Poetry From the Edge by Barbara Quester

In My Dreams

In my dreams I am in the center
watching everyone fall away
from me
As if I had a disease, or something
contagious and deadly.
Even my family,
who really had no concept of
what I was living with,
would hug me at a distance, and step back
before I could kiss them goodbye.
“Wash your hands before you handle the kids”,
I would hear often.
And yet, as much pain as these
words and actions caused me, I remained silent
in my condemned state.

Could I blame them?
No; they had no way to know
what the rest of us
don’t know, either.

As much time as I have spent
trying to learn about this
silent and haunting illness,
few have asked,
and even fewer
have taken the time
to listen, and learn, and care.

I respect the ones who cared enough to
want to learn, yet I cannot
disrespect those who do not.
Life is what it is.

17 Oct 2004

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As My Heart Yearns Yet I Stay

My heart yearns to be out in the West
where I learned to love a sunset
over the Rockies
And my heart yearns to be free, always free
And I know I have had to sacrifice much
to live this dream and
this only reminds me of
just how much freedom costs
But I know that because of
this price that I pay,
when my yearnings call, I can go
where my heart yearns to be
The ties that hold me here must be made of steel
because what holds me here is
simply love
As the winds of the Rockies
call to me and blow through my soul endlessly
what I stay for
is a solid love for those who
hold my life together here.
And I am still here
and my heart still yearns for the West
But for now I will have to be satisfied
with the sunsets that settle me now
over the lake to my north
and I can love them just as much
even though my heart will always live in the West

10 Dec 04

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Focus

it’s sad to realize
just how many gifts we overlook
as we pass through
this thing we call our life.
no one seems to take the time
to slow down and realize just
how beautiful it is anymore.
and it’s sad to realize
just how much we are missing
as we pass through
this thing we call our life.
it’s always been said that the more
you focus on one thing the more clearly
you see it.
but how is it that we can apparently focus on our lives
so clearly and still miss so much?
each day that I live with this disease which
has affected my life is not good, but
when I can surface and
focus on a friend’s smile
or really hear a song that is sung by
a voice uniquely unparalleled
it takes my breath away.
and I am blessed to have each day to try and focus on
some gift that is shared with me
if I cannot focus enough to pay attention, that
may be unfortunate,
but if I don’t really make the time to
pay attention when I am able, well,
it is just one more opportunity I miss
in this thing I call my life.
I had to learn this lesson the hard way,
as do we all
but I am happy to be able to focus long enough
to say proudly
at least I was blessed to learn it

Dec 5, 2004

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I Can’t Think

I can’t think today
so what else is new
although I did accomplish some things
but not without a great deal of
absolute effort to focus
my hands shake as I write this
but not because of a lack of
effort to calm them
more it is probably the stress
of the amount of energy
it took
to force my existing brain cells
to complete the tasks at hand
yesterday was a trip to the ER for
yet another reaction to medication
my body just doesn’t want to take
I thought I learned long ago that
my mind controlled my body

Oh, yeah, that was before, and this is now–
my body has grown a mind of its own now and
my mind’s mind has drifted off to
some remote place
I just can’t remember where….
I am being crushed under
the weight of all these maladies
as they pile one on top of another
as if the carrier of the football
in a game
I have been tackled and shackled and
wonder if I will be able to get up again and
yet again
it is getting harder
I am growing more weary
with each effort

Jan 20, 2005

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Just Draggin’ Along

I guess I don’t really realize
how ill this body has become
all the changes that have occurred
and where the last ten years have gone
I used to keep track
but not anymore
now it’s just too much work to wake up and
wonder just what is causing
what to hurt today

my life has become so minimized
in so many ways……
nothing that I used to be able to do
happens anymore
the brain cells that used to work without asking
suddenly one day just went on strike
and then became permanently laid off and now
there are just not enough
brain cells to go around

sometimes I wonder just what is the use?
but those are on really bad days
it is so easy to drop down to feeling sorry for
your losses, and I suppose
that is an inevitable event given the
amount of life lost—
half a brain being lubricated by a minimized
blood supply that simply can’t
keep up with the demands of a real life

