“In order to have a Life of Purpose you need
to have a Purpose
in Life. I am Living with ALS, I am not dying of ALS. After all,
life itself is terminal.”
in Life. I am Living with ALS, I am not dying of ALS. After all,
life itself is terminal.”
I had the
privilege to meet Derek Walton back in 2010, when I was invited to join a
team of volunteers to organize the SkyDive Fundraising for A.L.S. event that
Derek had founded the previous year. As a P.S.W., Mark had been one of his care-givers for several years, but I had not personally met him.
In May,
2002, Derek was diagnosed with ALS, commonly known as Lou Gehrig’s Disease - a rapid, progressive disease that attacks the nervous system and eventually leads to total paralysis.
We were all
gathered in the meeting room awaiting Derek and Diane, both of whom I had not
yet met. Diane was unwell that evening and so was unable to join us, but as soon as Derek entered in his motorized
wheelchair, I knew I was in the presence of a remarkable man. His whole
attitude and demeanour totally inspired and uplifted me, and I went home
feeling a sense of awe at the courage of the human spirit.
When I had the
honour of meeting Diane at the event itself in August of that year, I felt the same sense of wonder.
She is a woman of determination, strength, and tremendous compassion – laced with
a wicked sense of humour and a good dose of common sense. It is easy to see why
Derek has been able to sustain his positive attitude when he has a person like
Diane at his side.
About half of all people affected with ALS live at least three or more years after diagnosis. 20% live five years or more; up to 10% will live more than ten years. The average life expectancy when diagnosed is 2-5 years. Twelve years on, Derek is part of the 10% and, in my opinion, it's his faith and positive attitude, together with Diane's loving support that accounts for the blessing of his longevity.
It would be
easy for Derek to focus upon what he cannot do – and I’m sure that, as this
disease progresses, the obvious cannot be ignored. However, Derek has found the
secret of focusing upon what he CAN do, and therein lies his strength and
ability to inspire others to face the various challenges that are common to us
all. He says that, with this diagnosis, he began a journey which has changed
his perspective on life and he truly believes that this has made him a better
person.
Recently, in 2013, Derek was the recipient of the Sunnybrook Rose Award, which recognizes the exemplary efforts of volunteers for outstanding service in a fundraising capacity. (Read the full article by clicking on the image).
Four years earlier, in 2009, Derek and Diane were determined to find an original way to raise awareness and funds for ALS research. After thinking outside the box, they came up with the idea of an annual skydiving fundraiser event. Derek, himself, participated in the inaugural event (and in three more events thereafter) by completing a tandem jump and raising pledges. The first event raised an incredible $100,000, and donations to date, together with future committed pledges, are close to $300,000. Derek is no longer able to skydive, himself, but he continues to support the event and he invites anyone with a sense of adventure to take part. Both Mark and I have participated and it was a lot of fun, as well as satisfying to know that we were also contributing to this worthy cause.
The Rose Award is not the only award that Derek has received. Back in 2012, he received the Queen's Diamond Jubilee medal, reserved for recognising and honouring exceptional Canadians for their contributions to their fellow citizens, communities, and country. It was a humbling experience to witness this achievement.
As well, Derek has received national recognition by Prime Minister, Stephen Harper, for his fundraising and awareness efforts, and was selected by ALS Canada to represent them at various governmental meetings in Ottawa. Local MP, Patrick Brown, arranged for Derek to meet with the Prime Minister and the Minister of Health, Hon. Leona Aglukkaq.
Derek is
realistic about his condition, but remains positive in his outlook. Recently,
he told me that he had been reflecting upon his mortality and the shortness of life
that we all have to come to terms with. He added that he is not afraid of the
future. This statement alone, told me that he had journeyed through his darkest
fears and had arrived at a place of inner peace and tranquility.
This does not mean that he won’t have moments
of anxiety in the future; but it does mean that he has found his compass, and that this will guide him back to the truth of who he really is. His wife, Diane,
continues to be a tremendous support as his primary care-giver. With her at his
side, Derek will always find the strength to find his way forward.
A good
friend once said to me, ‘If you could see yourself as others see you, you would
be so happy!’ It made me realize that none of us are truly aware of the
influence we have upon others. The movie, ‘It’s a Wonderful Life’, depicts
the main character as being given a chance to see what life would have been
like without him. It shows that our choices, through a ripple effect, impact
those far beyond our immediate circle of influence.
Derek has
been an inspiration to countless people throughout Canada and beyond. His
nickname, ‘Braveheart’, is a perfect description of who he really is, and when
you get to know him personally you will see that it has been well-earned. There
is no courage without fear. There is no victory without challenge. Together,
Derek and Diane have met those challenges head on.
Diane is a tenacious advocate
for his well-being, and is tireless in her efforts to ensure
that Derek lives with the highest quality of life possible. (For a glimpse into his life, watch this short slide show). To see her in action is to behold a strong woman who is resolved to uphold the tenet, ‘Let right be done’. She is truly a beautiful person, who blends strength and gentleness into a warm personality, which leaves you with a sense of gratitude for having her in your life. She, too, has had her challenges on this journey and her life has been profoundly changed by this disease. Her courage and determination are a testimony of her character.
that Derek lives with the highest quality of life possible. (For a glimpse into his life, watch this short slide show). To see her in action is to behold a strong woman who is resolved to uphold the tenet, ‘Let right be done’. She is truly a beautiful person, who blends strength and gentleness into a warm personality, which leaves you with a sense of gratitude for having her in your life. She, too, has had her challenges on this journey and her life has been profoundly changed by this disease. Her courage and determination are a testimony of her character.
We all have challenges
in life – whether seen or unseen. It is how we respond to these challenges that
will pave the way for our future life experience. No matter how successful a
person may be (or seem to be from our perspective), we tend to see only the
glory, not the journey they have undertaken to get to that point. Derek reminds
us all that the choices we make will determine how we are going to live. In Derek's words,
'My glass is half full not half empty........ is yours?'
An online
dictionary defines a hero as a man of distinguished courage or ability admired for his brave deeds and noble qualities.
For Mark and me, Derek incarnates that description and will always be our hero. We thank him from the bottom of our hearts for the continued example and inspiration
that he gives to us personally, and to all those who have the honour to meet
him.
Note: Derek has since passed away on January 17th, 2015. He will always be in our hearts.
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Note: Derek has since passed away on January 17th, 2015. He will always be in our hearts.
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There is no cure. Donations are needed for continued research. Please donate here.
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