"At 8:15 AM on February 26, 1985, I suddenly got a flu-like illness that has not yet gone away.
Well, maybe it was not so sudden. I had two warning dreams the month before. One was a billboard with flashing lights all around, which said,The other was an image of a house that looked great from the outside but the inside was completely burned out. I acknowledged the meaning of each dream but told myself I couldn't slow down until I got my sons through high school (two more years). My pace had been inhuman. In addition to raising two teen-aged boys alone, in the midst of their rebellious crises, I had an academic career of teaching, research and administration; I had religious and community commitments; and I played hard, too.
"Your mind is completely degenerated and it will take at least 8 hours' sleep a night for a long time, with only quilting in between, to regenerate it."
I know the exact time I got sick because I went to work as usual, arriving for an 8 o'clock meeting. At 8:15 I suddenly felt so bad that I needed to get someone to take me home. My policy had always been to give a virus a day - a day of rest - and then get up again. I thought it was quite generous and it had always worked before. For two months I struggled and managed to function without canceling any commitments, but I would often go home exhausted by mid-afternoon and come back for a late afternoon or evening commitment. One evening I tried to prepare a report for a committee meeting but my brain would not work. My head felt clouded; my mind was blank. Finally, I had to cancel some commitments. I gave myself the next four days to rest. The next day I got a call from my astute physician with a diagnosis: cytomegalovirus (CMV). Her instructions were to go to bed until the fever went away.
I continued to work by telephone and by sending my son between home and office with written material. Since I had already been sick 2 months and was told it usually lasted 3 - 6 months, I figured I would be back at work in a couple of weeks. A month went by and the fever had not gone away, so I consulted the CMV expert at the Centers for Disease Control (CDC). When I told him how I had been functioning from bed, he said, "that's not resting". His prescription was more specific, "get some distance from all the stresses in your life, work, teenagers, etc, and stay in bed." So, my sons went to spend the summer with their father and I took the whole summer off from work.
But at the end of the summer, I still had the fever (never higher than 100 F) and the whole complex of symptoms. Individually the symptoms are not serious, except the profound exhaustion, but collectively and over a long time, they take their toll. The best way to describe it is like the first day of a flu when everything hurts and you just want to cover up with a blanket and stay in bed. The syndrome has several different names - myasthenia encephalomyelitis (used in Europe), chronic fatigue syndrome (in the US medical literature) and chronic fatigue and immune dysfunction syndrome (used by patient groups in the US).
At this point I must admit that by training I am an immunologist, one who studies the immune system. Also, for many years I had been participating in discussions and amateur experimentation in psychic healing. With all that background, curing me of a simple virus should have been a trivial problem for our powerful healing group. We had been after bigger game, curing cancer, bringing a man out of a coma, etc. I sought help from Jesus, the great healer, in the New Testament and concluded that I did not have enough faith, but I did not know how or where to get more.
It was embarrassing for an immunologist to find her own immune system malfunctioning. I began to study the syndrome in collaboration with scientists at the CDC and practicing physicians. In short, I pursued answers at all levels as vigorously as I could.
In the meantime, life went on. Fall came, my sons moved back and agreed to do all the housework, grocery shopping and cooking. I tried to return to work, but could only manage 3 hours twice a week. One year passed in which I gradually gave up my active life. As my sons entered their senior year of high school, they appeared to be ready to leave home at its completion. With their support and the help of a therapist, I made some decisions. The first was the most difficult: close my research laboratory. The others followed: sell the house and activate my disability income insurance. For the next nine months, my two sons and I enjoyed our time together as we prepared to dismantle the household.
I am now beginning to understand what faith is and how to get it. A wise woman (Janet Ferguson) once told me, "it's not necessary to plan so far ahead. It is better to just let it unfold." For a long time I struggled against my need to accept my condition because I felt that giving up the fight meant I would never get well. My sister provided the answer to this dilemma. What one must do is accurately assess their current reality and live within it, one day at a time, while maintaining a clear image of a desired future reality. The process of attaining that desired future reality, or something better, will take care of itself at the right time, in the best way. Faith is trusting enough to "just let it unfold."
