Changing My Act
With vacillating levels of self-confidence, I am compelled to justify myself to strangers. I possess a need for those I don't even know to understand that I am not lazy. For, those I do know, often seem unable to comprehend the changes in me.
Somewhere through the ravages of a cruel disease, I have lost my identity. My sense of self, once so wrapped up in a myriad of endeavors while I focused on the balanced perfection of all of those aspects, now must concentrate if it can on a single compartmentalization at a time.
I once was a juggler. Then, after years of making brief appearances, the circus finally left town.
I have Chronic Fatigue Syndrome (CFS) that disease with the awful name for "chronic" has the negative connotation as someone who complains and "fatigue" trivializes the syndrome by focusing on the least sympathetic symptom.
Those who suffer from CFS and the often accompanying fibromyalgia (FM) and multiple chemical sensitivities (MCS) undergo not only severe lifestyle changes brought about by this devastation to their health, they often experience ridicule as well because as yet the medical community does not have a "definitive test" to prove or disprove the existence of the illness. (The illness is also known as chronic fatigue immune dysfunction syndrome (CFIDS) and outside of the USA is usually known as myalgic encephalomyelitis (ME).) Forced to prove that he is not lazy, or suffering from psychological problems, the victim must become his own advocate when he least has the energy to expend on his own behalf. CFS patients, often described as suffering from a walking death, suffer also because they do not die. Therefore, it is deemed more expedient to channel funds to research on those diseases that kill. CFS patients aren't expected to die; they're just supposed to quietly lie down and go to sleep.
The easiest way for me to describe CFS and FM (which is often referred to as an arthritis-type condition of the muscles) is for you to imagine how you feel when you have the flu: headache, muscle aches, and total debilitating exhaustion. That is how I feel on a good day. The MCS means that I am bothered by perfumes, soaps, and most medications because of the preservatives. My reactions to medications are usually more severe than the symptom for which they are intended to treat. The consequences of adverse inhalant exposures such as perfumes range from temporary laryngitis to dizziness to exacerbated muscle pain to total loss of concentration. At the time of my diagnosis I was a full-time dispatcher at the local (St. Marys, Ohio) police department and for all intents and purposes writing full time as well. I edited and typeset a 20-page user group newsletter plus served as contributing editor at one computer magazine, wrote book reviews and articles for another, and wrote hardware, software, book, and product reviews for whoever else would buy them. I also did PR, copywriting, newspaper features, and other writing.
Before my November 1990 CFS diagnosis, I'd pretty much been able to get by on as little as four hours of sleep a day. I liked being busy. However, I was able to keep up that pace because my daughter was still at home and did the laundry and other chores and my husband helped with the housework, too.
Along with the CFS diagnosis, I coped with many changes. My life partner was now dead. My daughter was at college. I slept more hours than I was awake.
The doctor kept me off work for around six weeks. Then, after complaints from the police department about extending my sick leave, he sent me back to work in time for Christmas.
I then lived in a huge house, but I pretty much limited my time at home to sleeping on the sofa so I wouldn't have to go upstairs. I created what I called my "coffee table kingdom." During this time, because of the fatigue, I wasn't even able to concentrate enough to read, so I was continuously forgetting things at work. Because of the nature of the job, I was terrified that I'd make a serious mistake.
Once again I found I suffered from what in the past had only been temporary episodes of cognitive impairment. I'd spent a lifetime trying to "work to my capacity" only to be faced with the lazy unwilling to quantify her goals labels that eventually attached themselves to me, because of my ignorance and that of the doctors whose help I sought and the past employers I had tried to please. (Does a male patient, when asking a physician whether or not he should be concerned that the constant headaches are intensifying get asked: "Is it that time of the month?" or "Are there problems at home, dear?") I lived through surgeries and collapses and rebounds and counseling prescribed for irritable bowel syndrome and chronic ear and sinus infections. I had peritonitis from my only bout with gall bladder problems (its rupture!) when the surgeon filled me with IV antibiotics -- they all fill you with antibiotics -- and then removed the body part, never once questioning what havoc could have been occurring inside my body to cause the explosion. (Mask the symptoms, don't look for the source.) Then I endured my severe and devastating loss of cognitive skills in 1990. When every denial I had should have been exhausted, I struggled for almost two years to hold onto the job with the guaranteed paycheck. I gave up the writing I loved. I hid a tape recorder at work in case I missed radio traffic while I was on the phone or wasn't able to write fast enough to list the extra assignments an officer shouted over his shoulder as he went out the door while the radio droned and the phones rang and the dot matrix printers rumbled and each and every noise cut deeper and deeper into my concentration. Yet, I couldn't let anyone know I was getting stupid. I'd always kept a book open on the radio console next to the phone, a source of jokes on station because my friends and I would keep track of how many pages read one *captured* paragraph at a time I'd been able to cover that night. I still kept a book there, but now it was for appearance. I could no longer understand what was written on the page.
