The Fierce Urgency of Now

I can’t get his presentation out of my head. I am preoccupied with his message of urgency.

 

Bryn Williams, one of the opening ceremony speakers at the Second World Parkinson Congress in Glasgow, Scotland, sent out an urgent call to action.

 

Bryn was diagnosed with Parkinson's Disease in September 2007 at the age of 36.  He works as a Patent Attorney for Marks & Clerk and lives in Glasgow with his wife, Vicky and their two young daughters.

 

Bryn generously allowed me to reprint his presentation as follows:

 

Presentation at the World Parkinson Congress

Glasgow, Scotland

Opening Ceremony on September 28, 2010

By Bryn Williams

Copyright © 2010

Reprinted with permission

 

(The formatting is intentional, a pause at the end of every line)

Thank you Dr Lees for that kind introduction.

Good evening Ladies and Gentlemen. 

I am truly honoured
to have been given the opportunity
to address this
the Second World Parkinson Congress.

As you know
the patient address at the First Congress
was delivered by Michael J Fox.

I have been a fan of Michael's since I was a teenager. 

One of my first trips to the cinema
was with my sister Christine
to see
"Back to the Future" .

I thought it was a fantastic film.
 
As we left the cinema
I said two things to Christine.

The first
I have no problem with.

I said:
"Michael J Fox is so cool.”

The second statement
I am now not so sure about.

I said: 
“I wish I was just like him".
 
Four years on from the first Congress
I am delighted
to welcome you to Scotland.
Many of you are new to Glasgow
and I am sure you will enjoy your stay in this wonderful city.
Glasgow is known throughout the world
as a city of culture,
as a city of invention and industry,
and
as you will discover
a city inhabited by colourful,
humorous
and optimistic characters.
For me
Glasgow is a great place to have Parkinson's. 

It is also the ideal place
for our community of carers, clinicians, patients and researchers, 
to come together
and plot the demise
of this
horrific disease.

As a patient,
I extend a particularly warm welcome
to the clinicians and researchers.

In the past four years
you have been responsible
for the improved understanding of Parkinson's,
for the developments in methods of treatment,
and for the identification of compounds
with the potential
to eradicate this unforgiving condition.

One day,
you will cut the key
that will unlock our bodies.

On behalf of the patients and carers
I thank you wholeheartedly for your work.

All of us arrive at this Congress
with a common goal.

To improve the lives of people with Parkinson's disease.

Everybody in this room has something to contribute.
The clinicians and researchers
bring extraordinary science
and potential therapies
to be discussed and dissected.

But this
Is not just a science meeting.

This
is a Congress.

This
is a gathering
of the whole Parkinson's community
and the patients and carers
bring an extraordinary contribution too.

We bring the experience,
we bring the knowledge,
and
we
bring
the passion
that comes
from living with this disease.

The value of this experience, knowledge and passion should not be underestimated.
The patients and carers bring something else to this Congress.
Something
that only a person
who lives with this disease
day in
day out
can truly understand.

Urgency

What Martin Luther King referred to
as the fierce
urgency
of now.

I’ve only been diagnosed
a few short years
and already
I have had enough.

My wife
and my two little girls
have had enough.

My friends
who have been walking miles,
running miles,
and swimming miles
to raise awareness
have seriously had enough.

Their aching limbs
and cramped feet
long for a cure almost as much as mine do.

A cure that’s been sitting tantalizingly
below the horizon since before I was diagnosed.

A sunrise waiting to happen.

Every day
I ask myself what can I do?

As a group of patients and carers
what can we do?

What can we offer
to advance the work
of you,
the clinicians and researchers?

We can offer you commitment,
we can offer you cooperation
and we can offer you collaboration.

Clinicians and researchers
we can be your Advocates.

As Advocates we can dispel the myths
of Parkinson's.
The outside world believes this is a disease of elderly. 
We know it isn't.

The outside world believes there are drugs
that will see you serenely
through your life. 
We know there aren't.

The outside world believes the cure
is five years away. 
We know people who were told that 30 years ago.

As Advocates
we can mobilise ourselves
to deliver volunteers
for clinical trials
more quickly.

As Advocates
we can become positive nuisances;
pestering politicians,
badgering budget holders
and nagging decision-makers.

As Advocates
we can express ourselves
and the concerns of our community
in a way which will deliver results.
As a community of Parkinson's Advocates
we can be a resource for you
the clinicians & researchers.

But to be effective
we need your commitment,
we need your cooperation
And we need your collaboration.
  
We need your support
and your encouragement
to bring the value
of our experience
knowledge
and passion to bear.

We need your guidance
to plan our journey,
to point us in the right direction,
and to propel us to the destination
all of us here
want to reach.

A partnership of equals.

This Congress
is not just for the scientists to demonstrate
what they hope to do for the patients,
it is also an opportunity
for us
the patients
to demonstrate what we can do to eradicate Parkinson's.

If the delegates whose life’s work is Parkinson's,
collaborate with those who live with Parkinson's,
together we can deliver a future without Parkinson's.

But the road must start here.

The opportunity exists this week. 
In this city. 
At this
Congress.

Urgency. Ladies and gentlemen,
Urgency.
The fierce urgency of now.
Now is the time to realise the promises of science.

Now is the time to bring our urgency to bear
and deliver a future of hope for the victims of this disease.

Now is the time
for a steady hand,
a strong voice
and a keen sense of smell
for the opportunities that await us.

A steady hand.

A strong voice.

A keen sense of smell.

I had them once.

I want them back.

Welcome to Scotland.
Welcome to Glasgow.
Welcome
to the World Parkinson Congress.

Thank you very much.

 

To learn more about Bryn Williams (AKA Wobbly Williams) check out his website  at:http://www.wobblywilliams.com

Comments

[Valerie Graham]

Thanks, Kate! I am as moved now reading Bryn's heartfelt and powerful message in print as I was sitting in the audience listening to his remarks during the Opening Ceremonies of the 2nd WPC in Glasgow last Tuesday evening. As Bryn so eloquently states, each of us with Parkinson's has something valuable to contribute to the battle to defeat this disease. The physicians, scientists and researchers cannot do it alone-- we, as patients, have a responsibility to ourselves and or communities to reassert control over the direction our lives take. We may have no say over whether we contract PD, but we do have control over how we respond to its relentless and insidious impact not only on our lives, but those of our families, friends, colleagues and fellow citizens.

There are countless ways to contribute-- attend or lead a support group; participate in a clinical research trial; raise public awareness and/or funds for research by participating in the Unity Walk or similar event; become an advocate on behalf of the Parkinson's Action Network or other grassroots advocacy organization and contact your local and national legislators;-- but take action NOW! In my experience, a renewed sense of purpose and meaning in life is the greatest gift you can give yourself. It is as empowering, if not more so, as any medication or therapy yet discovered!!