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Dear Friends:

    I have given this thought before posting it.  I have sought and =
received reasonable advice from longer standing list servers than =
myself.  With their encouragement I am going ahead.  The reader should =
be cautioned, however, that this story hits quite hard at some of the =
more negative realities of living with this disease.  My husband and I =
love each other very much.  We don't want this disease to come between =
us.  In order for that not to happen, I have to do this: chronicle the =
forces that are trying to tear us apart.  Get under them, understand =
them, and talk and talk and talk.  To integrate this new understanding, =
I must write.  I offer this story, as I do all others, humbly.  If it =
gives you words for the "unreachable feelings" as one respondent told =
me, my heart is full.  If it leaves you untouched,  or questioning why =
someone would want to write about personal feelings, or raise issues =
that are in no way reflective of yours, or angry because it has stirred =
up issues that were well out of the way, and now they're back,  I extend =
my hand in friendship and ask forgiveness.


Another Country

    "I was thinking," he says cautiously.
    Oh, an original thought? I toss my angry eyes into my lap.  What =
would
it be this time?  A sports score?  An "idea" for renovation he has seen
somewhere else?  Maybe a rehash of something he has read in the paper, =
or
heard on the news. Perhaps The Simpsons were on last night.  I'm all =
ears.
    "It was a kind of thought, sort of a quiet thought."   My husband's =
body
is gleaming with sweat.  He keeps lifting his t-shirt to his face to =
wipe
his eyes.  Another of his habits I detest.
    "It came to me while I was mowing the lawn a little while ago." Oh, =
so
he thinks while mowing the lawn.  I always thought he did it just to add =
to
the stuff he could do without thinking, which kills most of his time. (A
phrase he taught me.)  My right hand taps on the coffee table. It is not
just from impatience.  My Parkinson's Disease has started the right hand
tapping, as it always does, with my first consciousness at dawn.  So now =
I
am an impatient person with Parkinson's.  Now my left leg is going.  =
God,
will you spit it out.  My heavy eye lids lift and land hard on his face.
    His eyes are averted.  He is absorbed in a thing he is doing with =
his
fingers on the back of the couch.  We never look at each other any more. =
 We
sneak glances, then stray off.  Afraid to see what, I don't know.  After =
25
years of marriage there's not much we haven't seen of each other. Most =
of it
not worth seeing.  Like now, his face draining of colour, his fingers
fidgeting.  When did his hair go so grey?
    "I was wondering....."
    Oh God, get to the point.  Why can't we have a half decent =
conversation
any more?  Everything out of his mouth lately has to go through this =
pause,
hesitation, run it up the flagpole, send out feelers.  No wonder I have =
no
time for this.  I mean it's like he doesn't trust me.  Can't he just =
blurt
it out?
    "Well??"
    ".......if you loved me."
    My gaze falls back on my lap.  I corrall my right hand, and hold it =
to
tame the tremor which has suddenly become quite strong.  It never used =
to be
like this.  Twenty-five years ago we picked each other up on a 5 hour =
train
ride from Ottawa to Toronto.  Five hours of finding out that the one =
thing
we both loved doing, the whole reason we had become teachers, lecturers,
conference convenors, and soon to be lovers, was because we loved to =
talk -
to ourselves, each other, anyone.
    I loved him immediately.  It was his eyes, no his spirit, no his =
jokes,
no the way he had coughed into his pipe just after he sat down, and =
spent
the first few minutes of our acquaintance putting out the sparks on his
sweater with spit, sssss....ssssss.......sssss.  hoping I wasn't =
watching
slyly out of the corner of my eye.  But I was.
    And barefoot on a beach on Prince Edward Island, at dusk, conducted =
by a
minister once defrocked during the 1930's for his Communist activities, =
with
fishermen and farmers holding sunflowers, someone singing verse after =
verse
of The Ballad of the Flying Cloud - another sunken ship song - we took =
one
another's hand and committed ourselves to each other and to life and =
love
forever.
    God, what did we know?  A couple of flower children - peace and =
love, a
Volkswagon Beetle, macrame, and plans, dreams: a long loving life, =
children,
old age, bringing each other cups of tea in the garden.  And setting =
