My Spina Bifida diagnosis

Although I initially dismissed having spina bifida because I had no obvious symptoms, my medical notes clearly state that at the age of 14 in 1977, that is what I had.

In that same consultation and again in my notes, the specialist confirmed that I would have some mental retardation, the extent of which he wished to assess through my development. In today’s society ‘mental retardation’ is classified as ‘learning difficulties.’

A cerebral palsy diagnosis is never straightforward and is specific to the individual. The neurological symptoms linked to each case change how a person will function and the symptoms they have that are linked to the original presenting condition, are not always evident, as my circumstances have shown.

Having looked through my notes once again, in the same consultation with the specialist on the ‘mental retardation’ diagnosis, my father’s opinion was that my inability to learn was due to a ‘poor memory’ and that is what the specialist repeated back in his letter to my General Practitioner.

What I find difficult to get my head around, is that where my needs should have been met, they weren’t. I find that difficult to comprehend. My emotional and mental challenges were ignored. Where my symptoms were dismissed and I was told there was nothing wrong, it intensified my resolve.

But not knowing about my diagnoses and symptoms as a child means that I am now having to learn about and work through these as an adult. As I continue to write and uncover more of my symptoms, I will start linking everything together so I have a fuller picture of my disability.

I am thankful I have my diary to help me piece my disability and experiences together.


27 Nov, 2017

6 thoughts on “My Spina Bifida diagnosis

  1. Yes, it is so very frustrating when you look back and see that where your parents should have stepped in to help you out, but they chose to act like nothing was wrong.

    My parents routinely ignored any of the needs that we may have had, like proper medical care or things like a winter jacket in the middle of winter.

    It just boggles my mind that any parent would knowingly allow their child to suffer for any reason, rather than help them to deal with their issues no matter what they may be.

    So often it seemed like my parents knew what was going on with us, but chose to do nothing about it seeing as it would have inconvenienced them to do so.

    It is truly such a shame that this happened to you, too, seeing as it was something that could have been dealt with.

    1. Thanks Randy. Yes, sadly no child should have to go through these things. I feel for you too.

      It doesn’t make what’s done right, but we must make the best of what we’re given and change these things for our own children, so that history doesn’t repeat itself.

      That’s where we get to make amends. Of course, it doesn’t make our experiences any easier. Having to work through our experiences can challenge our resolve, but we must live with hope.

  2. Your story comforts me like a shadow, with your remarkable self-preservation. I am listening and learning Ilana.

    But I gave up trying to pretend I’m not angry about what happened to you.

    1. Thanks Tim. Your support through your responses and understanding my plight is more than I could ever have hoped for.

      There comes a time where it’s right to give up the fight, that being replaced with us being pro-active and accepting so that we bring more understanding into the equation. This is what I chose to do.

      It doesn’t replace what happens, others are still held accountable for themselves on the way they treat us, but it just means we don’t have to hold on to the anger and that’s the start of the healing process.

      The CP Diary, my blogs are a culmination of my experiences and understanding. With understanding we get to see and equate other people’s decisions and that helps us

    1. Thank you! As a child I’m not so sure, but there’s no point in wishing our life were different when it’s not. We must face our realities sooner or later.

      It doesn’t take away the hurt or pain of course, but dealing with anger through abuse, helps us move through the hurt, into more calm waters.

      I can never change the catalogue of abuse, but I can change my perceptions to it all and that’s what I continue to do.

      Had things been done differently, I wouldn’t be where I am today with my writing.

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