MARIANNE’S STORY by Marianne Clayter

When I was born I became me, a person, an human being. So before I became mentally ill I was a human busy be-ing. My dad was in the military. We traveled often. I am grateful for all the travels. I am a more well-rounded, open person because of this. My dad died when I was 18. My pastor took over the role of my father. He decided I was going to a Christian college. So off I went. I took a psychology course my first semester. The professor gave us all a personality inventory. When mine was returned there was a note on it from the professor asking me to see him. This was the first time I was called, “mentally ill.” I graduated from college and went home to live with my mom. I taught a couple of years in a Christian day school. Towards the last semester of the second year I became very ill. I was not asked to return in the fall. My pastor helped me get a job teaching in a pre-school. I was fired after a few months. This started many years of many jobs, never keeping one for more than a year, most only a month or less. I moved to NC in March of 1986. I lived with relatives. My sickness continued developing. I went into a psychiatric hospital for the first time in March of 1987. My relatives no longer wanted me to live with them. I moved and moved, and moved again. I became homeless living in a shelter. During my last stay in the shelter my Higher Power brought a miraculous blessing into my life. I moved into permanent housing in September, 1993. I have been in this same housing ever since. Two years prior to moving into permanent housing I had my last drink of alcohol.

I am blessed to have had this professor in my life. A whole new frontier has opened up for me. By being diagnosed as “mentally ill” I have been the opportunity for growth that most people only dream of. I’m reminded of an image that came to me years ago during my first hospitalization. I saw a garden overrun by weeds and thorn bushes. I knew that somewhere among those weeds there were beautiful, one-of-a-kind, flowers waiting to blossom, to grow, to spread their petals to the sun and sky. I realized the weeds and thorn bushes had to be pulled out one by one – that this process would take a lifetime. All along the way first one flower would present itself, then another, until at the end of my lifetime the garden would be in full bloom. Yet, there would be a few weeds left, because I am not perfect. I am human.

Persons who are mentally ill are each their own garden, with their own weeds and thorn bushes. And, with their own beautiful flowers – their own inner beauty. They have their own garden of life to hoe and get their hands dirty in just as I do. Just as I wish for the inner beauty of the spiritual self to blossom and grow, persons with mental illness, too, wish for a better life that has some one-of-a-kind flowers in it. I want to tell you about a few of those one-of-a-kind flowers in my life.

I was homeless for awhile at one point. From this I have a strong will to survive. I am more than a survivor. I am a cultivator. I lived in a homeless shelter 4 different times. Born from this is the advocate in me. For several years I was on the board of a homeless and housing coalition. I spoke before the mayor and lobbied in the legislature. I traveled within NC and shared with college students my story. In 1994 the City of Raleigh gave me an award for my work in the homeless/housing arena. During this time there were some great supporters in my life encouraging me to move forward, to challenge myself, to clear out some weeds and thorn bushes.

I also have been in jail. I learned the true meaning of freedom for me. One can be free in jail. It’s a matter of the spirit, the heart. For me, spirituality is what got me through. Today, my faith is very important to me in my journey of recovery.

During the Christmas season of 1987 I attended an office party for work. The hosts were serving alcohol. I chose to drink. I didn’t stop drinking for about another year. I ended up near death in the hospital getting a lot of blood pumped into me. From the hospital I went to a treatment center. There I was introduced to AA. It was here that I was introduced to the concept of powerlessness. This concept was freedom for me. I now know I am not responsible for what happened to me as a child. I also now know I cannot control people, places, things, situations outside myself. I learned about acceptance. In acceptance is the resilience to survive, to be a cultivator. I now have almost 14 years sobriety.

Between 1987 and last fall I have been admitted to psychiatric hospitals between 30-40 times. For a long time the hospital was my home away from home. It was a safe place; a place away from my responsibilities. At some point it started getting old. I realized my thinking and behaviors were skewed. Four or five years ago I asked a social worker during one my hospital stays how I could learn DBT in the community. I was hooked up with Wake County Mental Health. I began studying and learning DBT. DBT has proven to be the wheelbarrow of tools I was lacking. I now have tools to work in my garden of life, not just my hands and back. Tools to help me be focused in the moment on each part of my garden.

In the winter of 2003 I was meeting with my psychiatrist. She suggested I make contact with the Peer Bridger program. They happened to be holding an information session at the time I was seeing the doctor. My therapist showed me where to go. I met Colleen and some of the other bridgers. Construction began in my garden. Construction on a bridge that rivals the Golden Gate bridge. The bridgers took me by the hand and we began our journey together. It’s always more fun to work in a garden side-by-side with someone else. Using my newfound DBT skills and the support of the bridgers I began to work on goals. One goal for me since I have been in the Peer Bridger program is socialization. I have always been a loner, a quiet person. In recent years I have had the dream of having a group of people around me who will there for the rest of my life. Today this goal is being realized.

