-7- THE POWER OF KNOWLEDGE "Know one's enemy" "A little knowledge is a dangerous thing." I sought to know my enemy now that I knew it's name and alias. If I could find out what weaknesses it held, I would know where to attack it. I could know how to disable it. I could know how to vanquish it from my body and my life. I read all I could find about this enemy. This strategy had served me well in the past. I had learned about food allergies, hypoglycemia, nutrition and childhood hyperactivity for the benefit of myself and my young son Chris. I read self help books on every topic I came across. My curiosity was insatiable where my families' well being was concerned. The enemy was one topic I had not delved into before, one I had seen no need to access. Now it was of great importance to my life that I did. So, as is my fashion, I researched the enemy as fully as I could. I copied files from the local support group. I ordered books from my local public library branch. I borrowed books from other people. I wrote letters seeking information. I studied and I compiled data. I cross referenced with related disorders and syndromes of similar symptomology. I wasn't desperate. I was in researcher mode. The more I researched, the more I discovered just what a long history the enemy had documented and just how little was still known about it. In the end, I found only conflicting theories and no identifiable cause, no relyable treatment protocol, and no cure. If identified soon enough, and if treated by enough rest, some people slowly gained back their health. Big ifs, and besides I had been ill for nearly two decades. I found rampant discrimination against people maimed by the enemy. I saw a prognosis of pain, disability, and poverty... to be punctuated by periods of remission... and relieved for many by only the cold kiss of death. Now I began to feel desperate. ---- In Our Group I feel welcomed warm acceptance flowing smiles unforced undoubting sharing in my fears holding tight unto my hopes I feel validated sharing little threads of hope trading ideas sharing skills ideas flowing to and fro building on our joint successes I feel hopeful strength and energy flowing round coping becomes easier fear evaporates feeling stronger of spirit each time we visit Thank you my friends for being there you help my spirit to fly my heart to hope and others to understand P. Griffiths, 1991 [published in the M.E. Victoria newsletter, March, 1991] ----- THE ANGER AND GRIEF OF PROGNOSIS I had such great hopes when I first found a name to fit the pattern of ills I faced. I had hoped and prayed that just maybe there was a way out of my difficulties. Just maybe, if I could find out enough I would be able to vanquish my demon forever. I was hiding in a full blown case of Denial. Anger and Denial, what a combination. They rear up and attack every time I fall upon my face. I deny to myself that I am on shaky ground and I deny to myself that I am in danger of falling. Then I get angry when I fall. Angry at my body for failing me again. Angry at myself for being so stupid that I did not take heed of the warning signs. Angry at the world for overwhelming me again and angry with myself for being so overwhelmed. Anger and Denial. Both part of the Grief Cycle. Grief is normal, it is part of the healing process of the psyche when it has been ravaged by loss. According to Elizabeth Kubler-Ross it is normal for a person cycles through the stages of denial and isolation, anger, bargaining, depression, and acceptance. A person can experience these stages in any order and can find find themselves in any combination of stages at any one time. For myself, the grief has at times been unbearable. The depression has given way to anguish and despair many times when when the demands of life have overwhelmed both my body and soul. There have been nights so black that I prayed not to wake up the next morning, so deep has been my despair. Depression and despair are always greatest when the body is so ill that I am unable to move far from either armchair or bed. I become trapped by my dysfunctional body, again. My mind clouds over and I become agonizingly aware of the cognitive functions that now elude me. I am trapped. I cannot move, I cannot care for myself. I cannot care for my family. I cannot communicate. Words slur and jumble when spoken or heard. Written words jitter and scramble upon the page. Vocabulary is reduced. I am trapped within the cage of my illness. Again. I am terribly afraid that this time more functions will be lost permanently. I am terrified of the thought that possibly this time the cage will be permanent. I am tormented by bleak and painful memories