What is chronic fatigue syndrome? What can be done about it?Chronic fatigue syndrome (also called myalgic encephalomyelitis in the United Kingdom and chronic fatigue and immune dysfunction syndrome by patient groups) is basically a diagnosis of exclusion. One must rule out other, treatable conditions which may be causing the symptoms. However, a recognizable pattern has emerged and is well-described in an article in the Annals of Internal Medicine (March, 1988) by Gary Holmes, et al. No one has been able to establish any one virus as the cause of this illness, although Epstein Barr virus (EBV), cytomegalovirus (CMV), and Human Herpesvirus-6 (HHV-6) are often associated.
Current thought is that there is some abnormality in the immune system because these patients seem to be stuck in an early stage of response to one of these viruses, with little or no evidence of the continued presence of the infectious virus. The symptoms are probably caused by the mediators of the immune response itself, not the virus directly. There may be a yet undiscovered agent, presumably a new virus, which activates other viruses and causes the abnormalities in immune system controls.
Like the other Herpes viruses, EBV and CMV infect most people early in life. Though the original infection is cleared, the person remains latently infected by viral DNA being carried by otherwise normal cells. A normal immune system keeps these latent viruses under control except for occasional reactivations which are soon cleared. One often finds normal individuals with high CMV or EBV titers. Presumably, the antibody is being made to counter a subclinical reactivation of the virus.
In persons with disturbed immune systems, such as AIDS patients, transplant patients who receive immunosuppressive drugs to prevent the rejection of the transplant, and cancer patients receiving chemotherapy, either of these viruses can be disastrous, often leading to death. However, these same viruses in CFS patients are associated with a non-lethal chronic illness. This indicates that the immune systems of CFS patients are, at leaast partially, keeping the viruses under control. The abnormalities indicate that there is an over-active immune system which is making an inappropriate, futile response. One must be cautious in experimental treatment regimes not to further upset this delicate balance.
Besides the virus infection, other factors involved as triggers of CFS include stress, environmental agents (especially phorbol esters in oil paint solvents) and a genetic predispostion. There is currently no cure for this illness. In some patients it gradually goes away after a year or two. Treatment involves management of the various symptoms and lifestyle adjustments consistent with lowered stress and activity levels. I have taken a holistic approach, using everything I could find at medical, psychological and spiritual levels. I am unwilling to do much risky medical intervention because I have a firm belief in the immune system and I know that mine is basically functioning. It could get worse!! I have tried a few drugs. Neither aspirin, tylenol, nor ibuprofen reduced the fever or aches. I use Midrin when the headache keeps me from sleeping but I find that avoiding sunlight largely prevents the headache from getting out of control. I wear a widebrimmed hat and the wrap-around sun glasses they give to cataract patients. I have found that elavil helps with the sleep problems, however, I must take very small doses. I cut each pill into about 8 pieces and take a fraction every three or four days. I tried indocin, but the dose which helped with my joint inflammation was high enough to cause a severe headache which is not relieved by midrin.
I take a number of food supplements - vitamin C (3 - 6 g/day), calcium, magnesium and zinc, iron, multi (B's, etc), lysine (to control fever blisters), and cod liver oil (controls joint aches much better than indocin). I use herbal teas, mostly for calming me (sleepytime, chamomile, and tanchi, a local herb). An herb doctor gave me a tropical herb called billy web bark and I took it in the prescribed dose, but I was bouncing off the walls. At 3 AM I thought I could run the length of the island and then set my hammock on fire. Later I found out it has caffeine in it, which may have accounted for my speedy reaction. I tried reducing the dose and even got into an herbal "upper/downer" routine (some physicians prescribe such a combination of Prozac and Xanax.), but I found that routine very uncomfortable and counterproductive to the work I have done to address the (cont. next page) life style issues that I feel are a factor in my illness.
