I ring Mel and leave a message. She rings me back and we chat. My iPhone rings again. It is the speech pathologist booking an appointment for Merv. I continue on my walk stepping up my pace. I am sure I slow down while chatting on the phone. A police car with lights flashing has pulled up a young couple on a side street. I strain to hear the ongoing conversation but the traffic noise drowns it out. They appear quite comfortable even with the flashing lights. I turn my attention to the path on the main road which appears before me.
My iPhone rings again. It is CBM (Christian Blind Mission), a charity group which I donate to occasionally. I possess their annual prayer diary and religiously pray each night the caption for the day. They help the disabled in third world countries. I wait for the lady to ask for a donation. She tells me she isn't going to ask for one. There is always a catch. I walk waiting for her spiel to start.
The lady tells me her name but it is soon forgotten. She tells me about some of their ongoing projects and how immense it is to fund all of these. I'm still waiting for the catch.
She asks me as I stride along if I had considered leaving a bequest for CBM in my will? I think about this. I have read about it on the back page of their prayer diary.
Then I tell her that could be possible because as things stand now I will possibly outlive my husband and both my children. There will only be me left.
I tell her about the Huntington's in my family. I don't know why but she asks me if they are symptomatic. I inform her they are not. My memory just for the briefest moment remembers long before they are symptomatic there are ongoing mood changes ten to fifteen years before onset. I don't know why I wasn't informed of this as Merv and I had years of marriage counselling (my mother said she didn't believe in this, she would just throw a plate at my father to resolve an issue!) Merv who was always a gentle soul suddenly argued continuously, showed hostility and aggression towards me.
Now I find out a simple trip to the neurologist and a little pill could have stopped all that! I really thought it was male menopause and I would often drive for hours at night just to get out of the house. I even considered buying a ticket to Queensland and changing my identity. The things we consider when we can't find an answer!
Back to my phone call at hand I tell the nice lady about the gene silencing drug being trialled at present. It has been trialled in mice and monkeys. At present there are three human trials happening in different countries. The drug has even been known to reverse some of the symptoms of HD.
We finish the conversation and I once again increase my walking pace. I ponder as I walk.
Hopefully my kids will be at my funeral. That is what I want and that is the way it ought to be.
If so, I will leave my money to my kids, they just might find use for it.
I can have all of these conflicting thoughts but often the reality is different. We will wait and see.
If this drug doesn't work then we live in hope of one that will. We hope that it isn't too long to wait.
I saw my counsellor only two days ago but I find I need to chat to relieve my stress. Maybe the lady on the phone also needed a break from asking people about their will?
