Getting Well: the Seeds of WRAP

seedsThe Seeds of WRAP:

This article was written by Mary Ellen Copeland in 1995, before WRAP was developed. The seeds of WRAP are clearly being formed through the gathering of the 5 Key Recovery Concepts: Hope, Personal Responsibility, Education, Self Advocacy, and Support, that are so obvious in these first steps of Mary Ellen’s road to recovery. You can see how she began using what we now call Wellness Tools, those tools that helped her through that difficult time, and how she began to observe the Early Warning Signs that told her she needed to take action before things got worse.


Getting well is a process that began for me a long time ago. I never expect to finish. Given different responses from my supporters and health care providers in my life, my journey might have been very different. In this article, I want to share what did happen and how I actually am getting well. At the conclusion of the article I will share some perspectives on how I think my life could have been different (and a lot of pain averted), and how mental health challenges might be more appropriately dealt with to keep us from becoming “chronic mental patients”.  Keep in mind that responses to particular treatment, management and self help scenarios varies with each individual. There is no one answer for everyone. We have to each search out the right path for ourselves.

When did my mood instability start? I think it began when I first felt that I was different from other kids in school. I didn’t know what was different about me, but I knew something MEC-childwas different. Was it because my friend was hit by a car and killed when I was walking home from school when I was five years old? Was it because my mother was in a mental hospital? Was it because I never felt wanted, affirmed or loved? Was it because there were two older male relatives who harassed me and molested me for many years? Was it because a caretaker kept telling me all the things that were wrong with me? As I look back at pictures of me when I was a little girl, it is clear that I looked like any other kid. What was it in my mind that made me different?

Sometimes I gave in to the despair and spent as much time as I could, alone in my room, crying uncontrollably. At other times I responded to the bleak circumstances of my life by being a “too bright and cheery” overachiever. There never seemed to be any middle ground. Even back then, as a child and as a teen-ager, I was looking for answers, ways to feel better. I became an avid reader of self-help magazine articles and books. I tried diet and exercise. I constantly tried to achieve an elusive perfection. Nothing helped much.

But I got by. When I finished school, I did all the things women were supposed to do in those days. Go to college, get married and have a family. Sometimes everything seemed so hard. Other times everything seemed so easy. Was everyone’s life like this? Trying to keep going or going too fast.

Then there came a time when the sadness got too deep. I couldn’t get out of bed, much less take care of my five children and administer the small private school I started when I was feeling “up”. I went to see a psychiatrist. He listened to my story and said there was no question about it. I was manic depressive (now called bipolar disorder), like my mother. He said lithium three times a day would take care of the whole problem. What an easy answer! I was thrilled.

For ten years I took my lithium and continued to do everything I could to improve myself. My life continued to be very chaotic. But my ups weren’t so up, and my downs weren’t so down.

Then I was overtaken with a dangerous episode of lithium toxicity. Why hadn’t anyone ever told me that if you keep taking your lithium when you are dehydrated from a stomach bug, you can get lithium toxicity? Come to think of it, I knew very little about this substance I was so religiously putting in my mouth. Although I was doing everything in my power to keep myself well, I still felt that the ultimate responsibility for my well-being was in the hands of my psychiatrist. I was totally trusting that he was making the right decisions in my behalf.

After the experience with lithium toxicity, my body didn’t seem to want it anymore. Every time I tried to take it, the symptoms of toxicity returned. And without it those deep dark depressions and periods of high achievement returned. Only now they were overwhelming. The depressions were dark and suicidal. The “high” moods were totally out of control. Psychosis became a way of life. I lost my job. Friends and family members backed off. I spent months on the psychiatric ward. My life felt like it was slipping away. They tried one drug after another, usually several at a time. Nothing seemed to bring me back to life.

Through the haze I was searching for answers. I wondered how other people with these kinds of episodes get by. They couldn’t all be like me-unable to work and almost unable to take care of myself. I asked my doctor how people like me get by on a day by day basis. He told me he’d get me that information. I looked forward to my next visit with great anticipation, fully expecting to find some answers. What a disappointment! He said that there was information on medication, hospitalization and restraint, but nothing on how people live their lives.

I took this dilemma to my vocational rehabilitation counselor who was trying desperately to find a place in the world for me. I described to her a dream, a dream of finding out how others with depression and manic depression keep themselves stable. To my surprise she supported my ideas. With her as my backup and the help of a Social Security PASS plan, I began a study of 120 people who agreed to share their strategies for keeping themselves well.

MEC at computer

As information started coming in, my foggy brain got scared. How was I going to compile this data and put it into any kind of format that could be useful to myself and others like me? I kept plugging away.The information was so fascinating that I was drawn to it. Once again I had something meaningful to do. I think my return to wellness may have started there.

The first and most important thing I learned from compiling this data was that there is lots of HOPE. Contrary to popular belief, people with recurring high and low moods, get well, they stay well for long periods of time, and they do what they want to with their lives. This message of hope, which I had never heard, must be spread by all of us who know it is true.

