Mental Health stories of courage and resilience Part 4

Y is for the true You inside

This post is the last of the Mental Health stories that I will share in honor Mental Health Awareness Month. As I’ve written earlier, these are memories I carry with me from past experiences. I hope that in reading these snapshots, you can get a glimpse of the struggles for a person who lives with chronic and persistent symptoms of mental illness and from that glimpse, gain understanding and empathy. This mini-series resulted from the letter “Y” in April 2018 A to Z writing Challenge. If you’d like, you can go back to Part 1 and start at the beginning.

I met Margaret as I did many of my clients, in a state-run psychiatric hospital to be a part of discharge planning. As I had mentioned in my last post, Margaret was on the younger end of middle age. She had been married once and had a child, a boy named Shaun. The boy’s father had full custody. Margaret had not seen her son, now a teenager, for many years.

Margaret carried a dual diagnosis of Bipolar Disorder with manic episodes along with Alcohol Abuse and Dependency. Hospital records indicated that there was a family history of substance abuse by both parents and siblings. Margaret had lost contact with her family. She had lived “on the streets” or in psychiatric facilities for most of her adult life.

One of the first things that Margaret wanted me to know was that she “was not like the other homeless drunks.” She wanted me to know she had lived in a big white house overlooking the Bay in a small posh town known as a summer retreat for famous people. As she stuck out her arm in front of herself, she fanned her hand and wiggled spread fingers to make a point, “and, I had di-ah-mends…”

Whenever she was having a hard time, she would repeat the story to me with the same gestures and intonations. She wanted me to remember. It was her dream to get back to that point in her life. It was my goal to help her get as close as possible. She was discharged to a women’s transitional residential program with seven other women and plenty of support. The structure proved too much for Margaret. There were curfews, chores and according to Margaret “the staff was pushy and some of the other girls were too young or too sick.”

We started looking for safe alternative housing. It was the 1990s. Margaret’s only income was Supplemental Security Income and the minimum allowance of food stamps. Today she would probably get a gallon of milk and a dozen eggs for that amount. Without a housing subsidy, it was impossible for Margaret to afford even a room in one of the many rundown boarding room houses in the city. We applied for a rental assistance allowance through a special grant designed for downsizing the state hospitals. While we waited, Margaret’s boyfriend, Jean found a small attic apartment in an old triple decker.

Jean was supportive of Margaret’s treatment and personal goals. We were able to adjust the subsidy request to use at that apartment. With a place of her own, the primary thing on her mind was to see her son Shaun again. Margaret was able to open communication with Shaun and his father. Now she could tell his dad that she had a safe place for him to visit. Jean was able to borrow a car to meet her son for lunch near his home. It was the first time they had seen each other since he was a small boy. She was so excited. She bought a stylish blouse and slacks at the Salvation Army. For Shaun, she purchased a gift from a local department store, precursors to Target or Walmart. They tell me she looked fabulous. It was very stressful, but she managed to get through it without hospitalization or too much disruption in her life.

It was a year later when Shaun got his driver’s license and a car, that he was able to visit Margaret. From the moment she got the apartment, everything she did was with Shaun in mind. Now, her little boy was coming for Christmas!

Margaret and I would shop for her groceries and personal items at the beginning of each month when her Representative Payee would give her spending allowance according to her budget. Margaret had planned and budgeted for Shaun’s Christmas visit for months. She wanted to make sure she had enough for a Christmas tree. She was extra careful shopping because she also wanted some ingredients for a special dinner. After we secured her monthly staples, we were done, but with very little left for a Christmas tree.

Margaret wanted a real tree for Shaun. She didn’t want a dusty beat-up artificial one from a thrift store. We searched high and low on that cold New England winter day. Finally, in the back of a tree lot, Margaret spotted the perfect one. It was short and lopsided, but not too scraggly and at least one hundred times better than Charlie Brown’s. To Margaret, it looked like the one at Rockefeller Center. She negotiated and got it for eight dollars. She cried silent tears as we drove home.

