-17- A LIFE TO RECONSTRUCT RECLAIMING MY LIFE Reclaiming my life is not an easy task. First, I have to discover just what the new bounderies of my abilities are, and what I am able to do within them. I know that there are a great many things that I can no longer do. Some of these things I really do not mind forgoing. I never did enjoy housecleaning, even when I was paid to do it. Being run ragged with the chaotic madness of being a supermom is forever removed from my list of possibilities. The days of being everybody's good old reliable do everything Phyllis have faded into the past. The activity and pursuits of that active lifestyle are but memories, another lifetime ago. Many of the things I cannot do now I do find myself missing. There has been much grief for me here, and much wistful longing for that time of wellness. Each issue brings up a pain and sorrow if I dwell upon it. It is difficult not to dwell upon these losses, for this list is much longer and fuller than what I seen to have left to me. It is in the stillness of the night, when insomnia claims the body that these memories crawl out to claim my thoughts and torture my soul. It would probubly be the easier path if I just gave up on myself. After all, I am ill with a chronic, debilitating and incurable illness. I could just sit back and accept my lot in life, using my illness as an excuse to stop living. I tried this route , but the best part of me which remains despises this road. It may be the path of least resistance but it is also the path of least reward. Out of sight, I feel out of mind, abandoned and alone. I become the prisoner of my own body and my own fears. I am afraid to try, lest I may fail. I am afraid of my illness and ashamed of what I have become. This illness is not who I am, I realize this now. Writing this book is part of who I am, an expression of what I am. Of what I choose to be. Survivor, not victim. When I can shift my focus from victim to survivor, I can walk upon the path of reclaimation and begin the process of finding the new "I". This shift is not just something that happens one day; it is a process repeated daily. It moves forward, stumbles, sags, stalls and sometimes even falls back upon itself. Anger can feed it, while indignation can urge it onward. A flu or cold bug can set it back with an unhealthy dose of futility and despair. For every two steps forged forward there is one step back. Progress is slow, jerky, and often seems like there is no progress at all. Frustration and feelings of futility are among the enemies I face. The illness itself is but a pale shadow in comparison. The illness can assault the mind and body but these feelings lay seige to my soul. These are the demons I must face daily, must conquer daily, if I am to rescue "me". And so I begin each day unsure and frightened. The biggest and most frightening steps I take are those which take me beyond my shrunken world. I make small changes, one at a time. Baby steps. I need to feel comfortable with each change before I go on to something new. Upon this path, each stepstone must be laid firmly enough that I will not fall by stepping on it. Each stone must be carefully locked into the others. As I go forward I must do so at the pace dictated by my body. To demand too much of myself is a self fulfilling prophesy of disaster. As I deal with the world at the pace I can manage, I am slowly discovering those abilities which have not been lost to the disease. Sometimes these discoveries are indeed wonderful. I can still bake great bread when energy levels allow. I am still good at rooting out a bargin while shopping. I can still comfort a young person's fears and provide a much needed hug. I can still be me. But I am still afraid. The outside world has become a frightful place to face. But I am me, and I am strong willed. If I take things one step at a time then I have a good chance of tackling them successfully. To focus upon segments of a task helps to dispell the feelings of being overwhelmed, the panic that forever dogs at my heels. I used to think that my giggest demons were based in shame. Now I realize they are based in fear. INTO THE WORLD AGAIN First off, I needed to find more income than my family was being forced to rely upon. This was a daunting obsticle as the CFIDS/ME had rendered me clinicly disabled and qualifiable for handicapped benefits. I had secured Canada Pension Plan Disability Benefits, but at a minimal level because the years of being unable to work continually due to the relapse cycles of the CFIDS/ME had caused my contributions to the plan to be minimal as well. When I applied for these benefits there were forms to be filled in by both myself and my doctor. Since I did not think that the form provided enough room for me to describe how my illness affected my life, I had spent several days writing up a report on how my life had been limited by my illness; how I could no longer drive a car, use a bus alone, shop for groceries, walk unassisted, bathe unassisted or even wash my own hair. I would occasionally