Daily Excerpt: Living Well with Chronic Illness (Charnas) - decision, mistakes, and choices
Excerpt from Living Well with Chronic Illness (Charnas) -
Hard Decisions, Mistakes, and Choices
What was I doing, sitting on the
floor in a short, white skirt in the jury room of the Boston courthouse? I’d
lost my mind. I’d been called for jury duty and badly wanted to serve. I
thought if I dressed up a little, I might improve my chances. I hadn’t been
feeling well, but I disregarded this in my desire to sit on a jury. I put on my
knee-length skirt and sweater set and merrily set off.
The chairs in the jury-pool room
were hard and uncomfortable. I sat there for a long time. After a couple hours,
I began to feel lightheaded and weak. This should’ve been my clue to request
dismissal from the jury pool. Instead, I thought I might feel better if I put
my feet up, so I rested them on an empty chair. That didn’t help. I continued
to feel worse and began having trouble sitting up. Other people were sitting on
the floor, so in my short, winter-white outfit, I lowered myself and leaned
against the wall. I felt completely stupid, plopped down on the linoleum in my
short white skirt. Instead of asking permission to leave, I stuck it out until
2:00 p.m. when all the potential jurors were excused. Going to jury duty that
day was a poor decision. If I’d been thinking clearly at all, I would have
requested a deferment.
Decisions
We can never anticipate all the
decisions we must make once we’re sick: treatment decisions, work-related
decisions, and smaller daily decisions—the list is endless. Most of these
decisions are challenging, and some of them are painful.
Mundane Decisions
Sometimes, the decisions we make
seem mundane. I once started a new job the day my uncle was in town on
business. He wanted to have dinner with me the first two nights on the job.
Completely wiped out both days, I went to dinner with him anyway, even though I
knew it might make me so exhausted I’d need days to recover. I did this to
myself because I adore my uncle and wanted to make him happy. This was a simple
decision, and like many everyday, health-related decisions, it had become
ingrained in the fabric of my life. Making up your mind about such a trivial
matter may seem easy but not when you must consider the impact your decision
will have on your health. And the decisions never get easier. Living with
chronic illness forces us to be thoughtful about many simple matters and often
brings small issues into sharp focus. This is a challenging way to live, but
it’s our reality, and we have to accept it to maintain our emotional
equilibrium and maximize our good health.
Life-Altering Decisions
Some decisions are life altering.
Ever since I was a teenager, I wanted to have children. I didn’t marry until I
was thirty-five, and I was eager to start a family once my husband and I
settled into married life. Just when we might have begun a family, I became terribly
ill and decided not to have children after all. This came as a harsh
realization of my limitations, but I knew I wasn’t well enough to take care of
a child. I could barely meet my own basic needs. Letting go of something I’d
wanted so badly was extraordinarily hard, but it was also easy. I knew having a
child would be unfair to the child and my husband, and the demands of
motherhood would have made me much sicker. I’ve never questioned whether I made
the right decision in giving up my chance to be a mother. I know I did the
right thing. Sometimes, I still cry about that lost chance, but I’m at peace
with it.
Decisions about Work
According to The Oxford Dictionary of Quotations, Freud said, “All that matters
is love and work” (1999). Sometimes we have to make tough decisions about one
or the other. I like to work (talk of decisions regarding love will come later
in this book), and I’m committed to the values and practice of social work.
When I decided not to have children, my career became even more important to
me. Most of the people I know who live with a chronic illness want to work, and
we struggle to stay employed. Not working has financial ramifications, of
course, but it also may engender a significant emotional loss. When we stop
working, we may feel we’ve lost a vital part of our identity and our sense of
self-worth. When I thought I might not be able to work full time, I felt
frantic and unmoored from the bedrock of my life.
Giving up work may make us feel
we’re no longer productive members of society. Being unable to support
ourselves as we’re accustomed to can be devastating. In the mid to late 1990s
when I was sickest, I struggled to stay employed. I went to work even when I
was very ill. I know I made myself much sicker by clinging to my forty-hour
workweek. I should’ve reduced my work hours or taken a few months off to
rebuild my strength. (I did reduce my hours a couple of times during that
period but only for four to six weeks—not long enough to make a significant
difference in my general health.)
After three years of agonizing over
this issue, I asked my employer if I could reduce my hours permanently but only
by eight hours a week. The agency I worked for agreed to the decrease in hours,
but this didn’t last long because I, along with ten percent of the staff, was
laid off a few months later.
I’ll never be sure if I made the
right decision by continuing to work full time during that period of my life. I
believe that going to work every day, sick or not, was critically important to
my emotional well-being. I know many people who’ve wrestled with this dilemma.
