Hi, I'm Pearl. If you haven't read my story yet pop over to the 'about us' section and have a read. https://foundandseek.co.uk/pages/about-us The last few years has been a bit of a whirlwind as you could probably guess. I never thought that 5 years on I would be standing here in our shop. Today I want to blog about how my experience has changed my perception of life.
We all go along in our lives, day to day, assuming things will be as planned. Even though I'd had health issues with a brain tumour, I was a typical teenager, about to sit my GCSE's, I loved listening to and playing music, hanging out with my mates, reading, painting. I had been in discussion with the local college and a vegetarian restaurant about training as a cook. I assumed that at some point I would do all the things that people did as they went through their teens and into their twenties, like getting a job, moving out, falling in (and out) of love, learning to drive. I would go to festivals, travel, experience hangovers (!), have fun. I didn't think about the simple things in life - like walking, talking, reading, communication .....well, you don't do you? It was only when I experienced the brain infection and all its effects that I realised just how much we take for granted.
One of my earliest memories in hospital when I came round was the shock of not being able to move my legs and my hands. The nurses and my mum kept telling me to squeeze their hands and wriggle my toes. I tried so hard but nothing seemed to happened. I can remember the first time I managed to make the fingers on my left hand move for the first time. Everyone kept saying it would be OK, I would get there and I remember thinking "where is there?". No one knew what I would be able to do or not do. It has been a very long and painfully slow process.
One of the most frustrating things was that I knew what I wanted to say in my head but the words that came out of my mouth would be all wrong. If someone pointed at a picture of a flower and asked what it was I knew it was a flower but I would say it was a .....sandwich. At one point every time I wanted to say 'yes' it came out as 'no'....that confused everyone. It wasn't because I didnt know.....I did know, I just couldn't say it. Thankfully it got better but even now I still have times when I find myself saying a word that doesn't fit (we just call it Pearl-speak!). I laugh about it now rather than get annoyed. Before, I would probably have assumed that someone who couldn't speak properly wouldn't understand properly either but now I make a real effort to try and understand and to be patient.
Sometimes people could be quite patronizing when I struggled, sometimes treating me as if I was aged about 6. "It's OK dear....never mind." Over pronounced as if I couldnt hear, a pat on the hand and worse, the sideways look at my mum and the dreaded "aaah bless her". I would sigh and give up (my mother would roll her eyes). I always make sure when I meet new people in the shop or at a craft event, especially if they are with someone who may be a carer or if they seem to need help communicating that I try not to be patronising and allow them to communicate in their own way.
Being in a wheelchair for nearly a year was an experience. I never realised how much people blank you when you are below eye height - people spoke to whoever was pushing me. It was very demoralising. On a practical level I found out how inaccessible places were - steps up into shops, lumps in the road, kerbs....it was like an assault course. Our shop isn't ideal but I do try and make it as accessible as possible. My experience means I notice things other people might overlook.
These days I don't assume that because someone looks OK they are OK. Having a brain injury can lead to hidden disabilities. You can see a wheelchair or a walking stick, you can see if someone has problems moving around or if they cant get their words out what you cant see are things like the fatigue that can come on so suddenly that I just have to go to bed. If I have an evening out I have to plan it in advance by making sure I get a few hours sleep before I go out. This means if I am going out at half seven, I have to be in bed by about half four. A late night can knock me sideways for days which means I have to change my plans. My biggest problem is my short term memory. Sometimes, especially if I am tired, I find it hard to remember quite simple things (like did I turn the TV off? did I have a shower this morning or was it last night? when is my next appointment?) I have found that I learn better by doing things - its actually pointless telling me how to do something, let me try and I get the hang of it eventually.
What happened to me was life changing and yes, there are days where I get a bit down but I cannot change it. What I can do is try and make the best of it. My experience has taught me a lot about myself - I have strengths I did not know I had. Some of my previous skills are on pause at the moment (for example I don't cook like I used to, I used to play the flute a lot - not so much these days) but they are just 'on pause' I intend to press 'play' in the future.
A lot of what I have learnt through my experience has been on a personal level but some of it has come in very useful in the shop and at craft events. Customer care is vital and its a skill I think I have developed that perhaps someone who hasn't been through what I have been through would have in the same way. I think I have quite good people skills. My experiences have also given me good stickability - I try longer and harder at things that maybe I might have done.
I am really lucky to be able work with Rula and Catrin, two great part time PA's who were friends of mine from school - they are my safety net. They keep my memory on track and help me with the things I need a bit of support with and (and this is really important because illness has had a massive impact on my social life) they are my going out/shoulder to cry on/ cheerleader buddies.
I try and be as involved in Found and Seek as much as possible however I am not 'working' in the business. I am not ready for that just yet - I may be great today but need to leave at half two tomorrow because I am exhausted. I might need to time off because I overdid it the day before. There have been days we planned to make candles but I have got to the workshop and found I am too wiped out to focus. Some days are better than others. However, I am confident that I am getting there and at least now I do have some idea of where 'there' is. I hope that over time I will be able to start 'officially' working. (It may be part time, it may not even necessarily be in our own business but I hope it will have a creative element). When that time comes I will have skills developed over the last few years and then....who knows?....I hope to pick up where I stepped off. Life will never be quite the same as planned but, do you know, the alternative isn't looking so bad.
One of the main ways that I have changed how I view the world is that I think I have become more 'sideways' thinking. Before, I was used to following instructions - do A and B and then C happens. Having a brain injury means that sometimes A and B doesn't always result in C. That might be because of memory problems, it may be because of tiredness, it might be because my dodgy balance stops me, it might because my damaged peripheral vision affects what I see and my reading and writing, it may be for all sorts of reasons. Because of this I have become quite good at coming up with alternative solutions to problems. Sometimes these are really simple. When we were weighing items working out the postage costs for the online shop, rather than write each weight down next to a description (which takes ages for me to do) I took a photo of the item on the scales so I had a record. Obvious yes? Creative definitely. Lateral thinking is going to be the focus on my next blog by the way.
So, I think I have gone on quite enough for my first blog post. Just remember .....when life gives you lemons.....don't make lemonade! that is far too dull and predicable. No, make a lemoncello martini, make a lemon chiffon cake, make lemon curd, make a tarte citron.....
Got lemons?........get creative.