2022 WATTYS SHORTLISTED || After being forced into a marriage by her devoutly religious parents, Aspen's husband is diagnosed with a life-limiting illness, and she must find her purpose as well as fight feelings for her husband's nurse. || Aspen Wat...
Oops! This image does not follow our content guidelines. To continue publishing, please remove it or upload a different image.
══════════════════
The website doesn't show much as I scroll through it. Well, nothing I don't already know. I suppose reading through the same thing for the hundredth time isn't too bad to make sure it goes into the brain.
My brain is normal, unlike Joel's. That's the cruel, awful, taunting way to view it, but from what I've read, it's the basic definition. Joel's brain tissue, spinal tissue and any other nerve tissue are all affected because of his faulty gene.
But it's how I need to process it by saying that; Joel's nervous system is faulty, and mine isn't. Less than ten per cent of people with Huntington's disease will get what Joel has – juvenile onset. Challenging behaviour and a change in education performances are common with juvenile-onset, which is what Joel has been experiencing. Well, not challenging behaviour yet, but I'm expecting it. I know Joel well enough to know he can have the temper of a lion when he's pushed, so I imagine if a lot of people suffer from mood swings, he most likely will too.
I glance around at the tabs I have up about money, financing, and how to deal with this. Seeing as I don't have a job, Joel was always bringing in the money. Now the burden falls on me, but I can't juggle Joel's illness, my degree, the home with washing, cooking, and a job. Some charities offer help and government benefits that rarely give students money, but with his diagnosis, will.
There's a special grant from the charity. It can help either household necessities, to help people with the diagnosis, or a special day out that's not abroad.
I think back to Joel's mention yesterday about Hampton Court Palace. He loved it there, and with the diagnosis, I don't think we could afford to go again. But this would help, and they'd help with hiring a nurse to come with us and help take care of him while we did it.
I wonder if we could do it. He would love it.
The application form involves going to a special Huntington's disease advisor. We don't have one of those yet. I remember Nicholas mentioning it to Joel and me yesterday during the multiple meetings we had with different doctors and nurses and specialists and whatever. Maybe we won't get that for a long time.
What's a long time with this disease?
There are a few links to some groups for help. One for people with the disease, people with parents who have had the disease, carers, partners, siblings or sons and daughters. I would fit in that bracket, and obviously so does Joel.
I glance at it. They meet once a month in a local meeting hall, with refreshments and food. They sometimes have guest speakers. The upcoming one next week is with one of the doctors we met yesterday. I wonder if they will let Joel out of the hospital for then.
If he ever gets out of the hospital.
The thought of sharing a room with so many people who can probably see through me makes the bile swish in my stomach. They'll know just by the way Joel and I are what we are, what we hide, what we did.
