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Finding ways to cope with severe
By Rebecca Becker-Bean
In 1992, while I was a manager with a large corporation, I contracted a
flu-like illness. The congestion and "flu" lifted after a week, but a profound
weakness remained. I attempted to return to work four times, each time finding
that I could barely walk from the parking lot to the office and could not
properly read words on the computer screen. A knowledgeable doctor diagnosed me
a year later with CFIDS; in 1996 I was diagnosed with fibromyalgia as well.
I was expecting to deal with fatigue and exhaustion. But I was totally
unprepared for the wide array of neurological and immune system problems:
migraine headaches, muscle and joint pain, severe yeast (fungal) overgrowth,
vertigo, extreme sound sensitivity and much more.
I continued to push myself, and I grew weaker and sicker. By 1996, I was
bedridden and unable to feed or bathe myself. I could not read, write, watch TV
or speak more than a few whispered sentences. I felt isolated and longed to know
if there was someone else "out there" who was bedridden and barely functional,
Gradually, I have learned to understand my body and its limitations. Though I
am still severely ill, I have regained considerable mental clarity and some arm
and hand mobility. I've gradually adjusted and learned some coping strategies,
which fall into five categories.
For four years I laid flat on my back in bed. This
was not good for my cardiovascular system, which needed the "exercise" of moving
blood upward through my veins. But I was too weak to sit up or move myself into
a chair recliner at my bedside.
During a hospital stay, I began gradually raising the head of the bed with
the adjustable controls. Soon I was sitting up and experiencing less headache
pain and markedly increased mental clarity. The physical therapist explained
that when the head is below the 30-degree angle, the brain sends signals to
relax and sleep but when above that angle, it sends messages of alertness and
wakefulness. I now have a hospital bed in my home and can enjoy its benefits
Those who are bed-bound also can become vulnerable to bedsores. My doctor
prescribed an air mattress to address this potential problem. The air mattress
is attached to a small, silent motor mounted under the bed, which inflates and
deflates air cells as the body shifts positions.
Anger is the emotion I struggle with most
frequently. It often flares unexpectedly and usually against those I care about
the most. I cope by first reminding myself that much of the anger is fueled by
physiological problems. If I find myself getting angry because of a small
injustice, I force myself to mentally change the subject. Finally, I've found
that forgiveness is healing - and I ask forgiveness often for my own
I also struggle with fear and worry. Again, I break the cycle of obsessive
thoughts by focusing on other things. Looking forward to something or setting
small goals for myself provides food for thought. For example, writing this
article has been a joy and a challenge, giving me much positive redirection of
emotional energy. When setting goals, I set no time limits and there is no
self-blame if I do not achieve them. It is a thrill to meet small goals. When I
fall short, I give myself credit for trying.
During one 18-month stretch, I was so sick I
could only lie in bed with eyes closed. My mind was starved for information, but
I was too weak to do anything about it. This state of isolation made me
despondent and fearful.
Now, I have learned to collect information in very small bites. Though too
weak to read for long, I attempt books with 2-3 page chapters, such as
Chicken Soup for the Soul, Small Miracles, and others like
them that contain positive, upbeat, true stories.
I had given up on TV. Now, on "good" Mondays, I watch the first six minutes
of the Oprah show that features a $100K "Use Your Life" Humanitarian Award. This
brief segment is uplifting and inspiring to watch. I also occasionally flick on
CNN Headline News to hear a few minutes of daily national events.
Social visits used to be impossible. Normal
speech was too fast and too loud for me to handle, giving me headaches that
could last for hours afterwards. I increasingly relied upon my husband as my
sole social contact. But now I've found ways to enjoy limited social contact and
increase my feeling of "connectedness" to the world.
A couple of close friends have come to understand my social needs. They visit
me regularly and sit quietly, reading a book or magazine. Most of the time I'm
not able to converse, so we listen to soft music and just "hang out" together.
It also helps when friends and family send me notes or e-mail. These mailings
often contain information on all their activities as well as fun photographs - a
real treat to receive and a reminder that I haven't been forgotten.
My spiritual life has been both my greatest
personal struggle and the area of greatest growth. When I became homebound, the
long hours were boring and lonely. I began to pray to God conversationally about
my fears, doubts and discouragement. The lonely days gradually began to become
peaceful days and a sense of God's presence with me began to emerge.
Keeping a spiritual journal has also been a source of peace for me. When
able, I record blessings and gifts received on each day. At first, I could think
of very few positive things to write. Yet, over time, I've begun to see a bounty
of abundance in nearly every day.
My greatest spiritual struggle has been seeking to understand my purpose in
life. Many times I have prayed, "Lord, why would you have me exist from day to
day, if only to suffer?"
My question has now been at least partially answered, for I have received
increased understanding in three areas. First, I know that I am valuable to God,
to myself and to others, independent of my productivity level or visibility in
the world. My husband has told me, "I believe that through your illness, we have
found a deeper and more lasting love."
Second, I know now that this illness has been a catalyst for tremendous
personal and spiritual growth that would otherwise have never occurred. Author
Rachel Remen says it well in her book, My Grandfather's Blessings: "We
do not return from the journey into pain and illness to the same house that we
left. We have become more and the house we will live in will be more as well,
for however long we may inhabit it."
Finally, God is teaching me to see my life -as it is now - as a full and
abundant one. Most of my days are still very difficult physically. However,
there are many moments of truth, wisdom and beauty in each of our lives. We can
allow illness and pain to block our vision of them. We can turn a blind eye and
ignore them, or we can embrace them and become fully whole.
Rebecca Becker-Bean lives in New Jersey.