There
is an extensive library of what could be called the "literature
of survival".
Both established professional writers and individuals with
no background in print have written effectively and movingly
about their physical or mental illness or other personal crisis. "Too
Soon to Say Goodbye" by the late humorist Art
Buchwald is a recent example. It takes talent and courage, but both
the writer and readers may find it therapeutic.
On a special
edition of OFF THE PAGE Bill
Jaker speaks with two women who
are dealing with serious illness, savoring each day as it comes
and spending a portion
of their time writing about their lives. The unpredictability of their day-to-day
condition is one reason that the interviews were pre-recorded rather than following
OFF THE PAGE's usual live and interactive format. (Another reason is that WSKG
Radio is currently undergoing a major renovation including extensive rewiring).
The dead have always been very near. Going into a cemetery
and resting my head on the past is no longer necessary; for
I, now, am the past. I tried to make myself unavailable until
the important people in my life had died. Then my seeking began.
I was old when I was young, now I am young as I die. All my
life I have either been hiding from, or seeking out, those
who meant the most to me. Now I want answers. I want all the
answers. So I can do this; so I can die.
--from I Can Do This; I Can Die
Seven
years ago, Sharon Parenteau of Endicott was diagnosed with
Cutaneous
T-cell Lymphoma, a rare form of cancer that
is now in a terminal stage IV.
Sharon's life till then had been a common mix of joys and sorrows. Her father
was a clergyman who never had a prestigious pulpit (at one point the family
lived in a parsonage that had no running water), and he developed a drinking
habit after being banished from the ministry. Her parents separated and she
was brought up by grandparents. Sharon had a happy marriage and raised two
daughters. After years of feeling poorly yet receiving a favorable bill of
health from her doctors, a diagnosis of cancer was presented to her on her
fiftieth birthday. Her religious faith was tested, her faith in medicine
undermined, but she also discovered a gift for expressing herself.
Sharon's
first book was "I
Cry for the Little Girl", published
in 2006. It is autobiographical, starting with her grandparents
and concluding
with open letters to her loved ones and with a selection of her poems. That
book was soon followed by "I
Can Do This; I Can Die", continuing
her story in a powerful, unblinking and often light-hearted tone. In what
may be her final days life has become more intense and she concludes "I
Can Do This" with the words, "It was a blast!" But they may
not be the last words: Sharon Parenteau is at work on her third book, and
it may
be that writing is what keeps her going.
It's 1997. I'm walking home from the Ithaca Bakery, where
I have gone to buy dough to make pizza. I stop at the corner
of West Court and North Geneva Streets, let a car pass, and
look up to cross the street. Nothing is familiar. Everything
is fuzzy, like an out-of-focus camera... I live in my hometown,
in my family home, and yet I don't recognize anything. What
is going on?
-- from Lost and Found: Transcending Alzheimer's
The
tragedy of dementia affects millions of individuals and families,
and in its first stages the afflicted
person can be perfectly aware of his or her
declining mental capacities. Early-onset
Alzheimer's (before age 65) touches
fewer than ten percent of persons with the disease, but it can be especially
debilitating if it happens during what could be a person's healthiest and
most productive years.
Jemma
Macera was born and raised in Ithaca,
the child of Italian immigrants who attained prosperity sufficient
to buy a home "on the edge of the Southside
neighborhood, where African Americans, regardless of income or profession,
and low-income families have been ghettoized, often in substandard housing." She
still lives there. As with Sharon Parenteau's books, Macera recounts an entire
family history, complete with pictures from the family album. She exhibited
a childhood fascination with letters and her poetry and prose has been published
in the Ithaca Women's Anthology, Ithaca Times, and other publications. She
has also been active in the Writers' Association of the Ithaca Area.
"Lost and
Found: Transcending Alzheimer's" is an outgrowth of Jemma
Macera's determination to reverse her condition. "Of this I am certain," she
writes, "everything we experience in life ultimately effects our health
for good or ill." That extends to the relationship we have with others.
In a reverse of the usual placement, "Lost and Found" begins with a
bibliography of books that Macera refers to as her "primary physicians".
There are lists of possible environmental and dietary contributors to Alzheimer's
and of thirty suggested good behaviors. In the latter list "self-awareness" deliberately
appears three times. She spends a part of each day dowsing to determine the
best balance of hormones and nutrients. Macera's restorative behaviors include
a love
of dancing and of good food. The book ends with twenty-five pages of recipes.
|
Off the Page
LISTEN
to the program NOW in streaming audio:
