© Jamie Moore and Rev. Rob Moore. All Rights Reserved.
Pathways Church
May 30, 2010
Rob Moore:
The Rev. Dr. Thandeka, a Unitarian Universalist theologian, writes "... if someone tells you that she or he knows pain, loneliness, loss, fear, and dismay, but does not know the feeling of being sustained by a love that is wider, deeper and infinitely vaster than the sorrows, hear those words as a commission. Hear your commission to love, to create community, and to heal." For all those who hurt and do not know the feeling of love larger than that hurt, we hope for nothing less this morning than loving, creating community and healing.
May is, among other things, Mental Health Awareness Month. So, on this next to last day of May, we want to share with you our journey with mental illness. By sharing our story we hope to share part of the love that has saved and sustained us on our journey. We hope to create community by enlarging the boundaries of this community to explicitly include folks who may share our story in some way. And by sharing our story of healing, we hope that you who hurt, and as the song says everybody hurts sometime, that you may begin to heal in whatever way is needed in your life.
This morning we will not give you a lecture on mental health and mental illness, we won't besiege you with definition after definition or a barrage of statistics. We will simply share our story. We want to break the silence that so often exists with mental illness. We want to share our story to show how ordinary it really is. We are just one ordinary family dealing with something extraordinary as so many other ordinary families have done and will do through their own illnesses, deaths, tragedies. Fortunately the story is not only about illness. It is also a story of love and community and healing.
We do have one caution to offer though here at the beginning. This story is our story. While the methods and treatments that have worked for us are common, their particular combination and effectiveness are unique to us. One of the dastardly things about mental illness is that treatment is so different from one person to the next. For some, the illness is genetic, biochemical and physical. For others it is situational. Therefore, some treatment is with medication and some with inner work and most often some combination of the two. So, if you are suffering in some way with mental illness, whether mild, severe or anywhere in between, seek help that works for you. It may take days, weeks, months and even years to find that right balance, but with the help of medical professionals, please keep searching for what works for you.
Now, our story.
Jaime Moore:
My name is Jaime Moore and I have ten years of experience managing my own schizoaffective disorder which is basically bipolar disorder also known as manic depression with some schizophrenic symptoms too. I have the classic, acute, form of the disorder: intense episodes of mania, intense episodes of depression, with fairly long lucid intervals in between. Prior to my illness' onset, I had suffered from mild depression off and on since childhood. But I had always assumed another physical condition was the source of my down moods.
My odyssey into mental illness began a couple of months after Zach, our younger son, was born, and I had started a new job requiring a lot of my energy. I remember making the conscious decision that no matter what, motherhood and my professional life would work out. I would make them work. I traveled for business, and when home, got up two and three times a night with Zach. We had an active five year old at the time as well. In addition to my schedule, Rob was primary care provider at home as well as finishing his degree program at seminary. We had a very busy schedule. And for about two and a half months, I was very productive. Then I began to get off track. As Kay Redfield Jamison says in her book 'An Unquiet Mind', the acceleration from quick thought to chaos is a slow and beautifully seductive one. People and events that had no overt relationship to each other started, in my mind, to seem connected. Once those feelings started, it was like a chain reaction in me. The more connections I saw and felt, the more obsessed I became by them. I focused less and less on my real life. I was in awe of incredible feelings of peace. It was the start of spring in Chicago, and people and plants seemed to glow with a beautiful radiance. Time expanded before me, and it wasn't long before I realized that I no longer seemed to need sleep. For a time, I moved deeper into a type of spirituality that was easy for me to practice. Then my feelings started to change. The connections started coming too fast, and I no longer had control over my thinking. Any stray thought could and did wander through my brain and side track me from whatever I was originally intending to do. I began having overwhelming feelings too. I started leaving early from work to check on my children because I had such an intense feeling that they were in danger. I also stopped trusting people and began seeing conspiracies. My 'new reality' was now a sophisticated metaphorical code. Everything had implied meaning. Next hallucinations set in. I had conversations with TV shows that talked back to me, and I misheard what real people were saying to me as well, further increasing my paranoia and fear.
Finally, in wild desperation, I went to a friend and asked her to help me end my pain, permanently. She did. But not in the way I intended. She, Rob and our minister brought me to the emergency room at the University of Chicago Hospital. I was not at that point really capable of understanding exactly why I was at the hospital even though I remember lying and saying that I did understand. Perhaps part of me did, I'm not sure. But having gone for many days without sleep, I was beyond wondering what was wrong with me. I just wanted my hellish experiences to end. I was admitted into the hospital, and it was several more days before my psychosis did finally end.
