For 46 years, I lived without knowing I had cerebral palsy.
It's hard to believe. Even now, when I say it out loud or write it down – it doesn’t quite feel real.
I think back to a TV programme I once watched, featuring a 6-year-old boy with Spastic Quadriplegia. His parents and sister were lovingly adapting their home to support his needs. There was communication, community, care.
The contrast with my life couldn’t be starker.
Emotional stability is essential for every child – but especially so when disability is involved. Yet for me, there were no open conversations, no labels, no clarity. I went to the hospital once a year, every year, for 15 years – and not once was I told why. Because it was routine, I never thought to question it. It was simply “my life.”
Only recently, while sorting through old medical notes, did I stumble across a letter – a letter from a Consultant I saw three days before my wedding. I had no idea what that appointment was really about at the time. It turns out, the purpose was to ensure that the disability I didn’t even know I had wouldn’t interfere with having children.
In truth, I remember the specialist seeming confused by my presence. He couldn’t understand why the referral had even been made. My condition, he said, was mild. And yet, there I was – being “signed off” from something I hadn’t been properly signed into.
That letter hit me like a tidal wave: not just because of what it revealed, but because it confirmed what I had long suspected but never dared to name – that my life had been shaped around silence.
Not just medical silence. Family silence. Cultural silence.
It wasn’t just that I was kept in the dark. It was that no one around me seemed willing to seek the light. No questions were asked. No explanations offered.
Looking back now, I understand: people around me didn’t want to deal with my disability. But I was the one who paid the price. As my blogs reflect, sometimes the answers only come when we choose to go looking for them ourselves.
If those around me had made the effort to understand my disability – my neurological differences – I wouldn’t have been dismissed so early in life. I wouldn’t have been left to navigate it all on my own.
When people act out of selfishness, not love, there is little to forgive. Even today, my disability remains hidden. Just as it was back then.
But now, I choose to speak. Now, I choose to write.
My diary has become my platform, my story, my truth. Through my blogs, I explore my life, my disability and everything in between.
This is no longer just a collection of journal entries. This is the beginning of a book.
And maybe – just maybe – it’s finally time for this story to be seen.
You've come so much further, I feel, bringing so many people together, because of your disability. I understand, believe me, how you must feel, but none of this would've been possibly, your Diary; if you hadn't gone through this.
I thank you from the bottom of my heart and soul for bringing this to the front stage. A topic that is still so sensitive, a topic that is still shunned upon.
I personally believe that you're here on this earth to bring us all together and show that anyone suffering from disability (whether were born from it or caused by accident) can be brought together through understanding and love and support from one another.
There's a reason why your life turned out the way it did, and I believe personally it could be for this reason, as I'm so sorry for the heartbreak and hurt it caused.
It also allowed you to become such a stronger person and for us all to look up to!! I thank God for you, the Universe, everything!! You're such a special soul Ilana.
I'm not usually lost for words, but not sure how exactly to respond to your beautiful words, suffice to say 'thank you. '
I'm happy to leave this with you.
Yes, you are a very special soul, which is why I try hard to be supportive, because I know what it's like to have parents who would rather not know about what their children have to deal with.
My parents should have known there was something seriously wrong with me, mentally and done everything they could to get me the help I needed. Things could have been so very much different for both of us, had we known and not been treated like our issues didn't really exist on top of never really talking about them.
They like to say that 'ignorance is bliss,' and my parents were about as ignorant as you could get, concerning what they were putting us through. You have to see the movie "The Glass Castle" which is about as close to my childhood as I've seen so far.
Just a guess, but I would imagine that you have been just as angry as I have been, that we were robbed of what could have been at least a fairly normal life, just like everyone else has.
I try not to dwell in the morbid reflection, but kind of hard to ignore it when you're at a later age in life and dealing with some issues that most people address as teenagers and others most people can't even begin to comprehend.
Right now is a prime example, when there is something I'm trying to say, but can't seem to find the right words to actually say it. We weren't exactly encouraged to express ourselves as kids, not that it would have really mattered anyway, but it would have been nice to know somebody was listening and actually give a damn about us!
It just would have been fantastic to know that it was okay for me to take care of myself at 19, versus trying to figure it out at 49 years old after having suffered for most of my life, because I felt like it wasn't.
Awww thanks Randy. I appreciate you saying so and of your support with responding on the site. It not only helps me to continue to run the site, but allows us to see that we're not alone with our issues that the connections are very much there.
Yes, when you and I were born, we were very much 'seen and not heard children.' We were seen, but expected to be quiet. Now of course that isn't the case. I digress, but sure you get the point.
You have a point. That even with the most troubling of parenting, dealing with mental and physical issues is a real deal. There is no excuse for any parent to ignore what their children deal with, however bad the parenting.
Of course now all those years later, it is left up to us to try to at least pick up the pieces so that we have normality, or as near to normal as we can make it.
This is where the support comes in from other places and which is why the Diary works, not only for me but for you and others too. Through my own thoughts, feelings and experiences, the Diary is a place where we get to talk about our experiences and how we feel.
Your support of me through your responses is support for you too and what you deal with. It really is the whole package.
Protect and nurture are key attributes to parenting but you got neither and there can be excuse for that. Worse still you were on the receiving end of their ignorance and selfishness.
That's the negative stuff out of the way. The positive stuff is you and how you have changed all of that for yourself and others selflessly. Thank you for being all that you are. 🙂
Thank you, you're welcome. It would be easy for me to become embroiled in my own personal battle of how my life turned out, but I have chosen instead to see only the positive side of life and that shows in my blog.
Although it's difficult to understand how and why things work out the way they do, I learned a different way to be, just by quietly observing my life. Observing my life has carried me through and stayed with me.
I couldn't do what I do with my blogs, without having observed my life enough to understand my life and why my life turned out in the way it did.
I look to understand because with understanding comes my ability to move on without being critical or judgmental on what's been done. That doesn't change my circumstances of course, it also doesn't change what's been done to me, but it does allow me to live, move on and get on with my life.
I'm angry and horrified at what happened to you Ilana, it was awful. But you were always too busy to fail, despite every question being unanswerable. And you're still looking for relief, understandably.
But your readers are committed to stuffing you with love, for as long as it takes to heal, literally.
I am eternally grateful for that love and happy to soak it up by the bucket full. I'm thriving on it and I think it shows in my writing. Thank you.