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.