Monthly Archives: August 2012

Being Ok With Being Visible

A little over two years ago I wore my dad’s clothes. I cut my own hair with kitchen scissors. I never went near a mirror, I physically looked like a 10 year old boy. And l lived in mortal fear of a man so much as looking at me. Now I don’t do any of those things. Here’s how I got from there to here-you know, just in case you fancy giving it a go yourself…

For a long portion of this journey being visible is far from ok. Being visible has been such a traumatic thing for so long it doesn’t seem like it will ever be an attractive option. People stare when you weigh half of what you should and can’t sit up properly on your own. They stare when they recognise you in the street and are shocked by what they see. It’s not a nice feeling, especially when you can’t see things changing anytime soon. The entire world seems far, far too much for you. No wonder you want to hide.

I don’t think it ever would have occurred to me in a million years that men would ask me out. But maybe subconsciously it did because wearing your dad’s clothes is going to definitely put a stop to that.

I knew I had to overcome my aversion to being seen or noticed because if I wanted to show people they too could get better, (just literally out of the bed/wheelchair though not actually living a nice full life-I didn’t know that was even possible for me at that stage so I couldn’t know it was possible for you), I was going to have to figure out a way to get on tv where I could speak to lots of people at the same time. And as far as I could see people didn’t tend to hire girls in their dad’s clothes.

I started small. Took baby steps with wearing things that would be just about described as dresses. Heels were out obviously as I still couldn’t walk that well. I may have bought some on eBay and kept them in my wardrobe so I could look at them when I was feeling brave.

I stopped cutting my hair with kitchen scissors and just let it grow. I bought makeup and put a little bit on here and there. I got really brave and got my nails done one day. It was nice and non-traumatic as it turns out l didn’t have to actually speak to anyone so I went back…

I took my glasses off so I couldn’t really see if people were looking at me, l wore my headphones in case blokes tried to talk to me. A kind of mobile sensory deprivation tank if you will. (Confession time-I still do both, purely out of habit, even though neither really work anymore).

It was a gradual and basically horrible process but I got braver and got more used to the outside world and the people in it as my body got stronger. I got less afraid of people noticing me. It didn’t feel traumatic like it used to when l was being pushed around in the chair or when I was trying to walk. My body forgot and so did I.

I like clothes now. I enjoy that I get to dress up for work. I don’t even feel visible anymore. I’m too busy being happy that I have the freedom to do anything I want without being scared and sick all the time. I think what’s happened is my love of life is reflected in the way I choose to present myself. And the people who have known my two years or less have absolutely no idea it doesn’t come naturally to me. That I had to fight myself every inch of the way to make sure I got here. I like that the struggle doesn’t show.

So if you are hiding away in your dad’s clothes right now. Or cutting your hair with kitchen scissors. Or avoiding mirrors because you don’t recognise that person staring back at you. It does get better. It will feel easier.

Be nice to yourself. Just keep taking those baby steps safe in the knowledge you are headed in the right direction. I’ll be waiting for you when you get here.



It’s All About Control

If you can get to the point where you can control your own body then wonderful because that is the ultimate goal. That’s why I made That’s why I do what I do for a living as publicly as possible. Why so many of you get in touch.

Until that day comes (and it will) you always have control over your thoughts. Always. No exceptions. And that’s important. It’s so important. It’s the most important lesson this entire experience will teach you -or any of us.

It may take some practise. But when you get good at it not only will it seem less important that you can control your own body-but controlling other people will be a totally redundant issue

That’s probably the biggest behavioural shift my own life after has brought me. Before I got sick I used to believe it was everyone else’s Job to make me feel better. That my thoughts were a law unto themselves. That I could never change who I was. That my personality and beliefs were set in stone. Then it really was just me and my thoughts alone for hours, days, weeks and months. And I had to change my thoughts to survive really.

It wasn’t an overnight change. I still very much wanted someone else to get me well. Obviously if they had I’d still be the same person I was back then. Holding other people responsible for my emotional well being. It was deeply scary to realise no one could fix my body for me. It was incredibly freeing to realise I could fix my thoughts whenever I wanted.

It’s important to feel you can control something. When you’re an adult and you can’t physically care for yourself in the most basic of ways. If you can’t feed yourself, if you can’t wash yourself. If you can’t do any of the things grown ups are supposed to be able to do then it is soul destroying enough without having your thinking work against you too. So controlling your thoughts is the only real option left. Not because it seems like an attractive new age concept written for the Self-Help section of Waterstones. But because it could be the difference between you surviving this part or not.

