Oct 2016
The scream starts in my heart, but exits through my head
Every day I rise I remember that from the head down, I am dead
The things I thought would be poor sport, the wheelchair and work
Have turned to nothing more than **** and poo, and sometimes in the bed
My life changed in just one moment when I saw that specialist
But now I forget quite how I felt in that exact moment at best.
I lost the will to live when I found I could not do the things I loved
To walk upon the beach, to climb and see the coast
To swim, to run, to make love and be with the one I loved
So now I must sit and mourn and try to not look forlorn
There are those I love the most, who have given me hope
And those who slid away, trying to forget the other me
But when it comes down to it, I have to do my best on my own
I’ve been told I have to be strong, or that I am strong
The truth be told, I have no opportunity to be anything else
For who, if not me, will care to push me where I need to go
Life is ****** if not ****** well tough
But me, I don’t have to accept it as anything more than a game
And so I propel myself through the inkiness of night
But I see the light ahead, as I cannot afford to fail
And as they say, life goes on and I will refuse to be left behind
So I am strong and hard, but inside there is space
Space for my feelings, space for my cares
All in a box I’ll not ever reveal to someone else
Every day I rise I remember that from the head down, I am dead
The things I thought would be poor sport, the wheelchair and work
Have turned to nothing more than **** and poo, and sometimes in the bed
My life changed in just one moment when I saw that specialist
But now I forget quite how I felt in that exact moment at best.
I lost the will to live when I found I could not do the things I loved
To walk upon the beach, to climb and see the coast
To swim, to run, to make love and be with the one I loved
So now I must sit and mourn and try to not look forlorn
There are those I love the most, who have given me hope
And those who slid away, trying to forget the other me
But when it comes down to it, I have to do my best on my own
I’ve been told I have to be strong, or that I am strong
The truth be told, I have no opportunity to be anything else
For who, if not me, will care to push me where I need to go
Life is ****** if not ****** well tough
But me, I don’t have to accept it as anything more than a game
And so I propel myself through the inkiness of night
But I see the light ahead, as I cannot afford to fail
And as they say, life goes on and I will refuse to be left behind
So I am strong and hard, but inside there is space
Space for my feelings, space for my cares
All in a box I’ll not ever reveal to someone else
I was diagnosed some years ago with FSHMD and this was particularly shocking for me as I had left such an active life. Now I am fully quadriplegic and have to be lifted from my bed or chair by ceiling lifts. It is true to say each morning when I awaken, I remember each time what has happened. It is also true that long time friends have in a roundabout way have deserted me as I have progressed for whatever reason, but that I have made others who are are just as good as the previous. After a particularly bad patch I attempted to take my own life. That experience caused me to have resolve and now I am a better stronger man. Writing has become a boon, and I write everyday (currently well into writing a faery tale) and poems or prose flow freely when I am alone, and especially when I listen to music.
