Chapter 38 - How One PWP (Person With Parkinsons) Speaks About His Fellow Traveller

I have copied this from a posting on the Parkinson's Information Exchange Network [PARKINSN@LISTSERV.UTORONTO.CA] that arrived in my inbox today.



An Open Letter to Parkinson’s disease
Terry Ogden
2/12/95

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 in tact.
I hate you and as long as I draw breath, you are my mortal enemy.
You came into my life unwelcome and uninvited.
You began as an inconvenience; a nuisance.
And I adjusted and went on, but you weren't satisfied.
A shaking hand, an unsteady grip, a stiffening gait was just your
introduction.
You eventually robbed me of the pleasure to be found in the simple act of a
casual stroll, or 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 encumbrance, 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 forbear 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 you do to me, in turn, hurts those I love.
And that I can not tolerate.
What did 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 can not 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 absolute primal human
need for dignity and an embraceable self-image.
That’s when I saw 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-righteousness.
If ever evil existed, it is you.
I now know how to fight you.
You glory in what I can not 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, nurture, 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 to a
whimpering and cowardly submission.
It is only fair to warn you that in my fight, there are many soldiers;
scientists, doctors, surgeons; who at this very moment are planning and
progressing towards your ultimate and irrevocable demise; caregivers, who, though not
afflicted 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.
We all hate you.
We will not fear you.
We defy you.
You can not last.
You will lose.
Now it’s time for you to be afraid.