Because I was isolated away from people for such a long time whilst I changed my thinking, I didn’t even realise how much my attitude to their behaviour had adjusted. Because it was really years before I was capable of normal social interaction-I really spent my time just trying to cope with being around people again-it came as a massive surprise when their behaviour didn’t affect me.

I still liked it when people were nice. I just never took it personally when they weren’t. If someone wanted to be my friend/employer/boyfriend and I felt the same way then lovely. If not then it didn’t seem like the tragedy it would have been in my old life, where I took everything personally and seemed to seek out reasons to not feel good enough.

So now I have a body that works, a mind that is my friend and my life is spent with people I like who genuinely want to be around me too -without me needing themto behave in a way that I believe is going to make me feel better about myself.

And If ever any of the above stop working I know how to fix them. That’s real freedom to me.


Falling in Love With People Again

Parts of recovery I expected. I knew I’d get to the point where I’d be able to walk far enough away that I wouldn’t be able to see my house. I knew the day would come where I’d be able to use public transport again. That I’d be able to walk around a shop, or stand in a queue at a bank. No details, just tasks to tick off a list.

One thing I never expected was to be able to enjoy being around people again. I really thought I’d never get there. I remember reaching the stage where I could sit up in my wheelchair so my mum could take me out on errands with her. I’d been away from people for so long that it was distressing hearing and seeing so many in one place. Then there would be the way strangers reacted to me, seemingly managing to stare at me whilst totally ignoring me in conversations that were conducted far above my own head height.

Worst of all was the reaction I’d get from people I knew. People who had known me for years. The horror on their faces at the state of me. 6.5 stone and being pushed around in a chair I could barely stay upright in by my tiny mother who I’d towered over for years. They were mortified. I was mortified. Nothing good ever came of any of the exchanges. It just shut me down further.

Then there was the point I could walk, badly, and I was scared, incredibly. So I’d try and conduct conversations whilst grabbing onto things to steady myself and stay upright. Shaking violently, my body, my voice, I sounded and looked like an old lady. Again the reactions I got were never good. Again it just made me retreat further.

So I just stopped speaking to people. The only person I would talk to was my mum, she was the only one I trusted. I persevered and got good enough at walking that I looked normal, and just stayed as quiet as life would allow me.

I watched though. You get a lot of opportunities to people-watch when you have to spend time sitting down and resting between walks. I’d see girls my age just sitting around in groups, laughing, chatting, just being totally relaxed, it looked great but I knew it was over and never going to happen for me.

Then I began to realise I could talk to children with no problems. Children don’t notice if you are different. They either like you or they don’t. So l would hold conversations with a 3 year old no problem…and slowly progressed from there.

Life went on, l was now well enough to do the Bare Minimum. I’d go to work, l’d keep it together most of the time by pretending to be normal, then I’d go home. I’d exist. I wouldn’t socialise at all, it was too hard, and I was done with everything being too hard.

After living like this for far too long I realised it had to be worth the trauma of speaking to people socially just so l wouldn’t be alone anymore. I knew I’d never be very good company but at least I’d not be existing entirely in solitude. So I would go meet friends one at a time, for an hour. And it was dreadful, I was as panicked and uncomfortable as I had been since the first day I left the house. Some weeks I gave up and went back to solitary living. But most weeks I did ok. I did that for a year.

Then one day it was just ok.

It really was that Simple. One day I just had a conversation with a stranger that I really enjoyed. So much so I didn’t care if I was shaking or my voice was shaky or if I could stand up that long. It was beautiful. It was life affirming. I’d finally got there. I’d fallen in love with people again.

From that moment on the love affair has gotten stronger and deeper. I appreciate every exchange I have with every person I meet. It never goes away. The enjoyment factor is indescribable. the glass partition I felt separating me from life finally lifted. It was worth every second.

It’s been the best thing that’s ever happened to me. My life completely changed because of it. I feel more love than I ever thought possible. I’m better with people than I ever was before my Life After began. It’s a blessing and a relief I am eternally thankful for. To be with someone and be able to connect with them and feel a part of the world and be ready for it is like being in love with the entire world.

I spend a lot of my conversations with people just saying thank you in my head. Thank you for saving me. Thank you for bringing me out of the darkness. Thank you for letting me love like this. Because that’s what every conversation is for me now. That’s what every single person does.

Thank You