I became very deconditioned due to a nearly complete reduction of activity in my life. Any type of weight-bearing exercise was impossible because of the muscle weakness of my legs. I tried swimming but the cold water made my joints and muscles ache even more. The solution came when I found a warm water (greater than 85 F) swimming pool for arthritis patients. I have a routine using swimming strokes and some yoga exercise adapted to use while floating on my back that stretches and exercises all muscle groups. When I cannot swim, to do limited yoga exercises to ease the muscles.
At the psychological and spiritual levels, I have used meditation and dream analysis and learned a lot about myself in the process. I am highly sensitive to over-stimulation, especially by social situations. I cannot tolerate the crosstalk that occurs with more than three people; I am confused by rapid changes of subjects; and, worst of all, I do not know that I am in trouble until it is too late. In the worst of times, I have taken as long as 6 weeks to recover from such an event. I have found no solution to this problem except to live a reclusive life, avoiding the triggering situations.
Hormonal EffectsWhen I first got sick, my illness was diagnosed as an acute cytomegalovirus (CMV) mononucleosis and I was ordered to stay in bed until the fever went away. The first day I had without fever I felt much better and got up to resume my life. Within a day or two the fever and all my other symptoms had come back. About a month later the same thing happened. The third time it happened I began to see the pattern. Around the 14th day of my menstrual cycle (counting the first day of menstruation as day 1), I was experiencing a day or two without fever in which I was certain I was getting well. However, on the 17th day, I felt as bad as ever and my fever remained at its highest until my next menstruation.
I consulted an endocrinologist because I thought some hormonal abnormality was causing my illness. We did a little study on myself and another patient. We took blood and urine samples at several points in our cycles and had assays run for several hormones. Both of us had been menstruating regularly, so it was not surprising that all results fell in the normal range. We concluded there was no hormonal abnormality as such, but that something in the normal sequence makes the symptoms worse in the phase following ovulation.
At the present time I am battling with what I call the adrenaline effect. I don't know if it is truly adrenaline, but I find I am highly sensitive to stimulation, whether it is social, light or sound. I get "revved" up by minimal conversations and the first thing to go is my judgement. I lose touch with how I am feeling and it takes a long time to settle down. Initially I present an energetic and probably hyperactive appearance; then I begin to fall apart, stuttering and stammering (which I do not hear); and finally I become incapable of responding at all. My current focus is to become more aware of my needs at the time. My explanation is that I over-produce adrenaline in response to minimal stimulation and the normal shut off signal doesn't work so it persists for a longer time than normal. One of my doctors says, "Adrenaline is very dangerous in this illness."
It is now becoming clear that the immune system is intimately connected both with the brain and the endocrine system. CFS presents a complicated picture involving all three, emphasizing how little we really know. Research is desperately needed!
THINGS THAT HELP ME
Headache midrin, iron
Insomnia elavil, sleepytime, tanchi, chamomile tea
Joint aches cod liver oil, calcium
Muscle aches warm water, vitamin C
Deconditioning swimming in warm water
Congestion vitamin C
Fever blisters lysine
Skin infections echinacea, zinc
Energy multi-vitamins, spirulina
THINGS I AVOID
What Every CFS Patient Needs to Know About the Immune Response
The objective of the immune response is to remove foreign agents, called antigens, from the human body. Antigens may include destructive organisms such as viruses, bacteria, yeasts, molds, or parasites; or innocuous substances such as pollen, dust, or animal dander. Antigens enter the body via the mucous membranes of nose, mouth, lungs, esophagus, intestines, vagina, urethra, or rectum, via direct entrance into the blood, or via a break in the skin.
When blood is drawn and allowed to clot, it separates into two parts, the clot which contains the cells, and the liquid portion called serum, which contains the molecules, including the antibodies. Serological tests (sometimes just called serology) are those which test for antibodies in the serum.
Antibodies provide the specific functions of the immune response. Specificity means that if one is immune to one particular virus that does not necessarily confer immunity to a different virus. It is accomplished by making antibodies which will combine with that particular virus and no other.