that feed upon and then feed into the flow of the fear itself. Fear overwhelms me, broken only by anguish and despair. The cage shrinks. I cannot even ask for help even if I can conceptualize what it is I need. At times like this the grief cycle finds my family as well. Their own grief at my condition lets their own denial obscure their view. They refuse to see me as I am now. It is much too painful for them to bear. They balk at the reversal of roles, resenting that their care-giver now requires care. They wait for a formal request for whatever needs doing and then they may or may not comply with the request. Their denial deepens my black pit of despair. I am not only useless and helpless, I am abandoned as well. Life goes on about me with no regard to me. I am invisable. I would much rather just be dead than to exist like this. But now I am unable to even accomplish that. ----- DIARY. Friday, [11:26 am] The fatigue continues to grow. I am exhausted. I cannot say how I slept, as frequent were the runs to the toilet to pee. Even then, my ankles are still swollen. The psoriasis on my arms is angry [red] and sore. May allergies are annoying. The miseries are one me once more. I shall give in to the call for sleep and spend the day resting. [10:04pm] My day has of necessity been dull - dull as my headache, dull as the pain in my bones. I itch - psoriasis peels. My skin feels grainy, as if covered in sand; annoying, gritty. Nerves jangle, and muscles twitch and jerk. A spasm, a twist - pain- weakness. Dizzyness, collapse. Unable to move, unable not to move. Lonely. I want to be held and cuddled. I want too much. People around me ignore me, avoid me, wish me to leave them alone. Too weak to make supper I am resented. I resent the resentment. I resent the abandonment. I resent the thanklessness of my life. I am very unhappy. It has not been a good day for me. ----- DIARY. Saturday [10:38 pm] The sounds of traffic drift into the room, the open window admitting the noises with a slight hint of cool air. Motors growl, tires moan and squeel. the neighbour's shop yields up sounds of work- a bang, a clunk, the rapid "brraappp" of an air wrench. In the other room the fish tank bubbles softly and warmly. Voices from below betray the TV set. The night is not quiet - it is hectic and full. Someone sharpens a blade - the sound of stone on steel is distinctive. The night is hot. Too hot to be bearable with the doors and windows closed to block out the sounds from without. The world is a dull roar, not loud or crass enough to cause distress or fear. Just enough to fill a warm summers night with life signs. The silence will come soon enough. I need but have patience for it. The motor sounds echo far in the still air, sounds from the speedway race cars. The roar reminds me of the howl of the wind that chills my soul with fear. I am uneasy with this sound. I wish out to cry out for quiet - but cannot. I feel the fool for thinking such thoughts. I have no right to demand quiet from a busy day before it's time. Quiet time will come. I have pain, the ever present distraction to rest. My body longs for restful sleep, easy sleep, but it is denied me once more. The stress I feel is crushing, smothering, oppressive as heat. Pain of body melds with the anguish of the soul in a dance of bitter torment. But I go on. Poetry and mystery are hiding deep with in my soul. The quest turns towards a hidden question. What is it that I am to seek? I search blindly for what I know not. Snatches of meaning, like snatches of sound - are all parts of an unseen tapestry yet unidentifiable in and of themselves. I am left with a feeling of hopelessness. Why bother if all is naught in the end? I see no goal to suffer for, no trophy to attain. There is no answer - there is not even the question. Am I depressed? I would not be surprised to be told I am depressed. I feel sick inside depressed. Guilt ridden depressed. Low and afraid and sick with it all. Self distrusting and helpless to stop it all. The all overwhelms me - the all complicates and throws a never ending series of crisis upon me. Have I reason to feel this stress? How can I not feel it? I close the [bedroom] door - and the sounds of the family fade. To close out the outer world would bring suffocating heat. Time grinds by as I sit. The closed door dampens the breeze and the heat builds. It builds like the stresses build. One at a time - one added to the others - another on top of it all demanding to be delt with now. All demands. No concessions. Hoops to jump through and loop holes to fall through. Uneasiness abounds. Stress! Argh! ----- DIARY. Sunday [1:20 pm] Depression haunts me today. I feel sad and