In September 1992 through my denial, my refusal to accept that this fatigue was going to last for very much longer, I convinced myself that all my problems stemmed from working third shift. I erroneously told myself if I could set my own work hours, I could cope. So, I accepted the position of District Manager for an educational products company and once again was in commission sales.
Instead of getting better, my illness intensified. Now I understand it was in part due to the car fumes from driving so many miles and exposures to different perfumes and cleaners I encountered. The longest stretch I was able to work was 3 months. I worked crashed worked crashed longer worked crashed completely. Therefore in August 1994, a friend convinced me to see a mental health counselor. There I learned that I was right; I was not clinically depressed. I was fortunate. My counselor had a friend with CFS, so she understood better than I did at the time what I was going through. We worked on redefining my definition of success and she convinced me to quit work and apply for disability. She put me in tough with the Bureau of Vocational Rehabilitation (BVR). (I should also note that I switched doctors at that time, too. Although my initial doctor diagnosed my condition, he only seemed to want me to stop by his office for a weekly visit so he could tell me to pace myself and I wouldn't get so tired. Yeah, right! My doctor now is great. I worked with his brother at the PD, so he knows from him that I'm not the type to *fake it so I can quit working.* He takes the time to research my illness and referred me to the environmental specialist who did my allergy testing.)
Part of my work with BVR included a complete neuro-psych exam. Those tests proved that my IQ has dropped. The tests also proved that I am not depressed. (The report said something on the order of "while understandably constant fatigue can cause depression over the condition, this subject doesn't fit the criteria as someone clinically depressed inability to experience joy, etc.") I now tell those who mention depression that "I'm not certifiable and I have the papers to prove it!"
I've run into all kinds of Catch-22 situations. Because I'd been on PERS while I worked at the PD and hadn't paid enough into social security from my writing and sales to constitute those jobs being my primary employment for five of the last ten years, I didn't qualify for social security disability. My SSI disability was approved first time around. (I completed all the paperwork and gathered all the data from my doctors and tests myself without an attorney.) However, because my late husband was a veteran, my disability was rolled over to a VA pension. If I were on SSI, I could earn unlimited income for the first four years I work with BVR; under VA, I have to pay back dollar for dollar what I earn. However, because I'm hoping that I don't have to live on this [lack of] disability income forever . . . .
I'm now doing the work to rebuild my writing career. I finished a romance novel; I am attempting to sell it. I started two other novels a mystery and an autobiographical first person CFS story. I attended a writer's conference recently. I have several other writing projects in the works. Plus, I write the market column for *Writer's World* magazine.
However, as I write this essay, a four-week relapse just ended during which I slept more hours than I was awake. My concentration abilities during that time prevented any serious writing, as I found that I was unable to think beyond short, brief sentences.
Friendships are very important to me. I do not have the energy to socialize to any great extent so I cherish the few close friends I have in my life; I focus on maintaining those relationships. But, I have added friends as well. I have made several close friends via the Internet. A lady with CFS spent a week at my house recently. There is a part of me that really looks forward to any visitor; the other part the part that chooses to use most of my energy for writing rather than leave any left over to do housework shudders at what people will think of my cluttered home.
I live in a small mobile home now. During my four-year struggle to keep working, I exhausted my savings and incurred additional debt. In November 1994, I finally sold my large lovely home at a $15,000 loss to keep from losing it to foreclosure. I am fortunate in that I found a trailer at a reasonable price so I only have the $106 a month lot rent plus utilities. Still, living on $423 a month in disability income is anything but easy. I hate the whole system. I tend to be politically conservative; I find the welfare system to be anything but compassionate. It is NOT designed to encourage any type of budgeting skills. (For example, if I were to allow my lot rent to get far enough behind that the park owner would start eviction, I could add another $1000 to my yearly income; that is the amount available through one such source of emergency funding. I prefer not to live that way.) Also, because I was unable to make it to a scheduled appointment due to my fatigue, my human services case is now considered inactive. So, until I complete even more paperwork, I am without the $85.00 in food stamps I need for my groceries.
I struggled to keep working; now I struggle to exist. I am involved in a fight to improve my situation. And, through it all, I believe I have been strong. I let go of my pain. I refuse to carry it with me. True, I sometimes pull it out and look at it, angry at the source. But that source will not control my life. I do. Whatever aspect I can at any given moment. I control whether or not I approach something from strength. I alone determine whether I relinquish that control to become vulnerable to what could be yet another source of pain. If pain results, so be it. But at least feeling that pain proves I'm still alive. And fighting. And living. And loving. My love for my daughter and my love for my granddaughter and my love for my friends and the love I've been fortunate to experience during momentous relationships in my life have each carried, and do carry, risk. But that risk is my higher plane of consciousness. Life without that realm is too stark.
Ralph Waldo Emerson
I'm writing a book; I've got the page numbers done.
Remember the good news in every day... for it is there if we only
Pamela Rice Hahn (from the short story: One of Those Moods)
A few things worth noting since the writing of the above essay: