Cort's Chronic Fatigue Syndrome (ME/CFS) Story
In 1978, nineteen years old, I entered the University of California at Santa Cruz – a beautiful campus set in a redwood forest on the central California coast. After having grown up in urban southern California the natural environment was a revelation to me. I quickly changed my major from English to Environmental Studies and began to explore the forest. It was a heady experience. I felt I’d tapped into something very powerful and was eager to explore it fully. Even today I can remember the enveloping softness and stillness that would unfold as I stepped into the forest.
After a year or two, however, things began to go wrong. An avid runner I used to run the trails between classes – twisting and darting my way through the forest. Now I began to experience a deep ache in my thighs and was inordinately tired. The hills I used to fly up filled me with dismay. Once the campus police, after watching me climb and then rest at the top of several hills stopped and asked me what was wrong.
While walking was difficult standing still was often torturous. A simple wait in a café line would send the blood pooling in my legs and leave seemingly every cell in my body screaming at me to lie down. As time went on I became hypersensitive to foods. A glass of water could set my heart pounding – bam, bam, bam – for hours. Listening to it hammer away I wondered how this little muscle could handle such stress. Surely it would fail at some point. As the disease progressed on I developed insomnia, my libido disappeared and I had trouble staying warm in the cool coastal climate. I was still able to do my class work but for some reason speaking seemed to demand incredible amounts of energy. Eventually my connection to the wilderness vanished – the formerly enchanting forest now seemed dull and lifeless. Finally I saw the campus doctor, a cheery guy who shook his head, stepped out with me into the corridor and told me to run up some stairs - – which I did – and informed me it was all in my head.
Eventually I took the advice of a chiropracter to go on a fast. It worked too well – I stayed on it too long, lost too much weight, was diagnosed as anorexic, and left school and returned to Southern California. A complete physical examination revealed, of course, no abnormalities. Neither the psychiatrist I began seeing nor the antidepressants he prescribed did any good and I lingered on, wrapped in my heavy clothes in the sunny southern California climate, wondering what had gone so wrong.
My body hurt but my mind seemed crippled as well. I could walk to the store but if I attempted to diverge from that goal it was almost as if I was physically barred from doing so. The task was too complex it seemed, it required too much psychic energy. I who a year or so earlier was ranging the backwoods and cutting new pathways to class couldn’t muster the mental energy to walk down to the beach.
An Early Form of CBT: Early in 1981 I had a major breakthrough. My mother had become interested in an intense two weekend course called EST that promised increased vitality, self expression and a higher quality life. It was designed to allow individuals to break through barriers that they did not even know existed. People did indeed come out of the ‘training’ full of energy and excited. For some it was even a life-changing event. The introductory seminar was filled with the most lively people I had ever seen. I took it and it worked. My energy levels increased dramatically. Even now, 23 years later and 13 years since I last participated in that organization, I can remember some of the unique aliveness I associate with it. It was like being shot out of a cannon – it wasn’t pretty – I was often splattered against emotional walls – but it was enlivening. I learned that out thoughts have power and that ‘upsets’ come from unfulfilled expectations. As a CFS patient I was full of unfulfilled expectations.
My positive experience with this program is why I have never railed against cognitive behavior therapy. Having any kind of chronic illness is difficult but having an unexplained one that effects every part of your life is an enormous challenge - one that nobody has been trained to deal with. This program is still probably the most effective 'therapy' I have ever found. It was a powerful experience.
Despite my increased energy, however, I was not well. I had always engaged in athletics before and was physically quite strong but even after EST I felt weak, my concentration was often poor, my muscles and body still ached, and I was still plagued with constant sore throats. I often felt simultaneously hyped up and wiped out. Instead of fitting smoothly into conversations, I often felt awkward and out of place. I had experienced some significant improvements, but I wasn’t back, not at all. I had less attention on my symptoms and a more positive outlook but I still had a long way to go.
Some activities in particular quickly reminded me of how far I still had to go. Family get-togethers were usually dismal events. The real debility that this illness had caused became painfully evident when, overexcited by the chance to see my bright, interesting family, I would inevitably overexert myself and end up exhausted and feeling slow, awkward and out of place. Not being able to interact with them at my former level was deeply disappointing. Several times I wept bitterly afterwards.