fall and be unable to get up, and I was getting lost going from room to room within my own house. I was not strong enough to look after myself let alone earn an income. When the doctor wrote his report, he indicated that I was disabled by both Myalgic Encephalomyelitis and Fibromyalgia with little hope of recovery to a level whereby I could look after myself, making my illness both severe and prolonged. Severe and prolonged are the necessary criteria for the Federal Disability Benefits. My pension application was approved. Don's unemployment problems had left us without a good source of income, and dependant upon welfare. The welfare department had recognized that I was unable to work from copies of the reports I had submitted on my federal pension application, but the provincial welfare ministry denied me any of their handicapped benefits until such time as I could prove to them that I was indeed handicapped under their narrow definition. But since I did get that pension, it was classed as unearned income, and was fully deducted from our monthly allotments. As it was, we could barely make the rent on our shabby old house, which was among the least costly in the entire region. I could not see how having to squeeze my family into a squalid, roach infested, dark and damp basement suite would have served but to make me more physically ill than I already was. The region's subsidized housing projects had a five year waiting list as was, so there was no hope of help from that area either. The local foodbank was a relyed upon source of food to fend off literal starvation. At one point we were grateful for the thrown out submarine sandwiches that were being rescued from a dumpster. Our foster son, Mike, had moved into an apartment a few blocks away and he had discovered that a nearby sandwich shop regularly tossed out sandwiches retreived from the convienience stores they served as near or past their "best before" date, still wrapped, into the dumpster behind their shop. Mike and his friends would take duffle bags and garbage bags to fill with subs in middle of the night dumpster diving sessions. My otherwise empty freezer would be stocked with these subs. This is how we were surviving. Everytime I thought of coping with tommorow I became filled with panic. We could not insure or fuel our car so it sat idle in the driveway. Each month it was a juggling act as to which utility bills to pay to stave off having power or water or telephone services cut off. In winter, there was the fuel oil bills to pay and each month that alone could amount to my entire pension check. Luckally we were able to pay for the oil on an installment plan. We could not afford to provide a home for 'stray youths' any longer, or a soup kitchen either. I was in a situation where I had nothing to loose by applying for the welfare handicapped benefits. I made the necessary appointment with my Financial Assistance Worker to apply for handicapped status. I felt so ill and so useless that I felt that there was no possible way that they could not deem me as handicapped. I was wrong. More indignity was to come, and with it more attacks on my fragile reemerging self esteem. I felt that I was having to beg for crumbs in order to survive. I had to prove myself handicapped in such a way as to fit within the system's narrow and rigid parameters. It did seem a straightforward process at first: File an application, have my doctor fill in the part about my disability and prognosis, send it in.. and wait. This was March of 1994. While I waited, my status and income level remained the same. The powers that be in their isolated office cubicles in Victoria took three weeks to review and reject my application for handicapped status and benefits. They said that I did not fit their designation criteria. My aid worker had told me to expect this, that it was a rare case that was not rejected out of hand upon first application. If I wanted that status then I would now have to go through the appeal process. I was disheartened but I felt that I had no choice but to persue the appeal. I did not have the strength to go it alone any longer, but I was finally strong enough to root out the help I needed and could get. I launched my appeal with the help of an advocate at the Handicapped Action Committee office in Victoria. I had hoped that Don would be working before now making this continued battle with bureacracy unneeded, but this was not to be. He did find training and work experience at a nearby business repairing musical instruments and associated electronic equipment, but the work was part time at best. Although he continued to apply for other jobs, no offers of employment came of it. We were stuck. So I launched my appeal and thankfully in June of '94 it was accepted and I began to receive an increase in my monthly allotment and increased medical coverage. Under the provincial government regulations for British Columbia I received back payment monies only to the first day of the month in which the status was granted. It did not matter how long