At my next visit, I saw the lopsided little evergreen sitting in the corner glowing brightly from the lights and ornaments that Margaret had collected from around town – donation boxes, thrift stores, and friends. The little Christmas tree did look like it belonged in a big white house by the Bay with strings of “di-ah-mends” to light it up. Margaret had poured years of bottled up love for her son into decorating the tiny apartment for that visit. It was Margaret’s first Christmas in a long time as well, and sometimes she would become flooded with so many emotions. It was good to hear they had a lovely time.

Margaret was a loving mother who also happened to struggle with distressing symptoms of a major mental illness. I tip my hat to her this Mother’s Day wherever she may be.

Each one of us has our own evolution of life, and each one of us goes through different tests which are unique and challenging. But certain things are common. And we do learn things from each other’s experience. On a spiritual journey, we all have the same destination. A. R. Rahman (from BrainQuotes.com)

Please check out the links below for additional information for family supports as well. Many times family and friends want to help but don’t know how. There is also information about Peer support groups and peer mentoring programs. No one has to do this alone.

SAMSHA (Substance Abuse and Mental Health Service Administration) at https://www.samhsa.gov/

NAMI (National Alliance on Mental Illness (a grassroots organization run by families and consumers) https://www.nami.org/About-NAMI

Mental Health stories of courage and resilience Part 2

Y is for the true You inside

A few days ago, while participating in the April 2018 A to Z challenge, I wrote a post about The fun side of living on the edge of reality. It was about the silliness of letting my imagination run away. I imagine it’s a trait common among those of us who like to write. My theme for the challenge was to tell the stories that marked my simple life; the memories of those moments are in my mind like snapshots. After I wrote the post, I felt the need write the stories of those who struggle with harsh realities, yet find a reason to get up every morning and do their best to make it a great day. For the next few days, in honor of Mental Health Awareness Month in May, I am telling their stories. Once again, at the end of the post, I will put links to resources for additional information.

Imagine

Joy of graduation — Imagine you are a high school senior or college freshman

Imagine for a moment that you are a high school senior or a freshman in college. You ’ve been a straight A student, involved in sports programs and volunteering. You’ve done everything right. Just last month you were told that it’s a great thing to have your whole life ahead of you. The world is your oyster, the sky is the limit, and yet here you are, sitting in with your parents in a psychiatric ward waiting to talk to your hospital team about discharge planning. You have been handed a diagnosis something like Paranoid Schizophrenia or Bipolar Disorder. You’re a smart kid, intellectually you understand the information, but it doesn’t make sense. You can’t return to school; you need extended treatment in an outpatient day program. You may need to pack your things and move out of your dorm, mid-semester to a therapeutic residential program in your community. You don’t remember how you got here. You’ve heard the stories, you’ve been given a diagnosis, but you can’t believe this is happening to you.

Mental health services and the Government

For the most part, I loved my job. I found it meaningful. I believe it addressed a need in our community especially for the families and individuals we served. Even though we were just another branch of government, I felt we were doing great work moving forward to try new ideas in the interest of improving the system for our clients. As it happens sometimes, I was promoted to long days of sitting behind a desk with a mountain of paperwork while trying to interact with the bureaucracy. I missed being out in the field, but I was fortunate enough to work with a team of intelligent, well trained and compassionate professionals who were driven to provide the best services for their clients on the road to recovery. Together, in weekly sessions, we did a lot of brainstorming and problem solving to address the individual needs of the clients.

During this particular time, our emphasis was to work towards helping clients break the revolving-door cycle. In particular, we had begun paying close attention to the unique issues of the transitional age and young adult population. These individuals ranged in age from 16 to 24 years old. In some cases, we were able to expand age limitations to 30 years old. We sponsored supportive education and employment initiatives, peer mentoring and independent living in the least restrictive settings. We wanted to offer user-friendly alternatives to interrupted lives. That is how I had come to know about Mike.

