Pulling Myself up by the Bootstraps
By Catherine Lilbit Devine
My name is Catherine Devine. I live in
Tucson, Arizona. In 1996 I had a bad bout of flu that lingered throughout the
summer. That fall I went through a training academy to become a corrections
officer. Then a month after completing that academy, I traded uniforms and began
training to become a community service officer for my local Police Department.
The aching muscles and weariness, which I attributed to the summer's lingering
heat, took a back burner to the grind of learning what I needed to know to keep
myself and the community safe. I was so weary that I was struggling to stay
awake during classes, but I wrote it off as being due to the training grind.
As the season changed and our short Arizona winter returned, the aches
disappeared and my energy returned. I put the bone-jarring fatigue of the past
three seasons behind me and focused on field training. But as the weather
warmed up, I noticed that my energy levels started to decrease and my joints
felt stiff and swollen. In January 1997, I was sent to the hospital after an
episode of paralysis on my right side. Numerous tests revealed nothing that
would have caused the paralysis. After three months, my body was functioning
again and I returned to patrol. However, the fatigue that had seemed to come and
go now took up permanent residence. A visit to my family practitioner led to
more blood work and pacifications from my doctor. I still didnít know what was
In 2001, again in the heat of summer, another episode of
muscle fatigue and strokelike symptoms while on duty forced me to switch to desk
duty. It also started me on a roller coaster of appointments with neurologists
and rheumatologists, who all seemed to want to label my medical problems with
whatever was handy at the time. Finally, in November 2001, without a spinal tap
or any other specific tests, I was told that I had multiple sclerosis. Two
months later, frustrated and more than a bit shell-shocked by the diagnosis, I
was fortunate to be assigned to a military doctor who looked over my chart,
talked to me about my symptoms, sent me in for yet more blood work and then
asked me how much I knew about fibromyalgia and chronic fatigue syndrome.
I wasn't sure if
this diagnosis was any better than the multiple sclerosis diagnosis. I was acquainted with
a woman who has fibromyalgia, and I knew her medication regime made her fairly incapable of
leading a "normal" life. I didn't want that to become my reality.
I struggled to stay on the job for almost two years. Finally,
in 2003 I had to give up my job as a community service officer. I took myself
off the streets when it became apparent that the fatigue and brain fog were
creating a liability for the department, as well as a safety issue for me and
It wasn't an easy decision. I was raised never to
quit and to believe that illness was something you just pushed through. So I
didnít give up. I adjusted my career expectations, and I adjusted my life. I
knew it wasn't financially feasible for me to stop working. I have two sons
to get through high school. A medical retirement wouldn't have given me enough
to pay utilities, much less enough to live on. I found a job that would
accommodate my illness better. I sit at a desk in an air-conditioned space and
answer phones. I still work a 40-hour week, but itís the lowest-stress job
Iíve ever had. If I need to rest, I can go out and lay down in my car during the
cooler months. There are days that I have to drag myself out of bed and make it
to work. But I go.
I had to make other adjustments as well. I, who have always
loved the freedom of driving, have been restricted to three hours of
driving per day. I have made it a point not to manage my pain with narcotics. At
this point, thatís workable. There may come a day when itís not. My
marriage became a casualty of this illness because there was no energy for
intercourse or intimacy. I don't do the grocery shopping anymore because it
takes me twice as long as it used to take. I only cook on weekends and have
learned to make freezer dinners so the boys can "cook" them during the week and
have a healthy meal. The boys do the laundry, including ironing and folding.
They know when Iím running down and guide me to the couch or bed, tuck a blanket
around me and enforce nap time.
hasn't been a bed of roses trying to explain an invisible illness to family,
friends, supervisors, co-workers, strangers. When I try to explain CFIDS,
"Everyone gets tired" is a frequent response. "You look healthy enough" is
another. I gnash my teeth when someone brings me yet another ďsurefire cure"
that will fix me right up. What I resent is the suggestionósometimes spoken and
sometimes impliedóthat if Iíd just pick myself up by the bootstraps, Iíd be
fine. Doesnít anyone recognize that I am
picking myself up by my bootstraps,
but those bootstraps no longer reach the same place they used to? When
a fireman is injured on the job and can no longer work
in that profession, but doesnít give up and finds other work, does anyone say ďJust pull yourself
up by your bootstraps and you can return to your old jobĒ? When a women
develops MS and can no longer do the same tasks in the workplace
or at home that she used to do, does anyone suggest that she just needs an attitude
adjustment and everything will be fine?
The fact is that I am pulling myself up by the bootstraps every single
day. Itís just that my bootstraps wonít take me back to my
old life, to my old self. I consider myself lucky to be able
to do as much as I do, and know that many CFIDS
patients are too ill to work or do many of the things I still enjoy. But if
all a particularly ill CFIDS patient can manage is to get up and get a
shower and spend an hour a day with her children, and she struggles
hard to accomplish that, I wish there would be some recognition that through that effort, she is
pulling herself up by her bootstraps.
My life may be different from the one I imagined, but I havenít given
up. I have published a book of poetry. I have a children's picture book in production
now and two more picture books waiting to be polished and published. And
I created a website outlet called Whispers of the West [
] for my books and the jewelry I
design. I also do speaking engagements, and at every event Iím approached
by someone who also has CFIDS. They ask me how I manage to
cope, and I tell them I cope by doing what I can
do for as long as I can do it. I like to say that while I have
CFIDS, it does not have me. I still ride my horses, I still go out
dancing, I still enjoy the outdoors and I still travel. I am just
cognizant of the flip side of the coin. A night of dancing, dinner and a movie will
take me days to recover from.
I tell people that while CFIDS isn't curable yet, it
is something you can live with without giving in to it. I
have my days when giving in sounds like a lovely idea. Today is one of those days.
Iím so weary I have visions of pulling the covers over my head and sleeping
for a week. Yet here I am, an hour left to go on
my shift, boys to pick up from judo class and dinner to get through. Yes, indeed, this
is exactly why I have bootstraps.