Please Tell Me, I'd Like To Find Out : THE INVISIBILITY OF THE CARER
I have never been able to get even close to describing the full horror of our situation, the never-ending suffering, the overwhelming burden of neglect and misunderstanding, the almost total isolation.
When I take the dog out, or go cycling, I seem to enter a parallel universe, where I seem to be regarded, not quite a bachelor, but certainly not as my default state of “Greg and Linda”.
So, some will ask me where I’ve been on the bike, I tell them the sea, 4 miles away. “It’s a lovely day for it...” is their cheery response, as I wheel the bike around the back, not knowing just what agony my wife will be tormented with.
All the while trying desperately not to make the slightest noise that can plunge her into dangerous deterioration. Making sure, for example, that I unclip my bike helmet before entering the house and undoing the noisy velcro strips on my jacket.
What, I wonder, sometimes, would I say, if I was REALLY asked -“ how are you?”
I wonder would I rage or cry, scream or go mad?
Who wouldn’t, given the situation?
Instead, for the last 26 years, I just smile and ask the person how they are.
Paradoxically, on the deepest levels, I know extraordinary peace and experience daily, the deepest joy of our love and connection. It would be nice to share that too. We have amassed a lifetime of wisdom and insight into how how to grow and find meaning, even with everything taken away.
I have said it before, I thank God for my electric guitar and the gift of music. In this song I try to express all I have been saying above .