Some have decided to leave work, and some have struggled to remain employed.
These are incredibly tough decisions.
Good Decisions and Bad Decisions
Applaud your good decisions whenever
you can. I wanted to go to Italy for years, and in 1997, my father asked me to
join my stepmother and him on a trip to Florence. I had no idea if I could
manage the rigors of international travel or if I’d have the energy for the
hustle and bustle of a visiting a new city. The last time I’d traveled to
Europe, I’d been stuck in bed, sick, for most of my five days in Scotland. I
watched Scottish soap operas instead of touring the countryside as planned. I
didn’t want a repeat of that experience, but I also didn’t want to pass up the
chance to see Italy! I decided a little bit of Florence would be better than
none and resigned myself to the possibility that I might need to spend half of
every day resting. I decided I could live with this compromise, but I still
worried whether I’d be healthy enough to make the trip. Luckily, when the time
came, I felt well enough to travel. To my surprise, I felt fine for the entire
trip and had a great time. My gamble paid off, and I was pleased with myself
for deciding to take the risk.
At other times, I’ve made poor
decisions. In the fall of 2000, I went away for several weekends in a row and
found myself more worn out than I could have possibly imagined. I’d been
feeling so well that I simply forgot I couldn’t handle a certain level of
activity. I indulged in happy, happy denial, and, as a result, I paid the price
of profound exhaustion for weeks afterward.
Mistakes
You’re going to make decisions
about your health you’ll later think of as mistakes. Making mistakes is part of
the process of learning to live with illness. There’s no point in beating
yourself up about it. Living with illness is always a challenge: Can I handle this, or can’t I? Will this make me feel worse, or will I be
all right? If you don’t make any decisions you later realize were mistakes,
then you’re only doing what feels completely safe and are never pushing your
limits. Testing your limits is part of the ongoing process of learning how to
live with illness.
No-Regret Zone
I try to live in what I refer to as
the “no-regret zone.” Don’t be regretful about poor decisions. If we learn from
them, then even poor decisions have positive and useful outcomes. The lessons
we learn from mistakes help us shape better decisions in the future.
Before my current job at the local
naval hospital, I worked on its psychiatric wards. After I started the new job,
I ran into one of my former patients, a man of considerable rank, while I was
taking my mid-day stroll around base. I’d done a lot of supportive counseling
with this man and knew him well. He stopped to chat with me and admitted he was
going downhill emotionally. He had a great outpatient therapist and psychiatrist,
so I encouraged him to ask for an emergency appointment if he felt suicidal,
which he had in the past. Sure enough, a few days later I found out he’d been
hospitalized again. After clearing the visit with his therapist, I went to the
acute psychiatry ward to see him. The patient told me he’d been feeling better,
and so he’d decided to stop taking his medication for bipolar disorder. He
admitted he’d made a bad decision. I asked him what he’d learned from his most
recent hospitalization, and the patient said he learned he must stay on his
medications no matter how good he feels. I applauded his insight and urged him
not to forget it. He hasn’t been admitted again since this incident occurred.
A Process of Fine-Tuning
Making good decisions is a process
of fine-tuning. The decisions don’t change, but we keep refining our responses
to them. For example, I have to decide what, if anything, to tell employers
about my health every time I change jobs. Do I tell my new employer nothing
about my health problems and hope I stay healthy, making the topic irrelevant?
Or do I give him a clue about my health issues, so if I get sick, it’s not a
complete surprise? Even before I received a formal diagnosis, I’d tried both
approaches. It’s not one decision. It’s a new decision every time I have a new
employer and a process that becomes a bit more refined each time I change jobs.
Every day we need to make decisions
about our health and matters affecting our health. I’ve learned you can let go
of important parts of your life or certain dreams for the future, and still be
happy. But it’s also normal and natural to be sad about these decisions and to
mourn your losses. The best we can do is applaud our good decisions, learn from
the bad ones, laugh about them, and move on.
Choices
Choices are kissing cousins to
decisions. If you’re making decisions, then you have choices in your life. In
the face of illness, choice is a gift even if it feels like a burden. Be
grateful for the choices you can
make. Remember that illness has not taken away our ability to make choices even
in our constricted lives. Knowing this helps ward off feelings of powerlessness
and boosts good mental health.
I’m grateful I always had a choice about whether I should work and how much to work. I’m glad I never became so sick that this choice was taken away from me. Whether I made good decisions or bad ones along the way, at least I enjoyed the privilege of weighing my options.
The consequences I have experienced
in life have been the result of my choices, not those imposed on me by illness.
In my sanest, calmest moments, I am always profoundly grateful for this.
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