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The Write Word: From the Heart
Many people aspire to write novels, poetry, newsletters,
articles and more, but they often overlook an important aspect that should
be considered in their writing.
Obviously subject matter and audience are important. For
me, though, writing from the heart is what it’s all about, and is as
important as almost anything else.
Writing Descent Into Madness came not only from
the heart, but from real experiences with my son, who has schizophrenia. Its
effect on him and our family has been profound. I have spent many months,
weeks, days and hours listening to him, advising him, trying to help him
through the morass of his life's struggles with this terrible disease. There
are some good times, but getting there is the problem.
My son wrote a lot of his feelings in journals that he
kept to console himself and to release the demons inside him. Many, he
shared with me. We had many late-night conversations and discussions, with
me trying to make logical the illogical—to make sense of the voices that
were so real to him, and to try to diminish their importance so he wouldn't
suffer so. I tried to show my son that the voices and the torment weren't
real, but were instead thoughts and perceptions of a brain that was
diseased, much like a body diseased with cancer.
Schizophrenia is insidious and unrelenting, and trying to
ameliorate the pain and make it less intense is almost a futile task.
However, this effort taught me many things about the
human mind, the human spirit and what loyalty and compassion really exist in
a world where they sometimes seem severely lacking. It taught me how to
fight the system the best way possible, and to try to get the best mental
health care possible under the limited provisions in our state and country.
It also taught me a great deal about my son and his
resilience—his bravery. For him, these auditory hallucinations are like
having a thousand televisions and radios turned on. They are as real as if
someone is in the room speaking, but many of these voices are saying things
that are unpleasant or that are contrary to what is right. They bombard a
schizophrenic person day and night and cause severe debilitation and
inability to function on almost every level.
Often this horrific brain disease starts in adolescence or early adulthood.
No one is exempt from it, but some are more likely to be afflicted. There
appears to be a hereditary factor, and for that I feel much guilt. I know
that isn't rational or necessarily deserved, but it is there nonetheless. It
is an additional factor that I, as one of my son's caregivers, have to deal
with. He has to deal with it, too, because I'm sometimes discouraged and
depressed and cannot bolster him constantly.
It's a never-ending cycle of ups and downs: his illness affects me and my
family negatively and our depression over it affects him.
In Descent Into Madness, my son tells his story
through me, and much of it details what goes on in his mind when he is both
very ill and when he is better. I never say "well" because until
there is a cure or a very effective treatment, he will never be cured.
There are, of course, varying depths to this illness that
affect people differently, and many, such as my son, have additional
complicating illnesses both physically and mentally. My son also is
borderline diabetic, which he controls with diet as long as he is
"better" and God isn't telling him (in his mind) that it's okay to
eat all the sweets and have all the sugar he wants—that his diabetes is
"cured." He then goes into a diabetic crisis from all the sugar in
addition to his schizophrenia, which is at its height of having its hold on
him in this situation.
He also has bi-polar disorder, extreme anxiety attacks,
and obsessive-compulsive disorder. All these things are sometimes
interrelated and affected by each other.
But my son weathers all the storms in his life for better
or worse, including all the ups and downs of new medications that do well
for a while, but to which he becomes immune over time. He is a sweet person
who is very compassionate and caring, but who gets very angry at his disease—especially
when the voices take over.
There are some good times and occasionally even humorous
and amusing times. After all, you have to laugh sometimes since they say
laughter is the best medicine.
Presently, he is on a new medication (to him) called clozaril, which is working better for him than any other medication has in
the past eight years. The only concern is that it can cause severe,
life-threatening anemia in some, so he has to have a weekly blood test to
make sure this isn't developing. If it does, he has to go off the medication
and back to his demons.
So, in writing Descent Into Madness , I had to
look for the "write" words and to write from the heart. It was
necessary that people, both professionals in health care and lay persons,
see and understand what goes on in the mind of someone with schizophrenia so
I had to temper facts about our lives and emotions with information and
facts about schizophrenia and what is known about it.
In doing so, I believe there is a wealth of information
in the book and that all who read it will come to a better understanding of
this disease and how to deal with it should it affect them, their friends,
or their fellow citizens. Professionals in mental health care can learn a
lot about what goes on in the mind of a schizophrenic from these real
thoughts and experiences.
Understanding and compassion—dealing with the disease
as a biological brain disorder, as the Surgeon General says—will be a
first step in the right direction. A first step toward a cure.
Jonell Belke is the author of Descent Into Madness: A
Personal Look Into Schizophrenia.com
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