I had been "underpaid" benefits and what bills had emassed because of it, how I paid them up was my problem. "THERE IS NO MEDICAL JUSTIFICATION FOR THE REQUEST" Although I somehow managed to become stronger psychologically, my physical self did not fare as well. Although I activly puttering about my yard trying to coax a garden out of the stones and rubble that was once a forest, I was growing weaker and less able to maintain even this activity. Soon I was no longer able to to walk even the block to my chiropractor's office, or to the local thrift shops and shopping mall. I had the right to apply for help in getting mobility aids, and my doctor reccomended a power scooter. I needed to be able to get out and about on my own. Being once more imprisoned in the solitary confinement of my home was threatening my hard earned progress into rebuilding a life I could live with. Even though the power scooter was my doctor's idea, and agreed upon by my chirporactor , and my legal entitlement, getting it was not an easy matter. Once more the roadblocks of bureacracy were thrown up in my path. I began my quest for mobility in August of 1994. The Social Services (welfare) Ministry was not an easy place to get the required information out of. It took several weeks of calling daily to finally contact my case worker, and even then I was given false information on what information to gather and who I should see first. It took a month for me to finally arrange to meet with my worker to find out what it was I actually did need to do. I needed a special Ministry form to which I had to attach a physiotherapists review and a doctors report. I had already gotten the assessment from a rehab-physiotherapist and her perscription for a power scooter. I had tried out several machines from a nearby medical supplies dealer and had a quote on a machine that I felt suited my needs and was within the Ministry's cost guidelines. The physiotherapist had agreed with my choice of machines as appropriate to my situation, a heavy duty three wheeler. The note from my doctor was not detailed enough and not on the required specialized form. Thankfully I was able to mail this form to his office, and he would then forward the information to the right department. I was not physically able to make the long bus ride to his office and there was no one available to drive me there either. Again I waited. On October 7th, 1994 a memo of rejection was sent to my local district welfare office, to be stamped there as received on October 13th, to be received by me another week later. By now I was housebound, unable to walk the distance between my house and the street without my legs collapsing out from under me. The reason for the rejection was short and sharp... "There is no medical justification for the request." I was more than just upset, more than just angry. I was stunned. How could my request not be justified? My legs did not work and I did not have the physical strength to push myself about in a borrowed Red Cross wheelchair. When the feelings of being stunned left, I was left feeling insensed. How dare they sentence me to life to be lived literally under house arrest! I got Don to do me up several photocopies of that memo of decision and I started to write the letters of protest which I would attach the memo to. I wrote a scathing letter of protest to the Minister of Social Services herself demanding to know how my imprisonment was medically justified, and I attached not just a copy of the memo but a copy of the physiotherapists report as well. I made further copies of the entire package and sent these off to my case worker, doctor, physiotherapist , my Member of the Legislative Assembly (MLA), and to the departamental worker who had issued the memo. Within a few days of mailing off my letters expressing my outrage I received my first reaction to my efforts. I was getting action, but no results as yet. Calls had been made from the Minister's office and my application would be refiled under an urgent lable. I may not have to launch an appeal process afterall. My case worker at the local welfare office wanted new reports from both the doctor and physiotherapist, to be sent to her office for forwarding to the appropriate department. For a full month the social worker played an unending game of telephone tag with Dr. Wolovitz. He was happy to submit a report, but he needed to know exactly what type of information was required in it to meet with the Ministry's regulations. Even though he had requested this to be put into writing and sent to him, the worker refused to send him any written instructions nor would she speak with him when he tried to return her calls. He was, on the other hand, expected to take her calls even if he was busy with a patient at the time. It was only when I contacted my worker to inquire about the status of my application did I learn that my doctor was delaying things by being so "difficult", as she put it. A month after I had mailed my letters, I received in the mail a reply from the Minister in charge of Social