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INTRODUCTION
Every day, those with RSD/CRPS soldier on and live their lives
despite chronic pain. This page is a tribute to those who are
doing something special with their lives such as helping others
or spreading the word on this disease. Some have a loved one
with RSD/CRPS. Some lost their loved one. We commend them all
for their fortitude, perseverance and courage. We salute them
for carrying on despite the numerous obstacles they face every
day, while living with this disabling disorder.
They are a tribute to the breadth and strength of the human
spirit.
May they uplift us all!
Profiles:
TERRIFIC TEEN
Ayala is a wonderful, resilient (recently turned) teenager living
near Ottawa. During the first minute of a floor hockey game at
school when she was 10 years old, she was hit with a slapshot
of the puck to her knee, which was the trigger to her RSD. Ayala
and her family has had a roller coaster ride, like many other
children and adults, with finally getting the proper diagnosis,
searching for the best available treatment, and in receiving understanding
from her peers and relatives.
Aya is rising above her pain, and has dedicated herself to creating
a web site with a positive outlook that leaves visitors to her
site with a sense of hope and inspiration. Her site, has brought
attention to and created a greater awareness of RSD through interviews
in major Canadian and local newspapers and CBC Radio.
Ayala plans to update her site and is the midst of compiling
and writing a book of poetry and songs (as well as a novel in
the works!) and intends on using its proceeds toward RSD research.
UPDATE APRIL 2002: Ayala Ravek will be receiving the Ontario
Junior Citizen of the Year Award in April from the Lt. Governor
of Ontario.Congratulations Aya!!! We are very proud of you!
As Aya likes to quote, "Positive thinkers feel the intangible,
see the invisible, and achieve the impossible."
At the TEEN CORNER, feel free to e-mail her with any questions
or ideas. To visit her site, please visit our links page.
OUR POET PHYLLIS
Phyllis has RSD and lives in Oceanside, CA. She is married to
an engineer, has 2 sons, 2 grandsons and 1 granddaughter. Her
greatest love is interior decorating and she also enjoys floral
arranging ie. weddings, parties etc. Since being diagnosed with
RSD, her new profession is 'therapy' mental and physical.
" I write now because it helps me to understand myself and
it gives me a 'release' of sorts. I can write what I feel, no
one has to listen to me complain and you only read my work if
you want to. I have recently heard from a few people who have
read my work; their comments were the same, "'You wrote just
what I am feeling.'" I started keeping a diary at the request
of my psychologist, who encouraged me to continue. I began putting
short poems into my diaries to him. Before I knew it, I had written
30 poems. Writing seems to give me a purpose."
UPDATE: Two of Phyllis' poems will
be published this year. Congratulations, Phyllis!
A CONVERSATION
WITH PAIN
by Phyllis Van Wormer
Pain, why do you pierce and poke at my poor body.
You have plagued me for years, I ask you now, go please.
I searched for a palace, tall and proud -- I needed a pristine
dwelling
in which to store my power.
Palace, pristine, proud, you must be mistaken? Those words would
never
describe me.
Pain, leave me now, for I tire of thee.
Remember, years ago, the very first time you acknowledged my
existence.
You were tall and proud, your body a palace of pale pink.
Your soul was pristine.
You were the prize I sought, the palace I conquered.
After all, you were promised to me.
Yes Pain, I remember, with your cruelty you plundered my body
and
pillaged my bones.
Life seeped through my pores as my blood flowed like a river,
pooling
around body. As I gasped for air, the warm red fluid filled my
lungs.
Oh, I struck you hard, I did. I took over your body as you began
to
breathe your last breath. It pleasured me so, to conquer one so
pure.
I was praised highly for that fete.
I stood over you proudly, each time you grimaced, or when a tear
rolled down your cheek.
Your pallor was no longer pink, but shallow, like plaster before
being kissed by the sun.
But I fought back, Pain! For prolonged moments you were gone.
I remember floating in a garden of blue; rays of light poured
from beyond.
It was then I heard a far away voice, it called out to me.
A pitcher of pure gold appeared; it contained a scant bit of powerful
brew. It was all I needed to escape thee, Pain.
Piece by piece, I rebuilt my body and my life.
It was plain to see, I became more powerful than thee.
Yes, you took control-- but remember I returned the next year.