Mike –carrying the stigma of an ex-patient

Mike had come to us after his second or third psychiatric hospitalization at a local hospital. He was in his late 20’s, almost out of age range for our new menu of services. He was bright, hardworking but was having a hard time adjusting to his life as an ex-patient of a mental hospital mainly because of anxiety about the stigma it carries. Who was he now? He had been living with his uncle and family for many years. Upon discharge had returned to work at the family business but symptoms of his anxiety, OCD, and depressed mood caused persistent and unrealistic worry. At times increase in symptoms became full panic attacks and physical immobility. His case manager thought he would flourish with a young adult support system and advocated strongly for a spot.

I met Mike for the first time at the office when he came looking for his case manager who was out on appointments. He asked to speak to me because he felt that being with anyone who understood his struggles would help to lessen his anxiety during this episode. He had just had a falling out with his cousin who was supervising his work on a project. His cousin felt he was too slow and taking too long to get the job done. He was feeling overwhelmed and worried what his family would think. He worried that the incident would be a setback in his recovery plan. We reviewed his Recovery Plan and the Safety Plan that he had worked on with his therapist and case manager for these very same situations.

“You know what I wish?”

He told me he felt he was on shaky ground with his family since his hospitalization. He said he knew they saw him differently. “They think I’m lazy; they don’t realize what a struggle it is for me to get up and face the day each morning.” He didn’t feel he could address it because he believed they would mock him. Whether it was true or not, I can’t say, but that was his perception. We talked about how unrealistic expectations and perceptions could present a barrier to recovery.

He was sad and angry. On the one hand, he explained people see a good looking young man who appeared smart, secure, physically fit and “put together” as if there was nothing wrong. But the reality he said is that he can’t manage his fears and anxiety without support and medications. He sat quietly for a moment; shoulders slumped as he stared at his hands resting on the desk. He took a deep breath and with a surge of energy, leaned in on the desk to look me straight in the face. “You know what I wish sometimes? I wish that I would have lost a leg or an arm or have some form of disfigurement in my face or body. I wish that I looked disabled. Then people would be more empathetic and realize that I am living with something catastrophic.”

It wasn’t self-pity, he was stating the obvious. I had heard it before verbalized in different ways. Anxiety disorder and depression are sometimes referred to as a silent epidemic. However, in our society, it is often misunderstood, and its effects minimized, precisely because patients do not appear as if there is something wrong with them. They don’t fit the stereotype of “mental patient.”

Mike did eventually move out of the family home and into his own apartment with minimal supports. He enrolled at the local community college and began to think about becoming a peer mentor. The road to recovery with mental health issues varies for each person, as life does for all of us in general. Sometimes for every step forward, there are two steps backward, but the key is to keep going.

If you would like more information about mental health services in your area, please check out these links below.

SAMSHA (Substance Abuse and Mental Health Service Administration) at https://www.samhsa.gov/

NAMI (National Alliance on Mental Illness (a grassroots organization run by families and consumers) https://www.nami.org/About-NAMI

Mental Health Stories of courage and resilience Part 1

A to Z challenge and the letter Y

A few days ago I wrote a whimsical post about the fun side of living on the edge of reality. As I wrote that post, I made a promise to myself and to the ghosts of past clients, that I would tell their stories of courage, resilience, and survival. I knew just where to put it. I was working on the April 2018 A to Z Challenge and I worked on the story while waiting for the letter “Y” because Y is for The You Inside and I haven’t forgotten. Because these are the stories of real people, I wanted to take time and be true to them. I will post each story as a different part this week. I also decided to hold the post a few days because, since 1949, May has been Mental Health Awareness Month. This year Mental Health Awareness Week is May 14-20, 2018.

Case Manager Vs. Life Coach

In a previous life, I was hired by the Department of Mental Health to join an army of professionals and para-professionals. We were tasked with providing community services for persons with recurring and persistent mental illness as the push for deinstitutionalization continued from the previous decade. New medications were addressing the symptoms of their illness and we were going to help them return to their communities to find a “life worth living”. I was a Case Manager. Actually, I considered myself more of a Life Coach; I was ahead of my time. I can fill my days simply writing the stories of the men and women I’ve met. Instead, I will tell you of the snapshots that jump from my memory when I see the news or hear the debate about affordable healthcare.

