Huntington’s Disease, well I guess we should talk about it.
I’ve been putting this conversation off because it’s a really hard one to have, but with so many of you reading my posts and blogs I really do want to talk about it.
So much of the world has never heard of Huntington’s Disease! And it needs to be shared about. So, here we go…
What is HD? Its a degenerative, neurologic disease.
It’s genetic, so you’ll only ever get HD if one of your parents have/had it. And if you inherit the gene, you will develop the condition (unlike many diseases where you can carry the gene but not develop the illness).
It’s caused by one single teensy, tiny, little genetic defect on chromosome 4, which causes the DNA to (do something super technical that I don’t even understand) which eventually results in the death of brain cells.
This happens slowly, over time, and affects every part of the brain, until it can no longer keep the body alive.
It means that those living with HD can spend many, many years with no ability to talk, walk, move, or engage consciously in life.
But I can promise you that there is vitality, love and life in people who can’t talk, walk, move or engage consciously in life!
Almost a month ago one of my best friends died from Huntington’s. And I know it to be true that until the very end of her life on earth she recognised me, knew me and loved me. Ingrid was a teacher to me, and here are some of the things I learnt.
- Talking with someone who can’t talk back is difficult at first. But when we reframe our personal definition of interaction from ‘conversing’ together to ‘being’ together it becomes a lot easier.
- When you talk with someone who is losing their ability to speak, their response time is slow. This means that the uncomfortable pause in between your comment and their response is really, really important, it gives them time to engage. So give that uncomfortable pause all the time it needs.
- To be able to wash a friends face, feed them, do their hair etc. is such a special thing and one we don’t usually get to do with our friends and family. It’s a deep honour to have that kind of depth in a relationship.
- Grief isn’t just something we experience in relation to death, it’s constant energy that flows in and out, in and out, as we experience uncomfortable changes throughout life.
- Music never ‘leaves’ the brain. Song lyrics become the deepest of the long term memories and trigger the best of memories! Music transcends all barriers, it’s always going to help you be with someone in a way that has meaning.
Bob Dylan used to sit with Woody Guthrie and sing to him as he died with Huntington’s Disease.
And I used to sing with Ingrid. We sang this song many, many times.
And now this song has become her gift to me – it gifts me memories, allows me to release emotions, express myself deeply, and to connect with her.
She has been my teacher. I wouldn’t be the person I am today without her.
So there *have* been blessings.
But also, screw you HD.