About the same time I started DBT I also started a part-time job. I was attending the Southern Women’s Show whenever I ran into my future boss. She was selling hand-crafted greeting cards. I began working for this business shortly after that, designing cards. When I became sick I lost my gifts of drawing and painting. This job gives me the creative outlet I need and must have. After never holding a job for more than a year I have kept this job for four years. I have learned skills that will help me move into a more substantial, satisfying situation for me. Out of this has come the desire to revisit those drawing and painting days. In the last couple of years I have been creating artwork again.

As for the future, I plan to take a class at Wake Tech in the fall to begin the process of reaching my educational goals. Eventually I want to give back to the Peer Bridger program and support others as they work in their gardens of life by being a peer support specialist. My childhood dream was to be a forest ranger. For various reasons this is not doable for me. So, I have modified my dream. I want to be a free lance writer and photographer filming and writing about the great outdoors and the people who are involved this environment. I also want to do real life stories about people who were in adverse circumstances and rose above them.

Bit by bit, inch by inch my garden is being cleared so the sun of the spirit and the water of life can reach in and grow beautiful blossoms. Along with some fertilizer and tender loving care from myself and others, I am lost in the flowers and I am loving it.

Choice or Chance?
Are you making your choices or taking your chances with your supports and treatment?
 

Once I heard a presentation by Dr. Sy Saeed, the Chief of Psychiatry at East Carolina State University Medical School.  He was addressing advocates, system providers, administrators, and residents in training at the medical school.

He said, “Life for consumers should not be like a Bingo game.”

He was referring to the minimal role people have in determining what happened to them through the service system.  He was talking about the lack of respect for our own “agency” as people with psychiatric or other disabilities. 

“Agency means to use your own capacity, as a human being, to act and impose your actions onto the world and not just accept what happens to you.”  (Quote from Wikipedia definition of Human Agency.)

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To understand how important choice is, we first have to come to terms with our own “agency.” That is, we are to be the actors in our own behalf.  We are to act on our right–no, our responsibility to choose for ourselves from the options available in our lives. 

Fancy words.  But the reality is that all to often, we yield our agency to others because in times when we have not been well, we have felt so ineffective and we have often given up not only on our own abilities, but on our own value! 

In North Carolina, it is time for us to become agents of change–that is, empowered agents of ourselves!  What does this mean?

  • We need to assert ourselves to become more informed before we make decisions. Uninformed consent is really not consent at all, but mere submission.   And submission doesn’t usually lend itself to a sense of growth or well-being. 

Are  you pleased with your provider?  You can ask for a change.  Do you have concerns?  You can address these with staff.  Are you being assigned several servcies from the same provider, yet you’d like to get some of your services from a second provider?  YOU HAVE THIS OPTION!  Even if your LME or your provider acts hesitant, these options are yours.  They will start responding more to us when we start stating our expectations of them–with respect due to them as people.

  • We need to ask questions of those who are to help us live better.  We mustn’t let our service providers or our doctors assume agency for us!  Remember, agency is a foundation to personal empowerment in our relationships.  Become and remain your own agent!

Does your psychiatrist truly hear what you are saying?  Does he or she give you medication that impairs your ability to function so much that it depresses you?  Have you ever made a list of questions or concerns that you can share with him or her?  Remember, you have the right to appropriate care.  Require it!                               

  • We need to establish clarity in our relationships with providers and others in our lives who may inadvertantly or deliberately threaten our sense of agency.  We must own our right to set boundaries and to define our role and our responsibility in these relationships.     

Do you feel your provider addresses you based on assumptions about you rather than on who you are and what you hope for?  Time to interrupt the conversation to establish realities about yourself, your experiences, and what your goals are.

There has been a bit of work done on the issues of shared decision-making in relationships and on how to shift the power so that it becomes equalized.  I hope you might find some of the links below helpful!

Most importantly, our services and our personal relationships will be much more rewarding and effective if we support each other to step forward into the future together!  We have nothing to lose, and everything to gain by leading our lives instead of subjecting ourselves to those who would try to lead them!

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GREAT TOOLS to CHECK OUT!

  • Express Yourself!  Assessment of your self-determination

http://www.cmhsrp.uic.edu/download/sd-self-assessment.pdf

 
  • Raising Difficult Issues with Your Provider
 
  •  Personal Medicine Worksheet by Pat Deegan, PhD

http://www.dbsalliance.org/pdfs/conference/2008/CG1.pdf