The combination between an antibody and the antigen to which it is specific, called an immune complex, is then engulfed by white blood cells and cleared from the blood. This is the basic mechanism of removal of antigens found outside of cells. However, some organisms, such as viruses, parasites, and some bacteria, invade cells and remain there, or even reproduce inside the cell, protected from the antibodies in the circulation. Another mechanism involving T lymphocytes is required to destroy these infected cells.
Antibody also goes by the more technical name of immunoglobulin. Different classes of immunoglobulin are found in different regions of the body or perform different general functions (i.e. IgM, IgG, IgA, IgD, IgE). Antibodies which specifically combine with a particular antigen may be in any one or more of these classes. Because of their different functions, a large amount of specific antibody in one or another of the Ig classes has different meanings. For example, IgM is found only early in an active infection. Therefore, if a high specific anti-Epstein Barr virus (EBV) antibody titer (measurement of antibody) is found in the IgM class, it usually means that a current infection is underway. Antibodies of the IgG class provide for long term immunity and may be found long after the original infection has been cleared. Because antibody is much easier to detect than the organisms themselves, these tests are used as an indirect indicator of infection. Thus, most diagnosis is based upon the detection of antibody specifically directed against the antigen in question. To confirm that an active infection is in process it is necessary to actually grow the virus (or other organism) in laboratory culture vessels. This is much more time-consuming and, therefore, too expensive for routine use.
The cells of the immune system are lymphocytes. Like antibodies, lymphocytes are specific to a particular antigen. Lymphocytes have three basic functions, the manufacture of antibodies, the destruction of infected or abnormal cells, and the control of the immune system.
The lymphocytes which produce antibody are called B cells (or B lymphocytes). Each B cell produces only one class of antibody with one specificity and displays that particular antibody molecule on its surface. An interaction of the surface antibody on a particular B cell with the antigen for which it is specific, such as EBV, triggers that particular B cell to reproduce itself into many more cells making the same anti-EBV antibody molecule, which results in a much larger amount of circulating antibody. This would be detected in a serological test as a high titer of specific anti-EBV antibody.
The lymphocytes that are responsible for the destruction of infected or abnormal (such as malignant) cells are T lymphocytes. They specificially destroy the virus- infected cells and are responsible for the major immune response against viruses, which are often harbored inside infected cells and protected from the action of circulating antibodies.
The immune response is tremendously complicated because of the need for many controls of this potentially destructive system. An immune response that is necessary to resist an infection becomes a liability if it goes on beyond the time it is needed. The destructive action against the foreign invader can be turned against the normal tissues. It is necessary for the immune system to distinguish between the antigens of the invader and the molecules of the normal tissues. Other T lymphocytes are involved in these controls. Autoimmune diseases result from abnormalities in these controls when the immune system reacts against molecules of normal tissues as if they were foreign antigens. Allergies result from inappropriate immune (cont. next page) responses to nondestructive foreign entities such as pollen. Either allergy or autoimmunity may be involved in CFS.
Communication among the cells of the immune response is accomplished by molecules which carry messages between cells, called lymphokines. Some examples of lymphokines are interferons (alpha-IFN, beta-IFN and gamma-IFN) and interleukins (IL-1, IL-2... IL-7). It is now known that the symptoms of a viral infection - headache, fever, exhaustion, muscle aches, joint aches, etc - are caused by lymphokines produced in the immune response to the virus and not by the virus itself. It is likely that the symptoms of CFS are caused by lymphokines produced in an inappropriate immune response.
GlossaryAntibody = Immunoglobulin - a molecule produced as a part of the immune response which will combine specifically with foreign invaders such as viruses.
Antigen - a substance that is defined as foreign by an immune system which then responds by the production of specific antibody and lymphocytes.
B lymphocyte = B cell - a white blood cell type which produces antibody during the immune response.
Blood - the fluid of the active circulation system which is pumped by the heart and contains serum and cells.
Chronic fatigue syndrome - a complex of symptoms including fever, muscle and joint aches, weakness, exhaustion, neurological abnormalities, etc, with a sudden onset that is often associated with anti-viral antibody titers.
