-2- AS I WAS BEFORE MY WORLD BEFORE THE BIG CRASH OF '90 My husband, Don, and I had both graduated with Bachelor's Degrees from the University of Lethbridge shortly before our move out to the Victoria, B.C. area in July of 1985. I had obtained a degree in Anthropology in 1983, but had taken another year of undergraduate studies since I had been unable to secure more than a summer job that year and for Don to complete his degree would require another year for us both on student loans. This added year of study on my part allowed me to take courses towards a possible Bachelor of Social Welfare and fulfilled the requirements for a full major in Psychology along the way. I had done two years of peer counselling as part of my work with the University of Lethbridge Association of Returning and Mature Students, where I had also been the volunteer coordinator, event coordinator and office manager. The job of the summer of '83 had been utilizing my Anthropology and Archaeology studies at the Fort Whoop-Up heritage site in Lethbridge's Indian Battle Park. In the fall of 1984 this experience came in handy and I was able to gain a six month contract position with the Lethbridge office of Alberta Culture, but once that contract was up the office was relocated to another center and I found myself unable to find employment of any kind. On the work front at that moment, Don's Physics degree had looked promising in the research and development boom of the early 1980's. By the spring of 1985, the Alberta economy was at a standstill and provided little hope of employment to either of us of any kind if we remained in Lethbridge. Searching for work in the larger centers of Calgary and Edmonton had been fruitless and that left us looking to either Ontario or British Columbia. We did not have the financial resources to move east, so we moved west. In the Victoria region, government grants and tax credits had caused a growth surge in high tech companies and there were job openings being posted almost daily in local and regional newspapers and in the federal job registry. We had seen job openings being posted in the Lethbridge Herald for positions in Victoria, and when Don had written to query these firms he was given invitations to apply in person when he got into town. By the time we had arrived, the industry had begun it's collapse into the recession as grants and tax credits had dried up. Even though there were still job openings being posted, the trained and newly laid off workers were more than enough to fill any current needs and unexperienced new graduates did not stand a chance of even receiving an interview in most instances. Even without the prospects of well paid employment we still had the benefit of having family in the area, something that would have been painfully absent had we headed east instead of west. My brother, Garry Humphreys, and his family had moved out from Southern Alberta the year before we did, had settled in the community of Langford a few miles outside of Victoria. On the other side of Victoria, in and near the town of Sidney on the tip of the Saanich peninsula, Don's parents and grandparents still resided in the community of Don's youth, the place where Don and I had met, became high school sweethearts, and married. Garry had found us a unit in a fourplex in Colwood, a community beside Langford, which we were able to move into immediately upon our arrival. We has sold our house in Lethbridge, holding a second mortgage that the buyer would subsequently default on along with the first causing us to loose the monies we had invested there. Everything we owned was with us, loaded into a U-haul trailer hitched to a '74 Pontiac Parisian, and loaded into a '74 Mazda RX4 station wagon with two roof racks. It took five days to travel the distance from Lethbridge to Victoria, the overloaded car and trailer requiring frequent stops to let the transmission cool. Don drove the car, I drove the station wagon. Along with our two sons, Ken (aged 10) and Chris (aged 8) we had the little Lady dog and four cats. The trip gave me new insight to the U-Haul slogan of "Adventures In Moving". We did not stay long in the fourplex, as the other units contained drunken party animals who partied and fought day and night. We moved to a rented half duplex two months after our arrival in Colwood, where we stayed until February of 1988. The building was sold and the new owners wanted the tenants out so they could repaint and double the rent. By June of 1987, I had already been through another cycle of remission and relapse. In the fall of 1985 I had been diagnosed as having Fibrositis, aka Fibromyalgia. I was told to exercise, avoid stress and take antidepressants. I wasn't depressed and the pills were costly so I threw out the prescription and tried to get on with my life. Exercise I was getting plenty of, but stress was one thing I could not avoid. Being the mother of two pre-teen boys, Ken and Chris, and being the "weekend mother" to a third, Mike (also known as Rooster) was hectic and stressful enough. Ken was an extremely intelligent lad, part of the schools gifted and talented program. Ken was also a very moody child, and fought seemingly constantly with his younger brother. Chris was also brighter than average but his problems with his attention span were a cause of trouble. He was also a master at what the school board psychologist called "Brinkmanship", and he delighted at annoying his teachers and classmates to distraction while not instigating any major problems other than with the school bullies on the playground and off of school grounds. Mike, Ken's classmate, had problems at home, his parents being divorced with him living with his father, his father's girlfriend and her children. Neither of his parents really wanted him, and Mike was on the