The following poem is from a collection of 41 written by me to try describing Huntington’s Disease (HD).
This poem tries to convey how people “at risk” of developing the disease have different approaches to coping with not knowing. Some need to know their fate whilst others cannot face up to testing for the gene even though there is just as much chance they might be negative.
Here I also touch on diagnosis by proxy. In essence… If one sibling tests positive he/she confirms their parent is also HD positive and the others are confirmed at risk whether they wanted to know or not!
The Sibling
Both have grown up, to live with HD,
Their grandpa and aunty affected.
They know that their dad is at risk as well,
But attempts to discuss are rejected.
One sibling is eager to know of her fate,
The other is keen to ignore.
One feels that a family and children can wait,
But the other is hungry for more.
The answer is simple to those looking in;
Why doesn’t the sibling just test?
But even the route to have testing begin,
Will open a whole hornet’s nest.
The laid back sibling is quick to remind her,
It’s not only your life at stake;
If you have the gene, then you know that will mean,
It’s dad’s and my heart too you’ll break!
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