Rob Moore:
Herein lies the title of our sermon today - "Falling feels like flying ... for a little while." The reference is to a country song featured in the movie, Crazy Heart. When I first heard that song in the movie, it struck such a chord. Jaime's episodes often start off wonderfully. Everything is open and beautiful and everything and everyone is connected. But things don't stay wonderful for very long. When Jaime first got sick back in 2001, I didn't know what was going on! I wasn't yet in on the good stuff she described. My awareness kicked in when things started going south. I remember one argument we had in the middle of her episode and I was just trying to figure out where in the world this was coming from. It seemed so counter to everything I had previously known to expect from her. When the call came in that she was heading to the emergency room, it was in some weird way a relief that something was actually wrong and not just my imagination. It turned out not to be a relief for very long. I soon learned how serious this was and how sick she really was. I was scared and felt incredibly helpless and ineffective. I quickly fell into many of the stereotypes and prejudices of mental illness that circulate through our culture. I thought, "Am I going to have to institutionalize her? What does that even mean?" Then I flashed back to my experiences as a hospital chaplain early in my ministerial training and how scared and nervous I was just going to the psychiatric hall. "Am I now going to be living in a more or less psychiatric ward?" One shining moment in all those thoughts was when our minister came to sit with me and some friends in the emergency room. That minister made it clear that even in the midst of Jaime's illness, she still had a right to speak for herself and we had the responsibility to take her seriously. This jolted me like a flash back to our 1st Unitarian Universalist Principle of affirming the inherent worth and dignity of every person; even someone so clearly out of her mind at the moment. I was then able to relax a bit and let that minister take over for a while dealing with the hospital staff.
Jaime was of course admitted to the hospital and stayed for about 3 weeks. In those weeks she was there, I had a lot of help. My mom came to stay with me and the kids for about a month. It took a lot for me to ask for that help. I come from a stoic, polite-to-a-fault Southern family. We just don't talk about this kind of stuff. But if I learned anything in my ministerial training, it was not onlyhow to give help but, more importantly, how to ask for help. I think of it now as allowing others to offer me their ministry. In addition to asking for this help, another thing I did at this time that I didn't know was the right thing to do was to radically downshift everything in our lives. I went into survival mode, at least a middle class version of survival mode. I took care of the kids and made sure we were all fed and clean and visited Jaime and that's about it. I only did the minimum and let so much other stuff fall away. It was forced radical simplicity.
Jaime Moore:
Once the medications started taking effect, and I had a couple nights' sleep, I began to wake up to reality. My delusions dropped off one by one. I worried about Rob and Alex and Zach and my job. I felt immense guilt about my behavior, thoughts, and feelings. This was in large part because I had no real understanding of what had happened to me and no context within which to put it. My first psychiatrist was not all that helpful when he briefly explained my illness to me the day I was released from the hospital. At the same time he gave me a trifold brochure on bipolar disorder. And even though I was not psychotic anymore, my thought processes were considerably slowed down, and I had difficulty with any type of conversation. I couldn't imagine how I would go back to my professional life, and essentially I never really have. Once back home, I had a little while in the quiet eye of the hurricane. Then my depression hit. And fortunately for me, I was already heavily medicated.
I have a relative who suffers from severe depression, and he calls it the black pit. But for me, it is not so much about despair (although that certainly plays a role) as the immense effort required to think and function. Just physical movement is exhausting. Food is unappetizing, and my mind circles around feelings of hopelessness and worthlessness. The only thing that really helps me is to know that thoughts and feelings are not facts. I may not feel so well, but those feelings are a type of mild delusion that is not reality. And depression does end. For me, it tapers off gradually over the months until it's mostly gone. I am then able to reduce medications which in turn, reduce side-effects, and I feel even better. Feelings, including happiness, return to a very grateful person.
Rob Moore:
Even though Jaime was stabilized and on the slow road to recovery over the rest of that spring and summer, I still think back on this time as our 40 years in the desert. I can't help but think of the Exodus story for this part of our story. I have a little more understanding of what the Israelites went through during their 40 years in the desert - feeling alone and uncertain; often preferring the return to bondage to the fear and uncertainty they felt in the desert. Even though we haven't gone through 40 years worth, it has often felt like it. When Jaime returned home, it wasn't Jaime that came back. Her medication totally changed her personality and functioning. On top of that, we didn't know if it would be like this forever or only temporary. This is when the enormity of what we were dealing with finally hit me.
