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struggle: Searching for hope
By John Moir
It began in the summer of 1992 when my wife, Ellen, became ill with a mysterious flu
bug. As the days
shortened into autumn and she couldnít shake the persistent headache, exhaustion and aching joints, it
became clear this strange, unseasonable illness was serious. We began seeing doctors, searching for an
It took us three more years before we finally put a name to her illness: fibromyalgia.
But even in
those first, bewildering weeks, we felt the foundations of our life shifting. We had begun a journey of
endurance, where progress seemed a mirage and hope was the pillar holding up our world.
Several months before her fibromyalgia struck, Ellen had spent three weeks in bed with
pox. Hollow-eyed, she dragged herself back to her demanding job as a teacher trainer, passing the springtime
in a futile effort to catch up. When the workload eased off in summer, she pushed herself at the gym to
get back in shape.
The workouts were the final straw. On a sun-drenched day in August, her body succumbed
Many days Ellen was too weak to do much more than lie in bed and sleep.
At first, she was given antibiotics for a possible sinus infection. Then an infectious
diagnosed viral meningitis. Several weeks passed with no improvement. Alarmed, doctors started looking
for more serious problems such as brain tumors, lupus or multiple sclerosis. Nothing showed up as we tiptoed
past these dark chasms.
Finally, the doctors decided it was Lyme disease. This tick-borne illness caused symptoms
Ellenís and was treatable with antibiotics.
But a month of antibiotics did nothing. Too sick to work, Ellen took a medical leave
from her teaching
job. I was exhausted from working full time and trying to care for Ellen and our son, Jeff.
At times, Ellen would simply burst into tears, saying, "This is the hardest thing Iíve
Uncertain how to help, I listened to those searing words, realizing this was also the hardest thing I
had ever faced.
At Thanksgiving, I couldnít bring myself to say the usual blessing of thanks at the
dinner table. Afterward,
I broke the turkey wishbone with Jeff, wishing for Ellenís health to return.
Still thinking Ellen had Lyme disease, a physician agreed to prescribe intravenous antibiotics,
can sometimes cure that illness. We had hope.
The next Thursday night, a nurse arrived at our house and inserted a thin, six-inch
into Ellenís arm. Twice a day, Ellen spent an hour dripping antibiotics into her body.
A month passed with no change. The intravenous antibiotics had cost nearly $5,000 and
Ellen was no
We returned to our family doctor and settled on another diagnosis: chronic fatigue
With all other serious diseases eliminated, it was the only thing left.
But traditional medicine offered little help for chronic fatigue syndrome. Some doctors
believe it was really an illness. We began to wander in a medical quagmire, searching the world of alternative
medicine for a cure.
Ellen saw homeopaths, chiropractors, acupuncturists and osteopaths. She tried special
herbs and meditation. Frequently the treatments were mutually exclusive so we had to decide which seemed
As time passed, Ellen began ever so slowly to improve. Eventually, she was well enough
to return to
a modified schedule at work.
Meanwhile, the medical bills piled up. Because our insurance company didnít recognize
syndrome as an illness, they refused to pay thousands of dollars of medical expenses. I wrote letters.
I argued. And I lost.
At glacial speed, Ellen continued to improve. One day she visited a rheumatologist who
with fibromyalgia, which is so similar to chronic fatigue syndrome that it may be a variation of the same
There is still no cure, and overdoing it always carries the threat of a relapse. The
lesson to be
learned over and over is how to adjust to living with limitations. These limitations affect Ellen, they
affect me, and they affect our whole family.
But there is a certain comfort in knowing what we face. We can mourn what we have lost
and be grateful
for what we have.
Once again, we say the blessing at the Thanksgiving table. Once again, we have hope.
John and Ellen Moir live in Santa Cruz, Calif. John is author of Just in Case
Ė Disaster Preparedness
and Emergency Self Help (Chronicle Books) and the just completed novel Shutterbug.