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Dear friends:
    I am grateful to you for the warm reception you have given my little =
vignettes which I have posted here from time to time.  The writing of =
these stories helps me to integrate and stay conscious of the process of =
accepting the presence of this disease in my life.   I am trying to go =
through this with my eyes open.  If there are any blessings to be had, I =
want to be there for them.
    I am encouraged by those of you who have thanked me for putting =
sometimes unreachable feelings into words.  If my efforts are of help to =
some of you, I am glad to know it.  For others of you who do not feel =
comfortable with this type of dialogue, if it hits too close to the =
bone, or if it is totally opposite your personal experience, I =
apologize.  I do not wish to harm anyone in any way.=20

++++++++++++++++++++++++++++++
   =20
        The elderly man who has been creeping towards us, as we step =
through the rain washed streets, stops and averts his rigid body to let =
us pass.
        "He's been drinking," my friend whispers.
        "Possibly not.  He may have Parkinson's."  She's been by my side =
steadily throughout this whole ordeal, and I still have to remind her.
        "No, I could smell whisky on his breath." She is confident in =
her assessment of the man and his self-conscious, restrained movement.
        I want to say that taking comfort in a drink in a bar down the =
street does not preclude a chronic illness, ah but why bother?  Not =
tonight.  I don't want to have Parkinson's Disease tonight.  Here, on =
this warm city sidewalk,  I want to shed that coat and lift my face to =
the cooling drops from the recent rain, still splashing from the trees.  =
Tonight I have a future, I have the "illusion of control". Tonight I =
will have fun.
        The anticipation of something special, joyous, thrilling has =
been out of my reach during the two years since my diagnosis.  My =
"morbid personality" (a term I picked up while scanning a profile of the =
Parkinson's patient, coined by who, I wonder, Mary Shelley?) has =
steadily eroded optimistic views of my future, either long or short =
term, and has regularly served up hopeless visions of impairment.  But =
tonight, in a restored concert hall,  I will attend a c.d. launch for an =
a capella choir.  The thirty or so members, all of African decent, sing =
the multi harmonic music from Africa and the African diaspora, to the =
powerful drum rhythms of a vibrant and brawny musician known as The =
Mighty Popo. =20
        The venue is unusual in its construction of various levels for =
audience seating.  The stage area is a small raised platform, =
immediately in front of which is an open space for patrons dancing.  =
Around this space, and on small platforms for completely uninterrupted =
viewing, are clusters of tables with chairs where we sip our drinks, =
laugh and fall into the feelings of relaxation, then euphoria,  People =
steadily arrive to swell the standing spaces between the tables. The =
dimly coloured lights flicker and cast shadows as some move to the dance =
floor to warm up before the show.  The sound of the music rises in =
volume as the time nears for the entrance of the performers.  I can see =
everything from where I am sitting.  I am with good friends.  I am =
happy.
        The performers introduce themselves and their countries of =
origin.  "I am from Togo!"  followed by great cheering from an audience =
who is more than ready to greet them.   "I am from Tanzania!"  more =
cheering.  "I am from Canada, but my parents were born in Barbados!"   =
The stamping and shouting takes over the room in a spirited bonding as =
The Mighty Popo pounds the drum for the first number.
        For some period of endless time I am swept away into the =
vitalitiy of the music and the electric precision of the choreography of =
the singers and the high kicking, hair snapping gyrations of the two =
laughing Zulu dancers.  It is only as the show begins to wind down that =
I become aware of my tremoring hand, tapping out its own rhythm.  Not in =
time at all to the beat of the common heart everyone seems to be =
sharing, my hand is "stepping to the sound of its own drummer".  While =
Henry David Thoreau had no notch of a thought of Parkinson's Disease =
when he referred so poetically to the rights of us all to follow our own =
lead, it is the irony of it when applied to my own physical condition =
which speaks to me now.
        The performers invite the audience to come and join them on the =
dance floor.  I long to go.  My head and shoulders lean forward in a =
yearning to, just for a minute, be one of them, graceful, poised, =
strongly marking feet, elegantly arching arms and backs.  The message =
both spoken and sung by the performers throughout the evening has been =
one of liberty, freedom, raising your head in pride, laughing at the =
sky, "only you can take down the obstacles facing you."  I am out of =
sync with this crowd, with their youth, vitality, their optimism;  the =
confident stand they take facing life's trials.   Envy blurrs my vision. =
 My own self consciousness drives me farther away, and once again I am =
alone in my despair and self pity, watching with my nose pressed against =
the glass.
        The Parkinson's coat is on me again as I stride with my friend =
back to the car.  I am bewildered, unsettled by the message of joy in =
the face of oppression from these young people. The beat of their own =
drummer echoes in my ears.  It calls forth from me an obligation to =
respond.  There has been no epiphany, no singular moment of blinding =
insight, no massive assault on my self imposed inhibitions.  My security =
remains with my fear rather than risks freedom.=20
        There is no resolution to this story.  Real life does not tidy =
up like fiction.  For now and for the remainder of my life, Parkinson's =
Disease will be my body's drummer.  And I will step, when I can move at =
all, to its erratic beat.=20
        .........But if I listen hard, if I keep taking steps, awkward =
and uncertain though they may be,   if I just keep going, I may someday =
hear my heart beating with the spirit of the Mighty Popo.
   =20
    Barb Rager

