My Spina Bifida diagnosis

Not only am I living under a continual cloud around my health issues, now having looked through my medical notes again, although I initially dismissed having Spina Bifida because it wasn’t an obvious diagnosis and the conversation was between the Specialist and my father, my medical notes clearly state that at the age of 14 in 1977, the Specialist confirmed that is what I had.

Now I know this is something else I have to deal with. In that same consultation and again in my notes, I was also diagnosed with mental retardation at the same time. In society today, ‘mental retardation’ would be known as ‘learning difficulties.’ My parents were supposed to work with the specialist, but that was ignored.

Sadly, a Cerebral Palsy diagnosis is never a straight forward path, because not only are there neurological symptoms linked to the disorder that changes how we get to function in our lives, but we also have other diagnoses that are linked to the original condition that we don’t always know about.

I tend to skim when I read but now having looked through my notes once again, this time reading more thoroughly, in that same consultation with the Specialist, on the mental retardation diagnosis, my father’s opinion was that my inability to learn was simply down to a bad memory, as that is what the Specialist repeated back in his letter to my General Practitioner.

What I’m having difficulty getting my head around is that where the needs of a child are supposed to be met, in my situation it was only the needs of the parents that mattered. My emotional challenges were ignored. Where I was told by certain family members there was nothing wrong, this is further from what was really wrong and is part of my struggles today.

Not only is what happened a warped way of parenting, depriving me of knowing my diagnoses and symptoms means I’m still having to work through those, rather late in the day.

In another personal blog, I will try to link everything together so I have a fuller picture; but at least for now my experiences are beginning to come together. I am thankful to have my Diary to help me.

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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