Peter Kilgannon was a 48 year old husband and father living with Motor Neurone Disease when he wrote this piece on his experience of his condition.
Supported at home by his wife Heike, and his then 5 year old daughter and a 2 year old son, Peter had no movement at all with his limbs and minimum neck control. He communicated by spelling out each letter one by one using his eyes.
This is shared with the permission of his family, as an insight into living with MND.
LONELY – 27/7/2015
Let me start by saying it’s no one’s fault, but MND can be very lonely.
In a full room of people you can be lonely. I can’t physically talk, but I can via my Tellus Eyegaze computer, so I am talking from a point of view that is privileged, relatively.
Even with the assistance of the computer conversation is slow and misunderstandings can be a constant frustration as the conversation moves on whilst you are still typing your piece.
Having said that I would be totally lost without my Tellus Computer. Lonely, yes.
There are many changes as an MND sufferer you will be presented with, a hard pill to swallow, they are sadly unavoidable.
Loneliness, for me, takes many forms.
Life for your family and friends must continue. As the disease progresses so does your isolation. Your family and friends are there for you but you are not for them. Slowly being stripped of your ability to interact, the loneliness starts to set in. When I say you are not there for them, you are there filling space in the room, but it, or you become a conversational Black Hole.
People understandably are uncomfortable with either the speed of conversation, or the lack of it. As you change into something very different to what you were,
Lonely, as the days roll by and you become less involved, to some degree it’s like watching Reality TV. Everyone is busily running around in front of you.
Kids running around occasionally interacting with you, this becomes less in direct relation to your dwindling abilities.
The same can be said for others that come and go. Jealousy, an ugly consuming emotion is hard to keep at bay.
Understandably when you go out there are areas where your wheelchair can’t go, you watch on from afar, not wanting your family to miss out on those in experiences.
You cut a lonely figure, and you are. So sad as your intellect is unaffected, a struggle you just have to fight.
Why do I write this? It’s for newly diagnosed MND sufferers, not to scare, but to inform them and their near and dear.
Regards, Peter Kilgannon
MND NSW provides information, support and education for people living with motor neurone disease, their families, friends and carers in NSW, ACT, the Gold Coast and NT. MND NSW also provide information and education about motor neurone disease for health, community and residential care professionals. http://www.mndnsw.asn.au/