A shared story

I will be continuing my research for alternative therapies, but felt I needed to write this blog today.

Having spoken to a friend yesterday about our childhood experiences and my living with a physical problem, my friend couldn’t quite believe that it had taken 46 year for me to find out that I had cerebral palsy and thought it quite bazaar that I wouldn’t have known. I woke up at 4 am thinking about it.

When I was around 2 years old, I went to see a Pediatric Specialist who specialised in helping children with cerebral palsy and I now have a letter in my possession that clearly states that he was treating me for Spastic Monoplegia. The diagnosis has changed since then, because I have two limbs affected. It’s not plausible or possible that my parents took me to see someone because I had problems and yet they didn’t know what my diagnosis was.

I believe they knew what my diagnosis was. They wanted me to fit in with my siblings and felt that I wouldn’t if I had have known. It would have helped all of us to know. My father has intimated that. For me, it would have helped me understand why I couldn’t do things, why I struggled in school, why I struggled with walking and many other difficulties.

Growing up, I should have had the support, instead of my pleas being ignored. It’s scary when I look back to think this has been my life.

10 Jun, 2010

12 thoughts on “A shared story

  1. I wasn’t diagnosed with Ataxic CP until I was 36, but always knew something was ‘not right’. It wasn’t until I was around 12 years old I played soccer and my coach noticed that my balance and co-ordination were ‘off’, so my parents took me to see a specialist who worked with my sister (she is more severe).

    “It cannot be plausible that my parents went to see someone because I had problems and yet they didn’t know what they were dealing with. I think not. What I think is that in all probability they knew what it was I had. I just think they thought that it would better if I didn’t know the diagnosis, because to know would have given me a different set of problems. They also wanted me to fit in with my siblings and felt that somehow I wouldn’t if I had known.

    For me it would have helped me understand why I couldn’t do things, why I struggled in school, why I struggled with walking etc. With the right support though, I am sure my family would have dealt with me differently.”

  2. Bill you talked about your coach recognising your balance and co-ordination problems whilst playing soccer at the age of 12 and going to see the same specialist your sister was already seeing. How come you were only diagnosed with CP at the age of 36?

  3. I tend to agree with you Ilana – I think your parents had to have known. You were not their only child. Parents compare each child to the next and to other people’s children. I believe parents in general do the best job they can with what they have and though it may have been a mistake, I think they thought they were protecting you. They may have thought they could encourage or force you to do more if they never admitted there was a valid reason you couldn’t. I’m sorry you had to grow up through that but it has made you who you are today and you are a strong courageous woman. Keep up the good work.

  4. I do agree with your sentiments Lisa, although the only part of what you say that doesn’t tally with what I know is that I was never encouraged one way or another, which made what I dealt with a lot harder.

    You are right though, they did do what will have been their best with what they were both given, but that was not enough to help me through what I needed help with.

    I don’t blame them. I am okay with it, that is probably why I went on to do what I have done, particularly with the site. I may have gone on to do other things had I been encouraged, but I am not sure this would have come into the equation.

  5. I’ve known that I had cp all my life. I was trying to think if how different things would be if I didn’t know about it. I’m not entirely sure that they would be because growing up I tried to push myself to do what everyone else did. My parents initially tried taking the opposite approach of your parents and were overly cautious about everything. They tried limiting my activities to an extreme, where I couldn’t try things even if I wanted to because they were afraid. Perhaps a medium with a combination of the two would have been best.

    1. You may be right LeAnna in your thinking but you and I will never know. All we can do now is sit and ponder the question or speak to our parents about what we think. I have spoken to my parents about one or two things in the past and have met with resistance. It’s just not worth it sometimes.

  6. I was lucky my CP was caught just before I was three. Because it was caught early operations could be performed to correct my legs and walking as much as possible. Once I stopped growing nothing further could be done. I had my last operation when I was 14. I consider myself lucky at one time the doctors did not think i would be able to walk at all. There is always a bright side to every situation. Believe me I have seen a lot worse CP cases than mine.

  7. Randy I am so pleased for you that you had the right help when you were little. Although my CP isn’t bad I didn’t have that kind of support network. Glad you did.

  8. No Ilana, you are not alone. When I was diagnosed with bipolar disorder my mother didn’t believe it. Not until she spoke to her nurse who has a son with it, did she know about it and understand it. I must have had it a while and just never exhibited symptoms until my late 30’s when I had my “break”. I thought it was some sort of psychic ability which tends to run in my family, and all it was, was that I was having a manic episode. Sad but true…I am sorry about your parents trying to shield you from your CP, I can see why they did it (but also I see why they shouldn’t have and see why you thought you were different and were struggling with things). So which is worse, I think they should have told you – you are a tough lady and I think you could have dealt with it. You are dealing with it now and are blogging about it and this site is awesome. So who has a disability, no one that I can see here – lol…Love, Maria J.

    1. Maria I smiled because of your response. Thank you for your encouraging words for both me and my site.

      Without friends like you my site would not be the success it is. I need your support right now I have so many new emotions to deal with.

      Thank you from the bottom of my heart. I love you all.

  9. Ilana, Dr’s didn’t have the technology back in our time and I guess that everyone looked at them as a ‘god’ in those days! We all struggle with our own diagnosis and what that really is like in this crazy world.

    I knew I was a cripple as a child, as I could understand what that meant. I only found that I had CP while attending a clinic in my teenage years and only because I overheard the Dr’s talking about my CP… I had to ask my mom to explain what CP was as I had no idea… That was awfully hard for her as she described my birth in detail and the way i was starved of oxygen and that i had brain damage, it made her cry… I don’t like making my mother cry as she has always felt she might have been able to do more….

    I was in my 20’s when I really found that CP had different types and mine was athetoid…. I had heard the name spastic CP used before and thought that I may have been spastic? It wasn’t until I started horse riding that I got to understand what my CP diagnosis really was and that happened in the 90’s, only about 10 years ago…

    I feel for you Ilana, I truly do. If you had known what disability you had you may have understood yourself better and not have had to fumble your way through life… I wish I could help you more than I can… I really do! I believe with this website you will find more about yourself as we all learn together the intricacies of CP and the support from fellow members… best of luck.

    1. Mike with this website I believe I already am.. with support from my friend’s too by reading about their experiences of what they struggle with.

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