edge of self destructing He would spend as much time at my house as he could, hence the title of being my "weekend son". There was also the problem of being perpetually short of money. As for me, my social science background and experience in the Heritage field was useful when it came to making a career out of my studies. Having taken up residence in a community just outside the city of Victoria, a community well known for it's old and historic buildings, I set about establish myself a reputation in the local heritage community by volunteering at the local Goldstream Region Museum and on the City of Colwood 's Heritage Committee. Before long I had been made a director of the Goldstream Region Museum Society, in charge of such things as the archives, displays, and advertising/public relations. I became the Museum's representative on the Regional Heritage Coordinating committee which assisted in the promotion of historical sites and with the production of the joint annual Heritage Fair. Eventually I was even asked to sit on the board of the Hallmark Society, a Victoria based organization of some prestige in the Canadian Heritage Resource Preservation and Management field. Being well respected in your field does not help much if the only paid work available happens to be on scare, short term projects funded by tight pursed government grants. The competition in my line of work was fierce, but my hard work as a volunteer allowed me to build enough respect that I was able to get work on a couple of local projects, for the nearby District of Metchosin (1987) and for the City of Colwood (1988). In these projects I was to make an inventory of local buildings and archaeological sites dating from and before WWII, evaluating these sites, and making recommendations as to the management of any heritage resources identified. I adapted evaluation systems from other agencies in the Heritage Resource Management field to the needs of British Columbia in general, and our region of it in particular, and drew up the forms to collect the data on. I did such a good job that the Province of British Columbia has been using my inventories as the template recommended for all such inventories to be done in the province since 1987. I had a career building in the Heritage Resource Management field, even if there wasn't much paid work available in it. I had also tried to utilize the other parts of my training, in sociology, psychology and peer counselling to gain employment in the social welfare field, but here the competition for jobs was even stronger than in the heritage field where I drew upon my anthropology major and work experience. In all areas I was pitting my BA against Masters and even Doctorates, and it was little consolation to be told that I had come in second choice for a job once again. Don wasn't even as lucky as I was in the area of finding gainful employment. His over ten years of experience in building maintenance and landscaping landed him only make work project jobs of the most menial kinds, such as bush clearing and trail building. Back braking labor at low wages for only a few months at a time. He found that his degree actually worked against him, as he was told repeatedly that he was overqualified for many of the positions he applied for, such as a school janitor or a janitorial supervisor. So, he began to ignore his degree on job applications. What Don and I could not ignore was the money we owed on student loans for these degrees. Try as we might, it usually worked out that only one of us would be working at any given time. It was also usual for us to have just been able to catch up on the backlog of unpaid bills, to keep our utilities connected, replace our children's tattered clothing, and pay for used tires to replace the bald ones on the old car we drove...when the project one of us was working on would end or a lay-off would happen to put us back in the red once more. We struggled to stay off the welfare rolls, but sometimes we had to resort to the demeaning process of applying for assistance, until the UIC came in...or after it had run out. One welfare financial aid worker even went as far as to tell us that we were an embarrassment to the B.C. government with our bouncing on and off the welfare rolls. With our educations we should be working, and if we could not find jobs where we were, we should move. But no funds to move were offered. And I knew that I could not manage to function enough to work in a colder climate. I must admit that I preferred doing the project work to the prospect of a more permanent position. A three to six month contract was about all I could handle before I would get sick again. The Metchosin project was for all of three months, where my project partner and I worked out of a basement office that reeked with the fumes of paint and carpet glue. Metchosin is a rural community, and being that the project meant spending a great deal of time outdoors finding documenting old buildings and archaeological sites there was plenty of fresh air and pollen. My allergies flared and I was constantly taking allergy pills and extra strength tylonol for the headaches and muscle pains. When I sneezed, I ached. Being diagnosed with Fibromyalgia (FM) during a relapse episode in 1985, I felt myself slipping into what I was sure was just another FM flare. So did my doctor..."take these pills, he would tell me, go back to work, and try to get more exercise". When the contact ended I collapsed. It took me six months to recover enough to look for work again. But while I was up and running, I was "Supermom". I liked being a supermom. I felt strong and powerful, and in control of my life and my world. I knew that I'd probably get sick again, sometime, but for the present I was off to do as much as I could. Like the saying goes, I