I could focus on those negatives
and sometimes I do to a fault
but what’s the use?
the good days are such a blessing
how could someone be so happy
just to wash a floor or fold clothes?

how minimized good things have become……

17 Dec 04

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Not Ever

Today was a day when it felt like
God forgot who I was
They say our emotions come from our soul
yet
today mine seemed to come
from hell itself

I really didn’t want to live anymore today
I didn’t want to ache anymore and I
didn’t want to hurt anymore either

I don’t seem to be able to remember ever being in
this amount of pain before

So what was it this time?
he fibromyalgia or
he chronic fatigue syndrome
oh, wait, don’t leave arthritis out—
it would feel so alone without it’s buddies along;

Putting one painful step in front of another
I came in the house and I opened my email
I came to a most amazing story
that stopped me dead in my tracks and
gently reminded me that

God forgets no one

That we all go through the same feelings and
God bless those who are able to slip by them
without them taking notice

I pray that those who have not experienced depression
will never have to
and I pray that those who have not experienced pain
will never have to
and I pray that those who have not experienced war
will never have to
these conditions constitute hell on earth
yet somehow
always in the back of my mind somewhere
I remember

God forgets no one–not ever

22 Nov 04

Visions in my Head

what a day it has been
and yet
not really a bad one

just keep having these visions
that pop off the television and
somehow
they become imbedded in a mass of confusing
thoughts and images

my body didn’t want to work today
and with each day that passes
more stuff gets
started and left…….
somewhere

I cannot stand to see the papers
scattered in every corner of
this room
but that’s just today;
tomorrow I may not
even notice them.

and if you’re wondering if how I started this writing
relates to where I am now,
well, I haven’t a clue;

I have no answer
because, as a matter of fact I hadn’t really
noticed—

26 Nov 2004

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The Pain

the pain speaks volumes,
sometimes
and other whispers of it
seem always to be
hanging around,
running up and down arms or
sometimes legs,
at free rein,
as if it owned the neurons that
act like freeways
in the body itself.

who gave this pain
permission to run rampant
in my life?
because I don’t recall
anyone asking…

I feel violated by this intrusion,
this invasion that interrupts
daily chores, daily goings on—
my daily life.
and as much as I hate it and
want to give up sometimes
well that’s just how much I have to
find the courage to take
one more step, despite
the burdening weight that I detest so much.

but what I know is that we
cannot stop because the pain hurts
even though at times it feels
so very heavy and we wonder
how will we take one more step?

getting up, even if it means
being picked up by
someone else
is imperative, but not easy

it is never easy

Living In the Future

As I press my nose
to the window,
I watch life pass me by
No one really knows
I am here, watching
And that I want to have a life, too
not just exist, as has
been my life for countless years now

Life in America is
living in the future
And although that used to be
my life too
I actually much prefer
living in the present
as I have had to learn to do

Granted, I may not be
having as much fun as
a healthy person is
but neither do I live with
the stress of living
my life in the future

Something taken away,
yet something given
in return

As we all know,
God never closes a door
without opening a window
in its place

3/10/05

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The Pain

who gave this pain
permission to run rampant
in my life?
because I don’t recall
anyone asking…

but what I know is that we
cannot stop because the pain hurts
even though at times it feels
so very heavy and we wonder
how will we take one more step?

getting up, even if it means
being picked up by
someone else
is imperative, but not easy

it is never easy

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Is This Real?