I soon became aware of a clear difference in responses from study participants. Some people were blaming their instability on everyone else. “If only my parents hadn’t…..”, “if only my doctor would try…..”, “if only my fourth grade teacher had…..”, etc..  Up and down moods were controlling these people’s lives. Others were taking responsibility for their own lives, advocating for themselves, educating themselves, getting the support they needed, etc., These people were getting well and staying well. You can bet I made an about face at that point and joined the ranks of people taking responsibility for themselves as fast as I could adapt. That was the first giant step on my way back to life.

Then I learned from these people who had so much knowledge to share, that I had to advocate for myself, no matter how difficult that might seem for someone with wildly oscillating moods and self esteem in the basement. I began thinking about what I wanted for myself in terms of treatment, housing, relationships, support, work and activities. Then I figured out strategies to make these things happen and went for it. Things began to change in my life and they continue to change. My life gets better and better.

As many others have done, but I hadn’t, I began to educate myself. I read everything I could about depression, manic depression, medications, and alternative treatments. I contacted national, state and local organizations for help in this process. I told my health care providers what I wanted and expected from them rather than depending on them to make decisions for me. I began to take better care of myself. I developed a plan that instructed certain people to make decisions for me in the event that I couldn’t make them for myself, and told them how I wanted to be treated in these circumstances. Through this effort I discovered that, even though I had been hospitalized at several major medical centers, no one had bothered to give me a complete thyroid test. I found that I had severe hypothyroidism (hypothyroidism causes depression), which needed to be treated. Once that treatment began, my mind really began to clear and my progress was remarkable. I got connected with the national movement of psychiatric survivors. I began attending meetings and conferences with other people whose journeys had been similar to mine. I felt validated and affirmed. I began teaching in earnest the skills I was learning through my study to others who could benefit like I was.

With the help of several excellent counselors, co-counseling and numerous self-help resources, I undertook the task of getting to know myself in a successful attempt to discover early warning signs of impending difficulties, and, in effect, cut them off at the pass. At first I developed detailed daily charts to assist me in this process. As I got to know myself better, I found that I didn’t need to use the charts anymore.

Now, as I notice early warning signs I relieve them with a variety of simple, safe, inexpensive or free, effective self help techniques including stress reduction and relaxation techniques, talking to a supporter, peer counseling, doing activities that I enjoy and that I know make me feel better, exercise, improving my diet, and simplifying my life.

I have discovered my diet really affects the way I feel. If I overload on junk food, sugar and caffeine, I soon find myself feeling lousy. If I focus my diet on healthy foods, I feel great. I have gotten in the habit of keeping a variety of easy to fix, healthy foods on hand so I won’t succumb to the junk food trap when I don’t feel like cooking.

Walking

I try to get outside for a walk every day. This gives me two things: exercise, which always makes me feel better, and light through the eyes which I have found also helps. Light has been a big issue for me. As the days get shorter and darker in the fall, my winter depression begins to set in. I have virtually eliminated these winter depressions by getting outside for at least half an hour a day, and by supplementing my light for two hours in the morning with a light box.

I got rid of my electric blanket and substituted a warm comforter after discovering the hazardous effects of being wrapped up in an electromagnetic field all night. I noticed another positive upswing in my overall wellness after making this change. I finally realized that I create my thoughts and I can change them. I have worked hard at changing old negative thought patterns that increase depression into new, positive ones. I think I will always be doing this work. For example, when my mother was depressed, she would often repeat, over and over, thousands of times a day, “I want to die”. When I got depressed, I started doing the same thing. The more I said, “I want to die”, the more suicidal I became. I finally realized that if I said instead, “I choose to live” I felt much better and the suicidal ideation decreased.

Another thought that plagued me was, “I have never accomplished anything”. I decided to take a different approach. I decided I had accomplished a great deal. For a while I became quite fanatical about making long lists of things I had accomplished. Everything from getting up in the morning and completing kindergarten to two masters degrees and raising five kids was on the lists. After a while I realized I didn’t have to make these lists anymore, that this negative thought was no longer a factor in my life. When negative thoughts become obsessive, I wear a rubber band on my wrist. Every time I start thinking negative thoughts, I snap the rubber band. It reminds me to focus on more positive aspects of my life. A rubber band on my wrist is a cue to family and friends that I am working on obsessive thoughts. Using cognitive therapy techniques to reinforce positive self-talk, by treating myself better and better, and by spending time with family members and friends who affirm me, I have raised my self esteem out of the depths. When I notice I am starting to feel badly about myself (an early warning sign of depression) I repeat over and over my own personal statement of my worth. It is, “I am a wonderful, special, unique person and I deserve all the very best that life has to offer”.