For some reason, she wanted to die.

Time and again, I remember the day one of “the new girls” ran to our apartment crying and looking for my mother. They needed help because their mother had just eaten some rat poison. For some reason, she wanted to die. Days later, I accompanied my mother to visit the neighbor in the psychiatric ward. I didn’t remember seeing her before that day; she looked like death warmed over. We caught a glimpse of others on the ward; they looked the same, pale gray figures, walking in circles. It was scary. I was a just beginning my teens, it was the late 1960s.

Anne

I met Anne when she was in her late thirties. She had been a clerk for IRS when she had her first major “break down”. She had become angry and the police took her away. She was a tall, woman with a large build. Her short blonde hair was starting to turn gray and she glared at me with powder blue eyes. She explained that she had been angry because no one believed her story that the Mayor had raped her when she was a child playing with his daughter. We worked together for several years after that meeting and I learned her perpetual glare was more a sign of fear than defiance. She lived in fear, never knowing when “the cops would show up and haul her away for no reason.”

It was the mid-1980s. She had a long history of psychiatric hospitalizations precipitated by psychotic thinking and consequent irrational, uncontrollable anger; this was common jargon in hospital records back then. Her mother couldn’t confirm her rape story. No one bothered to corroborate it because it was considered a symptom of her illness. She carried the diagnosis of Paranoid Schizophrenia. She told me she had stopped her meds often because she didn’t like how they made her feel; she felt no need to elaborate. Anne had been discharged on an injectable medication to assure compliance. She agreed to move into a group home to increase her independent living skills. It was my job to get her an apartment in the community and provide support to get her out of the revolving door that kept her in and out of hospitals. Needless to say that it all sounded so much better on paper.

In our society, social drinking of alcohol is quite acceptable. Some people say it takes the edge off and they can relax. They feel more social. Unfortunately, we all know folks who are better off when they don’t drink at all. One particular year, things were going well for Anne. She had her own apartment in a nice part of town and had made friends with some neighbors who were not associated with her life as an ex-patient. Sometimes, they would all go out to listen to a band and have a good time.

Y is for the true You inside

Anne and I would talk about how to stay safe in the city and about the risks associated with mixing alcohol and meds especially an injectable medication. Part of my job, of course, was to point out all she had achieved while on the prescribed medication. I don’t remember the exact conversation or the words I used but I do remember something I said caused her to stand up and stared down at me with her powder blue eyes, holding back her tears “you don’t understand do you? You never will. Those medications take away my YOU. THAT’s who I really am. Who I’ve been from the day I was born. It’s my dreams, who I want to be. It’s MY reality. The one on the medications, that’s not me. The one everyone says is doing soo well”, she added with a touch of sarcasm, “She is a product of the meds.”

Irrational thinking starting to sound rational

She went on to ask questions like who determines what’s irrational. Who determines what right and wrong, what is true or not? And then she started telling me that no one knows that Bill Clinton comes to visit her and loves her. She explained that they had to let Hillary stand next to Bill in her place in the news because she looks better for the TV cameras. A part of me could rationally understand what she was saying about her dreams and her meds. I can’t begin to explain, however, what it feels like to watch someone lose their grasp on reality, know where it’s heading and feel powerless to stop it. It was her right to drink socially as it was her right to refuse medication and treatment. I’ll try to touch on the laws surrounding this in one of my other posts.
It was months before she ended up in the hospital again. Yes, the police were involved.

It was another few months before she was ready to go home again. Fortunately, we were able to save her apartment and she didn’t have to start at the beginning again, even so, it wasn’t easy to return to that place. Eventually, we found another apartment and she found another group of friends. I don’t know if she ever made peace with her You and her medications, but she certainly gave me an education that I could never repay.

Resources

You can find many more stories, resources to find services or general information for consumers and their families at the following sites:
SAMSHA (Substance Abuse and Mental Health Service Administration) at https://www.samhsa.gov/
NAMI (National Alliance on Mental Illness (a grassroots organization run by families and consumers) https://www.nami.org/About-NAMI

Please look out for my other posts related to this topic.

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