Services herself. She informed me that she had ordered a review of my application and provided me with the name and address of the departamental director involved, and told me to have any extra information I had to be sent to this person directly. I happily sent copies of the Minister's letter to both Dr. Wolovitz and the physiotherapist. It took just two weeks for me to receive the good news, from the owner of the shop where I was to have my scooter purchased from. My application was approved and as soon as the paperwork was received my scooter would be delivered. It was now into December, and I has spent most of 1994 battling with the Social Services Ministry. A few days before Christmas my scooter was delivered, adorned with bells and a big red bow. I felt that I had just been paroled from my jail sentence. The day after my scooter arrived, my case worker called to tell me the good news I had received a week before. She said she had just gotten notification that the scooter had been approved and that she was surprised at this since she was still collecting information in this regard. She was even more surprised to learn that I had received my scooter the day before. I felt very smug about that call. I had won this round afterall, and I had gained a modicum of freedom. Weather would still be a deciding factor in my being able to be out and about, but when it cooperated I had my freedom back. FREEDOM REGAINED Riding on my scooter, my three wheeled Pillar Express LX, provided me with an exhileration that I had not felt since I lost my ability to ride my bike, and the freedom I lost when I could no longer drive a car. The weather was mild around Christmas of 1994, and I took full advantage of it. Freedom tasted sweet. The iron curtain of isolation had parted and the smiles of those I met upon the local streets welcomed me back from my long exile. I felt at home in my community once more. I did not feel the dips and bumps along the roadway as I traveled about the area where I live. I was flying, soaring. Out, learning to operate "Betsy" I was free... finally free. I had my life placed on hold until my mobility was regained. I was off hold now. I was on forward. Now I could move ahead and work on turning ideas and longings into plans of action. That was my plan anyhow. I had emerged up the side of the Valley of the Shadow of Death, but could I stay there? I could still slip back down that slope even if I was being very careful. I still was disabled by a severe and debilitating chronic illness. I was still on welfare, still unable to persue a normal job. But I was out of the valley, and gaining on my goals towards independance and psychological and spiritual well being. 1995 promised to be a very good year indeed. ----- March, 1995 I'm getting there I think. I'm not to sure about it. But... Possibly I am correct. I really might just Get there yet. One thing's for sure And that's I'm trying. Sometimes I feel lost Really lost. Hopeless even Even yet. What else can I do but do ?? P. Griffiths, 1995. ----- WELFARE WEDNESDAY Welfare Wednesday is the one day each month that strikes terror into my very soul at it's very approach. This day usually occurs on the last full week of the month, with the exception of December when it is held on the Wednesday prior to Christmas. This is the day of check issue. I never know from one month to the next if my check will arrive, if it will be delayed due to processing or post office, or if it will be held at the local Welfare office. If it is being held at the office they don't always send out a notice, so if the check does not arrive in the day's postal delivery panic is triggered. I must keep trying to get through to the local office on the phone until I finally get through. I must then ask if my check has been sent. If it has been sent, part of the fear is relieved. If the check has not been sent, panic arises. Why? Why has it not been sent? Has one been issued at all? What has gone wrong? What have I done wrong? How will I pay my rent? How will I pay my bills? How will I eat? If I filled out the monthly request for further assistance wrong again, there may be no check issued and notification sent out. I must then come in and see my worker and correct the form for a check to be issued. There is almost no food in my house, and the foodbank is closed the week that the welfare checks come out. Maybe I can get to the office to wait until my worker can see me for two minutes so I can add the "0" in the spot I missed under children's income. That I have no minor children on my file is of no concern, I must fill in all the blanks in full. If the worker is too busy or not in the office I must make an appointment or come back when he is in and wait for him to have two minutes to see me. The first appointment open is never less than two weeks away. The rent will be overdue by then. Maybe the check is being held again because the worker does not like the way the numbers add up. I could not possibly be living on what they give me to live on so there must be fraud