After some years of participating heavily in EST (now called the Landmark Forum) and working part-time at a variety of menial jobs I returned to school. While there I decided, for the first time in eight years, to test myself physically. Before CFS few days had passed without a rigorous bout of exercise. Exercise was never a chore for me - it was some thing to look forward to, something that kept me sharp and alert. Now I gave it a try again – and failed miserably. This was another milestone for me. I had always wondered, given my success with EST, if all I really needed to do was to somehow construe my mind in the right way and I would be well. The constricted muscles, pounding heart, sore throats, mental dullness and incredible fatigue that appeared after short workouts left no doubt as to the organic nature of this illness. For the next several years I tried, at different times, to swim, bike, run or lift weights all with similar results. I was able over time to work up my way up to an increased level of exercise and activity but inevitably my quality of life suffered and I eventually gave up each of them.
Sometime in the mid 1990's I realized that what I had was called Chronic Fatigue Syndrome/FIbromyalgia. The news at that point was so grim, however, that what books I bought I quickly put away. I had come some way with CFS/FM - I didn't want whatever progress I had ruined by a book that provided only doom and gloom.
For the next several years I had – for the first time in many years – health insurance and I used it to the hilt. Not wanting to repeat my experience with the doctors at UCSC or Kaiser I began seeing a series of alternative medicine oriented MDs and sampled a wide variety of treatments including several vitamin IV’s, hydrogen peroxide IV’s, chelation therapy, provocation & neutralization allergy shots, yeast treatments, thyroid pills, etc. The only thing that temporarily helped was a macrobiotic diet. None of the other therapies had the slightest effect, positive or negative. My physical condition remained mainly the same.
I was in a strange sort of middle ground; I was well enough to be able to go to school and to work to some extent, but not well enough to do well at either. At times I would experience moments of clarity and energy reminiscent of former times but they would soon devolve into fatigue, fogginess and struggle. My body hurt and I was still troubled by constant sore throats. I was also beginning to understand that, after 10 years with this disease, not only was I was falling behind my friends career-wise but on more fundamental and personal levels as well. As my peers moved on they gained in a confidence, stability and maturity that I did not share. I was almost thirty but I felt almost adolescent at times in my control over my emotions and in my sense of self. My thoughts were easily scattered and I was easily rattled. In most ways I was more self-assured, settled and mature when I was nineteen and healthy than I was at twenty-nine. It seemed that I was existing on the fringes of life, that I was missing much of the richness that I knew existed.
I now believe that a large part of this was simply due to my inability of my body to relax. I was caught in a war zone – my body was the field of battle – and it was always on alert and over time I adjusted to it. I didn't realize how much so until a successful treatment years later actually left me relaxed. This was something of a revelation. I had become so accustomed to a body that was constantly struggling that I had forgotten what it was like not to be.
Throughout all this I was engaged in a bitter struggle with the hand I had been dealt. The disconnect between what I had expected to happen and what actually did happen left me angry and frustrated and no doubt exacerbated my symptoms. On the surface I was always a cheerful and upbeat person but many times I was filled with rage. It took very little when I was by myself to set me off. It didn't help my emotional situation that my libido was still shot. I could make it to class and even do well but that left little room for much more. Sometimes the magnitude of my problems left me breathless and I could feel my mind simply shut itself down. In a down moment I foresaw ending it all if I was still like this at forty.
After graduating from college with a BA in philosophy I worked a year or two in yet another menial food service job and then decided to enroll in a masters program in environmental studies at San Jose State University in the Bay Area. I had nothing else to do. There were no treatment options that I was aware of. Despite still not feeling strong, I decided I had nothing to lose by returning to school – it was the one realm of endeavor that I was still pretty good at.
Sometime in my second year there a third dramatic event happened: I began to respond positively to treatments. I am still uncertain why this happened (getting rid of amalgams?) but a trial of zinc solution produced notably increased energy, mental clarity and relaxation for several hours. Coming after 10 years or so of absolute failure this was tremendously exciting. I thought ‘My God! It was zinc all the time. I was simply deficient in zinc!
