A while back, a poem "An Open Letter to Parkinsons" was posted (copy shown
below), with the author listed as Terry Ogden. I don't have Terry's e-mail
address, so I'm hoping Terry reads this and responds or maybe a list member
know Terry and can forward it to her.
I'm seeking Terry's permission to send the poem to a couple newspapers or
other public media sources (magazines radio, TV show) to request that they
show it to the public here in Arizona. I believe it would be helpful to the
cause (publicize the need for public awareness and support for the Udall
bill).
I'm sorry for not writing to you directly, Terry. I rarely get through to
read all the Parkinsn List postings anymore. I awkwardly skim the author
list, subject line and sometimes the first line or two of the body then try
to copy things I might be able to read later. Many times I can't get to that
either and just start deleting. In that process, your poem caught my eye and
I finally took the time to read it. As a PD-battle-worn-Parkie, I strongly
relate to it, as I'm sure most of us Parkies do. The general public may not,
but I'd like to give them the try. May I have your permission to do so?
Thank you for having composed such a beautiful piece and for having posted it
to share with us.
Maryhelen Davila
[log in to unmask]
Phoenix Arizona
Diagnosed 8 years ago at 37 years in 1989
XXXXXXXXXXXXX
OPEN LETTER TO PARKINSON'S DISEASE
By Terry Ogden
I know you.
It took some time and a lot of pain,
But now I know you and what you are and what you do.
And tragically - how you do it.
I hate you.
I say this without rage and not out of an emotional fever.
I say it coldly, logically, and with all my faculties intact.
I hate you and for as long as I draw breath, you are my mortal enemy.
You came into my life uninvited and unwelcome.
You began as an inconvenience - a nuisance.
I adjusted and went on, but you weren't satisfied.
A shaking hand, an unsteady grip, a stiffening gait were just your
introduction.
You eventually robbed me of the pleasure to be found in the simple act of a
casual
stroll, writing a letter or taking a drive.
Still I tried to adjust, abide and endure.
But the irritation became an obstacle and the obstacle became a torment.
What had begun as a physical encumberance, all too soon, became a
way of life.
Ever-present, all encompassing, affecting every moment of every day.
And at the end of each day, you deprived me of the sleep that might have
given me strength to face the next.
I am not alone in my struggle.
I have wonderful friends who understand all that they can and bear what
they
cannot.
I have a loving and constantly supportive family who amaze me with an
unending well of compassion, patience and stamina.
And I have a life partner who is my lover, my best friend, my strength, and
now
my partner in pain, because she must bear my suffering but without the refuge
she gives me.
The passion with which I love my family is infinite and unbounded.
It never diminishes and grows with each passing hour.
And in kind, because you seek to injure and torment my family,
With this same unbounded and infinite passion do I hate you.
What you have done to me would be more than enough to deserve my hatred,
but you see, all that you do to me, in turn, hurts those I love.
And that I cannot tolerate.
What do you take from me?
If I might overlook the loss of productivity and recreation,
If I could forget the physical pain and the endless hours wasted in repeated
attempts to accomplish the simplest of tasks,
There is another assault that I cannot ignore.
In the taking of my simple dignities you have depleted my tolerance.
In taking away my power and clarity of speech, you rob me of my need to
communicate,
to express myself, to teach and to learn. When you block my ability to dress
myself, feed
myself and to provide for myself the basic needs of each day you steal from
me the
absolutely primal human need for dignity and an embraceable self-image.
That's when I see you for what you truly are.
After turning me into a physical caricature of the person I once was...
After taking away my mobility, productivity and creative abilities...
After altering the very nature of how I led my life, you assaulted the last
remaining vestige of
the quality of my life - my simple human dignity.
That's when I knew you for what you are.
You are a BULLY and indeed , all bullies are cowards!
When I recognized you for the cowardly son-of-a-bitch that you are, that's
when I gave
myself permission to hate you.
Hate can be destructive and counter-productive and as such should usually be
avoided,
but when we encounter evil, injustice and cruelty, we are entitled to hate
with an unbridled
self-rightousness,
If ever evil existed, it is you.
I know now how to fight you.
You glory in what I cannot do, in what you can deprive me of.
So, I will fight you with all the can-dos in my arsenal.
If I get out of bed - you lose!
If I get dressed - you lose!
If I can produce, create, nuture, learn, grow or be of help to anyone,
anywhere - YOU LOSE!!
It is a battle of one hour at a time and each hour brings me the chance to
look you in the
eye and say with all the voice I can muster: "I DO NOT FEAR YOU"!
I know you now for a coward and a bully and I know that, as such,
you thrive and grow on fear, despair and hopelessness.
But this is where your power ends and mine begins.
My courage and hope can only be taken by you if I give them to you.
I control these and as long as I live, they will be steadfast and
ever-strengthening
because I know how badly you desire this last bastion of my sanity and
self-worth.
Hope and courage, these are my weapons and with them I plan to beat you into
a
whimpering cowardly submission.
It is only fair to warn you that in my fight there are many soldiers.
Scientists, doctors and surgeons who at this very moment are planning and
progressing
towards your ultimate and irrevocable demise.
Caregivers, who though unafflicted themselves, live with the suffering
through their love and
stand shoulder to shoulder with their loved ones to hasten your defeat.
And across the world, millions of my brothers and sisters you have
victimized, tormented
and abused.
And we all hate you!
We will not fear you. We defy you!
You cannot last. You will lose!
Now it is time for you to be afraid.
