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© ALS Independence 2003-11
AS a person for whom Motor Neurone Disease
(MND) didn't prove fatal in the prognostic time, three to five years, I have
been given the opportunity to look at the disease, and at my life, in a new way.
As realisation dawned that I was becoming a long-term MND patient, I developed
characteristics that have given my life new meaning and hope.
When I was diagnosed with this disease, I was faced with the prospect of severe
disability and a life span of just a few short years. I had two options -- give
up or else develop endurance characteristics. Deep within my being, the human
fight for survival surfaced. Immediately, I focused on learning as much as
possible about MND before serious muscle wasting began. Some of my survival
characteristics were always a part of me, others I have developed along the way.
I draw emotional stability and mental strength from outside myself.
I took charge of my own life. I did this by drawing on the immense strength that
lies within my being. Each person has been given that strength, sometimes we
just need to dig deep to find it!
After a pilgrimage to Lourdes with CASA (Caring and Sharing Association) in
1990, I found great spiritual strength to accept the disease and learn what I
can from the experience. In short, that spiritual serenity gave me a power
greater than myself.
I seldom take what I'm told seriously, especially about this disease. I make up
my own mind and follow my own instincts. I will try almost anything to test my
remaining abilities, and they are many!
With an open mind, I now embrace modern technology (Dragon voice recognition,
Naturally Speaking), aware that it has given me back my ability to write.
Currently, man cannot cure, prevent or arrest this disease, but modern
management and modern technology now give us the possibility of living with the
disease, while enjoying an active and satisfying life. I must, at all times,
remain positive.
I live in the "now", realising that I'm not promised tomorrow. I'm thankful for
the way I am today, because I know that many people have been affected by this
disease to a greater extent than I have.
I want to live and I want to fight to live, to be here to watch my grandchildren
grow up. This doesn't mean that I've got my head buried in the sand or that I'm
wallowing in self-pity or the "why me syndrome". I've made a deliberate and
conscious decision to live on the sunny side, and I refuse to see myself as an
object of pity. I see myself as a useful and valued member of the community, and
of my family.
I believe that a treatment will be found within three to five years, and that a
cure will follow within five to 10 years. It may not arrive in time to save me,
but that does not worry me. I've had a good innings: 31 years since diagnosed!
And I thank God for that! I've learned to understand and accept my remaining
abilities, and I know that a simple thank-you is sufficient payment for a good
deed and the help given to me by others! I want to reach out to others living
with MND and their families. I want to share myself and the lessons I have
learned as I cope by searching for the power deep within.
I have a good sense of humour and I hope I never lose it. I can laugh with
others about my disability and inadequacy. I await the possibility of new
discoveries and new technology. I have received many blessings from my
experience of MND. No longer do I consider myself a "helpless victim".
What could be more destructive to our self-respect and general quality of life
than seeing ourselves as victims?
MND has allowed me to recognise the incredible strength I have been given to
deal with my circumstances.
I define myself as a lucky human being, who happened to have MND as part of my
experience of life.
I am grateful to be alive today. I live a life filled with confidence and
purpose. MND has changed my life completely. I am now a different person to the
man I was before my diagnosis. To view it in a positive perspective, it has
enriched my very humanity. It has made me a humble and considerate person. It
has allowed me to now live my life at a slower pace, a pace where I can take
time to enjoy my life thoroughly. I savour each moment. I relax and listen to
the silence. It has much to say. I am at peace with my inner self.
I don't know just how this disease will progress, or how I will adapt, what my
tolerance of dependency will be, what my comfort zone will be, what help from
family and friends, I will get. But I am a prisoner of hope!
I won't let anyone convince me that my hope is "false". Hope isn't false, you
either have it or you don't.
"It is always good to look into the mirror and affirm who you are today, but it's even better to look back to the days of your past and see how far you've come." Sidney R. Hargro
MGM
© ALS Independence 2003-11