This post is written by my “dark side”; the part of my mind, that is no longer allowed control and direction, but that I thought I´d let out for this post, in hopes that others would understand that they are not alone. Perhaps also to show parents and others, some of the thoughts that may float around inside the mind of their child, and instead of being afraid of what they might be thinking, they would be better able to help, because they understand.

How do we define what a person is worth to society? How do we measure it? What makes a person feel like they are contributing to society? Are these the same things?

Growing up with CP often left me feeling broken, worthless, and like I was a burden to my parents, to my friends, and especially to society. If I were to tell someone that, like my parents, other adults around me, like teachers or even psychologists, they would of course tell me: “Nonsense! You are not a burden, you can achieve what you want”. And whilst their support was well intentioned and appreciated, my internal dialogue and reasoning told me otherwise. I was fortunately(?) able to observe the world around me, and how they reacted to me, to my differences and to my handicap.

And even though I tried to not view myself as a burden or a problem, it was hard not to look at all the adaptations that society had to make, and that my parents had to make, for my sake, and not feel like I was extra work. In kindergarten, I needed special care and attention for one employee, every day. Her job, was to look after me, whilst all the other kids were split among a few other adults, was I that much work?

When playing soccer with my friends, I could tell that they really didn’t want me on their team. And I understood why. I was weighing them down, I was not like the others, and couldn’t contribute as they could, so bringing me in would essentially mean accepting being a man down to the other team. My friends made sure to pick me though, because they didn’t want me to feel left out, or like I was unwanted, but I knew, they knew, we all knew.

At school I had to have an aide, especially before computers became mainstream. I needed someone to write for me, because we had to write everything by hand essentially. Now, with the fine motor skills of someone with CP this is a true nightmare at times. First and foremost, my handwriting would suck, and my hand would hurt. And it wasn’t for lack of trying. I spent hours, sometimes entire afternoons and evenings at home every single day with my mom practicing handwriting, to exceeding amounts of frustration on my end, and feeling of helplessness, despair and sadness on her end. Of course she wouldn’t tell me that. But I could tell by how she reacted, when I had my inevitable anger tantrum and threw the exercise book against the wall, screaming and yelling that I didn’t want to do it anymore. And that I hated school, and it wasn’t fair that I had to spend all this time, whilst my friends got to play and have free time.

If it hadn’t been for the computer, I may have never been able to discover my love and passion for the written word, and would have never discovered that my biggest passion in life was to write. I would have kept on hating it, merely because society had forced me to approach the task in such a way that doomed me to fail.

I remember vehemently opposing the idea of getting pulled out of math class and given my own teacher. That validated the part of my mind that was constantly telling me I wasn´t good enough, that I was stupid, and a failure. I relented however, after it became painfully obviously that I was going to fail high school if I didn´t accept the help, and that would seem fairly silly as math was really the only subject I really struggled in. I had gotten a “free pass” from taking PE so that was a non-issue already.

Once I gave in to the pressure and said yes to the specialized math tutoring, my grades improved, and I passed fairly comfortably. It was the correct logical decision to make, but it had an effect on me. I had been fighting for so long to be as normal as possible, to try to prove the part of me that was telling me I wasn´t good enough, that I in fact was. This and other things fueled a fire that would later contribute to troubles with depression in my early twenties.

Now a days, I am happy with the CP, and myself but I have not for a second deluded myself into thinking my demons are gone forever. They are there, waiting for a weak moment to attack, and tell me once again how worthless or stupid I am. That battle will mostly likely be an ongoing one, for the rest of my life, and I am determined to not let the demons win!

I think its good that they are let out every now and then though, like in this post, if only to remind myself that I still have to be aware, that I still have to be careful about my thoughts, and hopefully they can also help others in seeing that they are not alone. I used to think I was the only one with these troubles, and that was a very, very lonely place to be in. You are not alone, and they don´t have to win!

Please share some of your experiences if you are comfortable with the community. How did you overcome your dark side, and what was it like? And as always, if you liked the article, please consider sharing it on your favorite social media, as that really helps us out! 🙂[/fusion_text]

8 Responses

  1. Thank you for honesty and sharing your thoughts. It means a lot to me. My 5yo has cp. He is still learning how he is different and I am doing my best to help him be aware and confident about it simultaneously. I truly admire how hard he tries. And I admire learning from u! You have a tremendous skill. All of us mom’s are lucky to learn from you. ♡

    1. Hello and thank you for commenting! I am glad you appreciated this. The happy and inspiring things are shared around more easily and happily talked about. But U think its important to talk about the difficult things as well. I really wish you and and Ashron all the best! And hope that I can continue to help with my writing!

  2. I have read a number of your posts and just have to say thank you! Thank you for being so open, thank you for being honest with the good and bad that comes with CP, and thank you for sharing because as a mother of a 5 year old with CP, I struggle so much at times with what the world will be like for him as he grows and how I can best help him. I look forward to reading your next post!

  3. Soooo much of what you writes resonates with me as I watch my son (15) grow and struggle and figure out who he is, CP and all. Thank you thank you thank you!

  4. Thank you for sharing.
    I am 44 and have residual CP.
    I discover new things all the time that CP is responsible for, but I am glad to hear that all the thoughts and struggles with my dark side are at least partly because of CP too.

  5. Ha, I know these issues!! I was lucky – my first school got their first ever computer, a BBC Micro because I was attending. I often ended up helping the teachers. Maths is STILL challenging…it seems at least some people with CP also get Dyscalculia or similar mental number blocks. I can do everyday stuff, but more complex stuff? No, my brain can’t process that. I can do Binary conversions etc, and have spent the last 30 years on computers.

    I’m lucky enough to work in a school, and a lot of the CP children there are allowed to come and chat with me if they wish – finding out we share more “effects” than I’d hitherto realised has made a lot of difference to my’s such a varied condition!

    I gave up computers for manual work last I’m a senior science tech, handing the acids, making solutions and glassware, and generally doing all manner of things that I would have said 2 years ago I couldn’t/shouldn’t do. I’m no stranger to the dark side, and the internal doom voice of depression…but, my kids believe in me, and for their sake as well as my own, I’m learning to tame and quiet it, and actively push my limits and the CP imposed ones to new levels.

    Don’t listen to that voice. It’ll try at every turn to ruin your confidence. Say “to hell with it, I’m going to try my best, it’s all I can do, and if it goes wrong..well, so be it.” Works for me. You are FAR more than a condition. We may not do things as others do, but we learn to think outside the box, which is to my way of thinking a better way.

  6. I have cp myself. I suffer from depression due to lack of work employees say my interviews went well yet not get the job due to “lack of experience” when I know I can do the job just as well if not better. Personally I think I am not getting the job bcoz my physical ability is limited and well…. obvious! Sometimes I feel the world is a better place without me in it.
    Thank you for your blog it’s such an inspiration. It makes me feel optimistic. 🙂

  7. I am the same way, I have CP, I try and try to pretend I’m normal but deep down I know I’m not. My demons wreck havoc on my life and I live in constant misery. I feel like I’m a burden to everyone and still do to this day. I always feel worthless and hide behind my fake smile that everyone can’t see my true pain

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