'Agony Ali'

I've recently picked up a lot of new followers - which might have something to do with the fact that I mentioned Leeds United and it got picked up by the Elland Road Owl! Here's a brief-ish introduction to me, which will save you the trouble of reading my previous blog posts.

"There's a lot I could say about myself in the past, but I'm going to stick to the last five years or so. As you may know, I'm married to James and we have two sons, Joseph who's 15 and Evan, 13. We live in sunny Leeds.

Roughly five years ago, my youngest son had some routine health complications, which resulted in further investigation. After many months of tests involving the whole family, it was confirmed that the two boys and I have a rare genetic disorder known as Alport Syndrome, in which a particular type of collagen is affected. This collagen is found in the kidneys, the ears and the eyes. The collagen prematurely ages, meaning that people with Alport Syndrome become deaf, experience kidney failure (usually developing over several years) and can have eye abnormalities.

Both my boys are severely deaf and they both have kidney disease, which will progress until they both require transplants. It's not possible to 'cure' Alport Syndrome, but the effects on the kidneys can be slowed with medication. I too have Alport Syndrome and therefore kidney disease, but it's typically slower to develop in women. At the moment my hearing is ok.

Learning that my children were affected by this condition and that I too have it had a massive effect on my already variable mental health. I was studying for a PhD at the time, which was stressful enough on its own. I had a psychotic breakdown in 2014 and eventually had to give up the PhD and the counselling career I had recently begun. I was hospitalised several times during 2015/16 and was later diagnosed with schizoaffective disorder (depressive type). This gave me answers to questions I'd had over the years and explained why my mental health had always been so up and down.

Since my lowest point in 2015, I've been slowly rebuilding my life. I began a full time professional doctorate in Counselling Psychology in 2017, but found this and commuting to university too mentally taxing and had to give it up to preserve my mental health. I spent much of 2018 feeling a bit sorry for myself and something of a failure. I've since turned that around and have accepted that I'm not useless, I'm just ill.

Now that I'm recovering, I'm looking to do something again. I've no idea what this 'something' will be, but I'm hoping I can combine my love of writing and helping people with their emotional and mental health difficulties. I'm already qualified and experienced as a counsellor, but the writing side of things will be a new challenge for me.

Maybe I should set myself up online as an Agony Aunt and charge people a small amount for my services? Agony Ali!

Thanks for reading if you got this far - it's been lovely to meet you!

Ali x"

Everyone is a story

Health stories form part of our cultural landscape. We’ve all heard the tale of the Great Uncle who smoked 60 a day and lived to be 90 years old. It’s not always clear exactly whose uncle he was, but still, it's a great story! Families have these stories too, such as the time a relative absconded from hospital just before an operation, walking home in his dressing gown (this one is completely true, it was my Dad, but thankfully the operation was only a minor one!) There are mental health stories too and that's what my research is about.

We know that telling stories (narratives, in academic lingo) is an important way of making sense of the things that happen to us. They also tell us who we are. We are re-imagined in stories, a range of possible selves is within reach. Jerome Bruner said they’re often told when something important happens in or lives; it might be a danger or a challenge, or it might be something positive but we don’t tend to tell stories in which nothing happens. What’s interesting is that it’s not just a case of “stuff happens then we talk about it,” we actually use stories as a way to understand our experiences. So, in telling the story, we are also making sense of life events and ourselves. The plot will alter according to personal circumstances, mood, previous experiences and it will also be shaped by culture, family traditions and so on. A story can be told as a way to help us understand what’s happened, but each event could be 'storied' in a number of different ways. In this way, our experiences are something to be discovered, rather than concrete entities with one ‘official’ interpretation.   

My research work involves hearing people’s stories about their mental health. I’m no stranger to this; as a counsellor, I've listened to literally hundreds of life stories. At various times, I've been saddened, inspired, motivated, enlightened and entertained by what people had to say. I was already aware of the therapeutic value of story-telling and being heard and knew that the telling of a story could aid someone making sense of things. I acknowledged that the stories I was hearing might be rather different to the ones being told elsewhere in that person’s life; such was the privilege of doing therapeutic work. 

I also knew that often, someone would have pre-existing ‘stories’ in their mind, so their more recent experiences would take their place alongside the old. When someone has a number of pre-existing stories, they are liable to repeat old patterns because they make such intuitive sense; it’s just “how it is” for that person. As such, they can find themselves doing things that aren't always in their best interests. Part of the business of therapeutic work is to understand and possibly challenge these old stories by asking (in a variety of ways) "how’s this way of seeing your experiences working out?" And the response to these questions will vary, according to a person’s ability and willingness to introspect. It’s a difficult task to witness someone continuing with a pattern of behaviour that doesn’t exactly help them, but by asking the questions, the person is free to follow it up, if and when they want to. 

My research is, in a way, a continuation of this hearing people's stories. My task is to collect lots of stories (data) and put them together to create a kind of ‘collage’ of experiences. I'll then be providing some commentary, with a few psychoanalytic insights. It's more a mosaic than a collage, but my preferred way to describe it would be to say it's a bit like a kaleidoscope. A mosaic implies that the pattern is ‘fixed,’ whereas to me, human experience is anything but static. Just because we might think we see / think/ understand something now, it won’t necessarily look that way in a fortnight, or a couple of months' time. I want to reflect something of the dynamism of human lives in my work. Unfortunately I won;t be able to witness people's understanding evolve but I can take a snapshot of where they were at a given point in time and (hopefully) say something interesting about that. Just as it was when I did therapeutic work, it'll be such a privilege and I'm really looking forward to being part of it.