quietly
one day into our own brilliant, peaceful sunset.  No one counted on =
this.
No one said anything about Parkinson's Disease striking just one of us,
closing the doors for both.  Hitting just one of us in the present, =
changing
both our futures irretrievably.  Grabbing one of us in our prime, =
children
gone, nest being feathered for just the two of us, and now for what, so =
we
can more easily install a ramp? Or paste directions for the Heimlich
manoevre on the refrigerator?
    And making love like tigers.  Does that memory linger when you're =
making
love to a stone?  The tingle of a kiss on the neck aggravates the hand
tremor.  The anticipation of excitement and fulfillment is quickly =
replaced
by the shame of being unworthy, spoiled goods, no longer eligible for =
the
holiness of physical love.  Do I love you?  Do I love you?  How can you =
ask
that?  I'm gone. I've left for another country, a place for which =
neither
you nor anyone else has a passport.  A place that is entirely lonely, a
place that separates me even from myself, where my body transforms daily
into a shape with a purpose that is not mine.  And where the best of all
possible help comes from well-meaners in tones of, "Buck up, lovey, no =
one
said this would be easy."
    Have I not, several times, suggested divorce?  That you would be =
happier
with someone whole? That chronic illness kills marriages by the dozens? =
That
if we separated life would be just a whole lot easier for us both: fewer
conflicts, fewer decisions to make, less need to conquer the gargoyles =
of
intimacy that stand as gatekeepers whenever we attempt to touch the =
pleasure
in each other, or the pain in our own selves. There would be fewer times =
for
us to stand naked before each other, and turn away from the memories of =
what
was and our hopes for what might have been, had I not brought this =
monster
in here to live with us.  How can I receive your love in a heart that is
fossilizing under layers of worthlessness and fear? How can you ask if I
love you?  It is you who cannot possibly love me.
    The morning seeps into afternoon.  The quiet has not broken between =
us.
He goes out to kill more time in the garden.  I drift in and out of =
sleep on
the couch.  A dreamy, unhurried time.  My hand tremor floats away as =
sleep
approaches.  It is a trance: waking - tremoring; sleeping - at rest.  =
Peace.
These riveting changes in our lives to be decided later, maybe =
never.....
    He's in the room.  "I just got stung by a wasp.  Can you see it?  =
There,
on my leg."
    I arch my neck, oh yeah, wasp sting, too bad, does it hurt.  Going =
back
to sleep now.  Within moments he's shouting, "Barb, my skin, it's on =
fire, I
can't stop scratching.  I'm swelling. Barb my lip, look at my lip, it's
swelling! We've got to get to a hospital.  Barb you've got to help me!"
    We're in the car.  His hands and feet, his mouth steadily expanding.
His eyes, his ocean blue eyes, disappearing inside balloons of skin.  =
Welts
are rising on his arm.  His breathing is becoming laboured.  My God.  =
The
traffic. The passage of happy aimless people driving lazily through a =
sunny
afternoon.  Please, oh, God, please let me get there.
    "It's okay, honey, try to relax, think of something.  Here I'll put =
on
the radio.  Maybe a baseball game." Oh God, oh God.  Slow down my tremor =
for
the stick shift, let my leg work the clutch, please oh please.
    We're at the Urgent Care Clinic in 8 minutes.  He's seen and =
injected
with adrenalyne.  We have to wait for the doctor to be sure the =
anaphylactic
shock is over.   We sit together in silence.  I watch the redness of his
skin fade, his eyes emerge as the swelling on his face recedes.  There =
is a
look of wonder in his eyes, wonder and fear.  His arms are folded =
tightly
across his chest.  I move closer to him and curl my arm around his =
shoulder.
We are alone in the waiting room.  His breathing is softening.  I have a
moment to reflect and am reminded of the time when we arrived home after =
the
final diagnosis which confirmed my Parkinson's Disease.  Clinging =
together
here, in the stark awareness of the suddenness of our frailty and =
mortality,
I am reminded of how he took me by the hand to the couch, and folded me =
in
his arms. Hours passed as the afternoon light faded away and the room
engulfed us in darkness. The still, silent presence of his body, the
closeness of his breath, the calming rhythm of his heart confirmed for =
me
then, as mine confirms for him now, that we will be together, with each =
other forever,
and beyond forever.

