleep at night when our homeless brothers and sisters with mental illness wander the streets, withering away, as they rifle through trash cans for food?
David Tulanian
Los Angeles

http://www.latimes.com/opinion/la-le-0107-tuesday-mental-illness-homeless-20140107,0,2689256.story#ixzz2q84xmOdm