Cell - the basic unit of life containing the complete genetic information and metabolic machinery required for life functions.
Cross-reaction - the reaction of one antibody with more than one antigen, that is, the breakdown of specificity.
Cytomegalovirus - a herpesvirus associated with birth defects, infectious mononulcleosis and CFS.
Cytotoxic T lymphocyte = Tc cell - white blood cells which respond specifically to infected or malignant cells and destroy them.
Epstein Barr virus = EBV - a herpesvirus which causes infectious mononucleosis and is associated with Burkitt's lymphoma, esophageal carcinoma, and CFS.
Immune complex = antigen-antibody complex - a combination of specific antibody with antigen against which it is directed.
Immune response - the production of specific antibody and specific lymphocytes against a foreign antigen.
Immunoglobulin = antibody - a molecule produced as a part of the immune response which will combine specifically with foreign invaders such as viruses.
Interferon - a class of lymphokines which will inhibit the growth of viruses in culture and in experimental animals.
Interleukin - a class of lymphokines which provide communication between lymphocytes in the immune response.
Lymph - the fluid of the passive circulation system which drains the tissues.
Lymphocyte - a class of white blood cell which is responsible for the specific aspects of the immune response.
Lymphokine - a class of molecules which are produced by white blood cells and have a variety of specific effects on the same and/or other white blood cells.
Serum - the liquid portion of blood which contains the molecules such as antibody.
Specificity - the limitation of a reaction to a narrow range of interacting substances. For example, antibodies react only with the antigen against which they are directed.
T helper lymphocyte = Th cell - a class of lymphocyte that acts as a positive control element in the immune response and is required for the success of most immune responses.
T suppressor lymphocyte = Ts cell - a class of lymphocyte that acts as a negative control element in the immune response and is used to prevent autoimmune (anti-self) reactions.
T cell receptor - the molecule on the surface of T lymphocytes which determines the specificity of that particular cell.
White blood cells - the cells of the blood that are involved in both the specific and the general activities of the immune response, including lymphocytes, macrophages, monocytes, eosinophils, basophils, neutrophils, etc.
CFS is a Feminist IssueThese profound effects have reduced me from a productive college professor to a reclusive semi-invalid. Because CFS affects so many women in the prime of their lives, it is a feminist issue. It is a potential danger for women and should be recognized as such. Prevention advice is difficult when it is not clear what causes CFS, but some precautions can be taken. Most important, one should take all viruses seriously and rest until recovery is complete. A healthy diet low in fat, salt, chemical preservatives, and refined carbohydrates; plenty of exercise and relaxation; plenty of sleep and reasonable stress management are all sensible life style measures. One should avoid exposure to phorbol esters or other toxic substances by wearing rubber gloves and suitable clothing.
Since stress is clearly an important factor in the initiation of CFS, we must consider the sources of stress in our lives. Women have many basic life choices to make and are under pressure to accomplish more than is humanly possible in the balancing of our traditional care-taking roles with our vocations. Delaying child-bearing and reducing family size are mechanisms often used.
We must set goals which are reasonable and distinguish our own goals from those set for us by the "patriarchy". For example, it is not necessary to define ourselves by reproduction. That is a patriarchal definition much internalized by women.
Competition may be especially stressful for women because we are conditioned to cooperate, not compete. We can compete only under conditions where we maintain our integrity, that is, when no real harm to others results and the goal that is reached has real value to us. Prestige and power are values from the patriarchy which may not be our own. Careful selection of work settings may reduce stress and provide a more satisfying life. A feminist model of biomedical research is demonstrated by the search for the gene causing Huntington's Disease. Instead of the fiercely competitive, secretive race that usually characterizes such research, a cooperative venture with freely shared information has been organized (Science, February 9, 1990). A woman may value participation in such efficient, shared research more than the prestige of being the one who wins a hotly contested race.
We must live within our own limits, but to do so requires that we know what those limits are, and sometimes that is hard to judge. To maintain healthy and satisfying lives, women need to care for themselves and to ask, "Just what do I expect of myself? Is it reasonable?" (this section written along with Ruth G. Doell, Ph.D.)
