Why do I think of myself as not normal

And does it really matter?
Photo by Trent Erwin on Unsplash

I love watching travel and wildlife programmes. I find them quite peaceful and easy to watch, especially before going to sleep. The cinematography is stunning.

They inspire me to want to see these places and things for myself. I am thinking about things I would like to be doing or things I wish I could do. I always think ‘if I was normal I could be doing that’ .

What is this ‘normal’? I spend most of my time writing about how disabled people should not be seen any differently to able-bodied people, about accessibility, about attitudes, and yet, in my private thoughts, I am basically defining myself as not ‘normal’.

I am going to attempt to explore why I do this.

When I had the first symptoms of MS my normality began to be something I didn’t recognise. Suddenly I couldn’t do all my ‘normal’ things. Just getting out of bed in the morning became strange.

Normal life was disrupted. Everything changed. Nothing was ever the same again. And so it has continued.

My ‘normal’ is wheelchair life. I have written about this before, so I won’t go into it again. What I want to do is examine why I think that what I am now is not normal.

This is really a terrible opinion of myself, and goes against the grain in every sense. I would never dream of defining someone else like that. I don’t think about with regard to others.

‘Normal’ defies definition – each person has their own normality. It’s the very misunderstanding of that which causes so much hate and prejudice in this world. We mutter and gossip about the lady in the house down the road because she dresses weirdly and has 20 cats. We look at people and define them as ‘different’ because they don’t fit our ‘normal’

Everyone’s normality is different. It belongs to them. It is their own. And we do not have the right to judge people in those terms. In fact, my personal belief is that we don’t have the right to judge people at all, but that’s because I’m a live and let live kind of person (if someone is inflicting harm because to them that is normal behaviour then that is a different story).

So why, in my private thoughts do I think of myself as not normal? I think the answer lies in my own mental processes. I know that there is no coming to terms with a big life-changing event, whatever that may be, but you can learn acceptance.

After 15 years I really thought I had achieved acceptance of my condition and what is in effect a new way of life. But am I kidding myself? To think that I might be living a lie, and that somewhere deep down I may not be being true to myself is horrifying.

Sometimes I have found myself saying out loud ‘oh I used to do that when I was alive’ ……. what the hell is all that about. I believe that I have mentally drawn a line between before and after. Between life and……….what. Not a ‘normal’ life clearly.

Given that these thoughts come to me totally unbidden, almost automatically with no warning, I’m not really sure how to tackle this weirdness. The mental process by which I have drawn this line must be so deep it’s impossible for me to control.

Does it really matter?

As I’ve pondered this question in my mind, over time, my thoughts are that perhaps, for me, no, it doesn’t matter very much. I cannot believe that I am the only disabled person, particularly when, like me, they have an unimagined new ‘normality’ after an active life.

People who develop chronic illness and those who have had accidents, whatever, must contemplate their life limitations deep down. How do other disabled people feel about themselves in their private thoughts?

Up to now these have been my private thoughts, but I decided to write about them because I wanted to see how it would feel to let them out. Now that I have, I can see that, for me, it actually doesn’t really matter. I refuse to be haunted or daunted by thoughts that have the ability to impact my mental health

If I don’t dwell on it they are fleeting regrets, if I think about it too long, which sometimes happens it’s just a sadness. Everybody, disabled or not, have thoughts that cause them fleeting regret or sadness, that is perfectly normal.

The trick is, when my thoughts go down the path of ‘I will never get to do that now’, is to let it pass by without lingering. It’s when you linger on those thoughts that they can lodge in your mind and cause real anxiety and distress. That’s something I, for one, am anxious to avoid.

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Writing a blog is my grown-up project

And it means a lot to me
Photo by Thought Catalog on Unsplash

Talent comes from originality which has a special manner of thinking of seeing of understanding and of judging.

Guy de Maupassant, Pierre et Jean

I recently read some blogging tips. The advice was ‘start with a small project’. It made me think.

What is a small project? Does it mean writing a short blog. Or writing a blog and doing some small scale marketing for it. Or maybe something else, like organising all the rubbish that you collect and putting it in some sort of order.

When I was young, I loved projects. We did them at school. I remember doing one on the cocoa bean and how it gets turned into chocolate. I wrote to Cadbury’s and asked for any information they could give me and they sent me loads of interesting stuff.

I collected information about hotels I stayed in with my parents (they were great travellers- we went all over Europe, by car, quite unusual in the 60’s), and when I got home I would write projects on them all. I drew pictures, stuck things in, I was really creative.

I suppose they were small projects. At the time, to me as a child, they seemed like big projects, and I loved them. I enjoyed organising things in a scrapbook or folder. I wrote commentary on all the information I had collected and I wrote about our travels.

When I think back now, as a child I was quite imaginative. I loved reading and at the age of nine, would walk the short distance to our local library. I would browse for ages and would always go home with three or four books.

I would write stories, which my mother would read and would tell me I had a great imagination. When you are a child, it seems you are uninhibited by all the self consciousness that suddenly takes over your life when you become a teenager.

I certainly felt like that. Suddenly, I could no longer write stories, do projects and I had no inclination to do it. My teenage years were not happy ones. I was uncomfortable in my own skin and learned to live inside myself.

I am still fairly introverted. I have never been happy in a crowd. I never really liked parties, preferring one-to-one, or a small group of people I was completely comfortable with. I was probably a bit of a dork!

