-16- IN THE PIT OF DESPAIR PRAYER I am lost, oh Holy Mother, I do not know where to go. Please guide me, show me, Light the pathway I should take. I am lost, confused, afraid. Unknowing what I want much less what I need. I live in a circle, always repeating the same things, Nothing changes for the better. Please help me, Holy Mother. Free me from hardships and pains. Show me where I should go and how to get there. Guide me, Send me your blessings. Grant me the courage and strength I need. I feel so very lost and frightened. Help me find my soul again. P. Griffiths, 1994. ----- In the deep, dark recesses of the night the mind which is denied the escape of sleep will wander into places where it normally would not go. Places it should not go. The places of living are places of light, as far away from the deep pit of despair as it is possible to be. Here in the darkness is where the mind is wracked by the pain of the psyche added to in large measure upon the never ending pain of the body. Here is where the mind finds itself wandering, into the places of the living dead. It is not an easy task to describe the emotions felt when one is sitting on that razor's edge between living and dying. Some feelings are heavy and black, dragging you down even further into the abyss. Other feelings are already dead and gone, the light and pleasurable ones. Pain is constant. Pain is why you are awake in the cool stillness of the night for your mind to wander into these dark corners and hidden places. What is one to do when one finds ones self trapped inside of terriffic nightmare even in the waking hours? Physical pain is intolerable and there is no hope of reprieve. The only feelings here are of being abandoned, isolated and ignored. All dignity and pride along with every hope and dream ever held have been stripped from the psyche. Shame rages, shame for even still being alive as a burden to others. What is left when the body and will are too weak to to fight and too tired to flee? What option is left besides death? I don't like thinking about being in that place, the pit of despair, where I prayed each night for a sleep that would not end. I would have ended my life but for the shame factor. I was so deep in shame that I was certain that I would even fail at that desperate act which I longed to take to end my agony. But I fantisized about dying, ways of dying, craving the release of oblivion from my agony of body and soul. And so I did not die, not all of me anyhow. The body which held my spirit did not die even though the spirit of the person I knew as me no longer lived. I was deep in mourning for the self I had lost, and it seemed to me that nothing was left but the empty shell which now chained me to an empty, pain filled existance. I had retreated into myself, staying in my room with my cat friends for the most part. That little room was my sanctuary. Don and I had not shared a room in months. My sleep would be light, so light that the sneeze from a cat outside the door in the hallway beyond would arouse me, while Don could sleep soundly through alarmclock and telephone both sounding off togeather a few inches from his head. While Don slept deeply, I slept lightly and once awakened fell back to sleep with difficulty. The CFIDS/ME often brought about severe headachs which caused any movement at all to bring about jolts of nauseating pain to sear through the back of my skull and rebound throughout my nervous system until every nerve fiber in my body throbbed in rhythm to the beat of my heart. The world would swirl in blackness around my head as my insides seemed to be trying to turn inside my body in the opposite direction. Relief was found only in the still, quiet darkeness of my bed. Although he tried to be still, Don often tossed and flopped about the bed, which caused me much agony as my tender muscles and joints screamed in pain at every jarring until I felt as if I had been cruely beaten. The CFIDS/ME not only heightened my awareness of movement , sound and light, but it also heightened my sensitivity to cold. Don prefered a cold room to sleep in, and the unheated bedroom we shared had been quite comfortable for him. For me the cold of the room cut deeply into every aching fiber of my tortured body like a jagged knife ripping my flesh and bruising my bones. It was hard for Don to lie there and not toss about, nor reach over to try and comfort me from my pain. It was hard having the woman he loved share his bed yet shrink fearfully from his caress, the act of love having become an impossible act of pain. So when I could, I left the shared bed in the painfully cold room. I had the tiny room that had once held my youngest son before he moved into a vacated basement room. It was a much warmer room and in it I had my warm, soft waterbed. It is not a large bed, only big enough for one person and a cat or two. It is tucked close to the outer wall, under the slope of the house roof, in the corner where the roofline ends in a gable peak with the side wall of the house. A small window overlooks the side yard and the flowering dogwood tree, letting in the morning sunbeams to paint rainbows on the far walls as they pass through the crystals hanging from the edge of the blind. The window is the old-fashioned double hung kind with a small top part that slides down and a larger bottom part that slides out. On the opposite end of the room, under the slanted ceiling of the roof is where my old student desk then sat, with my colored pencils in old ceramic pots and small tins along the wall. A rickety old folding metal card table type chair awaited my use. Each night I would pray. This prayer time had become a ritual for me, a time when no one in the house would disturb or intrude upon. I would not allow it. Only Mao or Panther would be allowed to be in the room with me. The door to the room would be closed. Upon my dresser I would light a candle that I placed infront of the old, heavy wood