Is CFS Contagious?
I am often asked if CFS is contagious. I never know quite how to answer this question. The problem, of course, is that we don't know what causes CFS. If we had a detailed understanding of how one gets this illness, we would be able to say exactly how it might be spread from one person to another. The best we can do is analyze the epidemiological observations of recent years.
We might look at some infectious diseases in which the causative agent is known and how they spread. The mode of spread of an infectious agent depends upon the nature of the agent, how well it survives outside of a human body. Highly contagious viruses such as those which cause colds and flus are resistant to drying, warm or cold temperatures and other environmental insults. They survive on hankerchiefs, door knobs, silverware, drinking glasses, and pass easily from one person to the next.
In contrast, organisms which cause venereal diseases, such as AIDS, do not survive drying and must be passed between persons within bodily fluids. These diseases are easy to trace by following the patient's history of sexual partners or blood transfusions.
In Belize we have two other serious diseases with different modes of transmission. Malaria is caused by a parasite that survives only in blood and is passed from one person to the next via the injection of a mosquito vector. This parasite produces waves of huge numbers of parasites in the blood, enough to make the probability high that a mosquito might pick up a parasite in a small amount ot blood.
In contrast, the bacterium which causes cholera survives in water and is carried in seafood within that water. The bacterium is found in feces of infected persons. If feces get into the drinking water systems, the bacterium survives to infect persons drinking such untreated water. However, this particular bacterium is quite sensitive to high temperature, soap and chemicals. It is killed by boiling water for five minutes, by cooking food, or by exposure to soap or chlorox.
While there are viruses associated with CFS, none has yet been shown to cause it. One can make the case for an underlying virus activating these associated viruses since most of them are Herpesviruses and known to infect most people and to be easily activated. Recent work from the Wistar Institute by Dr. DeFreitas reports antibodies that cross-react with a retrovirus are found in a high proportion of CFS patients and in some of their household contacts, but not in the general population. It is suggested that this retrovirus represents the underlying cause for CFS, but there is no further evidence for this assertion to date.
The epidemiology of CFS does not resemble any of the above examples. In one of only a few reported epidemics, there were several cases in one symphony orchestra, but they were not in persons who sat next to each other, or who socialized with each other. This suggests a common environmental exposure, or common stress conditions, rather than simply the spread of an infectious agent.
While there are some reports of cases within one family, they are not in sexual partners, but are genetically related, such as a mother and daughter. Again, this could indicate similar genetics, environmental exposure, or stresses combined with a possible causative agent. There is no evidence of sexual transmission of this illness, nor of casual transmission.
My own feeling is that there are a number of factors that must be in place for CFS to take hold of a person's immune system. These may include an underlying virus and/or a triggering virus, environmental insults, hormonal conditions, high levels of stress, and a genetic component such as particular tissue antigens (HLA antigens - like to blood groups) that combine with particular viruses to set up the conditions required for this illness to become manifest.
If this is the case, several persons may be exposed to the same virus, but if they do not have the genetics, environmental, hormonal or stress conditions at the same time, they clear the virus normally. The epidemiology would not reflect the spread of the virus, but the totality of the conditions required for this illness.
Compared with the acknowledged sexual transmission of AIDS and the known mechanisms of colds, flu, cholera and malaria, CFS appears not to be contagious at all.
Indeed, one could explain CFS with a defect in the immune system itself, one in which the control mechanisms go awry and fail to turn off the immune response once a mild virus insult has been taken care of. The virus would only be found in the very first few days of the illness, but antibody against that virus continues to be produced for years in CFS patients. This represents the immune system's failure to shut down rather than the continued presence of the virus. For 2 years, my urine and blood was cultured for CMV unsuccessfully at the Centers for Disease Control. While I continued to make high levels of anti-CMV antibody, never was there any evidence that I had active virus in my system.
This evidence convinced me that I was not contagious. When people ask me, I explain that there is a small risk that there may be an unknown virus which , if all conditions are right, could cause CFS. I feel that risk is very small, that the problem is largely a metabolic one involving the controls of the immune system rather than an infectious process.