You paid a handsome price for besting me. I pounded and pelted
you with sorrow and hurt.
Your prior victory crushed, I proudly preened while my peers bestowed
me with their cheers.
I remember how you pierced my heart and punctured my soul.
My sweet child was sacrificed to give you pleasure.
You plucked her from my womb --alas, that was the price I paid
for besting you.
Yes-- I saw you weeping-- you cried from the punishment I bestowed
upon you. Your heart pined for the pretty babe.
But once again I rose up, I found more power; I fought you off.
As long as I could keep you from your pleasure -- I found peace.
I've proclaimed you my palace. There is no part of you strong
enough to fight me now.
My pleasure is your plight; I will see you undone.
Please pain, I've suffered enough. You are constant now, never
ending
in your pursuit to punish me. Your power has plainly out done
me. I've
protection from your wrath.
And oh, the pleasure! You are my prize. So proud am I now that
your
future is mine.
Pierce through my body if you must, pound on me with all your
might.
I promise you now --you will not take my life --you cannot have
my soul.
Struggle if you must --but like a pest, I shall remain.
Is there no compromise, Pain? I need purpose in my life. You
have
pillaged me so; must you now devour all that I am? Have you no
passion,
why must I plead for a moment of peace?
I offer you a challenge --- ignore me if you can. You claim to
have
power--use it, push me away.
I accept your challenge, Pain. My life will be rebuilt --I will
ignore
you. Each breath I take will inhale power --and exhale Pain.
Phyllis can be reached at: phyllisvw@hotmail.com
UNSUNG HERO
For many years, Eric has been a well known crusader for RSD/CRPS.
Based in Massachusetts, Eric has sent out information, contacted,
and arranged for medical assistance for countless people around
the globe. At the International RSD Foundation, he quietly works
behind the scenes to help those with RSD get the help they need.
His tireless efforts have resulted in three excellent RSD conferences
in 1995, 1997 and 2000. Recently, he coordinated the Winter Medical
Conference (Nov.30-Dec.2,2000) in Orlando, Florida. A year and
a half in preparation, the conference was well attended by 160
patients and 68 professionals. It was well organized, informative
and of great benefit to both doctors and patients. Eric is also
assistant to Dr Hooshmand, a well known neurologist who treats
RSD/CRPS patients.
We wish to acknowledge Eric's many years of hard work to promote
awareness, educate the medical community, assist patients and
promote research even though he has longstanding RSD. Eric is
proof that having RSD means one can still accomplish great things.
He continues to be an inspiration to us all.
Please visit the International RSD Foundation at
our links page.
MY DAD: TONY
This wonderful letter was written by Tony's son and received
by PARC in May 2001:
I would like to nominate my Dad. Since I was 6 years old I been
living with my dad. He has rsd in his arm and now in his leg .He
has had it for over ten years now. My dad is the best dad. He
is the coach of my socker team. He also is a member of the parents
asociation at my boys and girls club in London. My dad is the
person that started single fathers rights groups in London and
has helped lots of dads get custody of their children. My dad
is always in pain and can't do lots of things he wants to but
he does not let me know how bad it hurts and he is always here
for me when I need him. My dad has information on his web site
to help other people with rsd and single fathers learn all they
can. My dad is the best dad in the world. He helps all people
that need his help and never asks for anything back. He just wants
to help people learn.
Jacob McPhee I am 10
Editor's Note: Tony has been the mastermind behind the PARC
Awareness Campaign to educate Canadian doctors about RSD. We thank
him for contributing countless hours to the CD project which is
currently in Phase 1. Way to go Tony!
LISA SHORE
A memorial site for 10-year-old Lisa Shore, whose death at the
Hospital for Sick Children in Toronto, Canada on October 22, 1998,
was found to be a homicide by a coroner's inquest jury. Lisa died
hours after going to hospital in severe pain from a flare-up of
RSD. The website is an effort by Lisa's family to seek justice
for Lisa's wrongful death.
NOTE: This site is temporarily off line.
NOMINATIONS: WE KNOW YOU
ARE OUT THERE.....
If you know of anyone who is very special person with RSD, (or
a loved one), and deserves to be recognized for their talent or
work he/she does, please tell us about this unique person and
why he/she deserves recognition.
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