was trying to make up for lost time. I was trying to get as far ahead as I could before I hit that damned wall once again. I probably did myself more harm in the long run than any good I ever achieved in the catch-up game. But, during these times, I felt that I had finally conquered the demon once-and-for-all...and I had the doctors pleased as well. They were not pleased at all when I began to grow sick again. I must have been doing something wrong, or gotten bored and needed more variety. Since I had gotten well before just meant that there was nothing seriously physically "wrong" with me. Obviously, these guys never heard of remission and relapse cycles for any disease, let alone CFIDS/ME. Exactly what had they been taught in medical school? CONCEPTS OF WELLNESS I really have no firm concept of being well, since it has been so very long that I have been caught up in the cycles of illness and remissions. I do not recall what it feels like to be active, productive, creative, independent, and self reliant. The effect of the CFIDS/ME upon my life has not been like a quick downhill ski slope ride. No, it has been more akin to falling down a narrowly terraced hillside. I would slip as I climbed up one terrace wall and tumble down, rolling with such momentum that I would roll right over that lower edged wall and just sail on down to the terrace below that. Sometimes I would be able to stop there, but other times I would just keep on tumbling until I finally stopped with a thump on the next terrace down. Falling itself is not so bad, it is the landings that knock the stuffing out of a body. Once I had stopped moving, I would be able to pick myself up and patch up the damage before continuing to try to climb back up the hillside. But I never fell unscathed. With each tumble, damage was added onto the damage that remained from the previous fall. This left me weaker and less able to manage the climb upward again each time I ventured forth. This progressive downhill journey has been as hard on my psychologically as it has been physically. It left me feeling that I was one big failure along the path of life. BLAMING THE PATIENT FOR HER ILLS I not only felt like a failure, but I feared that I was a hypochondriac as well. No amount of soul searching or self-help psychology books could break the gray shell that I found myself in. I spent most of my time feeling guilty for what I now could not do. I was so angry and frustrated at my body's weakness that I felt I was going mad. The medical community turned out to be more of a hindrance than a help. Since no one could figure out what ailed me, the message that was being continually sent to me by the medical establishment was that somehow I must be doing this to myself. I was deficient in will, lacking in character, overreacting to little things. I was making a big deal over a common little virus. Or, it was just that I was dissatisfied with my life. I was supposed to just learn to live with my life and my body, however flawed and fragile it might be,and if in fact I was that fragile, to get on with my life. Ouch! My self esteem didn't need that sort of encouragement. IT'S ONLY STRESS/ A VIRUS QUOTES FROM PEOPLE "IN THE KNOW" : [the names have been omitted to protect the guilty parade of professionals that I have seen over the years...and some of the advise given below I have received from various doctors, counselors, social workers, and friends on more than one occasion] "It is just a simple virus. I know you are feeling miserable but you will just have to wait it out. There is nothing I can do for you" (Doctor's advice: 1973, 1976, 1978, 1982, 1985, 1988). "You simply have an oversensitive immune system. We don't want to waste the allergist's time testing you since it is obvious that you will react to everything and it will just make you feel more miserable. Just continue to take your antihistamines. Observe what you are reacting to and avoid it" (Doctor's advice: 1977, 1987, 1990). "It is obvious that you are suffering from... psoriasis spastic colon allergies tipped uterus stress migraines hypoglycemia flat feet fibrositis temporomandibular joint disorder... which will cause you to feel poorly as a result. The good news is that it is not life threatening. The bad news is that we cannot cure it and that you will have to learn to cope with it and get on with your life (and stop bothering the doctors)." (The advise from General Practitioner's and Specialist doctors I have seen from 1972 to 1990) "With all the stress in your life, anyone would get sick. What you need is....more time for yourself more time with your husband to divorce your husband to take a break from your kids to spend more time with your kids to have another baby to have a hysterectomy to end all your problems to get more rest to get more exercise to get shoe inserts to loose weight to gain weight to try harder to take a tranquilizer to take some antihistamines to improve your diet to avoid all sugars and starches to avoid red meat to take this handful of pills to stop taking any pills to check yourself into a mental hospital for six months to take a vacation to get a job to quit the job to go to school to quit school to learn to control yourself better to learn to let it all out to seek counselling to get up and do something to stop doing so much." (Compiled advise from Doctors, Counselors and Friends between 1972 and 1990) Is this crazy-making talk or what? It was enough to put more than a few spins into my already confused head. What could I do about how I was feeling when I did not know why I was feeling as lousy as I did. No matter what I tried, did or did not do, the spell would always run its course and I would get better. But I would never get as 'better' as I was before or stay better for as long as I did before. DESCRIBING