People struggle in life and
there are a wide range of problems one can be born
with, self-inflict or adopt. Some are rare problems,
some are extremely common. I have what I consider to
be a problem that falls in the rare category.
A ghost lives gently in my
family room. I’ve known her all my life. She moans
softly to herself. She doesn’t scare me anymore.
I’ve grown accustomed to the sound of her haunting
sighs, repeating phrases.
My mother has schizophrenia and
lives with me, my husband and our 16-month-old
daughter. Schizophrenia is a profound disruption in
cognition and emotion, affecting the most
fundamental human attributes: language, thought,
perception, affect, and sense of self. The array of
symptoms, while wide ranging, frequently includes
psychotic manifestations, such as hearing internal
voices or experiencing other sensations not
connected to an obvious source (hallucinations), and
assigning unusual significance or meaning to normal
events or holding fixed false personal beliefs
(delusions).
My mother is not the mother I
once knew. Rather, she is a ghost of herself; a
rough photocopy. I prefer the ghost. The mother I
grew up next to was not so gentle. She was terrified
of many things and thus terrifying. My father was
loyal and he cared for her throughout the
rollercoaster ride of her illness, almost right up
to the end of his own struggle with Alzheimer’s four
years ago. Over the years, her severe symptoms have
steadily fizzled.
“Severe symptoms” sounds so
kind. I think she was tormented by the most
frightening and horrific demons a brain could
manufacture. I think she was, but I can only recall
how it looked through my own eyes as a child. I know
to her the hallucinations she had were very real.
I spent one afternoon huddled
in the hallway next to her as she clutched a large
kitchen knife, protecting us from a killer outside.
I was five. My father was outside mowing the lawn
and I remember he had to bang on the front door to
ask her to unlock it. I remember, against her
command, I unlatched it for him. He tried to
convince her that there was no killer, but it was a
fruitless effort. She had already called 911 and the
police were at the door within moments. The police
walked through the backyard and around the house,
then reassured us there were no trespassers.
As the events unfolded at
Virginia Tech recently, I sensed the haunting
fragments of a picture all too familiar being
painted before me with each news clip. The video
clips of Cho Seung-Hui - angry, incoherent, and
delusional – were clearly of a schizophrenic or some
variation of a severe and diagnosable disease. With
all of this fresh and our recent move to our new
home, I have been afraid that neighbors would
associate my mom with someone, capable of violence
similar to the massacre at Virginia Tech. Thus, it
has become my little secret, again.
I spent many
years angry at my mother for her disease, and then
angry at her disease, and then, for a time, angry at
science for not doing more to unravel the mystery,
causes, and cures. Now I feel saddened and a little
hopeless and very much alone. I experienced 17 years
of bliss living independent of her while my father
cared for her and then, after he passed, while she
lived nearby in a condominium. But I can no longer
say it is appropriate for her to be alone. Her
doctor finally guilted me into putting her into
assisted living. Unfortunately, when I did so, she
jumped from a second story terrace and broke her
leg—and the money just poured out of her account
with me signing the checks. Thankfully, my mom is
not willful; she just wants to be able to watch TV
and is especially happy with “Dancing with the
Stars.” We were able to purchase a home together
with the sale of her condominium—much more than we
could afford on our own as a single income family.
Here we are, in a prestigious neighborhood with a
dirty secret.
Some days, I just want to run
away. Other days, I am kept afloat by the stories
and knowledge that I am not alone derived from the
online community. I think it has finally come time
that I reach out for some support because it seems
it is no longer enough just to be heard—I need the
comfort of hearing others.
Diane Glass is a caregiver for
her mother who is living with schizophrenia.
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