weak, unable to do much of anything at all. I have the house to myself and the cats. The guys are off working. Part of me truly wants to to get busy and clean up, bake, do laundry. But trying is even beyond most of me. Weakness prevails, and in its' wake is guilt and sorrow - and shame. Of course I feel depressed. Each time I try to do what I once did I fail. My body fails me with weakness and pain. My mind fails me as I lose focus and memory. Circumstances bring crisis after crisis which take all my energies and abilities to deal with, leaving me drained for days to come. Motivation leaves, anguish comes. I feel useless, helpless, trapped. Meditation becomes impossible. Housework becomes impossible. Museum work is impossible. [I was an active member of the Goldstream Region Museum Society board of directors] I live in a pressure cooker of stress and it sucks away my life - yet I cannot escape it. I want to escape it. I want and need security and comfort. I need comfort and financial security. Why? Because I am ill with a horrid illness that robs me of strength of both mind and body, and feeds upon stress. ----- DIARY. Thursday Life is confusing and disheartening at times. I sit here not knowing that tomorrow will bring, or even today for that matter. I feel quite happy at one moment and quite frustrated the next. Money is a real problem. Lack of money is a sore point that festers all the other problems like flies around an open wound. So little manages to stress me out these days. I pay dearly for anger or excitement or worry. The stresses drag me down and stomp on me. I feel weak and shakey, confused and unsure. I want to be with people, yet I want to be alone. I want to be free of responsabilitiies and worries and lack-ofs for awhile and maybe I could get my strength up. I try to ignore my weakness and pain but by body refuses to obey my will. I feel frustration at times, when I have the energy to feel any emotions at all. My body gets weaker and my symptoms increase. I am afraid that I will never get stronger now. I want to hope, but I have little left but acceptance of a cruel fate. I must face my greatest fears head on in this life cycle. I dread what must come next, if all is to come into play. Aloneness, helplessness, suffering, uncared for. Abandonment on top of helplessness. Oh, how I fear that fate. ----- DIARY. Saturday [11:33 pm] I feel quite sad inside, and quite down. I felt ill all day. I don't know what it is with me - my mid life crisis maybe. I just want to feel free, unshackled, untied, no longer bound by responsabilities to others, no longer restrained by poverty and illness. I want to be free to soar, to roam, to laugh, to play. I need to experience that freedom that I don't recall ever having before. I want to come and go as I please and go wherever I want to go. I want to be able to eat whatever I want, whenever I want it. I remember no good old days to long for, no blush of youth. There was no magic summer for me. I want that, I yearn for that, deep within my heart. ----- Diary. Monday [1:08 am] I sit here, brain blank, staring at the page. If I stare long enough will words appear? I really dislike dropping. It's very inconvienient to have ones' body collapse with little to no notice. Just a steady drop in energy until you drop on the floor. Just when I think I am getting stronger -POW!- down I go. My head pounds, legs fail, hands go numb. My muscles twitch, breathing becomes difficult and the seizure things return. Ouch! I am not happy at all about them. Depression haunts me. Worry plagues me. Crisis keeps coming to taunt me with chaos. I seek order to cope with my illness. Chaos instead keeps wearing me down. Chaos batters me and tests my resilience and resolve. It is a never ending struggle to keep on goings when I am so tired and sore that I just want to give up. I am so tired of pulling unseen order form chaos. It leaves me so tired and ill. I feel so drained, so empty as a result of my efforts. But not to act is a non-option. Every fiber I have that is survival oriented screams for me to act. To allow failure or destruction to occur if I can stop it or turn it tears at my very soul. the anguish that is caused is great and terrible. I can only let things go so far. I can give in when I can see that I cannot change things of that I am not the only agent of change available. But when I see only my abilities and knowledge as the key I must act- and pay for it later. ----- GRIEF I grieve the self lost the person I once was the person I once knew her I trusted I knew what she could do The past self is gone I miss her so Emptyness remains an unknowing I don't know what I can do. P. Griffiths, 1992