A Cerebral Palsy day

Cerebral Palsy is never far from my mind, but then that’s not surprising, because Cerebral Palsy and being born premature are part of my life.

I hate how my life is continually governed by my condition, like not being able to make decisions so that I can plan ahead to go places, particularly on long journeys, parties, family functions, days out and holidays, doing the normal things for fear of putting myself out there and getting ill.

Another hate is being fatigued. Just going for a walk interferes with my ability to function normally. I hate that feeling of getting tired, losing concentration, tripping up and the cycle continues. I’m then left with brain fog. It literally takes a couple of hours for me to fully recover from a half hour walk.

Unfortunately, my frustrations are my family’s frustrations too and that makes it doubly frustrating for me because I know they’re irritated, I am tied to the condition and there’s nothing I can do about it and then I feel bad because I’m letting them down. Because the condition is also mild it also makes what I deal with more difficult, because it’s not like a broken leg where everyone notices and the sympathy’s automatically there.

I often find myself having to fight to find a place that fits in with everyone else, for them to be okay with what I deal with and find an acceptance on that. On a happier note, I was looking at some old photographs of me as a child and although the tell tale signs of my physical disabilities were clearly visible in the photographs, I didn’t seem too perturbed by the symptoms I never knew I had.

My smile in the photographs tell a different story. I believe reflection saved me from the depths of despair and some very low moments of everything I had to deal with, including my physical and neurological difficulties.


1 Sep, 2016

4 thoughts on “A Cerebral Palsy day

  1. Sadly, now I understand why it is that my daughter has been so hesitant to do things, because it must turn out to be so very tiring, just thinking about doing things!

    It just makes me feel very stupid, as a parent that I didn’t catch on to that before, until I saw it in black and white. It’s far too easy to tell somebody they should be doing something when you’re not the one having to do it, with the physical limitations that Cerebral Palsy causes.

    I have no excuse for my behavior, other than being pressured by someone to push her to do things that she thought she should be doing, without considering the difficulties.

    I have my own issues mentally that make it difficult to do certain things, so I should have been able to relate! Unfortunately I am only human and have been shouldering all over myself and everyone else, most of my life. It’s no wonder I have detested myself for so long, because I couldn’t stand the person I had become.

    I almost think it’s so much worse being intelligent and knowing exactly what it was that I was doing wrong, but seemingly unable to stop myself from doing it. I sometimes envy those people who will never know how damaged they are, so it doesn’t bother them.

    It can be so very frustrating when trying to do the simplest tasks, sometimes feel like trying to pull off a Broadway production.

    I’m just trying to figure out how to do the things I can and stop torturing myself for simply being human!

    1. Unless we consciously think about things, we don’t think about what other people may go through or have to deal with. Having Cerebral Palsy has opened my eyes to other people’s difficulties, definitely.

      I’m not sure I’d be too hard on yourself though. You’ve had difficulties to deal with yourself. You didn’t miss the signs about your daughter because you were living the high life. As you’ve intimated Randy, you had your own things to deal with and that took you away from your daughter.

      I think it’s important for those of us who can support and help those who need help, regardless of the less pressing issues of what we may have to deal with.

      In those circumstances there is no excuse; but as you say Randy having your own issues mentally puts a different slant on your life in so many different ways; not your fault and that will always affect your relationships.

      As long as we’re up front with our children and don’t shy away with a list of excuses, other than the real reason, our children will understand.

  2. That shade of a smile across your face when you were a child speaks of your innocence, but even then you didn’t depend on others to give you strength. You’ve been looking inside yourself forward.

    But what is normal? You blink twice and squint and you’ll see that you’re made of nothing more than you, and that’s beautiful.

    1. Thanks Tim. Yes, what is normal? Normal is different to everyone, but I’m normal in my own way, just a different normal.

      You’ve certainly opened my eyes. What you say in your response in your first paragraph about me, ties in with something my father once said about me.

      What he said didn’t register until you said it just now, about looking inside myself forward. I don’t rely on anyone but myself. I was always emotionally independent of my growing up family.

      As I continue to make headway and sense of my life to this point, that is exactly what I continue to do. Looking inside myself forward allows me to reflect, debate, agree, disagree and find an acceptance on things, particularly the things I can’t change.

      I know I certainly couldn’t write in the way I do on a wide variety of topics and run The CP Diary; without it.

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