Working with several exceptional counselors, alternative health care providers, and using a variety of self-help resources, I have learned a variety of stress reduction and relaxation exercises. I use these techniques daily to increase my feelings of wellbeing, reduce anxiety, and help me sleep. When I notice that I am having early warning signs, I increase the number of times a day I do these simple deep breathing, progressive relaxation exercises.

I have learned that I need to have a structured support system that I can call on when the going gets tough, as well as to share the good times. I have a list of five people (I keep it by my phone), with whom I have a mutual support agreement. I keep regular contact with these people. We often get together for lunch, a walk, a movie, or some other activity we both enjoy. When things are getting difficult, I call on them to listen, give me advice and help me make decisions. And I do the same for them. This has been a tremendous boon to my wellness.

I met some of my supporters through regular attendance at support groups. Others are family members or old friends with whom I now have a mutual support agreement. I find that people are more willing to be my supporters now that I work hard at taking responsibility for my own wellness. They like the mutual support arrangement- it has to go both ways. When I realize a supporter is not asking as much of me as I am asking of them, I treat them to lunch or a movie, buy them a small gift, or help them with a chore. My supporters like to know that they are not the only person I am depending on. They know that if they are having a hard time and can’t be any help to me, there is always someone else I can call. My counselors have helped me let go of some poor social skills that have also made it easier for me to have a strong support system.

My supporters include an excellent team of health care providers that include a top rate counselor, a general physician, several body workers, and alternative care consultants. I keep reminding myself, “I am in charge”. If someone suggests a possible treatment, I study it thoughtfully before making a decision to proceed.

I use peer counseling a lot. I need to use it more. It really helps. I get together with a friend for an agreed upon length of time. We divide the time in half. Half the time I talk, cry, fuss, shine, shake, whatever feels right. The other person listens and is supportive but never critical or judgmental, and refrains from giving advice. The other half of the time is their time to receive the same service. The sessions are totally confidential.

Focusing exercises were recommended to me by colleagues in England who use them regularly to avoid episodes of depression or mania. They are simple self-help exercises that help me get to the root of my feelings. Whenever I start to feel overwhelmed I lay down and relax. Then I ask myself a series of simple questions that lead me to new insight. I often suggest that others read a book on focusing or go to a focusing seminar.

One very important decision I made is that I will never again consider suicide or try to take my own life. I have decided I am in this for the duration and I will face whatever comes up. And since I made that decision I have had to do just that many times. I have reinforced that choice over and over again and do not allow myself to dwell on suicide.

I look back on my life and think about how things might have been different.

  • What if, when my friend was hit by a car, the adults in my life held me, let me cry, affirmed my fear, pain and loneliness, and sat with me all night when I was having nightmares, instead of trying to fill my life with activity so I would “forget”.
  • What if, when they took my mother off to the mental hospital, someone had held me and comforted me and acknowledged my sadness rather than leaving me to cry myself to sleep?
  • What if the adults in my life had protected me from the boys who were harassing and molesting me rather than telling me I must be doing something to “lead them on”?
  • What if my caretaker had praised me rather than criticized me? What if she had told me how pretty and bright and creative and precious I was so that I believed in myself instead of thinking I was a “bad” girl?
  • What if my schoolmates had surrounded me with loving care instead of ostracizing me because my mother was in a mental hospital?
  • Why did they think my mother would get well if they locked her in a dark smelly hospital where she slept in a room with 40 other patients, with no privacy, no affirmation, and no support; a living hell? Suppose treatment had instead consisted of warm, loving support? Maybe I would have had a mother when I was growing up.
  • Suppose that first doctor who told me I was manic depressive had told me that my wellness was up to me, that I had to learn about mood ups and downs, that a complete physical examination was necessary to pinpoint the cause of the instability, that diet makes a difference, exercise is a great help, that appropriate support can make the difference between a good and bad day, etc.?

A future best-case scenario intrigues me – my vision of how people who are overwhelmed with uncomfortable feelings and behaviors might be treated in the future. Treatment would begin when we requested it (which, given this scenario we would certainly do more often) for overwhelming depression, frightening delusions or hallucinations, or obsessing about suicide or hurting ourselves. When we reach out for help, warm, loving care people offer us a variety of options, available immediately. Options include a cruise ship, a mountain resort, a ranch in the Midwest, or a swanky hotel. All include opportunities for consultation and treatment with top notch, caring, health care providers. A swimming pool, Jacuzzi, sauna, steam room and work out room are available at all times. A choice of healthy food is offered. Creative expression through a wide variety of mediums is available. Massage and other kinds of bodywork are included when requested. Classes in stress reduction and relaxation are offered. Support groups are available on a voluntary basis. Warm supportive people are available at all times to listen, hold, and encourage. Expression of emotion is encouraged. Family members and friends chosen by you are welcome to come along. When preferred, such services might even be available in your home. Understanding employers would be glad to give employees time out for this wellness promoting experience. Given these circumstances, how long would it take you to get well?

 Read Part 2 – “”WRAP is Born”   

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