WAGblog

NAMI-CT Conference

I'd like to reprint Lynnie's new speech here. (mine was largely copied from a previous entry about Insight) as it got a standing ovation and she delivered it incredibly well (Sue M: Try not to read this entry either until we decide which program we are doing, unless you won't be disappointed to know the speech beforehand.)

Pammy’s talk about gaining insight into the nature of
her paranoia led me to some insight of my own. But I
need to tell you first about my nose. (pause) OK,
really, my sense of smell. In college, my nose could
tell if my date had had too much to drink before he
got behind the wheel. And no peppermint gum hid
cigarette breath or pot smoking from me.

The downside – one sniff of garlic or raw onion from
lunch wrecked a good-night kiss. And, in medical
school, more than the pressures, the loss of sleep, I
hated the smells, the reek of formalin.

There are many positives of course... Most recently,
my fiance’ discovered he can choose colognes designed
to drive me wild...

Sal, from Italy, knows that my sensitivity to other
“aromas” is also exquisitely fine-tuned. One night
when we were still in the early stages of romance he
came over and I, expecting a kiss, threw out my arms
and closed my eyes. There was a rustling of plastic.
“Open up.”

I opened my eyes. There was a spoon laden with tomato
sauce. My nose recognized instantly: garlic.

“Not your eyes, silly, your mouth.” He grinned but
averted his head slightly. “You have to eat this now
or you won’t talk to me for days, let alone kiss me.
It’s my mother’s [pause] and it was lunch.”

Needless to say, I opened my mouth.

So when Sal sat me down the other day and said,
“There’s something wrong, You can’t smell anymore.” I
almost laughed. But he pointed out that he’d gone
through two bottles of my favorite cologne and I
hadn’t noticed. And what about the rotten egg the
other day? Also, just that night I hadn’t smelled the
food burning. Everything he said was true. But until
he pointed it out, I didn’t know any of it.

I tell you this story because it helped me understand
in a small way Pammy’s experience. When I didn’t smell
odor of burning food, I didn’t know to turn the heat
down; when Pammy doesn’t know the voices she hears are
hallucinations, she is unaware that she is unable to
distinguish the real from the unreal. So hearing
accusatory voices yelling at her of course she’s
guarded, apprehensive, even angry! Who wouldn’t be?

I started writing this speech after I’d just returned
from the hospital after handing her over to the
emergency room for yet another in a lifetime of
admissions for chronic schizophrenia.

When you’re the sibling or the parent, the child, the
spouse or the friend of someone with Sz, you may not
have the illness yourself, but it’s like living with a
cigarette smoker; you don’t light up, but you’re
breathing “second-hand smoke.” When she’s paranoid
and it’s aimed at me it still hurts. As Pam’s sister,
I don’t hear voices or hallucinations or live with the
discomfort of medication side effects, but I get
plenty of the consequences when she decides to stop
taking medications.

For years I’d try to help her, talk her into taking
the pills. When she was upset I’d try to calm her down
or let her cry it out, give her advice about what to
do, and whom to trust and what to ask her doctor.
She’d do as she pleased. All I could do was watch.
Many times I’ve realized Pammy was getting sick again
because I was “getting it in the neck,” being accused
of things that weren’t true.

In 2004 at the end of a series of psychiatric
hospitalizations, Pammy set her leg on fire + needed
skin grafts for third degree burns. But until July
2006 she’d been doing so well, I’d started to hope the
worst was behind us. Then the news that our father had
cancer sent her into a tailspin. Background voices
exploded into violent command hallucinations and she
spent the night once again looking for flammable
liquids and lighters. She was admitted to the hospital
the next day.

Schizophrenia invaded our lives over 30 years ago when
Pammy’s early symptoms began. The devastation it
wrought in her life is the main focus of our book,
Divided Minds, Twin Sisters and Their Journey Through
Sz. For years, at first no one spoke about it, and SZ
silently divided our family. There was no NAMI back
then. When we did talk about Pammy it wasn’t about her
brain illness.

In the last 27 years NAMI has made remarkable
progress in educating the public, promoting research
and eradicating stigma. Today we can say without
hesitation that Sz is a brain disease; schizophrenia
is no one’s fault. These days we speak out in public
about Sz and recovery.

But sometimes I think we two make recovery seem too
easy.
It’s not easy. We’ve had to deal with Sz for over 30
yrs. For too long, I tried to deal with Pammy’s
illness alone, shielding my family from most
disturbances, inconvenience, and care. Slowly this is
changing.

Schizophrenia is no long a taboo subject in our
family. Sz is a fact of all of our lives. It may not
be fun, but the more you know, the easier it becomes.
Schizophrenia has the power to destroy brain tissue
yes, and with it much cognitive and other functioning.
But schizophrenia’s power to destroy a person, a
relationship, a family, is only as great as we allow
it to be.

Pam’s journey, my journey, our journey, is shared by
every one of you, ill or well, whether the disease is
schizophrenia or Alzheimer’s disease, depression or
Parkinson’s. Our journeys differ only in the details.
We’ve all been through the highs when we think, “This
is it. This time we’ve got it beat. No more relapses.”
We all recognize the gut wrenching free-fall of the 3
AM phone call, the sleepless nights, the fists into
the pillows or walls, or dashboards. The missed school
conferences and games, the angry calls from the coach
or sitter who had to take up the slack one more time
and doesn’t understand your depression or your
depressed kid or brother or wife.

And every single one of us has known discouragement,
frustration, rage, and that black wall of despair, and
finally each one of us can remember deep inside just
how close we have come to giving up …maybe more than
once…

But all glimmers of hope are hope, just as all
drops of water are water. Hope, dreams, and billions
in pharmacologic research have brought us out of the
dark ages of blaming mothers for causing schizophrenia
and the back wards for chronic mental illness. It’s
only because of hope and dreams that pharmacologic
research has brought a sea change to the treatment of
neuro-psychiatric disorders.

Where once there was despair there is now hope and a
door to a full normal life. Pammy has changed in the
last year, and so have I. Learning from each other,
mistakes and all, we have made the small gains that
add up in life. Finally, I have my sister back. I can
rely on Pammy once again as my confidant, my best girl
friend and she’s the best writing teacher and editor
I’ve ever had! In spite of Sz she brings much light to
my world. And Sal, who came so unexpectedly into my
life two years ago, has enabled me to let down
emotional walls I once thought permanent. After
decades of making myself a self reliant, decisive, and
(I thought) totally independent adult, I discover the
blessings of asking for and receiving help. For this I
rejoice.
Remember, not one of us can make this journey alone.

I’ve been reading some things recently by Benedictine
Sister Joan Chittister. In one of her books I came
across this quote from Albert Schweitzer, “Sometimes
our light goes out, but it is blown again into flame
by an encounter with another human being. Each of us
owes a debt of gratitude to those who have rekindled
the light.”

To Pammy and to Sal I owe that debt. Thank you both.

NAMI has rekindled the light many times for all of us.
Thank you!

Posted by pamwagg at October 15, 2006 02:50 PM