Barb Rager









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<DIV>&nbsp;</DIV>
<DIV>&nbsp;</DIV>
<DIV><FONT size=3D2>Dear Friends:</FONT></DIV>
<DIV><FONT size=3D2></FONT>&nbsp;</DIV>
<DIV><FONT size=3D2>&nbsp;&nbsp;&nbsp; I have given this thought before =
posting=20
it.&nbsp; I have sought and received reasonable advice from longer =
standing list=20
servers than myself.&nbsp; With their encouragement I am going =
ahead.&nbsp; The=20
reader should be cautioned, however, that this story hits quite hard at =
some of=20
the more negative realities of living with this disease.&nbsp; My =
husband and I=20
love each other very much.&nbsp; We don't want this disease to come =
between=20
us.&nbsp; In order for that not to happen, I have to do this: chronicle =
the=20
forces that are trying to tear us apart.&nbsp; Get under them, =
understand them,=20
and talk and talk and talk.&nbsp; To integrate this new understanding, I =
must=20
write.&nbsp; I offer this story, as I do all others, humbly.&nbsp; If it =
gives=20
you words for the &quot;unreachable feelings&quot; as one respondent =
told me, my=20
heart is full.&nbsp; If it leaves you untouched,&nbsp; or questioning =
why=20
someone would want to write about personal feelings, or raise issues =
that are in=20
no way reflective of yours, or angry because it has stirred up issues =
that were=20
well out of the way, and now they're back,&nbsp; I extend my hand in =
friendship=20
and ask forgiveness.</FONT></DIV>
<DIV><FONT size=3D2>
<DIV>&nbsp;</DIV>
<DIV>&nbsp;</DIV>
<DIV>Another Country<BR><BR>&nbsp;&nbsp;&nbsp; &quot;I was =
thinking,&quot; he=20
says cautiously.<BR>&nbsp;&nbsp;&nbsp; Oh, an original thought? I toss =
my angry=20
eyes into my lap.&nbsp; What would<BR>it be this time?&nbsp; A sports=20
score?&nbsp; An &quot;idea&quot; for renovation he has seen<BR>somewhere =

else?&nbsp; Maybe a rehash of something he has read in the paper, =
or<BR>heard on=20
the news. Perhaps The Simpsons were on last night.&nbsp; I'm all=20
ears.<BR>&nbsp;&nbsp;&nbsp; &quot;It was a kind of thought, sort of a =
quiet=20
thought.&quot;&nbsp;&nbsp; My husband's body<BR>is gleaming with =
sweat.&nbsp; He=20
keeps lifting his t-shirt to his face to wipe<BR>his eyes.&nbsp; Another =
of his=20
habits I detest.<BR>&nbsp;&nbsp;&nbsp; &quot;It came to me while I was =
mowing=20
the lawn a little while ago.&quot; Oh, so<BR>he thinks while mowing the=20
lawn.&nbsp; I always thought he did it just to add to<BR>the stuff he =
could do=20
without thinking, which kills most of his time. (A<BR>phrase he taught=20
me.)&nbsp; My right hand taps on the coffee table. It is not<BR>just =
from=20
impatience.&nbsp; My Parkinson's Disease has started the right =
hand<BR>tapping,=20
as it always does, with my first consciousness at dawn.&nbsp; So now =
I<BR>am an=20
impatient person with Parkinson's.&nbsp; Now my left leg is going.&nbsp; =