framed mirror that sat perched there, leaning upon the wall. I often would light an stick of incense before turning off the room lights. I would then sit on my bed, facing the candle, and pray. I would pray until the incense had burned away or the candle had gone out, and sometimes I would pray for hours. Often I would continue to pray after the candle was out and I was in bed, until I would finally fall asleep. I prayed because I felt that although I was useless as a wife, housekeeper, wage earner and mother, at could still pray. When I prayed, the dark brooding thoughts would be kept at bay. I would pray the same way each night, and I would ask for the same things. I would pray to God the Mother/Father, creater of all things. I would pray that Don's mother, Dorothy, be cured of her cancer. I would pray that my brother, Garry, be made well and his heart condition healed. I would pray that Don and the kids find work, and be spared hardships. I would pray for the health of my cats. I would pray that everyone I knew would be delivered from their pain and hardships. And when I felt too depressed to even pray, I would ask for the strength to pray again. I asked to be delivered from my suffering as well, praying that I not again awaken to the torture that I had suffered again that day. This nightly ritual had been going on for several months when I began to lose hope even here. Dorothy's cancer went into remission and Garry was having no further health problems, but I could not see that my prayers were doing anyone any good. My world had continued to shrink in around me, and deeply I mourned the life I had lost. I was getting sicker all the time, and my doctor knew of nothing that could be done to help. Many days I could not leave the room at all, the few feet to the bathroom was all I could manage. I was alone, abandoned to my tiny room by everyone but the cats. In my dispair I questioned if I could even manage to get the praying right. Then I gave up even that. It had been only a few nights since I had given up on my nightly ritual. The room was dark, blinds and door closed. Mao was laying at my side, streached out with his head on my arm as I lay on my back in the bed. Usually he prefered the outside of the bed, but tonight I had been having tiny bladder problems which ment that I was getting up often to go pee. Mao had chosen to be on the wall side of the bed this night. As I lay there in the quiet stillness of the night I was able to quiet my thoughts and focus only upon the soothing sound of Mao's purr. I was drifting off to sleep when suddenly the purr stopped and Mao jerked his head from my arm. I was startled, just as he seemed to be. I looked at Mao only to see him frozen half risen from the bed, staring at a point nearby where the bedroom wall begins its curve up to the ceiling along the slant of the roof. What Mao was looking at caught my gaze as well, and I too was frozen in awe. A thin, radiating glow began to eminate from a point beyond the wall, through the wall. Slowly, the orb of aura like light emerged through the wall. In it's centre hung the deep purple silloette of a robed figure radiating a gold/silver/white light. As the vision hung there, just within my room, I glanced back at Mao who was still transfixed upon the sight. I looked away, pinched myself, then looked back. Whatever it was it was still there. I was afraid, too afraid to try to touch whatever it was that was there. Just as slowly as the vision had materialized, it then faded. First the figure, then the orb. Then Mao moved, collapsing into the bedcovers. We had both seen whatever it was that had come through the wall. I then turned on the light beside my bed and made notes of what I had seen. The next day I would make a colored pencil painting on the night visitor. When I told Don of my vision, he did not seem surprised or shocked, nor was he patronizing to his obviously crazy wife. He calmly remarked that he did not know why people find it so surprising to get an answer when they pray for something. I had asked if my prayers were even being heard, if my act of prayer was not just another act of futility. Why should I be so surprised to get an answer? MY DRAWINGS I had begun to draw about a month before the night visitor had paid me a call. Unable to cope with the stairs to the main floor of the house, unable to read and unable to sleep. I found sounds annoying and found that a radio or tape player only sat idle. But the bored mind will wander into dark places and feed depression and dispair. I had to do something, I was going stir crazy. "What can I do, what should I do?" I would ask to no one in particular. No one in particular would whisper in my ear, "Doodle, draw". " But I can't draw," I would protest back. "Then doodle," would come the reply. Yep, I thought, I'm going stir crazy all right. I was not only talking to myself but carrying on a conversation as well. The conversation between myself and no one in particular continued to repeat itself several times during the next few days. "This is getting ridiculous", I said to Panther one afternoon. I gave up, and sat down at my desk. Out of one drawer I pulled a sheet of typing paper and out of another I dug out an old package of half used colored pencils that were leftovers from Chris's elementry school classes. I did not think or plan what it was I was drawing, I did not have the mental ability to plan anything at all. I would simply pick up the pencil and draw, like a person doodling while talking to someone on the phone. I doodled and I then coloured the doodle. One page would take me an entire day, even longer. I didn't know what I would draw. I just would let the pencil go where it may, and I discovered that whatever emotion I was then feeling would flow out of my body and onto the page. If I was feeling anger, the colors and lines would express that anger vividly and once I was done I would have no anger left in me. It was