-18- A JOURNEY IN PROGRESS There is an old saying about the best laid plans of mice and men. In 1995, the best laid plans of Phyllis had no more luck than those of the proverbial mice to gain fruition. What can one do in the way of being gainfully employed when one is limited by the simple fact that there is only a few hours a day of available energy to do anything in? This is a big problem when a person suffers from a strength robbing illness such as CFIDS/ME. Getting up, dressed, and out the door requires time and energy. Commuting to a work site requires time and energy. The commute back requires time and energy. If a person has six hours of time/energy available to them in an average day, and the getting up and to work and back again eat up two of these hours then only four hours of functional work time are available. Now if the time once home for the chores of daily living such as eating, shopping, food preparation, cleaning and such are taken into the equation a further hour or more is taken from the functional wage earning time. We have now a senario of getting up, preparing for work, going to work, working three hours, leaving work, returning home, seeing to the chores of basic living, and collapsing until the next morning when the cycle repeats itself. This would assume the person involved had six hours of functional brain and body time available every day. When a person has CFIDS/ME having six continuous hours of brain/body function for any given day is a day of rejoicement. To be counted upon as a day to day reality would be folley. In the spring of 1995, I had not yet learned not to count on for tommorow a repete of the energy surge I felt for today. Not having to rely upon my legs for mobility outside of my home allowed me to get out and about with a new level of energy. This ment that my mind was much clearer for longer periods of time as well. I soon found that I could manage to putter about the local community for up to six hours at a streach without collapsing from exhaustion. I became hopeful of the prospect of retraining for some sort of work to do out of my home. I had tried the crafts field before, making stuffed toys to sell at craft fairs and I knew that this was a fast way to go broke as the cost of materials was usually more than what people were willing to pay for the finished product. Not only that, I did not have the mobility required to go to the craft fairs and stores to market my wares. Most of the work at home jobs I looked into were nothing more than scams, and the rest required more energy, contacts and mobility than I now had. My options were limited to what I could do while sitting down at home, when my energy levels would allow. I had begun writing again. I wrote an article on living with CFIDS/ME that was published in the local newspaper, The Goldstream News Gazette. I was also working on the first drafts of this book. My equipment was less than state of the art, an AtariST with a 9pin printer. I could still write, but I knew that if I wanted to make a living of it from my home I needed more skills than I had, and better equipment as well. Possibly I could do technical writing, or something along that line. In the modern computer slaved era that we are now in, basic knowledge of these machines and their programs is a must for most sedintary jobs. Written copy is no longer limited to that which is found on paper, but is transmitted over the telephone lines via fax and modem and stored upon electroniclly encoded mediums such as hard drives, floppy discs and CD ROMS. My computer equipment was not industry standard, and neither were my skills at using the programs and equipment needed I would need to be using. Researching information required I be able to either access computer data bases from my home or by going to places where I could access this material. The mobility/eneregy/time constraints made using local library branchs a tedious effort, let alone allowed for me to make intensive library searchs as a common occurance. I needed the equipment to utilize the programs and navigate the internet in search of research resources and employment, and I needed the training to use these systems to my best possible advantage. Or so I thought anyways. I was not about to let a little thing like having unsuitable equipment and inadequate training stop me from trying to establish some sort of business from my home. If I could not do technical writing I had the possibility of furthering my training in psychology to become a counsellor and work from my home in that field. Either way I needed more training than I had. So I set out to find out how to go by getting it. The first place I approached was the Ministry of Social Services. Surely if they could get me retrained and off their files they would. I was wrong. I could not even get any information on who I should be talking to. There was no money for courses or equipment, but I was encouraged by the office employment counsellor to find other sources of funding, which of course would be deducted from my monthly stipend I received from the Ministry. It was also suggested I apply for a student loan which would cut me off their rolls entirelly. Since I had bankrupted out on one student loan already, back in 1989, I doubted I'd get anotherone. Even if I did gain one I could not manage the full time courseload I would need to for it. I wrote to the federal government, to my Member of Parliment to ask if there were any federal programs that I might qualify for. My MP could not help me, but advised me to contact the Department of the Secretary of State which handles matters relating to disabled person's in Canada. So I wrote off another letter and I received a copy of "Directory of Services: Disabled Persons. 