I composed this poem and read it at a symposium at Kings last May (2010). It hopefully tells people what it is like for MND sufferers in general. I think that my main purpose is to try to get across to everyone who is not a sufferer that WE ARE HERE. Because so many (5 each day) die from this disease so quickly we are, more or less, ignored. Why should a cancer sufferer or an MS sufferer be more in the public eye? Though, often, not painful our suffering is extreme; we are isolated and ignored in the main. Let us MND sufferers make ourselves heard (use e mail to shout, use blogs, use any medium you can).
If you are not an MND sufferer but would like to join the cause, you're more than welcome! We need all the help we can get.
Hey you, I’m in here, this is me,
Inside this broken body, can’t you see?
I have a perfectly functioning brain,
And my mental faculties, remain;
It’s just that my extremeties have failed
My moving parts, they are derailed.
I have difficulty to eat , wash or dress,
My toileting abilities, they are a mess.
But I can converse with the best of them,
Hold my own with the brightest of women.
I used to work from home to earn a crust;
With what we’re given by the government, it was a must.
It also kept me from going slowly insane
As I sit here each day, and my energies drain.
Now, I no longer work as it is too hard
I am making it my job to be an MND 'bard'
I would like to help myself and those less able,
By bringing governing bodies to the table.
Explain that we’re the forgotten many;
Recognition? No, we don’t really have any.
“Do you have MS”?, people ask, no, not me,
I am a person with bloody MND!
Why is the public so very unaware
Of a disease that kills so many out there?
We need to shout out, “Hey you!
Isn’t there something you can do
To help a worthy cause and try
To eliminate this disease”? We all die.
There’s no treatment, no cure, no end;
When will I die? It just depends..
Only time will tell when you will go,
For we have no ability to fight this foe
That robs us of our life as we knew it;
Pop out to the shops? We can’t just do it.
We slowly lose each body movement,
Become a beached whale to a great extent.
Legs, arms, neck, speech, are just a few
Of the things taken for granted by you.
How would you cope in my position?
You, “Joe Public”, my supporting physicians?
Perhaps, for a day you could all try
To live the same life that I
Live each day, going slowly down hill.
Not for me, just popping a pill
To cure my disease; but I still pray,
That a cure will be found; maybe one day.
Come on, join us in the fight to get more help; to make us more comfortable, gives us SOME sort of quality of life while we try to 'live' and die with this, a most awful disease!!!!!!!!!!!!!