Getting a job isn't the problem. I look at adverts and they almost always quote "must be fully flexible" I read this, and I sigh, because for someone who is, literally and physically, fully flexible employment is never easy.
I got my foot in the door of the world of work at age 15. I was young, still in school and as most schools in the United Kingdom (and elsewhere) offer a week of 'work experience'. I applied to do my work experience in a concept store in Belfast City Centre. After a weeks placement I was offered a permanent part-time job there, where I mingled with artists and creatives who displayed their artwork there. I gained a lot of confidence which I hadn't even dreamed of having previously and got involved with modelling and events along with the company. I felt invincible. I could bend myself in shapes others couldn't. I could reach the top shelf in the storage. It was during a weekend at a festival where I worked like a trooper that I had one of my first seizures. It was in St.Johns ambulance that I deliriously fell in love with the ambulance staff who were oh so kind to me.
None of this really scared me out of work though, or life and it seemed to be just a one off at that time. I went on to work in art stores, supermarkets, rugby clubs, bars and bargain stores before deciding that working for someone else is not for me. It occurred to me when I was humiliated yet again by having seizures before, during and after shifts. Something was wrong. My body was limitless and I had to hold it together, as well as hold so much more whilst on the job.
I have a relatively rare (or perhaps, rarely diagnosed properly) connective tissue disorder, called Ehlers-Danlos Syndrome. My shoulders pop in an out multiple times a day. I need to be careful during sex, as my legs can spread way further than that of a lady without Ehlers-Danlos. My elbows are unstable and my knees jitter when I am under stress. When I shiver, I sublux. When I was working on checkouts, I didn't do myself any favours, stressing my joints with each product I scanned through the checkout, or when I worked in the bars, pulling pints, or waited tables for functions, juggling hot, heavy plates in my unstable arms. I was as strong as an ox when I started out my working life, but by the end of it I felt like a 90 year old woman. I went into the world of work feeling invincible, fully flexible and it brought me to unemployment.
My body is strange and was strange the whole time, and I thought it was normal. Like many other people with Ehlers Danlos, I thought my abnormal body, my aches and pains, the dizziness I felt when I stood up, was all normal. Any pain and discomfort had motivated me to do better, work harder and breathe deeper, enduring the pain, until I decided that although I was able to land myself a job anywhere, with my gentle and friendly demeanor and perhaps my Irish charm, this sort of ambition was not helpful.
I see my friends posting on social media about landing jobs and how chuffed they are. I struggle sometimes with money and if I'm honest, I miss the structure of having a job, I miss the money from over-time. Working for someone else is, in a way, easy. You don't have to deal with the paper work, you don't have to run the show. You just have to be a monkey, and that's easy enough for some people. However, as with a lot of things here in the UK, jobs are scarce. Employers are stingey because they cannot afford to employ as many people as the businesses actually requires. This puts a lot of stress on the people who are 'lucky' enough to have a job in the first place.
Before I was preoccupied with being a workaholic I wanted to be a writer, but of course I was discouraged by a lot of people, because writing would never be a full-time job. Even my art college attempt wouldn't land me a full time job as an artist. In my opinion artists were starving and crazy. Very recently, however, I began reading a book by Julia Cameron called The Artist's Way and it is changing my life for the better. I highly recommend it for anyone who is emerging from the corrupt system and wishing to bring their creative self back to life.
Big love to my fellow Zebras and Spoonies!
Full Steem ahead!
Persons who are healthy, wealthy and life has been kind, their pains all small, it is easy for them to advise the rest of us on the importance of remaining strong and fighting back, daring to overcome.
To me, one sentence from a person like you means much more.
I am old enough to have had a friend, a late teen, many-many years ago, who was paralysed by polio. My god, she just never gave in. She wrote poetry, she loved being taken out to see sunsets and I shared a golden Greek dawn on the beach with her once, after spending all night at a disco. She had the courage to fall in love, though I suspect there were times she wept in private.
She would have loved what you wrote above.
I'm following.
thanks for sharing your valuable content..i think you are good creator of steemit...carry on my friend...
I am so excited to find you. Well you found me. Thank you.
I am a zebra and a spoonie. I was introduced to the concept of spoons from @novaatebatman. He was thinking about a chronic illness support / initiative / something... on steemit. I couldn't get it together at the time, but it is needed . I will send this to him. The cat-man has some great ideas.
@kintoallbeings is a zebra too. She is really informed about all things bend and collagen defunct. She doesn't post enough, but when she does it is good.
Awh, thank you for reading, re-steeming and linking me with the Zebras you know here. I also think that would be a great idea about the support initiative, but being a newbie, I wouldn't know where to start. I'm sure we'll get it together at some point. Really loving steemit and think it has brought me together with some really cool people already.
Your post is very nice