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<HTML>
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<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Dear friends:</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>&nbsp;&nbsp;&nbsp; I am grateful to =
you for the=20
warm reception you have given my little vignettes which I have posted =
here from=20
time to time.&nbsp; The writing of these stories helps me to integrate =
and stay=20
conscious of the process of accepting the presence of this disease in my =

life.&nbsp;&nbsp; I am trying to go through this with my eyes =
open.&nbsp; If=20
there are any blessings to be had, I want to be there for =
them.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>&nbsp;&nbsp;&nbsp; I am encouraged =
by those of=20
you who have thanked me for putting sometimes unreachable feelings into=20
words.&nbsp; If my efforts are of help to some of you, I am glad to know =

it.&nbsp; For others of you who do not feel comfortable with this type =
of=20
dialogue, if it hits too close to the bone, or if it is totally opposite =
your=20
personal experience, I apologize.&nbsp; I do not wish to harm anyone in =
any=20
way.&nbsp;</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</DIV>
<DIV><FONT color=3D#000000 =
size=3D2>++++++++++++++++++++++++++++++</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>&nbsp;&nbsp;&nbsp;=20
<BLOCKQUOTE=20
style=3D"BORDER-LEFT: #000000 solid 2px; MARGIN-LEFT: 5px; PADDING-LEFT: =
5px">
    <DIV><FONT color=3D#000000 size=3D2><FONT =
color=3D#000000>&nbsp;&nbsp;&nbsp; The=20
    elderly man who has been creeping towards us, as we step through the =
rain=20
    washed streets, stops and averts his rigid body to let us=20
    pass</FONT></FONT><FONT color=3D#000000 size=3D2><FONT=20
    color=3D#000000>.</FONT></FONT></DIV>
    <DIV><FONT color=3D#000000 size=3D2><FONT =
color=3D#000000>&nbsp;&nbsp;&nbsp;=20
    &quot;He's been drinking,&quot; my friend =
whispers.</FONT></FONT></DIV>
    <DIV><FONT color=3D#000000 size=3D2><FONT =
color=3D#000000>&nbsp;&nbsp;&nbsp;=20
    &quot;Possibly not.&nbsp; He may have Parkinson's.&quot;&nbsp; She's =
been by=20
    my side steadily throughout this whole ordeal, and I still have to =
remind=20
    her.</FONT></FONT></DIV>
    <DIV><FONT color=3D#000000 size=3D2><FONT =
color=3D#000000>&nbsp;&nbsp;&nbsp;=20
    &quot;No, I could smell whisky on his breath.&quot; She is confident =
in her=20
    assessment of the man and his self-conscious, restrained=20
    movement.</FONT></FONT></DIV>
    <DIV><FONT color=3D#000000 size=3D2><FONT =
color=3D#000000>&nbsp;&nbsp;&nbsp; I=20
    want to say that taking comfort in a drink in a bar down the street =
does not=20
    preclude a chronic illness, ah but why bother?&nbsp; Not =
tonight.&nbsp; I=20
    don't want to have Parkinson's Disease tonight.&nbsp; Here, on this =
warm=20
    city sidewalk,&nbsp; I want to shed that coat and lift my face to =
the=20
    cooling drops from the recent rain, still splashing from the =
trees.&nbsp;=20
    Tonight I have a future, I have the &quot;illusion of control&quot;. =
Tonight=20
    I will have fun.</FONT></FONT></DIV>
    <DIV><FONT color=3D#000000 size=3D2><FONT =
color=3D#000000></FONT></FONT><FONT=20
    color=3D#000000 size=3D2><FONT color=3D#000000>&nbsp;&nbsp;&nbsp; =
The anticipation=20
    of something special, joyous, thrilling has been out of my reach =
during the=20
    two years since my diagnosis.&nbsp; My &quot;morbid =
personality&quot; (a=20
    term I picked up while scanning a profile of the Parkinson's =
patient, coined=20
    by who, I wonder, Mary Shelley?) has steadily eroded optimistic =
views of my=20
    future, either long or short term, and has regularly served up =
hopeless=20
    visions of impairment.&nbsp; But tonight, in a restored concert =
hall,&nbsp;=20
    I will attend a c.d. launch for an a capella choir.&nbsp; The thirty =
or so=20
    members, all of African decent, sing the multi harmonic music from =
Africa=20
    and the African diaspora, to the powerful drum rhythms of a vibrant =
and=20
    brawny musician known as The Mighty Popo.&nbsp; </FONT></FONT></DIV>
    <DIV><FONT color=3D#000000 size=3D2><FONT =
color=3D#000000>&nbsp;&nbsp;&nbsp; The=20
    venue is unusual in its construction of various levels for audience=20
    seating.&nbsp; The stage area is a small raised platform, =
immediately in=20
    front of which is an open space for patrons dancing.&nbsp; Around =
this=20
    space, and on small platforms for completely uninterrupted viewing, =
are=20
    clusters of tables with chairs where we sip our drinks, laugh and =
fall into=20
    the feelings of relaxation, then euphoria,&nbsp; People steadily =
arrive to=20
    swell the standing spaces between the tables. The dimly coloured =
lights=20
    flicker and cast shadows as some move to the dance floor to warm up =
before=20
    the show.&nbsp; The sound of the music rises in volume as the time =
nears for=20
    the entrance of the performers.&nbsp; I can see everything from =
where I am=20
    sitting.&nbsp; I am with good friends.&nbsp; I am =
happy.</FONT></FONT></DIV>
    <DIV><FONT color=3D#000000 size=3D2><FONT=20
    color=3D#000000></FONT>&nbsp;&nbsp;&nbsp; The performers introduce =
themselves=20
    and their countries of origin.&nbsp; &quot;I am from =
Togo!&quot;&nbsp;=20
    followed by great cheering from an audience who is more than ready =
to greet=20
    them.&nbsp;&nbsp; &quot;I am from Tanzania!&quot;&nbsp; more =
cheering.&nbsp;=20
    &quot;I am from Canada, but my parents were born in=20
    Barbados!&quot;&nbsp;&nbsp; The stamping and shouting takes over the =
room in=20
    a spirited bonding as The Mighty Popo pounds the drum for the first=20
    number.</FONT></DIV>
    <DIV><FONT color=3D#000000 size=3D2>&nbsp;&nbsp;&nbsp; For some =
period of=20
    endless time I am swept away into the vitalitiy of the music and the =

