Life Changes

Joanie, and her daughter Sarah

I was always proud of both of my daughters, but Sarah was probably the one I worried about least. Until she had a stroke in May 2009. For Sarah, that meant aphasia – a word we’d never heard of. 

At first we were so thankful that she’d survived.  The statistics we’ve heard recently are that 150,000 people have a stroke each year in the UK. Of those, 50 thousand die within the first 10 days, 50 thousand recover within a month, 50 thousand are left with some kind of disability.

After several months of physical therapy and ongoing speech therapy, Sarah was out of rehab and we were at home. The first few weeks out of hospital were probably the lowest point. So happy to be at home, but feeling very isolated and scared. It’s odd that most people dream of having more time at home, but if it’s forced on you because of a family illness it is quite a different experience. Sarah’s hopes of going to University had been put on hold. Nobody really knows what the future holds with aphasia.

It’s quite annoying when people say that she stands a good chance of making a better recovery because she’s young, or that she’s lucky because she isn’t in a wheelchair. It’s no consolation because Sarah wants to finish her “Twilight” book, but she can’t read a sentence. She wants to text her friends, but needs my help to understand Facebook comments or reply to texts from the few friends who bother to keep in contact with her.

I might sound bitter, but the surprising fact is that Sarah is incredibly positive and accepting of her condition. She works hard every day to improve her communication skills and stay active and fit.

Today is a big day because she’s travelling into London for the Connect drop-in session. Lots of people with aphasia meet and share their experiences – it’s a great source of comfort and laughter. Sarah’s been before, but today is special because she’s going to try to buy the train tickets herself. She’s been rehearsing what to say,

“Two travelcards please”.

One for her and one for her carer, Helen, who spends 20 hours a week with Sarah. It’s a big deal to say those three words in public, to a stranger. One of the biggest concerns is how other people will react to a person with aphasia. Will they think she is being rude by not speaking to them? Will they assume she is drunk, on drugs, or simple minded? She is none of those things, she just needs more time and some patience – these things are lacking in modern life, but she’ll have to find ways of coping in public. She has to get her life back, or maybe a new kind of life.

I do feel a bit bitter. I grieve for the life she’s lost. She should be living a carefree life at University, having fun with people her own age and pushing the boundaries a little. It’s hard not to think about what might have been.

We were always close, but Sarah’s illness and aphasia has made us even closer. We can read facial expressions, body language and unspoken words. Most of the time. Sometimes I totally misunderstand what Sarah’s trying to convey, but we can usually see the funny side of it.

Sarah has discovered a love of horse riding, she goes every Wednesday to the local Riding For The Disabled centre. Each week is timetabled to ensure that we don’t sit at home watching daytime TV. Sarah’s still recovering. Sometimes it seems as if we’re on a permanent holiday, but of course we’re not. We’re on a journey that we didn’t choose and we’re not sure where we’ll end up.