beauty & the legacy of David Mackenzie
Not many people can consider a diagnosis of Motor
Neuron Disease to be anything other than a death
The ability to do so marks David Mackenzie as
an extraordinary person.
Faced with a frightening diagnosis that gave
him two to five years to live, he has drawn on
a deep well of positivity that he didn't previously
know he possessed and written a book that that
shines with raw emotion and illustrates the capacity
of the human spirit to cope with the darkest adversity.
It was a sudden bout of muscular weakness during
a hit-and-run cricket game that prompted the otherwise
healthy 39-year-old father of three to visit a
A few months and several tests later he was coming
to terms with having a terminal illness and wondering
how to tell a ten-year-old boy, an eight-year-old
girl and a three-year-old boy that their father
is going to die.
That was five long years, almost another lifetime,
Mackenzie refers to the day he was told he had
Motor Neuron Disease (MND) as his Watershed Day.
There had been other watershed days in his life,
his first day at work, his wedding day, the days
that his children were born, but this one was
He describes it as the beginning of a journey
into the unknown, on a physical, emotional and
MND results in the death of the motor neurons,
the nerve cells that transmit messages from the
brain to the muscles. As the neurons die, messages
to the voluntary muscles cease and the muscles
stop working. Unused, the muscles gradually waste
away and die. Eventually the muscles associated
with the lungs are effected and death comes. The
cause of the affliction is unknown and there is
no known cure.
While MND has gradually claimed more of his body
Mackenzie feels that he has been learning, and
growing in leaps and bounds on the other levels,
hence the title of his book ‘Coming to Life.’
The evening before his diagnosis he considered
the task of bathing his two youngest children
to be a chore. The evening after it was precious
A chartered accountant by trade Mackenzie has
charted his emotional journey in detail.
Before his Watershed Day he says he was a typical
Aussie bloke. As a child crying over a disappointing
golf shot he was told: “Swear at son. Don’t
cry.” He learnt that emotions were unmanly,
something to be suppressed.
The horror of terminal illness changed that though
and he took on the challenge of understanding
and living with himself, emotions and all.
Writing a book was part of his process of exploration
and the end result is a how-to-have-emotions-handbook
with relevance to everyone, with illnesses and
without. His smile and enthusiasm for life stand
in themselves as a challenge to anyone feeling
burdened by ordinary misfortune.
Five years into his illness Mackenzie is doing
better than most MND sufferers. He needs a walking
frame to get around his house and uses a wheelchair
to travel distances.
He can still speak and swallow, but he is aware
that he could lose these abilities at any time.
Five years after diagnosis 80% of MND sufferers
are dead, and 20% are in a worse condition that
Mackenzie is now. Hope exists though. Shining
particularly brightly in the form of physicist
Stephen Hawkins who was diagnosed in his 20s and
is now in his 60s.
During his frenzied search for information on
MND that followed his watershed day Mackenzie
came across Hawking’s website and read about
how he has overcome the terrible limitations imposed
by the disease. He was so inspired that he sent
the physicist an email, and was delighted when
he received acknowledgement and best wishes in
Mackenzie is convinced that remaining positive
about life has made an enormous contribution to
his powers of resistance. He gives credit to the
family and friends who support him and to the
process of writing and facing his big questions,
such as how can this have happened if God exists
and is not a bastard?
Death and religion are old friends. Terminal
illnesses almost always raise spiritual questions.
As a churchgoer Mackenzie was forced to question
his faith. It was restored though by a gentle
reminder from a wise friend who said that just
because we don’t understand something doesn’t
mean that there is an absence of meaning, just
that there is more meaning than we can handle.
Other milestones on the journey include his contemplation
of euthanasia. A reasonable issue given that MND
has been called the “worst possible way
Another issue that the disease drew out was the
question we all ponder about the meaning of life,
on a personal level, the question of what will
I leave behind?
The question, followed fastidiously through thoughts
about children and faith as legacies, eventually
led to the realisation that it is the shift in
priorities that the illness brought about that
is worth sharing and leaving behind as a message
for those who follow. Inspired by this, Mackenzie
is speaking out and sharing his belief that life
is beautiful and well worth cherishing.
Having let go and grieved for his plans to have
an active retirement travelling with his wife
Jill around Australia in a campervan, Mackenzie
now sees himself as a writer and an important
source of support to others battling to come to
terms with terminal illnesses, particularly with
Mackenzie is a regular on the Ozpals website,
which is one of the places people with, and people
supporting people with, MND gather.
Having survived as long as he has Mackenzie has
become a beacon of hope to others, as Hawking
was to him in the early days of his journey.
The launch of the book in August this year marked
another new beginning. Mackenzie is now receiving
mail and being asked to share his wisdom. No longer
an accountant, he is now a survivor, a man of
extraordinary courage and wisdom, a teacher and
a source of inspiration. He didn’t choose
MND, but the choices he has made since his Watershed
Day have made him a hero in the eyes of many.
His book, with its remarkable ability to draw
out emotion, is in itself an important legacy
to leave a world that struggles to understand
its feelings. As HarperCollins publicist Louisa
Dear said about its launch: “There wasn’t
a dry eye in the room.”
For more information visit www.comingtolife.biz
What is Motor Neurone Disease? Motor Neurone Disease
(MND) is the name given to a group of diseases
in which the nerve cells (neurones) controlling
the muscles that enable us to move around, speak,
breathe and swallow fail to work normally.
With no nerves to activate them, muscles gradually
weaken and waste. The patterns of weakness vary
from person to person.
What are the Symptoms?
Early symptoms are mild, and include
stumbling due to weakness of the leg muscles,
difficulty of holding objects due to weakness
of hand muscles, slurring of speech or swallowing
difficulties due to weakness of the tongue and
throat muscles. The effects of MND vary enormously
in respect of initial symptoms, rate and pattern
of progression, and survival time after diagnosis.
How is it diagnosed?
The diagnosis of MND is often clinically difficult,
and it sometimes is necessary to review patients
for some time before the diagnosis becomes relatively
certain. The family doctor may suspect the neurological
problem, and confirmation of the diagnosis by
a Neurologist is desirable. The diagnosis can
be assisted through a range of tests, including
some which eliminate other conditions. Often an
electromyograph (EMG) is used, in which a needle
is inserted into various muscles to measure their
What remains unaffected?
In the majority of cases the intellect and memory
are not affected, nor are the senses of sight,
hearing, taste, smell and sensation.
The bowels and bladder are not affected by the
disease, although diet and exercise should be
Support people include the family, friends, GP's,
Neurologists, Occupational Therapists, Speech
Pathologists, Psychologists, Home Care Nurses
and Social Workers.
What can be done?
Information about the support group available
in your State can be obtained from the Motor Neurone
Disease Association web pages.
Some Associations, as well as the National Association
(MNDAA), employ professionals to provide advice
about resources and equipment as well as psychological
support, all of which can maximise the quality
of life for people living with MND and for their
families and other carers.
These professionals work together with those
who have personal experience of living with MND
and their carers, including those who have cared
for their loved ones in the past, to provide support
and advice based on a wide understanding of the
nature of the issues associated with each stage
of the disease.
Sourced from Motor Neuron Disease Association
of NSW. For more information visit http://www.mndnsw.asn.au
or call 1800 640 144 or 02 9743 587