    electric precision of the choreography of the singers and the high =
kicking,=20
    hair snapping gyrations of the two laughing Zulu dancers.&nbsp; It =
is only=20
    as the show begins to wind down that I become aware of my tremoring =
hand,=20
    tapping out its own rhythm.&nbsp; Not in time at all to the beat of =
the=20
    common heart everyone seems to be sharing, my hand is &quot;stepping =
to the=20
    sound of its own drummer&quot;.&nbsp; While Henry David Thoreau had =
no notch=20
    of a thought of Parkinson's Disease when he referred so poetically =
to the=20
    rights of us all to follow our own lead, it is the irony of it when =
applied=20
    to my own physical condition which speaks to me now.</FONT></DIV>
    <DIV><FONT color=3D#000000 size=3D2>&nbsp;&nbsp;&nbsp; The =
performers invite the=20
    audience to come and join them on the dance floor.&nbsp; I long to =
go.&nbsp;=20
    My head and shoulders lean forward in a yearning to, just for a =
minute, be=20
    one of them, graceful, poised, strongly marking feet, elegantly =
arching arms=20
    and backs.&nbsp; The message both spoken and sung by the performers=20
    throughout the evening has been one of liberty, freedom, raising =
your head=20
    in pride, laughing at the sky, &quot;only you can take down the =
obstacles=20
    facing you.&quot;&nbsp; I am out of sync with this crowd, with their =
youth,=20
    vitality, their optimism;&nbsp; the confident stand they take facing =
life's=20
    trials.&nbsp;&nbsp; Envy blurrs my vision.&nbsp; My own self =
consciousness=20
    drives me farther away, and once again I am alone in my despair and =
self=20
    pity, watching with my nose pressed against the glass.</FONT></DIV>
    <DIV><FONT color=3D#000000 size=3D2>&nbsp;&nbsp;&nbsp; The =
Parkinson's coat is=20
    on me again as I stride with my friend back to the car.&nbsp; I am=20
    bewildered, unsettled by the message of joy in the face of =
oppression from=20
    these young people. The beat of their own drummer echoes in my =
ears.&nbsp;=20
    It calls forth from me an obligation to respond.&nbsp; There has =
been no=20
    epiphany, no singular moment of blinding insight, no massive assault =
on my=20
    self imposed inhibitions.&nbsp; My security remains with my fear =
rather than=20
    risks freedom. </FONT></DIV>
    <DIV><FONT color=3D#000000 size=3D2>&nbsp;&nbsp;&nbsp; There is no =
resolution to=20
    this story.&nbsp; Real life does not tidy up like fiction.&nbsp; For =
now and=20
    for the remainder of my life, Parkinson's Disease will be my body's=20
    drummer.&nbsp; And I will step, when I can move at all, to its =
erratic=20
    beat.&nbsp;</FONT></DIV>
    <DIV><FONT color=3D#000000 size=3D2>&nbsp;&nbsp;&nbsp; .........But =
if I listen=20
    hard, if I keep taking steps, awkward and uncertain though they may=20
    be,&nbsp;&nbsp; if I just keep going, I may someday hear my heart =
beating=20
    with the spirit of the Mighty Popo.</FONT></DIV>
    <DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</DIV>
    <DIV><FONT color=3D#000000 size=3D2>Barb=20
Rager</FONT></DIV></BLOCKQUOTE></FONT></DIV></BODY></HTML>

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