-20- CATWALK ON THE VALLEY'S EDGE WHY DO I KEEP ON GOING ON? I have not won the war that I have been waging with CFIDS/ME these many long, hard years. I have won some battles and the illness has won some battles. Many battles are still raging and there are, no doubt, many more battles to come. "Why do I keep on going on?", is a question that always drags down upon me on the days when the disease is winning. Any answers I can think of seem very thin in substance and reality on those days when standing up is alone an experience in agony. Life seems futile and the challenges of daily living are overwhelming. The future seems hopeless once more, all the spunk and moxy of recent good days having evaporated like morning mists in the strong rays of the sun. "Why do I keep on going on?", I will ask myself as I lay in bed unable to sleep. Like waves of an incoming tide upon a beach, so are the waves of wakefulness upon my sleep. Rest to restore aching muscles cannot come, and so the muscles protest painfully in degrees starting at the throbbing ache of a bad bruise increasing to the scream rending torture of sudden bone wrenching spasms. Even as I lay as still as I can, barely breathing, the room will spin about my head in nauseating waves of motion. "Why do I keep on going on? To face more of this for the rest of my life?" "Why do I keep on going on?" What purpose is in all this suffering and despair? When I am reminded of how much I have lost, this question is painful indeed. It is exceptionally painful when I am asked when it is that I can come back to work in the Heritage Research Management field. I am missed, I am told by former colleagues. My old life awaits for me to claim it. It is a golden ring held out from golden days long gone. This wrenches at my heart and soul. The Goldstream Region Museum is still standing but seldom open, awaiting my return to breath life into it again. A seat is still open for me on the Heritage Committee of the City of Colwood. If I had the energy to do so, it is still there waiting for me. IF I ONLY HAD THE ENERGY! I cannot even say a wistful goodbye to my life that was when it keeps coming back to haunt me like this. Why do I keep going on against the pain of the body and the anguish of my soul? I do not know. GOOD DAYS, BAD WEEKS. On the good days, I am able to leave the dark purple gray funk that haunts me and pulls to me from the depths of the Valley of Shadows. I focus my attentions solely on the "NOW", doing my best to be blind to the pains of yesterday and the hopelessness of tomorrow. I can function only in the "NOW", and by staying in the "NOW". For "NOW", I am feeling OK and nothing hurts so badly as to demand my total attention; for "NOW", I am comfortable. For "NOW" there are no utility company cut off notices to deal with, and there is enough food in the house. For "NOW" I have no crisis to deal with. For "NOW" I have a nice day to ride about on Betsy, my scooter, and enjoy the sunshine and the fresh air. For "NOW" the cognitive fog has lifted enough for me to read a novel or sit at my computer and write something that makes some sort of sense. On a good day the "NOW"s string together in some semblance of order to fill the time between getting up and going back to bed for the night. If I am very lucky, the "NOW"s will continue throughout the night and I will sleep with deep restful patches amid the commoner light and fragile ones. While the good days are lived in the now, the bad days are lived in the forever. The forever is a place where living in the now is not possible. The past is woven into the pain and the pain is projected into the future. I have slipped out of the "NOW" and onto the vast and overwhelming plane of total existence. When my cognitive faculties close in to the point where short term memory is almost entirely disabled, I can live in the past, present, and future all at the same time ; tomorrow becomes yesterday and six weeks ago is lived again today. I will not recognize my own room when I wake up in it. If asked the year I will answer "1985" and be sure of it. I will recall that I have a chiropractors appointment for thursday the 22nd and will prepare to go for it believing it is thursday the 22nd that very day, when it is actually three weeks away. The forever is also a place where time stands still. When the bad day extends it's unwelcome stay into several days, weeks or even months, entire blocks of time become lost to me. For this reason I have made a ritual of writing down notes about my day in a small five year diary I keep beside my bed. Some days all I can write is "Housebound. Tired. Another bad day." I have lost hours, and entire days, and weeks and even months to the now-less forever. Some days I will be aware enough to make an entry in my larger diary, a place where I can still cry out my anguish and my joys. Upon looking back into these books I have seen the same words and feelings written over and over again. I do not realize that I have written the same passage before while I repeat word an phrase for the sixth or eighth times. I cry out in despair and hopelessness wanting more than anything for release from this nightmare I am trapped in. Even the dark oblivion of annihilation would be a welcome miracle in my tortured mind. In those timeless days when the illness is winning, those are days when I may return to my Valley of Shadows once more. I try not to stay there very long. THE CATWALK My existence today, in December of 1996, is one that is lived daily on a tenuous ledge between living and dying. It is a limbo of sorts; thanks to the Damn Disease I am never fully alive and yet I cannot bring myself to take that final action to secure freedom from the shackles of pain and hopelessness. This ledge runs along the Valley walls, climbing so high that I can sometimes see the sunlight and hear the birds calling above. This ledge also winds perilously towards the Valley's floor with it's deep dark pit of despair. It is a narrow ledge, sometimes disappearing into the smallest of toe and finger holds, with a sheer drop to the bottom awaiting any slip. Here is where I walk, where I live. Where I exist. I have been walking this ledge for two years now, trying to find the way out of the valley to the sunlit plateau above my head. Somedays I can even bask in a sunbeam as it passes through the ledge space I am perched upon. Other days the icy cold gales of the Valley floor whip up in an attempt to dislodge me from the rockface and hurl me back into the abyss. I continue to struggle to hang onto that ledge and inch my way upward towards the sunlight. Why I continue to do so, I truly do not know. An answer that is adequate one day is not adequate the next. But when I am in the "Now", the childlike joy of just being is enough. On bad days, I tell myself that I must hang in there and go on because I have a responsibility to others to do so. They depend on me just to be there for them, that I am valued and needed and able to do what is needed of me. When I am in the "Forever", the struggle ceases to be possible even if it is the struggle to be finally free of it all. WRITING ON LINE December 1996 Posted to WECAN-L Subject: Melancholiac Ramblings. It is hard for me to keep my spirits up these days. A month ago I was caught by the flu bug that had been making it's way through my family and community. This bug is hanging on to a lot of folk, and it won't let me go either. If other folks around me weren't also still suffering I'd just blame it all on the DD. As each day goes by, I am slowly getting weaker and weaker. I am hardly able to get out of bed now, only to just sit. I can at least still sit at my computer and type in my slow and laboring fashion, my hands icy cold and stiff. My mind hasn't closed in yet, as it has in the past, but cognitive difficulties are troublesome. I have information/sensory overload as constant problems. My vision becomes fuzzy and I can't see straight, luckily for me I have four pairs of glasses to chose from in differing strengths and prescriptions. I feel like I am in a pit where the gravity has been turned up to 3G's. The air is thick and hard to breathe. There is so much that I wanted to get done, especially with Christmas less than two weeks away. It was nowhere near the Christmas preparations I used to do, when I was stronger. My family is very supportive, not expecting me to do it all anymore. But I miss being able to do even some of it. I had hoped to be able to do some of it, at least a few cookie jars of my famous homemade cookies. Last year I knitted scarfs. This year I cannot even do this. Money being tight is always a real bummer. Having to rely upon a foodbank Christmas hamper for Christmas dinner is no fun. Christmas not withstanding the bills still need to be paid. The rent must be paid. The fuel oil and electricity must be paid. The phone bill must be paid. It is hard enough to meet the bills and buy food besides most months, and then comes Christmas, with all of it's added stressors to the pocketbook. Life is not lived in a vacuum. Even if my family does not expect me to get them gifts, I expect me to give them at least token gifts. My gifts of scarfs cannot be this year. My gifts of cookies may not be this year. This drags pain deep down into my soul, eating away at the very fiber of my being. My family does not put guilt or shame upon me, but these creep up from the dark corners of my mind where they silently reside between Christmas times. The death of my brother in July of this year haunts me badly. This will be the first Christmas in my memory without him. His daughters have disowned me because I made a public issue of his being unable to afford his heart medication and unable to get any help in affording it; for falling through the cracks in the social safety net. My efforts embarrassed their mother, who was not living with Garry at the time of his death; the two of them engaged in an ugly divorce with him raising two of the three teenage daughters on his unemployment insurance benefits while she had the middle daughter on her income as a nurses aide in a local hospital. I have not only lost my brother, but his daughter's as well... the last members of my birth family to be alive. A big black hole sits here, I cannot stop the automatic thoughts of what to get Garry and his girls. I see something and think of them and how they would like it for Christmas, only to then stop and remember. It hurts. My heart feels heavy and labored, filled with tears of grief unable to be released. I don't know how I will get through the next few weeks. I will be very glad when the New Year hits and the "Festive" season ends. I have to keep going, too many people depend on me to keep going. When I help other's I can ignore my own pain for a time. I feel less helpless and hopeless when I can comfort another. I know I am not useless, not just yet anyway. I am having a melancholy day. I just want to curl up in a ball and cry, and give up. This is today. What of tomorrow? I don't want to think about tomorrow. I may not be able to get out of bed tomorrow. I may not be able to see at all tomorrow. The fridge and cupboards will still be just as empty tomorrow. The car will still need repairs tomorrow. The cookies will still be unbaked tomorrow. Tomorrow will come, and I will have to deal with it... but I will deal with it tomorrow for I cannot bear to think of it today. Thank you for giving me a place to share my melancholic ramblings with people I know do understand the whys and hows of my feelings. I can share with you what I cannot bring myself to share with anyone else. NO HAPPY ENDINGS I cannot put a happy ending to this story of mine. There has been mo miracles where by I have been blessed with wellness once more, nor have I won a lottery jackpot to enable me to live without having to worry if I can meet next months rent, pay the electric bill and eat too. I have lost faith in these dreams. But I still dream of dancing in the moonlight with my e-mail friends to rejoice in our joint wellness. I still dream of owning outright a nice, safe, warm house with a yard that is a rich garden of trees and flowers and herbs where cats and butterflies play amid the plants and sunbeams. I enjoy these dreams but do not believe in my heart that they will ever be anything more than just dreams. I also cannot put an ending to this story of the tragic hero who struggled bravely but who's life was forfeit in the end. I see myself as no hero, as no one special at all. I am but one of millions of people who have lost their productivity and joy from their lives as a consequence to being cursed with Chronic Fatigue Immune Dysfunction Syndrome/ Myalgic Encephalomyelitis. If I am a hero, then so is everyone who continues to struggle and suffer with this terrible illness. Our stories are not over yet, cannot be over until a cure or at the very least a control is found for our illness. Our numbers will continue to grow until the cause or causes are found and the cure or cures are not only found but made available to everyone in need regardless of their medical coverage or bank balances. The stories cannot be over as long as people are being denied their dignity and most basic of human rights while being branded fakers and liars by those who we trust to help and protect us. Maybe there is the reason that I continue to go on after all. This suffering must stop, and I cannot stop working towards this end until it does. -end-