Going, going, maybe gone?

As the administrator for Brain Aneurysm Support Australia (BASA) on Facebook, I’d read posts from too many people who felt like me. Bad. Not everyone on BASA had a stroke, like I did, but too many people whose brain plays up after their aneurysm had hoped that their families would help them. Unfortunately, too many people walk away.

I’ve read too many articles throughout Google which say this sort of thing. Some are written by people, throughout the world, whose families have thrown their hands up, accused their ill family member at misbehaving, and have left the care of their own family person to anyone who would care. Which is not enough people.

Three months ago a FB friend of mine, who I’ll call “D”, committed suicide. She was based in Brisbane when she had had her stroke four years ago. She was in a wheelchair and lived alone. What happened to her threw me down the deep hole which, too often, I just can’t seem to get out of. Before her world stopped “D” had a cat given to her, which she loved and took photos and slept with it, but in the end even the lovely cat couldn’t keep her alive.

Another friend, “J”, who had a brain aneurysm and lives with her family, is having a bad time. They don’t accept what has happened to her brain and keep telling her to behave herself. They shouldn’t do this to her! 

 

Another friend, “M”, had a brain aneurysm three years ago. She’d had her job for many years before that, but returning to work when she couldn’t get her brain to think straight caused her to be made redundant. Now she doesn’t work. Like me, she can say something which she thinks is right, but someone else will tell her she’s wrong. For me, telling us we are “wrong” is wrong.

Another friend… another friend… another friend. So. Very. SAD! 

And this has very recently happened to me, on my left brain. My daughter had reminded me of stuff I had done earlier this year when I didn’t even think I did anything wrong. I don’t believe, now, that she even understands me. Even if I considered I was not wrong.

My daughter had given me some of her own words, which are included in my new book Aneurysms with Aphorisms. After I got out of the surgery and she found out my heart had stopped and then I had my stroke, she said, for my book:

Feeling an overwhelming sense of sadness and an emptiness in my tummy, I thought to myself what if I don’t get my Mum back? What if she will never be able to speak again? What does this all mean for the future? Desperately trying to fight back the tears, trying to be strong, I turned to my partner and said “I sent my Mum in to surgery, my Mum, and she has come out someone different, what if I don’t get my old Mum back?”

I am no different than any other person who can’t get back to “normal” from their surgery, yet there are nowhere near enough normal people who can work out what happened to us!

Very recently Australian Aphasia group posted a link to an article which, in UK, gave kudos to a doctor who has worked out treatment for people with aphasia after a stroke. That’s all I’ve ever heard about that. I’ve never heard anything like that about people who suffer from brain aneurysm. I’ve never heard anything like that about people I know who are chronic, or with dementia or Parkinson’s disease, or TBI from a hit to their head, or any other illness which can’t be fixed.

In my new senior residence my next-door-neighbour is over 70 and has dementia. Her family should be putting her into an Aged Care residence because often she loses her memories and sees things. At night time. Two nights ago she’d upset Jordie who started barking. It was 11.30pm and “O” was wrapped in a sheet and knocking on another neighbour’s door. She said she couldn’t get back inside to her own unit, but I opened her door, easily. She drank two coffees I made with milk I provided because she didn’t have any. Last night she came to my door (Jordie barked again) and told me there were some children in her unit. I checked, they weren’t there, and talked “O” to stay there.

Too many normal people just don’t seem to care about illness, and illness is where I slot my own drama. Not imagination, much like dementia, but mine is the inability to do what I used to do. What would I do now? I would write. I’d talk. I’d educate every person in this country and maybe everywhere else.

Learn about illness.

Learn about how it treats the person you know.

And learn how you should treat them.

Because they are people, and they have just as many rights as you do.