God,<BR>will you spit it out.&nbsp; My heavy eye lids lift and land hard =
on his=20
face.<BR>&nbsp;&nbsp;&nbsp; His eyes are averted.&nbsp; He is absorbed =
in a=20
thing he is doing with his<BR>fingers on the back of the couch.&nbsp; We =
never=20
look at each other any more.&nbsp; We<BR>sneak glances, then stray =
off.&nbsp;=20
Afraid to see what, I don't know.&nbsp; After 25<BR>years of marriage =
there's=20
not much we haven't seen of each other. Most of it<BR>not worth =
seeing.&nbsp;=20
Like now, his face draining of colour, his fingers<BR>fidgeting.&nbsp; =
When did=20
his hair go so grey?<BR>&nbsp;&nbsp;&nbsp; &quot;I was=20
wondering.....&quot;<BR>&nbsp;&nbsp;&nbsp; Oh God, get to the =
point.&nbsp; Why=20
can't we have a half decent conversation<BR>any more?&nbsp; Everything =
out of=20
his mouth lately has to go through this pause,<BR>hesitation, run it up =
the=20
flagpole, send out feelers.&nbsp; No wonder I have no<BR>time for =
this.&nbsp; I=20
mean it's like he doesn't trust me.&nbsp; Can't he just blurt<BR>it=20
out?<BR>&nbsp;&nbsp;&nbsp; &quot;Well??&quot;<BR>&nbsp;&nbsp;&nbsp;=20
&quot;.......if you loved me.&quot;<BR>&nbsp;&nbsp;&nbsp; My gaze falls =
back on=20
my lap.&nbsp; I corrall my right hand, and hold it to<BR>tame the tremor =
which=20
has suddenly become quite strong.&nbsp; It never used to be<BR>like =
this.&nbsp;=20
Twenty-five years ago we picked each other up on a 5 hour train<BR>ride =
from=20
Ottawa to Toronto.&nbsp; Five hours of finding out that the one =
thing<BR>we both=20
loved doing, the whole reason we had become teachers, =
lecturers,<BR>conference=20
convenors, and soon to be lovers, was because we loved to talk -<BR>to=20
ourselves, each other, anyone.<BR>&nbsp;&nbsp;&nbsp; I loved him=20
immediately.&nbsp; It was his eyes, no his spirit, no his jokes,<BR>no =
the way=20
he had coughed into his pipe just after he sat down, and spent<BR>the =
first few=20
minutes of our acquaintance putting out the sparks on his<BR>sweater =
with spit,=20
sssss....ssssss.......sssss.&nbsp; hoping I wasn't watching<BR>slyly out =
of the=20
corner of my eye.&nbsp; But I was.<BR>&nbsp;&nbsp;&nbsp; And barefoot on =
a beach=20
on Prince Edward Island, at dusk, conducted by a<BR>minister once =
defrocked=20
during the 1930's for his Communist activities, with<BR>fishermen and =
farmers=20
holding sunflowers, someone singing verse after verse<BR>of The Ballad =
of the=20
Flying Cloud - another sunken ship song - we took one<BR>another's hand =
and=20
committed ourselves to each other and to life and=20
love<BR>forever.<BR>&nbsp;&nbsp;&nbsp; God, what did we know?&nbsp; A =
couple of=20
flower children - peace and love, a<BR>Volkswagon Beetle, macrame, and =
plans,=20
dreams: a long loving life, children,<BR>old age, bringing each other =
cups of=20
tea in the garden.&nbsp; And setting quietly<BR>one day into our own =
brilliant,=20
peaceful sunset.&nbsp; No one counted on this.<BR>No one said anything =
about=20
Parkinson's Disease striking just one of us,<BR>closing the doors for=20
both.&nbsp; Hitting just one of us in the present, changing<BR>both our =
futures=20
irretrievably.&nbsp; Grabbing one of us in our prime, children<BR>gone, =
nest=20
being feathered for just the two of us, and now for what, so we<BR>can =
more=20
easily install a ramp? Or paste directions for the Heimlich<BR>manoevre =
on the=20
refrigerator?<BR>&nbsp;&nbsp;&nbsp; And making love like tigers.&nbsp; =
Does that=20
memory linger when you're making<BR>love to a stone?&nbsp; The tingle of =
a kiss=20
on the neck aggravates the hand<BR>tremor.&nbsp; The anticipation of =
excitement=20
and fulfillment is quickly replaced<BR>by the shame of being unworthy, =
spoiled=20
goods, no longer eligible for the<BR>holiness of physical love.&nbsp; Do =
I love=20
you?&nbsp; Do I love you?&nbsp; How can you ask<BR>that?&nbsp; I'm gone. =
I've=20
left for another country, a place for which neither<BR>you nor anyone =
else has a=20
passport.&nbsp; A place that is entirely lonely, a<BR>place that =
separates me=20
even from myself, where my body transforms daily<BR>into a shape with a =
purpose=20
that is not mine.&nbsp; And where the best of all<BR>possible help comes =