This illness is really only a
delusion, isn’t it?
It cannot possibly be real

How can it be? it defies the
very basic logic of brain function
this illness robs me of the basic
ability to focus.
I am trying to focus on writing
one line, and my brain just leaves
the road it was traveling
and follows a new path
as if at a fork in the road
or two
because now I have three lines of thought
all going at the same time, and
although as they intersect at some junctures,
they also jump over each other
as if they were an acrobatic team

how can it defy the basic
workings of the brain—
we needed to find a cure for polio
and we did—
and we needed to find a vaccine for smallpox
and it happened—
and we needed so badly to
find a cure for AIDS and we can control that too now
and yet I am still here, with a disease that
has plagued generation after
generation and we cannot
figure out how come my brain
can’t remember from one second to
the next what it was going to
send me to the next room to do?

how is it possible
that my creative skills are intact,
but I cannot control
my thought process long enough
to go from one logical thought
to another without it taking a lunch break?
what the hell?

3/13/05

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Reasons

a long time ago I believe that
God told me His reasons
for my existence on this earth
I believe He told me that my job
was to help others—
it was just that simple
and I accepted His word, and
I accepted His assignment
and for many years I just lived each day
doing His work to the best of my ability

but then, one day CFS became
a partner in my life
without my permission, it slipped into
my bed, my job, my world
and devastation and confusion and pain
and a host of other symptoms
became part of my life
and I kept asking God why?

I couldn’t tell you how many times He has
shown me, or told me,
whispering in my ear in the “wee, small hours”
probably when I was so drugged I could
not wake enough to hear.

The latest crash put me to bed
yet again,
but this time, as I lay in my bed
wading through another attack
I talked to God, as we all do,
I asked Him what could
possibly be His reason for putting
me in this hell on earth
and I believe that as I lay there
He answered me
loud enough for me to hear Him
say that He needed
me to live this life so that
He could use me to help others
in a different way than before—

I know now, as I always have, that
I am in this particular place
for a particular reason that
God shared with me
I choose not to share that reason
with you now
but if you read between the lines
maybe you will find the answer
for you, too.

15 Mar 05

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A Change in the Air

I feel a change in the air
but can’t quite put a finger on it
I’d like there to be some whiskey
in this ginger ale–
that’d probably only
compound this apparently
depressing night

I want to run across the field
that used to be my playground
as a child
Now it grows more distant
not only in miles,
but also in memories

And I want to jump off that diving platform
that was my swimming hole
way back then
I dare not now, for fear of not
being able to swim to shore again

I used to write of love
and romance
and passion

Now I write of falling leaves blowing
aimlessly across the field that
was my playground,
knowing full well
any attempt to even run across
my front lawn
could be, well, detrimental…..

I miss love—
I miss romance and
I miss the passion that was mine
in the back seat of that old Pontiac

I barely remember not only the feelings,
but the energy to pursue them—
limitless energy,
abounding passion

How I miss this part of my life

Tonight would be a good night
to call Paul
it is the kind of night that
I need to talk,
but even the dog can’t be rustled awake.

29 Mar 05

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The Few

it takes no effort at all
to write endlessly
of the parts of my life that
I wish to dismiss
but it takes great effort
on some days
to concentrate on
the good

yet I have to make a point
to be thankful
for those in my life
who care and
show a level of understanding
that does not just
dismiss me on a bad day

I understand that the few
outnumber the masses
but those few are so
magnificent and
so honorable
that they cannot be overlooked
and I thank God for
their presence in my life
even on the bad days

3 Apr 05

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Cry For Help

my cry for help is
‘putting the bottle of pills on the table’
with a bottle of gin in
one hand, ready to
just let go

I am tired and
I grow weary of the looks,
the lack of understanding
the unending lack of
answers to make this
life go away

Tonight I grieve heavily for my
old life which I know cannot
be restored

I can never be the same
person I was
None of us can

I know that I am not at this point,
but how often have I
been just this close….

30 Mar 05

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The Pain

who gave this pain
permission to run rampant
in my life?
because I don’t recall
anyone asking…

but what I know is that we
cannot stop because the pain hurts
even though at times it feels
so very heavy and we wonder
how will we take one more step?

getting up, even if it means
being picked up by
someone else
is imperative, but not easy

it is never easy

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