The longer I took the zinc solution, however, the less obvious the energy boost was and the more I began to experience some troubling symptoms. The insides of my knees and elbows began to ache and my ‘joints' started popping. Sometimes I would stretch my back and hear pops rattle up and down it. I also felt extremely jittery and my voice became high-pitched. As I tried to push beyond this reaction it worsened and I developed a fluey feeling and became exhausted. Instead of feeling constricted like they usually did, my muscles seemed limp and lifeless. Eventually I had to quit the zinc. This experience with zinc began a pattern that exists to this day; as soon as a treatment starts providing a really good boost of energy I start to fall apart. The bigger the energy boost the more quickly I must stop. Since this time my initial response to treatments has become superb – there are few treatments I do not now respond very well to.
I felt like Charly in Flowers for Algernon. Each treatment would boost me temporarily into a new world of energy, mental clarity and a real ‘at easeness’. During a couple of very powerful treatments I felt like I was accessing parts of myself I had not visited in many years. During one powerful and eerie experience I felt like I was literally transported back 15 years in time. For an hour so I felt like I briefly merged into an old but completely unblemished version of myself. I had the strange feeling I was thinking the same thoughts that I’d had shortly before I became ill (!). My mind felt clear and strong. For a brief while I began to look ahead, to chart my path, to take on bigger issues instead of being confined to the more pedestrian issues I was usually limited to. The fog of CFS lifted for awhile – as it always does with a new treatment - but the effect this time was extraordinary. I realized that that sense of my self that I’d been missing was still in there somewhere and it was essentially untarnished.
It was an exciting time. I felt I was so close! All that energy I had been seeking for was there! My body was willing and able to provide it. I had worried that some basic processes had been damaged so severely that I would never recover but apparently they hadn’t. Some parts of my body were still strong.
I searched widely through the general CFS literature but found only one oblique reference that appeared to refer to this problem. Unfortunately it was on Dr. Cheney’s website and he was far too expensive for me. Instead I drafted a letter explaining my dilemma and sent it to dozens of doctors that had some connection with CFS. About a third replied but none had a solution to the problem. One said he’d seen thousands of CFS patients and had never come across this problem. One old acupuncturist I visited wagged a finger in my face when I explained this reaction I was having (to Ginseng) and said ‘Never in 2,000 years has this happened!’
Then one day I got a positive response back. A doctor in Dallas said he could help me. I made an appointment, flew to Austin, I believe, to save money, and then drove to Dallas, my head out the window all the way to avoid the car fumes I had become sensitive to. I was in a state of high excitement. Five minutes into the appointment I realized he didn’t have a clue. Far from being my savior, he turned out to be one of the most inept doctors I’ve ever come across and I left without paying.
When I had been in Dallas a year or two earlier, Dr. Rea – a very good doctor – asked me how I felt when I was outside? Did I feel better? I really thought I did. When I went camping it seemed like I could do more exercise than in the city. When I returned to school the next semester and couldn’t immediately find a place to live I had to camp out for awhile in the Santa Cruz Mountains. After a week or so I felt I might be able to do this more or less permanently. By doing so I could possibly benefit my health as well as save some precious money and immerse myself in nature once again. So began 8 years of camping out in the mountains and a new and ultimately very disturbing chapter in my quest for health.
Since there is little paid camping in the Santa Cruz Mountains and even that was too expensive I ventured down dirt roads or found concealed pullouts that enabled me to hide my truck and pitch my tent. It was surprisingly easy to remain hidden if I just kept my truck out of sight. I was able to stay at some places for over a year before being discovered; others it was only a matter of days. If camping out in the woods had any positive effects on my health, however, they were minor.
Around this time I came to a fourth turning point. As time went on I had felt, in fact I was sure, that I was slowly improving. Ever so slightly but still steadily my energy had improved, my muscles ached less and I felt more grounded mentally and emotionally. Casting around for a thesis topic I decided to pick one that would include testing my self physically once again. I decided to do a survey of the regions parks for a rare component of the grasslands – native grasses. It involved walking - my favorite form of exercise. IUnlike some CFS patients I have never been able to tolerate even a small amount of weight lifting. Even using my own body weight with pushups was just too traumatic but I could walk, - even when I was at my worst I could walk - it just really hurt to do so. When I overdid it, which I frequently did, I could distinguish between a dangerous kind of relapse - one which involved my getting a fluey feeling and a painful but not dangerous form - which involved my muscles getting stiff, my energy declining etc.
