February 4, 2019

"Hear my voice"

“Hear My Voice”: a message to all Health Care Professionals involved with assessing Huntington’s Disease. Written from an imagined perspective of my beautiful Mum Jenny, who is my absolute hero.


My eyes may not focus,
My face may not smile,
My brain hasn’t talked to my muscles for a while.

I may not say exactly what you expect to hear,
My involuntary movements, may stop you coming near.
But please do not fear communicating with me,
I can feel, understand, my heart still beats you see.

I see all of your love, I enjoy all of the laughter,
Often my frustration and difficulties follow after.
My limbs writhe around, spasms out of my control.
The tiredness every day, chips away at my soul.

But I feel every hug, my family keeps me strong.
This battle feels so hard and is yet still so long…

At times it may seem like I have disappeared,
But outside, and inside, I’m still very much here.
I wish that I could tell you when I’m worried or when I’m scared,
But communication is one of many things I wasn’t spared.

Sometimes people tell me that I can’t see what is wrong,
I feel like I’ve been coping fine by myself for so long.
They say that I have struggles, some that I can’t always see,
That’s because HD is diminishing that ability.

So what I really need is for you to listen to my carers,
They are ultimately the most honest sharers.
Why would people lie about their struggles with HD?
Have you any idea of the daily complexity?

These essential carers, whom without I would die,
Are forced to keep on fighting, with no time to grieve or to cry.
They show up on days when the ‘red tape’ shuts the door,
And to them, it doesn’t matter if their health is on the floor.

They sacrifice themselves for the safety of me,
And that’s why I am here asking you to hear my plea.
Huntington’s brings suffering in more ways than you know,
It’s me, and my family who have nowhere left to go.

I’m dying, with no cure, each day is one day less I live,
I don’t understand how a tick box is all you can give.
Your assessments are antique, enough to appall.
How can one assessment meet the needs of us all.

Please take just one moment to consider how it’s done,
Let me enjoy my final years, that’s one battle that should be won.

Mum, in her twenties!
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