Having written about cerebral palsy for 10-years and trying to piece what I know is a disability now, I am struggling to come to terms with the enormity of being left in the dark for too many decades.
It goes something like this. You live with symptoms you didn’t know were symptoms, you struggle, you continue to fail, you struggle and you fail again. There is no empathy or compassion around your disability. Judgments begin to form on your capabilities, then four decades later there is a glimmer of hope, when your mum says something that makes you think about what you've been dealing with for all of those years.
You have an Explanation for the First Time
The information you’re given allows you to question what you have and for the first time, which helps explain your physical symptoms, because you can see those, but then there's still the question of how you cope and present mentally. Starting the process for yourself in your 40's, and you're told by a consultant that you were been born with a disability that gives an explanation for your physical, mental and emotional struggles and then later you find out – it's not really news.
Life Becomes Clearer
Life becomes clearer because you finally have an explanation, a diagnosis, but it still leaves you with burning questions because all you have is a diagnosis with no understanding of your symptoms. You still don’t know what your mental or emotional symptoms are, or why you struggled in school, what those symptoms really mean and you can add a further 10 years to those struggles.
Autism Explains my Learning Difficulties
You start the process again when through a further consultation and more testing, you're told you have autism, which explains your difficulties in school around your mental and emotional struggles. Autism in my case explains why I would always have gone on to fail academically. My biggest struggle was having my physical disability normalised, before I was able to start the process of finding out about my symptoms. It would take another 10-years to understand my mental struggles.
I apologise if I’ve said it before, but it’s not something you really get over. Wilful acts, although hard to reconcile, do bring about a different thought process, when you realise no one had your back.
My parents were responsible for the sequence of events that I had to go through. The part that I still can't seem to get to grips with is the fact that it was my parents who did this, which is truly sad.
Words escape me today, but I can honestly say that it's one of those days where I'm not very anxious to keep fighting these battles, but I keep going since I don't want to give in, or give up anymore.
Thanks Randy. I am pleased you wouldn't want to give in or up, but I can understand why there are days where you can't be bothered to fight.
It may seem easier not to fight, but in the longer term it is always harder. Our childhood sequence of events, pave the way for us to do better. They should serve as a reminder that we must work to make ourselves stronger, more determined for us to make our lives better, to move on from out past.
Yes, it is hard to move away from early conditioning, for one we carry other people's guilt and that stops us, but us wanting do better and move away from our pain, should be at the forefront of our minds.
In my own case, giving in wasn't an option and it has to be said, it was my basic human right to know what I was dealing with. If the shoe were on the other foot, the same choices would have been made.
You have solace in the fact that you have exceeded your expectations, giving the sequence of events that brought you so much pain.
Your past, no matter how egregious, somehow unleashed a women with wings, you're in flight and everyone knows it.
You are no longer invisible, Ilana.
Thank you for this Tim. Without you saying the words, you have acknowledged my experiences and my existence and that has catapulted me into a different place, one that is peace, quiet and calm.
I talk about my experiences in a way that touches people's mind and hearts, but doesn't expose the pain on what I know is true. Through each blog, I sow a positive seed on a painful experience and that changes the way I think about what has happened to me.
Once I have written about my experiences they are assigned to the 'history books' and are no longer in my thoughts.