Update (1991)I wrote the previous columns between 1987 and 1989. Three more years have gone by and I am still making copies to give to people. It is a defense against having to talk about my illness to people who ask many questions. Sometimes I give it to people I want to know me and, therefore, must understand my reality. I get tired of telling the same story over and over again and would rather spend my limited social energy on subjects of more interest to me.
During the intervening three years I have refined my coping mechanisms, resolved my financial difficulties by getting Social Security disability, completely given up my scientific career, and developed a satisfying life consistent with my limitations.
I have found a partial treatment for the "adrenaline effect", at least, the sleep disturbance that goes with it. A friend suggested that I try beta-blockers, because if indeed adrenaline was causing this effect, blocking the receptor for adrenaline may help. So, in the midst of a family reunion, when I was over-stimulated, I tried propanalol (enderol). It did help. Within an hour of taking one 10 mg tablet, I began to feel sleepy. I don't use it much, only when I come up against a situation that I cannot avoid. While elavil does help some with the other sleep disturbance, the one not associated with adrenaline, if I take too much, I get very depressed. Also, even the tiny doses that I take have the side effect of weight gain, which is counter-productive for me. I must keep my weight as low as possible because any extra pounds are a great burden for my already weakened legs and low energy level. It takes constant vigilance!
Getting Social Security disability required persistence and a good attorney. The process was extremely degrading and frustrating. I was determined to get benefits due me on my own, but I was not successful until I gave up and hired an attorney. In retrospect, I feel I wasted a lot of my own energy and took longer than necessary (3 years) by trying to do it myself. My advice to anyone else is to hire an attorney as soon as possible and to look for someone who specializes in Social Security disability cases.
One of the things I did to help with my Social Security case was to have neuro-psych testing done. I believe it did strengthen my case, but the most important effect was upon my acceptance of my illness. While I had been trying to understand the mental effects of my illness since nearly the beginning, I did not truly accept their reality until I saw the objective test results. The conclusion was "that "''the results confirm her subjective complaints''". I showed a high IQ, but low functioning in certain areas, some in the mildly retarded range. One might expect this to be depressing, but it had quite the opposite effect upon me. I was greatly relieved. I was afraid I had been imagining the whole thing.
I accepted the fact that I would never be able to do detailed science again and resigned my tenured faculty position. I went through a process of burying and cremating the remains of my scientific career. I packed up all my scientific journals of library quality into boxes (coffins) and mailed them to Clark Atlanta University for their Science Library. I burned (cremated) all the other information I had brought to Caye Caulker so I could do theoretical immunology research here. I now have a nice completed feeling about that phase of my life. I set out to make a contribution and I did, maybe not as much as my over-ambitious dreams, but there are a number of things of which I can be proud. At the top of the list are the wonderful students who graduated and are now out there in the scientific world making their own contributions.
My highs and lows began to even out as I quit testing the limits and learned to live within them. I left the phase of being focused on my illness, waiting for it to go away so I could go back to living. I started looking around to see what I could do within my limitations. There are several things in Belize that interest me, the extensive and ground-breaking environmental work, the distinctive cultural diversity and Friends activities. Since I can use my computer while lying in my hammock and I enjoy doing desk-top publishing, it was suggested to me that the Belize Audubon Society needed help with their quarterly newsletter. I volunteered to do the lay-out on my computer and am now starting my third year in this effort. Other desk-top publishing and writing projects have presented themselves. It gives me a way to be involved without too much social interaction. I do much better on paper than in person.
The best part is that I seem to be very gradually gaining on it. I feel better and seem to have more energy. My limitations have become habitual enough that I am not tempted to violate my rules very often. But if I do get too over-ambitious, my euphoria is brought up short by a reality message of some sort.
I make quilts, do some of my own writing as the spirit moves me and play music. I manage to travel within Belize to see the physical beauty and experience the fascinating cultures. It is an extremely satisfying life!Judy Lumb