Facing fears

I’ve just finished writing a novel, and I’ve had to read through it several times as I edit it, making sure that it is free from those irritating typos and grammar problems. As I’ve been reading, I realised how much of the story reflects my world. Some things I knew about and were absolutely intentional; some things surprised me – I hadn’t noticed until I had this intense reading back  period.

My main character has a severe stammer. His experience was prompted by my mother. She had a terrible stutter, her head shaking as she tried to get out her words. It blighted her life. She hated meeting people, ashamed of the faces she pulled as she tried to speak, ashamed of her disability. When out walking in the street, on our way to the shops, if Mom saw people coming towards us she would make us cross over the road to avoid them.

It wasn’t till many years later that as an adult I realised why I was so shy, frightened of talking to new people. Mom’s disability had impacted me without either of us realising it. Understanding what had happened gave me a new approach to life. I doubt if anyone who knows me now would believe that I used to be so shy!

In my book I have Tom hiding from the world because of his stutter, dealing with anxiety when he has to interact with people who he fears won’t understand. This again was intentional because of my mom’s experience.

Then I realised this also applies to me in many ways. In the early days after my stroke, I definitely hid myself away. Not being able to recognise people – prosopagnosia  – was a huge embarrassing issue. I met someone I hadn’t seen for a while. They were sympathetic and caring, but assumed I was suffering from some sort of dementia when I asked who they were.

At the time it was safer for me to travel with a companion as I got lost easily – couldn’t recognise new places either. I would whisper to them ‘who’s that?’ as people approached so I didn’t have to risk that difficult moment again.

When I went to university to study for my master’s degree, I didn’t try to make friends with people on the course. I wouldn’t able to recognise them the next time I met them. It was easier to not have friends than to face having to keep asking who they were. How do you know who to sit by when you have no idea if this is the person you usually speak to or not?

It was easier to stay at home than to gear up to leave the house. I needed someone to help me plan the route, apps on my phone to follow the bus routes, someone on the end of the phone for when it all went pear-shaped. And when I lost signal, I couldn’t face approaching strangers to ask for help.

Fast forward a couple of years and I’m a different person. I am open about my disabilities rather than trying to hide them. My attitude is that I have no reason to be embarrassed about my difficulties. If other people are, and can’t or won’t understand, that is their problem, not mine.

I tell people in advance so they know what to expect – often this smoothes the way but not always. I explain what the issue is and what help I am likely to need. I tell them I’m not being rude if I ignore them, it’s my face blindness. Just call my name and I’ll know who you are. (I am getting quite good at recognising voices.) I am happy to ask for help when I need it, and interestingly this has made me more confident to go out and about on my own. I found removing that fear has given me faith in my own ability to do things.

Perhaps I should have written my book some years ago! If I had had this insight into the way I handled things, perhaps I would have found a better way to manage my issues sooner. It now makes perfect sense. A disability does not render you an embarrassment nor a liability. We are all valid just the way we are.

Portland Jones Disability Liaison for Pagan Federation Midlands