I became very self-involved and wondered how I was going to get through this. I was very angry that she went away and that even though someone came back it wasn't completely her. I was angry because I had it in my mind that she was taking away my graduation from seminary, taking away my future ministerial career. I trolled around for anything familiar and anything out of what we were dealing with. I focused on the kids. I focused on the house. I focused on my classmates and turned toward being with them and saying good-bye to those leaving for their first ministries. I turned to anything that took me away from what was going on at home. At the time I didn't think it was that obvious, but of course, Jaime felt my absence.
Fortunately for us we also had some great experiences that summer. We had a wonderful 6th birthday party for Alex and I put together and reveled in my Ordination ceremony. In the midst of all the negative energy around Jaime's illness and all of our reactions to it, these were shining moments of positive grace and love that nurtured and sustained us. In my Wellspring group a few sessions ago we talked about what gets us through times of crises and I talked about music. As I look back on that summer, I realized what an important part music played to get me through. Like many suburban boys of the 80s I have a heavy metal history that pops up from time to time - even now. But during this particular summer, I let my metal freak flag fly high and long. Whenever I would feel the anger or loneliness welling up inside, I would put on some Rob Zombie or Ozzy Osborne and rock out and pound those feelings into submission and release them into the ether.
I was also in the choir at our church during this time. Two of my favorite choir songs from that time were The Rhythm of Life with its chorus of "The rhythm of life is a powerful beat, puts a tingle in your fingers and a tingle in your feet" and Martin Luther King's favorite hymn, Just a Closer Walk with Thee, whose opening lines say, "I am weak, but thou art strong." These songs and music in general took me up out of my situation and gave me hope and connected me with others and with the Divine in a way that truly rescued me that summer.
Jaime Moore:
Recovery is not something that I think about in terms of a permanent condition. I do have long periods of wellness between episodes of mania or depression. While my goal is always prevention, even when I have done everything that I am supposed to do, including scrupulously following my medication regimen, I have still become ill. So, while I do believe that in the future medical science may perfect prevention and maybe even cure severe mental illnesses, for me, recovery means functioning the best that I can on a daily basis.
My recovery includes re-establishing my sense of self and personal meaning which gets partially obscured through the trauma of illness. I have had to contend with existential issues of reality and self-control that impact my sense of identity in a very concrete way. Normally I believe what I see, hear, feel, and taste to be reality, and I think most of us do. But I have experienced the opposite where I could no longer trust my perceptions. In mania, I have felt the love of the Universe flowing through everything I see, and also the constricting anxiety that my family is in great peril. Was either experience "real"? They were for me, but probably not part of our common reality. Because of Schizoaffective disorder, I perceive reality differently at various points in time instead of seeing it as a constant. It's taken me awhile to accept this about myself. Unitarian Universalism has been enormously helpful with this. At times of great difficulty, I have held on to the first principal of inherent worth and dignity of every individual, including me. Another key belief for me has been that the governing principle in human relationships is love which always seeks the welfare of others.
It is that love that I have held onto during my darkest moments when I have ultimately placed my faith in people who I knew cared about me. This was no mere belief that in the end everything would turn out for the best. I relinquished control of my body and I thought at times perhaps my life. I let go of everything. I was able to do that, in large part, because of the incredible people in my life. I am so very fortunate to have a loving family who has held on to me, no matter how ill I may be. This includes both our extended families. Rob and I have also been blessed to live in fantastic communities of people who have, in times of our great need, held on to our family. The first time I got sick, we were well cared for not only by our own church community but also by his seminary community of ministers in training! In 2005 when I got sick again, our Pathways community was here for us as well. I wish I was better at describing the healing power of this place. I have come here many times and not wanting to because the best I could do was to say 'good morning' and little more. But I feel that I am always given the space to find my place and to be here in the way that I need to be. One of the schizophrenic symptoms I have at times is an inability to converse. Knowing I needed to work on this and wanting to participate more in community life, Julie Lambert (our former Director of Religious Education) encouraged me to volunteer as a teacher in religious education classes. This gave me a much needed boost to contribute my time and energy, and the kids never even noticed that I was occasionally monosyllabic. Volunteering here at Pathways helped give me the confidence to go back to work again. I cannot underscore enough the great benefit community is as a part of recovery.