After my worst bouts of over-exercise I only needed a week or so to recover to my prior levels. Interestingly enough during exercise I often felt much better; exercise was a way to free up the muscle constriction and deadness that I felt. I could, in fact, build up my tolerance to exercise over time. During an ultimately failed attempt at bicycle riding I eventually worked myself up to the point where I rode from Redondo Beach to Long Beach in Southern California – a distance of about 15 miles. I could feel and see my muscles getting stronger the problem was that my quality of life felt apart. When I wasn't actually exercising my muscles felt stiff and hot and hurt, concentrating became more and more difficult, conversation problematic, my coordination suffered and I spent more and more time on my back. Pretty soon it became apparent that however much I enjoyed myself while I was exercising it simply wasn't worth it.
My survey started as I’d expected; I experienced hot feeling, constricted muscles, pounding heartbeat, occasional dizziness and enormous fatigue. I was spacier than ever and summoning up the energy to talk coherently was more difficult than usual. As I pressed on my symptoms grew worse.
Anyway, here I was walking the grasslands of the Santa Cruz Mountains looking for native grasses. I needed to get this project done (I didn't have any other ideas) and pushed myself – walking several hours a day – every hard, harder than I'd had since I'd become sick. But then one day when my symptoms seemed to be at their peak, they all of sudden just melted away! Like a snake losing his skin all of sudden I felt renewed, my muscles were loose and relaxed and my energy was good. It was an amazing experience. For rest of the summer I was able to walk further than I had in 15 years. Cognitively I wasn't any better, in fact I think I was worse but I closed out the summer out with an 6 mile hike – exhausted to be sure, but still alive. I was not back to my former self - I could have easily thrown that off when I was well – but my energy was better.
How did it happen? I have ideas but of course I really don't know. Whatever the reason for my increase in energy I was thankful for its appearance. Unfortunately it did not appear to be without its downside. Sometime that summer I began to ‘react’ to things that had never bothered me before. First I noticed that I sometimes felt ‘spacey’ and had trouble talking or organizing my thoughts indoors. Then odors I had never noticed before began to bother me. At first I threw this off – a small price to pay, I thought, for my increased energy. The situation, however, got worse and worse.
That fall I tried for the first time in years to take on a full time job. A month or so into it I began being bothered by the fumes emitted by the fryers. A filter cleaning temporarily resolved that but it got so bad that I had to transfer to another department. I was okay there for awhile but then I had trouble with burners, then it was a newly painted room, then it was the dishwasher. Soon electronic components began bothering me; cash registers quickly made me spacey and the computer lab was tolerable only for short periods. Paper products nauseated me. My energy generated during the summer was gone; attempts to walk now just left me with my old fluey feeling.
As I was falling apart in indoor environments my troubles with out of doors increased as well. As the weather grew colder and wetter my symptoms became greatly exacerbated. I was overwhelmed, crawling into my tent for the first time in six months, by the plastic odor emanating from it, and I had to stop sleeping in it. Bizarrely enough when the soil got wet it seemed, as I lay down to sleep, that a small electric current in my body was turned on. I also began having problems with pollen for the first time. Walking my old trails left me exhausted and disoriented.
As my sensitivities had increased I was only able to tolerate cotton which, unfortunately, is a poor insulator. I became inordinately sensitive to cold and had trouble staying warm even wearing two pairs of pants, 4 or 5 shirts and a sweater. Most disturbingly I began having trouble with natural gas. Eventually I had to choose between staying warm but feeling ill indoors or suffering from the cold outside. My most bizarre problem, however, concerned my shoes. For some reason I had terrible problems tolerating shoes! I wore the few pairs I could tolerate until they were in such disrepair – held together by duct tape – that strangers began giving me money. My taped together shoes provided poor protection against the cold and almost none against the wet.
Battered by the cold and seeking a more hospitable ‘home’ I bought a full-size conversion van that I stripped to the metal in order to remove all the synthetic materials. In my ignorance, however, I disconnected a ‘live’ air conditioning hose - a small explosion ensued – and I sucked up enough freon, grease and god knows what else to leave me battling nausea for the next two years.
