Breath & Shadow

A Journal of Disability Culture and Literature

Spring 2010
Volume 7, Number 2



Alzheimer’s:Living with Dementia

once we thought THEY
   were just wacky/crazy

forgetting everything

Oh you are…?
something's wrong
with us
trapped behind neurons
terror cancer
of memory

Really? You can’t catch it?

That’s what the doctors said?

We promise. Promise.

We:     ghosts of ourselves

listen to us
you don't know this disease
don't know it can be
a place of transformation

differences evolve
lives  shift

We are ourselves

we still
engage in laughter
ice cream

we still
share fun

we still
use humor - with compassion

he says: A guy is still a guy
a winner

we say: We are still who we are
we do what we have to do
to live with passion
to continue with life
to help people understand

call it hutzpah if you will
We have a future
we are:

we are:
creative spirits
truth tellers

we are:

A shared experience
We are new

we have purpose

we are becoming

we are living

WE Are.

Living with Dementia is a group of diverse people--ages 50 to 80, men
and women, employed and retired-- who meet twice a month at the Maine
Chapter of the Alzheimer’s Association to share their experiences of
living with dementia. They come together to learn from one another and
to connect with others who are also going through the life-changing
transformation of coping with both the disease and social perceptions
of the disease. All are becoming advocates to change the face of
dementia. They insist that they are neither whiners nor wimps; neither
helpless nor stupid; and they are definitely not giving up. They share
laughter and joy while also giving space for each to mourn the
inevitable losses that come with the disease. The group is hoping that
the readers of their poem will see that it is possible to keep
going—even with a diagnosis of dementia. They want you to know that
even as the disease slows them down, it can unleash surprising
creativity. They refuse to be invisible. They are not ALZHEIMERS; they
are individuals—each unique—still transforming, still growing, still
learning, still open to life.

This site created by Norman Meldrum, currently edited by Mike Reynolds. abilitymaine2011@gmail.com

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