1987". Some of the departments and programs listed no longer even existed, but it was up to me to find out if these were among the ones that would possibly be of use to me. I was feeling frustrated. It was obvious that it would not be an easy task for me to find the answers that I was looking for. More letters and more waiting for replies. Meanwhile spring had turned to summer. I discovered that there was a branch of a branch of government that did sponsor the training of handicapped individuals. Again I had to qualify and again I had forms and reports to have filled out by my doctor and sent off for evaluation. The forms were sent for, completed, sent off, and I waited. September rolled around and I received an appointment with a counsellor, my application for assistance had been accepted. By now my daily energy levels were slipping. I had four hours of continious energy available to me several days a week, not six. Still I was hopeful. Possibly there was something they could help me with. The meeting was a real let down for me. The idea of further psychology training towards certification wwas denied as impractical. I could gain funding for computer and technical writing training, but not for any equipment that I may need to market my skills. Also, I would have to search out the courses and submit a possible program myself and submit it for approval. It was now fall, and I would have to wait for the next spring's classes before any training was possible. While the course fees and materials would be paid for, the training allowance for transportation, clothing and all else would make my income that of being on welfare. I was much less hopeful, but I went home with a stack of pamphlets and forms. I went home and cried. I had searched for all my options, and found that on the strenght levels that I had that I had no options. I was not strong enough to take advantage of the available programs. As the daylight dwindled into winter gloom, so to did my available energy levels fade into grayness once more. Two hours at a streach was all I could manage inside of my home or out, on good days. Then I would have to rest for several hours before doing any more. Even with my scooter I was becoming housebound once more. I had not the energy to navigate it more than a block from my home before bone chilling fatigue began to set in and I would have to fight to keep conscious in order to make my way home before collapsing. INTRODUCTION TO THE INTERNET In the fall of 1995, my son Ken had revealed to the family that he had come to the decision that he was actually a woman trapped in the body of a young man. Ken began upon process of changing his body to match his true, inner self, the process of sexual reassignment from male to female. Ken was becoming Melody, and wished to be called by this name. Melody also would return home to live. Although this change was difficult for Don and I to truly comprehend, we embraced our child with the same unconditional love as we always had. Melody had been interested in computers from an early age, and had been using them since grade two. She could make almost any system sit up and beg. She had been encouraging me in my efforts to gain upgrading of my computer and writing skills, and was saddened that I had been stymied at every turn. Through her own interests and skills she had been active in exploring the internet, and internet newsgroups. Newsgroups are places where people of like interests carry on converations via electronic mail (e-mail) that is sent to a central address known as a listserver, which then forwards the posts to all the members of that newsgroup. Some newsgroups are open for public reading on things called newsreaders and usenet groups. Melody had been active on a transexual newsgroup and wanted me to join one for support for myself in understanding and supporting her. She also suggested I become involved in a group or two of my own interest as well. In October of 1995 my internet type of experience to date had been limited to a short period of time on a single bullitin board set up on a second line out of a basement bedroom in our home. The owner was Ken/Melody of course. I was frightened by the idea of the internet given my levels of computer knowledge and skills. Melody gave me a modem, hooked it up for me, dialed up the local freenet and logged me in to apply for membership. I was not at all sure that I wanted to do this, but Melody was right there to help me out and teach me as I went along. I was not going to get away with not doing this. I may have been afraid that I could not manage to learn to "go online", but Melody had enough confidence in me for both of us. ON-LINE The local freenet is part of the Telnet system, one of the earliest parts of what is today's internet network. The Victoria Freenet is a text based system, with limited access to web pages but the ability for e-mail, bullitin boards, and database searches that are truely massive. The Victoria site is linked to other Telnet sites across the world allowing for truly global access. Unfortunatly, the freenet was not fully compatable with the computer I was using to access it. This limited my options for poking around in things to learn my way around. Still I could manage basic e-mail and Melody helped me to first subscribe to a Transexual newsgroup. Once I became comfortable with accessing the freenet and my e-mail, I joined the newsgroup known as CFS-L. This experience was to be another turning point in my life.