Living in the dark

1 May 2017

I liken not knowing that I had Cerebral Palsy for 46 years, to living in a darkened room during that time, only seeing the world beyond those four walls, when I finally found out that I had Cerebral Palsy.

That was an incredibly difficult period in my life. I’m not sure I’ll ever come to terms with that fact and although I make light of it and have turned my life around through my site and my writing, I am choosing to put a positive slant on this. Not to will make me feel even more negative about my experiences.

It’s unbelievable how this was my life. I still find it hard to say, let alone come to terms with that this was my life. I’m not sure I will ever come to terms my reality.It’s not something you think you’ll ever have to work through.

But for me this is exactly what I’ve had to do and where my journey piecing a diagnosis and my symptoms together began. My time up to this point so late in my life, was literally spent living in the dark.

4 Responses to “Living in the dark”

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  1. Randy 01. May, 2017 at 4:29 pm #

    Yes, that’s exactly what it’s like when you live most of your life without anybody telling you what your problems really are.

    You end up with tunnel vision because you are only allowed to see what people want you to see, when they don’t allow you to see any different, if that makes any sense. My parents always tried forcing us to see things the way they wanted us to see them, when we knew something wasn’t right.

    You can’t deny things like, seeing a woman who’s been badly beaten stop breathing on your living room floor. Thankfully she started breathing again on her own, but that is actually kind of traumatic and a typical example of some of the things we were exposed to.

    This is why I have been trying very hard to make sure that you know how much you and your blog are appreciated. There aren’t many people that I can relate to. I felt like I was living in the dark for the longest time, seeing as I didn’t want to accept that I had any of the same mental health issues as my parents.

    The most this accomplished was to make my life a living hell by beating myself up, because I was human. I made a lot of mistakes because I didn’t know any better or different, so I was trapped in that loop of making the same mistakes over and over again expecting different results.

    Einstein called that the definition of insanity, which is very accurate. Over the past few years with chatting with you and reading your blog, it has helped me tremendously to accept my flaws and understand better that a lot of things weren’t my fault, like my parents being so miserable.

    My daughter is a prime example of living in the dark, seeing as she hasn’t been pushed to do a lot of things that she could do even with her Cerebral Palsy. It would have been a lot more helpful for her mother to have taught her a lot of the life skills that she needed to learn, but she didn’t.

    I made the mistake of assuming her mother would know better, but she was too busy focusing on her own life and what she wanted to do, which I find so very sad. Now that she is facing cancer once again, my daughter is left scared and pretty much alone since she doesn’t have the support system that she needs, simply because her mother never got around to it.

    It is just truly a shame, since my daughter lives in such a beautiful state which she may be forced to leave, because her mother was just too damn lazy to get around to helping her get a life.

    Personally I just find it so very shameful when parents choose to keep their kids in the dark about life, when there are a lot of positives besides the negatives. I know your parents never fully explained your issues to you, which would have helped you to better cope with life.

    I was ‘broken’ by my parents in their never ending battle to win my loyalty, in ways that most people can’t imagine. People tended to think I was just so horrible in the way I spoke about my parents, but they didn’t grow up in the nightmare that I did, thinking of suicide from when I was probably 3 years old.

    Part of me knows I should forgive them but another part wants them to suffer in the same way I did, which they never will because they didn’t seem to have the capacity to feel things the same way we did.

    I can only work on making the near future as best as I can, seeing as I have a daughter who will probably be needing my help very soon!

    • Ilana 01. May, 2017 at 4:58 pm #

      Thanks Randy. Yes, no one will ever know what someone goes through until they go through it themselves, or has something that they have to deal with that’s similar.

      Even though our backgrounds are different with different issues to deal with, emotionally our struggles are similar. All our emotions although tied to different circumstances, usually play out similarly. I think being aware of our circumstances helps us come to terms with ‘the way we are’ because fundamentally we get to see a bigger picture being presented.

      It sounds as though you we very well aware of what your mum went through Randy and from the way you describe your experiences, it sounds very scary, considering you were very small. I only have admiration for you.

      Thank you for your compliment of my blog. I am pleased that my blogs are making a difference for you. When I look at the bigger picture for both of us, I know that our experiences have brought us to this place together. Without both of our experiences we would have never met.

      I also believe our experiences do make us stronger. They make us more aware of how not to do things and shape our lives for the better, as long as we’re willing to put in the work. Neither of us can change our past, but we can work on making our lives better in the present, by learning from our experiences.

      You have a daughter who needs you in her life and although her mum has been less instrumental in helping her, you are aware of how that needs to change. When her mum is no longer around, you’ll have more of a connection and perhaps that is what needs to happen for your daughter to have a life.

      When we lose sight of how life should go, circumstances do eventually change.

  2. Tim 01. May, 2017 at 9:31 pm #

    While your experience has unnerved many of us, it has taught us to emerge from darkness with individual worth, no matter how harmful our past has been.

    Which makes your message too rich to be ignored; it’s like achieving a new kind of literacy.

    • Ilana 02. May, 2017 at 7:17 am #

      Awww thanks Tim. I believe even the most damaged of souls can emerge from the depths of despair, through understanding their lives and questioning the very thing that brought them to that place.

      Where we find ourselves and what we deal with, when we go back to question why we are where we are, we find a different story of the one our unconscious mind has been telling us. For example, I believed I was to blame for not achieving in school, that I could have and should have done better, which took the onus off everyone else, including my parents and teachers.

      The reality of course is that it didn’t have anything to do with me and my lack of abilities due to neurological problems, but through others’ inability to see and understand I needed help to function in school.

      The moral to the story is that when we come to see and understand the reasons behind why we think the way we do, we see a different way to think and that takes the onus off us.

      I lived with that guilt for many years, until I realised it wasn’t my guilt to carry.

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