Rob Moore:
When I hear Jaime describe her recovery process and think also of my own, I hear three main themes - learning what to let go, learning what to pick up again and the importance of religious community.
Jaime and I have talked many times about how this illness has been a crash course in the practice of letting go. As she describes, Jaime has had to let go of many ideas about who she was and is. She had to let go of who she was at work and as a working being. She had to let go of what she thought reality was and is. Hearing teachings about letting go of the small, ego self takes on a brand new meaning, depth and confusion when you add mental illness to the discussion. She has even had to let go to some degree of the spiritual path. Trying to attain some connection to your larger, spiritual self takes on troubling possibilities when you have experiences that begin with wonderful connection and meaning, but then take a turn down terrifying paths.
I had to let go of my image of who she was and is and try, try, try to accept her for what she is right now. That was my great challenge during that first summer and it continues today. When she came home a completely different person, I had a choice to make - was I going to resent her for the rest of our time together or was I going to forgive her and her illness and accept things the way they are? Now I really tried to hold on to the resentment for a long while. I felt I had a right to it and I clung to it for all it was worth. But of course that was no solution and no way to live for me, for her and for our children. Somewhere along the way, I chose the second option. I had to let go of that anger and resentment and slowly, slowly I did. It was not some big movie moment of forgiveness or letting go, it was just the healing of the everyday; the healing of committing to being together as we went about our daily lives; step by step, just hanging on from one day to the next.
But then letting go slows at some point and we have to begin picking some stuff back up and also deciding what not to pick up. Jaime mentioned that she never has really reclaimed her career. Once we realized that stress played a factor in her illness, we intentionally chose for her to not work for awhile and when it was time to pick up work again to find a job that was a lot less stressful. Even that somewhat obvious strategy has been a difficult transition as it contained a lot her self-image and feelings of worth and usefulness.
Which brings us to picking up the Unitarian Universalist 1st Principle. We have travelled many miles hanging on to that one. We have had to know and feel the inherent worth and dignity in a deep and elemental way. When I was trying to hold on to my resentment, the 1st principle wouldn't let me. I had to acknowledge her worth and dignity and mine as well. When she was in the depths of her depression and medicated flatness, Jaime struggled to hold on to her own worth and dignity. When all you have ever known about yourself suddenly comes into question, you have very little to draw on. Clinging to that basic notion of having worth and dignity becomes a vital foundation from which to rebuild yourself and your self-identity. Jaime has worth and dignity even with a mental illness, I have worth and dignity even when I don't live up to my own impossible standards of how I should have behaved during her illness and you have worth and dignity even though you have whatever you have that you beat yourself up over time and time again.
Then there is the blessing of religious community. We were so lucky to have been involved in religious community during her illness episodes. Having a minister help us out in those first few hours was a true salvation. Having a church community and a choir to belong to kept some normal routines going and gave us a space to be in quiet acceptance with each other and with the holy. Having the seminary community and all the friends within it was also a saving moment in our journey. Those friends helped us with everything from baby-sitting to dish washing to just allowing us to be present with them and enjoy ourselves with them and through them. Jaime described how important Pathways has been for us as well. Pathways became a true community for me when the Efthymiou's welcomed me and the boys over for Thanksgiving dinner when Jaime had just been admitted into the hospital again. I cannot express enough gratitude for that simple act. I don't think they knew then or will ever really know how much that meant to me and still does.
Religious community is so important for healing of any sort. This is where we are called to be present for one another, to encourage one another, to comfort one another, to love one another. This healing comes in the form of food delivered in a crisis, rides to appointments, visiting at home or hospital no matter what, just a smile and a warm welcome or simply creating a sacred space for us to be all of who we are.
Ours is a story of illness, suffering and many trials. More importantly it is a story full of love, community and healing. If you are hurting, it is our hope that our story will give you permission to share your own. It doesn't have to be about mental illness. It can be about whatever troubles you at this moment. Whatever it is - speak it, share it so that your burdens are lessened and the ministry that lives in this place can be shared with you. When you share your story, may you find love, may you find healing. If you are not hurting right now, open yourself to the ministry that is within you. Share your love, your community, your healing. Be there for another. This is truly radical hospitality. May we always feel it, offer it and share in it together so that we may share our love and healing far and wide. Amen.