THE PROCESS It is one thing to describe the illness process in analogies and another to illustrate it from a point of personal experience. Dealing with the specifics is the painful part; the hardest part. My diaries, poetry, art work, and writings all depict different aspects of this process. To look back at the painful periods is really not the hardest part. The worst part is to look back upon the good times, knowing that they will never be repeated. Grief is hard to avoid when I am reminded of what I could do, what I did do, but what I can now do no more. "I" I hope, I dream I sparkle and glow I reach out my hand I seek for to grow. I talk to the trees I stand all alone I bathe in the sunshine I call this place home. I trust once a stranger I trust thrice a friend I dance in the moonlight I give once again. I give 'til I'm tired I help 'til I'm sore I work 'til I'm weary I can give on no more. SPIRITUAL ASPECTS AND RELIGIOUS BELIEFS I find it more difficult to reveal my inner self with regard to my personal, spiritual beliefs than to expose the depths of my pain during my journey of despair. One aspect is intricately entwined with the other and so must be addressed as it is part of the whole. Spirituality has been a large component in my staying alive. It has been the guiding path of my journey out of that Valley of Death called despair. It has been a long and hard journey. I have had to struggle even more in my search for spiritual knowledge than I have struggled in my search for knowledge that will bring wellness to my physical self, for I have found that it is only through finding one that any semblance of the other may be gained. OF NO FIXED RELIGION I do not claim to be a follower of any one standard religious belief system, and this much is easily seen from entries in my diaries. I was raised Christian; taught Catholicism in the elementary school I attended although I had been baptized in the Anglican Church and would go onto be confirmed and married there. I spent 10 years of my childhood and early teens in a predominantly Mormon town in Southern Alberta, Canada, and had the teachings of that religion pounded into my head at the end of many the fist of the other children of the town. My mother's Lutheran upbringing was also in play, along with her mother's grandmother's Jewish beliefs. My mother's mother was also a midwife, last of a line of mothers-daughters who were midwife healers from the Black Forest region of Germany. I had many religious "affiliations" thrust upon me to choose from..and as a child being beaten by other children because I was the wrong religion, I came to know the ugliness of religious persecution on an intimate basis. In my early teens, I abandoned my claim to being a Christian on that very basis. It's not that I do not believe in Christ.. I just don't believe in what some Christians have done with his teachings. I prefer simply to be called a pagan...of no fixed religion. A BELIEF CORE It is easier for me to explain what I do believe in, in a religious sense, than to try and identify the process and background of how I came to this way of believing. I believe in God...as an asexual being that is the very life force of the universe. By asexual, I mean not non-sexual but all sexual. God the Father and Mother, the creator of all that was, is and will be. I will refer to God or Goddess, Holy One, Holy Father, Holy Mother...depending on the aspects of my need at the time. I believe that God is everywhere, in everything... in that the life force energy of the universe makes up all the atoms in creation, and therefore that all life and should be treated with respect. I believe that God is so vast and complex that as a mere human I cannot comprehend this vastness. I am in awe of its grandeur. I can only grasp but aspects of God... glimpses of God. These glimpses I think are what other religions call gods, goddesses, and even angels and demons. These I refer to as the "Powers that Be". I call out to them to ask for help and understanding in the realm of the aspects of God I feel them to represent. From the healer, I ask to understand healing; from the wise one, I ask for knowledge. I use this "system" to be sure that I am clear about exactly what it is I ask for and how I ask it. Unless I am in too much pain to think clearly, that is. When I am in such pain of mind and body, or when the illness of the body has filled my brain with dull gray fog I will cry out to the Holy Mother for aid. Sometimes I refer to Loki, the Norse god of mischief. I do not believe that Loki is a real 'being'...it is the idea of Loki that I refer to. Like "Murphy's Law", Loki is the phenomena of things going awry when least expected or wanted. I blame a string of bad things happening on Loki.. instead of beating myself up for things that are beyond my control. A SEEKER I study all religions and spiritual paths, seeking out the common threads among them. Under the specific trappings of each culture of their birth, I have found that core truths are found in them all. These basic truths keep coming back to the Ten Commandments... honor life, honor the creative force of all things, honor each other, and be true to yourselves. Basically, don't take things that don't belong to you and treat everyone/everything as you want to be treated. I try to live my life under these rules. I do not always succeed as I am merely human, but I do try. I do not think that I have the answer to all things mystical or magical. I have but a small piece of the puzzle which I work with in my search for enlightenment and serenity. I know that I will spend the rest of my life searching, seeking, and learning. Maybe this is what living is all about. I use of my knowledge I give of my soul I use what I'm given I fill my child's bowl P. Griffiths, May 28th, 1987.