The CFIDS Garden, Winter '97
By Sandy B.
Originally published in Youth
Allied By CFIDS, Winter 1997
I listen to radio psychologists and read advice
columns sometimes, just out of curiosity, to see what it is that people complain
about these days and to marvel at how unhappy so many people are. One day, I was
tempted to call a radio psychologist and ask her if it is wrong or unusual for a
person to be happy. I imagined she would laugh and say, "No." I would push
further, asking if it was unusual for a person with a chronic illness, whose
life has basically been turned upside down countless times over several years,
to be happy.
Like many CFIDS patients, I often feel
being happy. When I'm in a good mood, I think there is something wrong. Am I
forgetting all the things I want to do that I am not able to do? Am I giving in
to this dreadful illness and now happy about being sick? Is there something I'm
missing or doing wrong here? What's going on?!
I have this notion that if you are
supposed to be miserable. I've never seen any commercial with happy
people advertising cold or flu remedies. You're supposed to lie in bed and
complain until you are well. Sick people aren't supposed to be happy. Those are
When I talk about my recent achievements
photography, or that I've nearly mastered another Chopin Waltz on the piano,
people are amazed. They look at me as if to say, "You did that while you were
sick? Don't you know that sick people aren't supposed to have lives?"
Those are the rules.
At times, people point out that while
I do not
currently go to school or work, I still attend other activities like movies,
parties and concerts, and I even travel sometimes. But, sick people aren't
supposed to have fun. Those are the rules.
I think those rules or ideas are only
short-term sick people though, the people who have the flu or a cold and all
they can do is complain. I'm sure I complained when I first got sick with CFIDS.
But, after awhile, you just learn to live and enjoy life despite
I have not forgotten that my life is
not as I had
planned for it to be. I miss being able to do everything I want to do, so much
so that it hurts. I am not happy about being sick - I hate it! I feel sad and
lonely and disappointed about a lot of things. But, to spend my life mourning
these losses and not getting as much as I can out of every day would be the most
tragic consequence of CFIDS.
The truth is that just like healthy
people can be
sad and miserable, unhealthy people can be happy - no need to feel guilty or
weird about that! I have a lot of little moments when I feel so alive that I
can't help but be happy.
I had one of those moments last summer.
I was in
Honor, Michigan. It was about 80° and sunny, with a gentle breeze. My Mom and I
were at a roadside park, eating lunch in the shade at a picnic table. It was so
quiet, we could easily hear the birds chirping away in the trees. In my line of
vision, there was an endless row of gorgeous purple flowers by the road. The air
smelled so clean and healthy. And, I just sat there thinking, "Does life get any
better than this?" In that moment, on that warm day in Honor, I was truly happy
and enjoying life.
Never mind that the day before I woke
ill at 3 a.m., and spent much of the day pondering whether or not I needed to be
taken to the emergency room before finally determining that I could get through
the crisis myself this time. Perhaps some of my happiness even came as the
result of getting through yet another crisis.
not seem to be connected as much
with health and energy as one might think. Happiness, for me, comes from feeling
pride and self-worth. It comes from spending time with people and sharing in
their joys. It comes from visiting new places and experiencing new adventures.
It comes from cradling a baby in my arms, and from a stranger smiling and
nodding in gratitude when I hold the door open for him. Happiness is enjoying
life despite whatever obstacles, bumps and curves may come my way. Those are