by Sandra Waller
[This article contains language that Mary Ellen does not currently use. She wanted this article to express Sandra’s feelings and not hers.]
This is the question that comes to me: How am I supposed to live? To stay alive. To keep on. For some reason I want to do these things. “You’ve seen a lot of horrible things,” said a therapist I went to. I looked up “horror” in the dictionary. “Trembling” is in the definition, also “great fear”. I have been at times in a state of great fear and trembling. Due to my brother’s severe mental illness I have, as the therapist stated, seen many horrible things.
Several years ago, my brother came to live with me. He didn’t wantto live with me as we never got along very well, but there was nowhere for him to go. He was homeless after being psychotic, illegally evicted in Massachusetts, bouncing in and out of six or seven hospitals in a short period of time. They couldn’t legally keep him there and he didn’t want to stay. He had always hated hospitalization and despite being diagnosed with paranoid schizophrenia or schizo-affective disorder, he had managed to work and have a life and friends. Then something happened and he got much worse. A friend called me and I drove down from Vermont several times. My brother wanted nothing to do with me. I didn’t know what to do.
The angry landlord kept calling me. Social workers, police called. They would keep him in a hospital and then let him out. He lived in motels where they didn’t want him either. He didn’t pay the bills; he became paranoid and called the police who came and the motel owners did not want him there because it was bad for business when he was led away in handcuffs to be brought to yet another hospital.
When I went to a support group and spoke of what was going on, someone there said my situation was terrifying. It was. I literally didn’t know where to go or what to do. When I went to see my brother in a hospital he would scream abuse at me and I had to leave. Now, he was someone who a social worker characterized as having no insight and judgment. My brother was once a brilliant man with a photographic memory and a wonderful sense of humor. Now his friend called to tell me he was in a room in a hospital with a guard at the door.
All of my life I have had a feeling of guilt about my brother. Why had I been spared mental illness? Why was I more or less OK? And I knew there were no answers to “why?” And though at times I didn’t want to wake up to more of the nightmare that I was experiencing, I knew it would not be right to spiral down into a life of despair although when you see someone you love with an expression that is ravaged and haunted, it is a sorrow beyond sorrow. How could I live when my brother’s life was one of enormous suffering?
I told a friend about my own awful feelings and she said what I know to be true. “You have been given a great gift,” she said, meaning life itself. And I knew that I had to remember that and live as best I could.
Many years ago I knew someone who was to become important in the field of mental health. He himself knew what it was to be hospitalized for depression. I was going on and on about how I had to find a way to help my brother. He told me that the best thing I could do for my brother would be to have a wonderful life of my own. This was wisdom I could not hear at the time. But now I know he was right. In the middle of the devastation that the illness has brought about I will not forget (which I have done in the past) to live in and appreciate what the world can offer.
So here are a few things I can do. I can’t always do them and they don’t always work, but they are something which is better than nothing. For one, I remind myself that I didn’t cause the illness. Just as I can’t cure my brother, it is not because of me that he is sick. This is something I have to keep in mind despite the recent case notes from a state agency which say that I am a toxic relation and cause my brother’s delusions to be worse. Since I am not that powerful I don’t know how this is possible. I have written to this agency in an attempt to note that family members for the most part are not to blame. Will they listen? I don’t know; I can keep writing.
Then there is anger. In his memoir, The Mental Traveler, [Greenhouse Review Press – 2009], Stephen Kessler writes that during a time of mental illness, one of his brothers began hitting him in frustration. I have at times been so angry that I wanted to hit my brother; I did not do this. In a course I took, it was consoling to know that other people had had the same anger and impulse that they did not act on. I know I have to remember that it is the illness and not my brother that I should be angry at. I have to remember to walk out the door and go someplace else to remind myself that the overwhelming nature of this illness is only a part of the richness of the world.
There are places to go for a cup of coffee, to sit by the calming presence of water, or just to walk, aimlessly and mindlessly and literally walk off the anger and while walking breathe in and out, take in the sights and sounds around one. In Israel, where l lived for a time, there was a saying, when someone was upset, that translated to “The World is Big”. And it is, mental illness, while it can be overwhelming, is only a part of it.
Besides the walking and the breathing as a way of calming down I am lucky in that I have always been able to lose myself in reading. I can enter into the world presented in a book and be away from the actual world that I inhabit. This is useful and even necessary. So there is so much to be thankful for just because of the ability to read and the love of reading.
Four times a week there is an exercise class given at the Senior Center in town. I go there when possible and besides the strengthening there is the benefit that the mostly ladies who go there like to talk while exercising. So I learn about where to get the best blueberries and strawberries and when the next theatrical production will take place and what yard sale someone got their latest fashionable shirt from. For a while I just wanted to isolate and not be around people. I was so profoundly steeped in sorrow. But movement, whether walking or exercise class can be an antidote to the feelings of despair. I once heard a song whose title I forgot, but it said something about how when women get the blues, they should put on their walking shoes.
I think in a way, what I have experienced of the fear that severe mental illness brings will always be with me, at some margin of consciousness. What will I learn from this?
One thing that I realize is that while I can’t control what happens, I can try to choose kindness in my interactions with my brother, with other people and in how I see myself. In the face of the world that has in it a surfeit of terror, in brief moments perhaps this kindness, to self and others, can help to bring about a type of grace.
Click here to read “Providing Sanctuary” by Mary Ellen Copeland
Mary Ellen Copeland, PhD, developed Wellness Recovery Action Plan (WRAP) with a group of people with lived experience who were attending a mental health recovery workshop in 1997. She is the original author of the WRAP Red Book, as well as dozens of other WRAP books and materials. She has dedicated the last 30 years of her life to learning from people who have mental health issues; discovering the simple, safe, non-invasive ways they get well, stay well, and move forward in their lives; and then sharing what she has learned with others through keynote addresses, trainings, and the development of books, curriculums, and other resources. Now that she is retired, and that, as she intended, others are continuing to share what she has learned, she continues to learn from those who have mental health issues and those who support them. She is a frequent contributor to this site.