Not a textbook case

When it comes to disability, and a diagnosis, we need help with understanding how the symptoms to the diagnosis will manifest itself in every day life.

Sadly, unless you’re a typical text book case, doctors and consultants have no idea how someone with a disability will live their life. Doctors present a future based on a diagnosis and not on the child and what that child might or could achieve with the right support. Consultants are usually book read, but children are much more than their diagnosis. They often go on to achieve more than they’re given credit for.

As I continue to prove, there is always more to a disability than a diagnosis. I’ve had to work through my symptoms to understand how I present as an individual, verify my impairments are, to understand why I think the way I do and how I present myself to the world. My diagnosis may be text book case, but my symptoms certainly aren’t.

Because my emotions and feelings are extensively damaged they are completely rewired. Everything that you think or see as normal, I think and see the opposite. Where things look distorted, I have to make them feel normal, for them to look normal. As a result of impaired emotions, my emotions are flat-lined, for example I don’t get exited or elated. I also don’t see my successes as accomplishments.

I remember being signed off at 15 and told to go and live my life by my consultant, but realistically that wasn’t going to happen without me being able to work out what I dealt with. That was the biggest issue for me, the other big issue was that how I present was not only going to affect me, but everyone else as well.

It would be like asking them to accept that part of me which they don’t even understand, because each day is different and because my emotions are impaired. I feel completely responsible, not because I knew and kept my disability a secret, because that’s not the case, but because I feel I am a burden.

Fifty-five years later and I am still evaluating my symptoms. I shall be looking at and blogging about my ‘hemiplegic’ diagnosis, shortly in a personal blog.

6 Jul, 2018

6 thoughts on “Not a textbook case

  1. Sadly, I wish I would have had the chance to do more for my daughter, seeing as I know that she could have accomplished so much more than she has.

    They never really pushed her to do much of anything, and in the end her mother used her as a ‘surrogate wife’ for her husband which is pretty damn pathetic.

    Even though you never really knew the reasons for your issues, you learned how to adapt, but it would have been a lot easier had you known, which I’m sure bothers you at times.

    People seem to think that we should just get over it, but it hasn’t ever been that easy for me. I watched a movie last night called, ‘King of California’ that reminded me what my childhood was like at times, with a father who had a lot of bright ideas that ended badly, usually for us kids.

    It would be great if dealing with our issues went by the book, but most of the time they usually didn’t, which is what I think frustrates a lot of people, especially when they don’t have to deal with them themselves.

    What exactly do you do when you don’t have the book, when nobody tells you that you need it to be able to function out in the real world?

    I think the worst part of it all is that people knew, especially in your case and didn’t seem to think that you needed to know so that you could have learned to live with your issues when you were young.

    It does sound like you have done pretty well for yourself in spite of everything, but I’m sure that it must have been very complicated especially being a parent.

    You’re such an amazing person who has helped me tremendously and deserves a lot of credit for what you do for yourself and others.

    1. Awww thanks Randy that’s so kind. You’re absolutely spot on in your response about my circumstances.

      There’s no point in dwelling, it doesn’t help. With the right support in place I may never have got to do what I’m doing now, so it has worked out.

      I get to work through my experiences and understand those and help others too, so I’m happy.

      We can only do what we can do now. Even with your daughter you cannot turn back the clock for her, but you can move on together and make up for lost time.

      I’m pleased what I do helps you too. Through my blogs and my website we support one another. I couldn’t do it without you.

  2. How primitive human behavior is that someone who would make you feel like you’re a burden. To the contrary, you’re a gift, who used her mind to navigate around humiliation, instinctively.

    You literally had to be out of your mind and body to reach as far as you did. Your power is alive Ilana.

    1. This is why my Diary works.

      You have given me a different way to think that I didn’t have before. When you’ve been subject to hostility your whole life, it’s not always easy to think, or see outside the box.

      Being on the receiving end of another person’s hostility can make us feel like a burden, particularly when it comes to a disability.

      You have now given me a different way to think Tim. I needed this.

  3. In reality no one is a textbook case, but even in that context, yours is completely unique. We all benefit greatly from your strength and resolve.

    Randy’s final sentence says it all.

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Ilana x