My ability to tolerate work continued to plummet. I was very lucky in having an understanding boss who went to great lengths to find me comfortable places to work in but my comfort zone continued to shrink. Driving the company van was cut down to very short trips. Picking up orders in the kitchen required holding my breath and then running in and out as quickly as possible. The varnish they used on wood caused me great distress, as did the air inside the gym, and the smoke from the fast food place next door. A bad reaction to landscaping materials that were periodically used on campus left me nauseous and out of breath. Over time my work became erratic. Once I became so sick I just walked off a job. Most disturbingly my hands and feet began tingling and then falling asleep at the drop of a hat.
In the meantime I was running out of places to camp. As I ran out of the better (i.e. better hidden) places I was forced to camp closer and closer to the city and eventually to seek out places in the city itself. Not surprisingly my stay at each became shorter and shorter. Not long after I finished up Master’s Degree I was caught in the last site I could think of and I abandoned San Jose for the warmer and drier climes of San Diego where I took refuge in the back yard of my sister and brother-in-law’s house.
My refuge soon turned into anything but, when after a bad reaction a month or so later to some fertilizers, I was back in the wilds again, this time huddled down the hill from their house in the chaparral at the edge of their property. A week or so later while walking down a street I was overwhelmed by the taste and smell of fertilizer – it seemed like it was everywhere – (but it must have originated with golf course across the street) and I jumped into my truck and drove 1 ½ hours to the desert where I have spent much of my time since.
The desert did prove to be a refuge – not a very welcoming one – but a refuge nevertheless, and it has been there that I have slowly begun to recover my health. Two and a half years after moving to the desert I am able to better tolerate a wide range of materials – from clothes, to foods, to paper products and most importantly natural gas – that bothered me before. I have less abdominal distress. A white rash that decorated my elbows for years has receded greatly. At times I have experienced a sense of relaxation and peace that I have not felt for decades. Interestingly enough I have also begun, for the first time since my illness began, to remember, if irregularly, my dreams. A few times I have even woken up feeling well rested! (An interesting feeling.) After many years of diminishing prospects I have some hope for the future. Always an avid moviegoer my excitement at the upcoming attractions was tempered, during the dark years of my greatest sensitivities, by an inadvertent question that would always pop up – ‘I wonder if I’ll be around to see that one? ' That question rarely springs to mind anymore.
The desert has been no panacea, however. The stresses produced by the heat of summer are tremendous. As the heat increases I am bothered by a strange case of dry mouth that is oddly enough exacerbated not reduced by drinking fluids. The frequent windstorms exacerbate my allergies. Shade is sparse and often inadequate when found. As I spend more time in the desert I have become less tolerant of the vegetation. My inability to tolerate the more pungent plants (junipers, sagebrush, pine) that dominate the upper desert and mountain regions hampers me from escaping the scorching heat of summer. An increasing sensitivity to the toxins blown in from the Salton Sea during its frequent algal blooms has turned large parts of the desert of southern California off-limits to me. Interestingly, however, as I have become less and less tolerant of the desert I have become more and more tolerant of the city. Most importantly my sensitivity to fertilizers has receded greatly.
What could account for my improved health? The clean and relatively mold free environment is one factor as is increased rest and an improved diet. Shortly before I left San Jose I was finally able, due to help from various quarters, to finally see Dr. Cheney. One of the tests done – a heavy metal stools test – indicated that I had, despite my lack of amalgams, levels of mercury expected in someone with a mouth full of amalgams. Where had this mercury come from? I had only been regularly exposed to one source of mercury – fish. Fish had come to play a major role in my diet. Not only was it a clean (I thought) and cheap source of protein, but it also had the distinct advantage, given my living situation, of being readily available in cans. Plus it was tasty. By the end of 2001 I was ingesting large amounts of tuna, salmon, herrings, kipper and sardines. Several months after moving to San Diego and quitting fish my hands and feet stopped tingling and constantly falling asleep. Two years later this problem happens not at all.
Eating more vegetables has been very helpful as has increased rest and a set of treatments (aloe vera, COQ10, antioxidants, stretching exercises, coffee enemas, etc.) that I am able to tolerate, if at only at low levels. My ability to exercise has remained stable; I can walk for about 30 minutes a day 4 or 5 times a week without negative effects. In fact the effects are positive. My time with Dr. Cheney unfortunately reaped few other dividends. We made no progress on my bodies unwillingness to tolerate good health and his loquaciousness along with his extremely high fees drove me to bankruptcy - something I was teetering on anyway. Bankruptcy, by the way, was maybe the best single action I've taken the in past 10 years.