all on the page. Once I was finished with a piece, I'd tape it to my wall. I felt great satisfaction when I looked at what I had done. I don't know why I felt that way, I just did. I continued to draw and paper my walls with the drawings. I did not just draw my emotions. I drew cats. Days and then weeks passed as I drew. My cats were my constant companions as I sat in my little room. Mao cat is the fellow who owns me. He is a fellow of black spotty stripes upon a dappled coat of black,grey and tan stripped furs. He would not eat if I did not, and would not leave my room to even go pee unless I went downstairs. Danny cat is a large white fellow with long, fine, silky fur and a yowly voice that talks human talk very well when he wants to. He would sit at my doorway and pose statue still for me to draw him. Panther, a small black and sleek young tomcat would "snark" out in frenzied play until I laughed with his antics. Panther and Mao would take turns cuddling me when I needed cuddling, as they still do. These three tomcats would not let me wither away into myself beyond all contact with the world beyond my room. LEARNING ABOUT MYSELF My drawings were much more than just a way to pass my time or to release the inner pain and turmoil from within myself. By doing the drawings I discovered things about myself that both surprised and delighted me. I could still learn new skills and I could still meet basic goals. I had set myself a goal of drawing 101 cat theme pictures in a year and I accomplished it in three months. My dignity and self respect were slowly returning through cat cuddles and the putting of colored lines upon paper. I was venturing out of my room more and more, and spending more time in the company of family members. I was regaining my dignity. I was doing this by throwing away the acceptance of my illness and the restrictions it had put upon my life. I had become an invalid and had in my mind in turn become invalid as a person. I was now finding a new basis of acceptance, by accepting myself as a human being. A worthwhile human being. A person with a right not only to a life but to live that life. I was determined to be a victim no more. I would be a survivor. I could draw, so draw I did. Draw I still do. I also had to accept my illness, but this time on my terms, not the terms of societal programming nor of self destructive abuse or of anyone elses expectations or definitions. My spirit was directing the terms this time, and they were different terms indeed. NEW RULES I was learning to accept my illness from a position of strength. In doing this I had to change the rules of myself, for myself. This revelation did not take place overnight, but the process had begun. Rule one: I am not my illness. Rule two: The playing field has changed, therefore the game has changed, therefore the rules have changed. Rule three: Discovery of the new rules will allow me to play the new game. Rule four: Accept the new rules and devise the game plans accordingly. I had a long way to go, but now the journey out of the Valley of Shadows had begun. ----- A LIFESTYLE TO RECONSTRUCT Once I was able to start on finding my lost dignity and self respect, I began to also regain the motivation to fight for myself and for my well being. I was not just dismayed by how limited my life had become, I was appalled. I had let the illness close in on me and close down my world under a gray of cognitive fog that I had not even attempted to penetrate. I had lost the self that was. All the "rules" I knew applied to the old self, and she no longer existed. In order to discover the new "rules" I had first to discover the identitly of the person I now was. I also needed to discover how I now fit into the scheme of things in the world which I lived. My family was the place to begin to make discoveries and changes. I had rationalized Don's sometimes hostile neglect of me as a result of the pain that he was facing in his own life. I was a wife who could no longer take care of him in the way he was used to be taken care of. I , through my illness, had become a terrible burden to bear in addition to the deaths of first his older brother and then father within a month's span; then his grandparents and finally his mother - all within a time span of five years. Our children were now young adults and leaving home. And still Don was having difficulty finding long term employment. Midlife crisis had pounced on Don and he shuddered under it's weight. I had deemed myself as an unworthy wife because I could not even look after myself let alone my family, and had slid deep into the well of shame. But now I became angry, defensive; deflecting this anger outward rather in. I attacked his denial and demands and met his hostility with my own. We argued and we worked to seek out the roots of our frustrations and resentments. This was not an easy nor pleasent task. Don sought counselling and I dove once more into the self help and psychology books once more, and this time I added spiritual material to my reading list. I was still unsure as to what the vision of the night visitor ment, but I was sure that spirituality was somehow involved. Going to the library was getting me out of the house, even if Don was having to take me. Other than grocery shopping this was the only thing we were really doing togeather. Strangely, Don actually began to read some of the books I was bringing home. We stopped fighting and started communicating. Don was still not supportive of me, but at least he was less hostile. For my part, I let my hostility cool as well. I had learned a hard lesson that I did not want to learn. Don had no intention of taking control of our financial situation nor making a priority of caring for my needs. He never has and I doubt that he ever will. So if I wanted things to change I had to change them myself. I was off to reclaim my life, for me. Not to serve anyone else's needs before I could meet my own. ----