Photo by Sigmund on Unsplash

Even after I was married I remained uncomfortable in large groups, and preferred the company of my family and close friends. Age has taught me that the number of close friends you have is fairly small. But they are the ones that stay with you through thick and thin.

Becoming disabled has reinforced this. My close friends are still there, supporting me, bringing cake (that’s how well they know me) and humour to my life.

So I’m happy being an introvert.

I started a project – this blog. I suppose it was a small project to begin with, but it now looms large in my life. I don’t claim to have great talent but I always wanted to write, and I always imagined living in a cottage by the sea and writing to my hearts content.

Well, life didn’t quite go that way, but I’m writing. I love it. I couldn’t live without it. It’s given me a purpose in my limited life. I don’t get to publish as often as I would like, life intervenes. But I don’t plan to give up on this anytime soon.

So, please keep reading. This is one project I’m happy to share.

Photo by Muhammad Haikal Sjukri on Unsplash

Why good notes are a must for writers

Organise your notes to avoid scraps of paper!

Photo by Tai Jyun Chang on Unsplash

I listened to an interview with the fiction writer Louise Penny recently. She said that she had suffered from writers block, and had seen a therapist.  She learned that the biggest obstacle to writing is fear. Fear stops thoughts, ideas and characters entering one’s mind freely and then being transferred onto paper. Recently, I heard the quote ‘the only thing we have to fear is fear itself’ (F D Roosevelt). The next day, I opened an e mail from the British Library focused on writing, Then, quite coincidentally, I read an article about President Roosevelt in which the same quote appeared.

This seemed to be telling me something. That I should overcome my fear of the blank page and just start!

It all depends how I feel; if I’m having a bad MS day, if I haven’t slept well. If I need more coffee! Most importantly, whether I can remember an idea that may have floated through my brain and out again three weeks before!

I’m sure it is a common problem for a lot of writers, especially if, like me, they are fairly new to the process. There is also the fact that writing is never a matter of just the idea or the content, but the spelling, the grammar, the constant re-reading, editing, the list goes on. Even if you are mostly housebound and sitting in a wheelchair all day, when you think there would be limitless time, it never quite works out like that.

I just read an article by Brian Ye published in The Writers Cooperative, a Medium Publication.  In it, he describes how note-taking is invaluable in the process of writing.  Whether you use a notebook and pen (as he did for a long time) or electronic note taking (as he does now), being able to jot down ideas when you think of them can help to build a comprehensive list of ideas which should help to overcome the fear of the blank piece of paper or screen.

I do make notes rather sporadically and in a haphazard sort of way. I use the Notes app on my iPad. The problem is that a random idea can be lost amongst my very disorganised pages, which contain telephone numbers, appointments, names, lists – trying to find some idea in that lot is almost impossible. Even if I do find it, it’s usually so vague that I’ve forgotten what it was in the first place!

So, inspired by Mr Ye, I have decided to download a note-taking app and use it properly. Thank you Sir.

Photo by Alejandro Escamilla on Unsplash

How to Keep a Notebook of Ideas Close (and Why) Brian Ye https://writingcooperative.com

How My Life Changed Almost Overnight

And what I’ve learned

Photo by Kinga Cichewicz on Unsplash

In 2004 fear took over my life. This is when the first symptoms of MS began, and I had no idea what was happening to me. I went from a fit, active person to someone who could only walk a short distance, had difficulty driving, could no longer type with both hands and so many other things. Almost overnight.

The fear was intense, I suffered panic attacks, I cried a lot, lashed out at my husband and he at me. This was completely alien to me, we had been married for a long time and for the most part happily. Neither of us could understand why I kept falling over and had to rest for half an hour after my morning shower before I could get dressed!

I went to my GP. It took six months to get an appointment with a spinal surgeon, who sent me to a Neurologist. He told me I’d had a stroke!

After a hospital stay and every test known to man, waiting another four months to see the Neurologist again, I was then a ‘puzzle’.

Another stay in hospital, a visit to Queens Hospital in London, where some random doctor bashed me on the head several times with what looked like a tennis racket, still no answers!

After another four months waiting to see the neuro again, by which time he’d forgotten who I was. We told him we were going to live in France (see https://bellesdays.com/20/11/2019). He more or less said ‘have a nice life’ or words to that effect!

Whilst in France, I had two further MRI scans and, finally, after six years I was told that I had Primary Progressive MS. It came as a huge relief that I now knew what I was dealing with, and huge sadness because I knew that I would always have it.

I was in a wheelchair by this time anyway and I was getting used to the fact that I could no longer stand up.

Despite everything that has happened in the last 10 years since my diagnosis, here I am. I’m not saying that I’m not anxious, I am a lot of the time. You never come to terms with having everything taken away, but you learn to live with it, and to enjoy the new life you find yourself living.

I maintain my interests, reading, politics, food, I have taken online courses and learned (am still learning) to blog. Having MS in whatever form does not mean not having a meaningful life, just a different one.

We came home from France in 2016. It was quite a difficult decision but the right one. Life is too short to miss being around family and friends and watching your grandchildren grow up.

This is my story. It’s taken me 16 years to reach this point. Life is never simple. Everybody’s MS is different. I won’t say the fear has completely gone, I don’t think it ever will. People ask me why I’m always smiling. I say that I have two choices – I either do or I don’t. For me it’s not a difficult choice to make.

Read more

https://www.ms-uk.org

https://ms.newlifeoutlook.com.

https://www.sueryder.org

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