My hope for the future is tempered by the recognition that small and seemingly innocent events can have untoward consequences. A bottle of shampoo that spilled onto the sound absorbing materials on the floor of the truck left me nauseous and gasping for breathe even after short trips. Only after considerable money and time was spent on several exhaust system examinations, some exhaust system work and an electrical system examination did I uncover the cause of the problem. Because this took place during winter I was forced to sleep outside of the truck in my sister’s backyard close, once again, to the dreaded wet soil. The situation really turned ugly when the work on an addition to the house pushed me from the relative comfort of the back yard back into the allergy and mold ridden world of the chaparral. My sensitivities erupted and my energy and health plummeted. The truck, my refuge from the cold weather, was unavailable and I was exposed, once again, to vagaries of the weather. The now toxic house made the clothes dryer/washer unavailable and I was forced to employ the perfume ridden appliances found in the local laundromat. The problem with the truck was finally resolved when it caught fire and it and most of my possessions burned to the ground while I was camping out in the desert.
This set of events while unusual in their synchronicity and intensity are not unusual in their type at all. Too often, despite some return of my health, my life too often consists of a reaction to one crisis after another, whether it is because of bad air from the Salton Sea, a bad reaction to a treatment, a wildfire, some sort of leak in the car, a desert rain that turns the plants pungent, etc. In short I am too often on the run.
I see no silver lining from having CFS; having it has not been a path to self-knowledge, it has brought me no great insights, I don't feel I am stronger or better off from having had it. Nothing it has brought could even remotely replace the lost opportunities it ate up. If I looked closely I could say I feel more empathy for others and have more patience and understand how little one's wishes count in the great scheme of things. These are rather ephemeral, however. Its difficult to get outside of yourself when your body is in revolt. In many ways I have found CFS to be a consummately anti-spiritual disease.
This does not mean my life has not been without its own richness. I have had many enjoyments along the way. I love my reading, my music and when I am well enough nature. Life is indeed bigger than any one disease. It has, however, been much, much harder than I would have ever dreamed. Never could I have imagined the sheer difficulty of it all. The day to day peaks and valleys of mental clarity and energy I still experience are unreal in their magnitude. The flow of strength one expects from youth stopped for me around age 19 – that river slowed to a trickle. I worked to gain what nourishment I could from it and I got quite a bit.
For whatever reason the last twenty-five years have been more spent dealing with the difficulties imposed by CFS than in pursuing larger goals. I’ve learned something about the essential evanescence of ones personal goals in the great scheme of things. I thought, after all, I had a lot to offer; I was pretty smart, I was disciplined, I was compassionate, I wasn’t greedy, I was socially concerned, I was pretty good with people, I was interested in learning and had a bent for the spiritual. In short I thought I was well set up not only to have a high quality life but to really contribute something. Instead of pursuing those avenues, however, I basically struggled to get through – to make it from one day to the next, to keep my head up and gain whatever satisfaction I could from whatever circumstances I found myself in. In the end its been more about endurance than accomplishment.
Except for the unfortunate timing of my illness – when no one knew anything about it – and its duration, I have, however, had a much easier time of it than most. Throughout I have been a high functioning person with CFIDS. I was lucky enough to stumble into a very powerful ‘self-improvement’ course very early on in my disease that for whatever reason provided substantial help at an opportune time. I have been able to go to school or work part-time or even both through most of my illness. I never experienced the extremes of physical devastation so evocatively described by Lauren Hillebrandt, Floyd Skloot, Dorothy Walls, Rik Carlson and others. I have been lucky in having a family that has been supportive throughout. My father has provided me with financial support that I have desperately needed on and off for many years.
In darker moments I turn to some of the things I heard in EST. During my work with them so long ago they suggested that the world is perfect the way it is. At first this seems gravely wrong. How could this be perfect? How could this be the way its supposed to be? This sure doesn't look like I thought it would. But this is how it turned out and therefore this is the way, for whatever reason, its supposed to go. This always brings relief. It give some dignity to the situation and reduces the sometimes frenzied struggle to deny it. That struggle may in the end be the most difficult part of dealing with CFS. If this is the way its supposed to be why struggle with it? Why not just live with it? It allows one to find worth where one would not think to find it.
Cort 5/10/04
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