from=20
well-meaners in tones of, &quot;Buck up, lovey, no one<BR>said this =
would be=20
easy.&quot;<BR>&nbsp;&nbsp;&nbsp; Have I not, several times, suggested=20
divorce?&nbsp; That you would be happier<BR>with someone whole? That =
chronic=20
illness kills marriages by the dozens? That<BR>if we separated life =
would be=20
just a whole lot easier for us both: fewer<BR>conflicts, fewer decisions =
to=20
make, less need to conquer the gargoyles of<BR>intimacy that stand as=20
gatekeepers whenever we attempt to touch the pleasure<BR>in each other, =
or the=20
pain in our own selves. There would be fewer times for<BR>us to stand =
naked=20
before each other, and turn away from the memories of what<BR>was and =
our hopes=20
for what might have been, had I not brought this monster<BR>in here to =
live with=20
us.&nbsp; How can I receive your love in a heart that is<BR>fossilizing =
under=20
layers of worthlessness and fear? How can you ask if I<BR>love =
you?&nbsp; It is=20
you who cannot possibly love me.<BR>&nbsp;&nbsp;&nbsp; The morning seeps =
into=20
afternoon.&nbsp; The quiet has not broken between us.<BR>He goes out to =
kill=20
more time in the garden.&nbsp; I drift in and out of sleep on<BR>the=20
couch.&nbsp; A dreamy, unhurried time.&nbsp; My hand tremor floats away =
as=20
sleep<BR>approaches.&nbsp; It is a trance: waking - tremoring; sleeping =
- at=20
rest.&nbsp; Peace.<BR>These riveting changes in our lives to be decided =
later,=20
maybe never.....<BR>&nbsp;&nbsp;&nbsp; He's in the room.&nbsp; &quot;I =
just got=20
stung by a wasp.&nbsp; Can you see it?&nbsp; There,<BR>on my=20
leg.&quot;<BR>&nbsp;&nbsp;&nbsp; I arch my neck, oh yeah, wasp sting, =
too bad,=20
does it hurt.&nbsp; Going back<BR>to sleep now.&nbsp; Within moments =
he's=20
shouting, &quot;Barb, my skin, it's on fire, I<BR>can't stop =
scratching.&nbsp;=20
I'm swelling. Barb my lip, look at my lip, it's<BR>swelling! We've got =
to get to=20
a hospital.&nbsp; Barb you've got to help =
me!&quot;<BR>&nbsp;&nbsp;&nbsp; We're=20
in the car.&nbsp; His hands and feet, his mouth steadily =
expanding.<BR>His eyes,=20
his ocean blue eyes, disappearing inside balloons of skin.&nbsp; =
Welts<BR>are=20
rising on his arm.&nbsp; His breathing is becoming laboured.&nbsp; My =
God.&nbsp;=20
The<BR>traffic. The passage of happy aimless people driving lazily =
through a=20
sunny<BR>afternoon.&nbsp; Please, oh, God, please let me get=20
there.<BR>&nbsp;&nbsp;&nbsp; &quot;It's okay, honey, try to relax, think =
of=20
something.&nbsp; Here I'll put on<BR>the radio.&nbsp; Maybe a baseball=20
game.&quot; Oh God, oh God.&nbsp; Slow down my tremor for<BR>the stick =
shift,=20
let my leg work the clutch, please oh please.<BR>&nbsp;&nbsp;&nbsp; =
We're at the=20
Urgent Care Clinic in 8 minutes.&nbsp; He's seen and injected<BR>with=20
adrenalyne.&nbsp; We have to wait for the doctor to be sure the=20
anaphylactic<BR>shock is over.&nbsp;&nbsp; We sit together in =
silence.&nbsp; I=20
watch the redness of his<BR>skin fade, his eyes emerge as the swelling =
on his=20
face recedes.&nbsp; There is a<BR>look of wonder in his eyes, wonder and =

fear.&nbsp; His arms are folded tightly<BR>across his chest.&nbsp; I =
move closer=20
to him and curl my arm around his shoulder.<BR>We are alone in the =
waiting=20
room.&nbsp; His breathing is softening.&nbsp; I have a<BR>moment to =
reflect and=20
am reminded of the time when we arrived home after the<BR>final =
diagnosis which=20
confirmed my Parkinson's Disease.&nbsp; Clinging together<BR>here, in =
the stark=20
awareness of the suddenness of our frailty and mortality,<BR>I am =
reminded of=20
how he took me by the hand to the couch, and folded me in<BR>his arms. =
Hours=20
passed as the afternoon light faded away and the room<BR>engulfed us in=20
darkness. The still, silent presence of his body, the<BR>closeness of =
his=20
breath, the calming rhythm of his heart confirmed for me<BR>then, as =
mine=20
confirms for him now, that we will be together, with each other =
forever,<BR>and=20
beyond forever.</DIV>
<DIV>&nbsp;</DIV>
<DIV>Barb =
Rager<BR><BR><BR><BR><BR><BR><BR><BR></DIV></FONT></DIV></BODY></HTML>

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