This is a multi-part message in MIME format.
------=_NextPart_000_007B_01BDA511.6E5C1F00
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
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
------=_NextPart_000_007B_01BDA511.6E5C1F00
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<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> 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. 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. I am trying to go through this with my eyes =
open. 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> I am encouraged =
by those of=20
you who have thanked me for putting sometimes unreachable feelings into=20
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=20
dialogue, if it hits too close to the bone, or if it is totally opposite =
your=20
personal experience, I apologize. I do not wish to harm anyone in =
any=20
way. </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 =
size=3D2>++++++++++++++++++++++++++++++</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2> =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> 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> =20
"He's been drinking," my friend =
whispers.</FONT></FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2><FONT =
color=3D#000000> =20
"Possibly not. He may have Parkinson's." 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> =20
"No, I could smell whisky on his breath." 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> 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? Not =
tonight. I=20
don't want to have Parkinson's Disease tonight. Here, on this =
warm=20
city sidewalk, I want to shed that coat and lift my face to =
the=20
cooling drops from the recent rain, still splashing from the =
trees. =20
Tonight I have a future, I have the "illusion of control". =
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> =
The anticipation=20
of something special, joyous, thrilling has been out of my reach =
during the=20
two years since my diagnosis. My "morbid =
personality" (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. But tonight, in a restored concert =
hall, =20
I will attend a c.d. launch for an a capella choir. 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. </FONT></FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2><FONT =
color=3D#000000> The=20
venue is unusual in its construction of various levels for audience=20
seating. The stage area is a small raised platform, =
immediately in=20
front of which is an open space for patrons dancing. 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, 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. The sound of the music rises in volume as the time =
nears for=20
the entrance of the performers. I can see everything from =
where I am=20
sitting. I am with good friends. I am =
happy.</FONT></FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2><FONT=20
color=3D#000000></FONT> The performers introduce =
themselves=20
and their countries of origin. "I am from =
Togo!" =20
followed by great cheering from an audience who is more than ready =
to greet=20
them. "I am from Tanzania!" more =
cheering. =20
"I am from Canada, but my parents were born in=20
Barbados!" 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> 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. 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. Not in time at all to the beat of =
the=20
common heart everyone seems to be sharing, my hand is "stepping =
to the=20
sound of its own drummer". 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> The =
performers invite the=20
audience to come and join them on the dance floor. I long to =
go. =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. 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, "only you can take down the =
obstacles=20
facing you." I am out of sync with this crowd, with their =
youth,=20
vitality, their optimism; the confident stand they take facing =
life's=20
trials. Envy blurrs my vision. 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> The =
Parkinson's coat is=20
on me again as I stride with my friend back to the car. 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. =20
It calls forth from me an obligation to respond. There has =
been no=20
epiphany, no singular moment of blinding insight, no massive assault =
on my=20
self imposed inhibitions. My security remains with my fear =
rather than=20
risks freedom. </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2> There is no =
resolution to=20
this story. Real life does not tidy up like fiction. For =
now and=20
for the remainder of my life, Parkinson's Disease will be my body's=20
drummer. And I will step, when I can move at all, to its =
erratic=20
beat. </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2> .........But =
if I listen=20
hard, if I keep taking steps, awkward and uncertain though they may=20
be, 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> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Barb=20
Rager</FONT></DIV></BLOCKQUOTE></FONT></DIV></BODY></HTML>
------=_NextPart_000_007B_01BDA511.6E5C1F00--