going on. I had told them that my adult son was paying a share of the rent and utilities, but the worker had neglected to put that into the computer and meanwhile the office had switched workers on me... without notifying me of course... and now the numbers didn't add up. It was all up to me to track down what was going on. They did it to me once, and they could do it again at any time. Possibly the worker feels that Don isn't looking hard enough for full time employment and want's to see Don and not me before releasing the check in my name. Every few months this happens, sometimes we get warning and Don can make the visit before the check issue time so the check gets sent. Sometimes it is only when the check does not come that we find out that something is wrong. Why is it that the people down at Welfare think that living at less than 50% of the poverty line established by their own figures is so comfortable that Don wouldn't be looking for full time employment or a third part time job? If the check does arrive on schedule, the next hurtle is for how much it will be. How much is deducted this month for Don's income? They usually allow us $200.00 of earned income. My pension is unearned income and deducted right away. If we get an income tax-credit it is deducted. If we win a few dollars on a lotto ticket it must be declared and deducted or we can be prosecuted for fraud. What was income in December comes off the check for paying the rent for February. It does not matter if Don got less hours at the music shop because of slow January business, the rules are the rules. Some months we can keep a small percentage of what Don makes over the $200.00 allowable, but other months it is all deducted. It is at the discretion of the social worker it seems. Got a complaint ? Make an appointment with the worker for three weeks from now. Maybe they did make a mistake and we have to pay back the monies they allowed us in excess two months ago. I have heard of this happening and I do not dare to risk it. When I do have the monies in hand from the Welfare check and from my son for his share of expenses, I must pay the bills and buy the groceries. My son is also on welfare. Youth unemployment in our area has been around 25% for many years, and try as he might he has unable to find a job. As an incentive to young people to find work Welfare cut the rates. Chris keeps applying for jobs and not getting them. If Welfare feels he has not been trying hard enough to find work then his check will not arrive, his third of the expenses will go unpaid. Will his check arrive? I worry each month about this until that check arrives. As long as Chris resides with us and helps pay expenses we can stay in the house we are renting. If he moves out, we must move to what we could then afford... a damp dark tiny hole of a basement suite somewhere. Depending on what monies I have I must juggle who gets paid what amounts. The rent and the oil bills are constants. I am lucky in that I can pay for the winter's heating oil in installments as on a cold month we can use up $300.00 worth of oil just keeping the place at 70F. Then there is the phone bill, the water bill, and the electricity bill. Which bill must be paid this month? Which bills can I make partial payments on this month? What is leftover for food and medicines? What is available for clothing or shoes? I pray there are no emergencies deal with that cost money. Don's income pays for the car insurance and expenses, the milkman and paperboy, and to pick up small items as he gets a few dollars on musical instrument repairs. We have tried to survive without a car but it makes life much more difficult. Without the car I must buy our food exclusively at a local shop on my scooter, driving up the food bill by up to 20%. I can use public transit with great difficulty as only some busses are scooter accessible, and only on some routes at that. Not only that, the weather is a factor in my being able to get out on the scooter and I find bus travel exhausting on the best of days. Getting to my doctors appointments is almost impossible without a car. We don't use the car much as Don and Chris use their bicycles for personal transportation for the most part, but for what we do need a car for we really need it for. There is no special assistance being granted to me from Welfare available for the expenses of having the car other than our being allowed to keep it. I do not welcome the coming of Welfare Wednesday. I do not like the fear that I feel in the days leading up to this day each month. I do not like to feel the guilt over being unable to provide for myself and the humiliation I must go through if any problems arise in my being allowed to stay on the system for one more month. I do not like the stress of having to decide what bills get paid and what supplies for my cupboards are urgently required. No, I dread Welfare Wednesday... it is an ongoing reminder of how much I have already lost and a constant threat that I yet have more to lose.. my home, my pets, the life I have left.