Disability issues

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.

Photo by picjumbo.com from Pexels

19 Comments

  • Marushka

    “Oh I used to do that when I was alive” – what a powerful statement. I think the experience of “normal” is often a sort of suspension of disbelief, and losing that ability is the dividing line between “normal” and whatever is on the other side. It’s a bit like being caught out of time, an observer to the lives around. You are absolutely right, it makes a difference to choose to not pursue the anxious thoughts – they just seem pull one further out of time. Thank you, as always, for sharing your wisdom and your words.

    • Belles Days

      Thank you Marushka, you’ve got it absolutely right. I hope you are keeping safe in this rather a strange time. At least we can communicate in our blogging community and with our loved ones.

  • krc

    your thoughts must be what my Pops thinks about as he sits outside of our home for hours upon hours

    he can’t talk anymore after his first stroke

    he’s had 3 strokes thus far

    doctors have always said he will never talk again because that partr of his brain has been damaged permanently

    Thank You for sharing your story on your blog

    I’m sure it is a help to many who share your disability

    • Belles Days

      I’m so sorry for your Pops. At least I can talk even tho I can’t move. I cannot imagine what it’s like for him. I’m sure he thinks that way too but he cannot express it poor man. I’m sure you give him all the love and care you’re able to and I’m sure he knows it. Take care in the strange time we’re living in. Thanks for your comment x

  • potatosandwich

    Do we consider normal being what the majority are able to do or perform? Or should normal be measured upon the level of independence one has?
    If from birth to an age of ‘awareness’ all we have known is getting up, using the bathroom, eating, playing outdoors, going to school, conversing with friends and family. But that at some point something impacts any of these, and we can’t independently do this, then is that not normal.
    So easily we here the phrase ‘oh that’s not normal’ or ‘that’s not normal behaviour ‘. But who are we to be able to stipulate how and when ‘normal’ is passed on a Tag for another person?

    Certainly a tough one and not sure if any of what I said made any sense…..

    • Belles Days

      Everyone has their own normality – it’s simply that my normality has disappeared to be replaced by a new one! It has a great deal to do with identity. When something like illness and disability comes into your life you have to learn a new type of identity. But sometimes you find that your mind hasn’t quite caught up, deep down you perceive yourself as still how you were before. Thanks for an interesting comment. It made sense to me!

  • morgueticiaatoms

    We are all our own worst critics. It’s good that you’re not ‘drinking the Kool-Aid” of that negative voice in your head.
    Intead of feeling abnormal, just think of yourself as extraordinary. You have moxie and that is like a super power. 🙂

  • mentalhealthfromtheotherside.wordpress.com

    It’s a tough one isn’t it. I used to consider myself ‘normal’ and I really regret not paying more attention and respect to physical illness and disability. I was a mental health nurse and ward manager for many years, and that’s where my focus lay.

    And then I got sick. I developed a rare disorder called Transverse Myelitis (TM)which is considered a relative of MS. In TM the lesions are in the spine only, where in MS there’s lesions on the brain. Despite the various symptoms I have, fortunately, I’m not in a wheelchair — yet.

    It just came on suddenly and at the end of day 3, I was paralysed and had not sensation from under my arms down. After time, I gained the ability to walk, although I stumble and fall and lots of people think I’m drunk. Initially, I didn’t want to live if I couldn’t be ‘normal’. I lost the best job in the world due to medical retirement and like you, I really try hard not to dwell on it. It’s just hit me again writing this. Off to distract myself.

    You stay safe and well. Caz x

    • Belles Days

      Yes TM is very like MS. I have PPMS and all my lesions are on my spine too at C4, which means I can still swallow and breathe but I have no real movement in anything but my right hand. I am in a wheelchair and have been for 10 years. I think I fought being defined by this thing that had suddenly ended my life as I knew it and that made it doubly hard. Once I had accepted it was never going to change it eased a bit. But as I wrote in my post somewhere in my sub-conscious I’m obviously drawing a line between then and now. Please don’t hesitate to message me and rant if you want to or not as the case may be! Thanks for reading my blog post and for commenting in such an honest way.

      • mentalhealthfromtheotherside.wordpress.com

        My lesions are on L5, C5 and 6 which all mean I bowel and bladder dysfunction. I have no internal sensation so when I need to go — I really need — right now! Sorry about typos in my last post — I’ve just reread it and I hope you’ll forgive me saying “Fortunately, I’m not in a wheelchair”, I hope I didn’t offend you.
        And yes, I’ll be keeping up with your posts and know where to come for a rant 😉 Caz x

        • Belles Days

          I know what all that is like. My bladder was one of the first things to go. After 3 years of an in-dwelling catheter and numerous infections I had a urostomy, best thing I ever did. My bowel was a nightmare, I now have a system called Peristeen- an irrigation system which has changed my life. My Community nurses come in and do it twice a week. I’m not offended by anything everybody’s situation is different and unique. I found it a relief to go into a wheelchair permanently because walking had become such a struggle, but if you can go on as long as you can all the better.

          I didn’t notice any typos so don’t worry about that either! Keep in touch Belle x

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