About Me
My Story
What is it like living with cerebral palsy? I cannot truly answer that question as for 46 years of my life I didn’t know it was, because at the end of March 2009 I was finally diagnosed.
How did I feel as the child then, the adult now? Those times were enormously difficult for me. Some days I felt isolated, angry, cheated, misunderstood and frustrated. Other days I felt insular and alone. It wasn’t something my family talked about. “There was never anything wrong with me.” It was never brought up unless I talked about it then it was quickly dismissed like hot cakes as if the condition didn’t exist. But it did!
I do not have a recollection of all the stages of my life living with cerebral palsy but I will try and piece some of my early thoughts and recollections together. I know that I first had problems at the age of two as I have a letter in my possession for a referral to a specialist, as there were many concerns about my balance. I simply couldn’t. Where my twin was beginning to crawl I would fall, try to get up then fall again. It was never something I could control and how I wished I could. My mum noticed more or less straight away when I tried to crawl that I was finding it difficult to balance. My dad on the other hand was not unduly concerned and said it would be alright although today my dad recollects that it was the other way round.
I knew I was different then. I knew there were things I was struggling with. I felt different for all the wrong reasons and didn’t always feel comfortable in my own skin. Although I didn’t despise myself I didn’t always enjoy being who I was, although I could sometimes separate the two issues. I knew there was Ilana with a condition and there was Ilana the person. I remember telling myself that I was glad to be me. I don’t know why I said it and to this day I have no understanding as to why I did, I just know I wasn’t unhappy being me. I was just unhappy with being physically restricted. I also knew that deep down I wasn’t bad in any way. I was just an angry child with problems that weren’t going away.
Of course there were times when I was angry although deep down my parents knew I was kind, caring and considerate and those kind times did peep through occasionally. In order to become accepted I seemed to conform more than any of my other siblings.
My mother tried to deal with me but couldn’t cope. I was always being singled out to do exercises but it was always at a time when my brother and sisters would be doing something they wanted to do. It was never when they were doing homework. It wasn’t something I was ever comfortable with and nine times out of ten I would fight the system and become angry at the injustice of it all. My mother would tell me I couldn’t have a beautiful face without a beautiful leg. I did not understand the concept because nothing was ever explained to me.
Questions were never asked about my condition and how the condition presented itself and why. My parents just accepted that I had a leg and an arm that just weren’t working properly. There was little bulk from the hip to the ankle. My foot was a different shape to the other foot. I used to drag my leg. I didn’t seem to be able to pick my leg up, so I walked toe heel all the time. When we used to go for walks my father would walk behind me and tell me to stop dragging my leg and pick my foot up, none of which I could do. I think as a consequence, I struggled with my handwriting and walking in and out of a room.
My handwriting was another consequence. I couldn’t write in front of anyone. For example writing a cheque at a till was difficult or writing something down for myself seemed to be a problem. My outlines were different and I was not sure for a long time which outline was my handwriting. If I subconsciously think about it now I get it wrong. My Neurologist has explained that the part of the brain that controls my motor skills functions is also affected, so that will explain the additional problems I have.
Those experiences lasted a good part of my early life. For many years I couldn’t walk into a room without seeing people watching my every move. I couldn’t walk out of the same room without fear of people watching me. I used to turn and walk quickly so as to avoid eye contact.
My parents found asking questions difficult, questions that may have perhaps helped me; instead they would go with what was said so I became completely cut off from the outside world. They seemed very accepting of what the specialists had to say and never delved deeper to find out more. They always believed the specialists opinions, as they were the specialists. They were happy. There didn’t seem to be much to unravel as a consequence. They wanted me to be the same as my siblings. My problems therefore lay dormant for many years with the sad reality being that I didn’t cope at all on an emotional level.
Apart from my exercises which I was supposed to do daily there was no support. My parents couldn’t give me the support and I don’t blame them. They dealt with me the only way they knew how. In the 60’s disability was brushed under the carpet. I would have been considered a freak, and would have been outcast from society. I got lucky I was ignored!
For fifteen years of my life I went to the hospital once a year, the athletic institute for exercises once a year and physiotherapy once a week. All those visits seemed to eat into my childhood. I lived a somewhat insular life hiding a lot of my issues behind the problems I faced on a daily basis.
Not knowing what my condition was gave me a quiet confidence that tomorrow was another day and that things would be different, I would get better, my foot and leg would somehow magically right themselves. I always felt confident of that because I had no idea what it was I was dealing with, I was always optimistic. Knowing what the condition is now I know that will never happen. I have to learn how to deal with it properly in the knowledge that it is not something I can ever sort, in my head yes, physically no. I need to exercise daily not being able to do that will put me in a totally different place which I will have to deal with when the time comes.
Thanks to my Neurologist I have brought closure on what is written here. He has confirmed all of the points I have raised. I am in a better place now and have a lot to be thankful for. I am not unhappy and am more at peace with myself now.
I finally have time to spend some time on here. Thanks for directing me to your site.
Your story of isolation and feeling “lucky” to be ignored because you felt so different remind me a lot of how I have often felt.
I’m grateful to have met you on DS and looking forward to getting to know you better. I’m going to explore more of your site now. Thanks again.
Me too. It will be nice to get to know you more. Thanks for reading my story, it helps to know I am not alone in the way I have felt for so many years.
I’m considering marriage with a man with cerebral palsy and I am “normal”. Any suggestions or words of wisdom?
Jeanette that’s wonderful.
You don’t say what kind of CP your husband to be has, so I don’t know how bad he is. My advice would be Just to accept that there will be things that he cannot do and may struggle with; try not to judge him and above all be patient.
Please feel free to post again and it if it would be at all helpful we can chat by private e-mail.
Great job on your blog! Wonderful writing about an important subject – Living with cerebral palsy.
I can fully relate to all the thoughts and feelings that you write about! I too, have cerebral palsy. I couldn’t walk until the age of 4 and endured grueling physical therapy in my younger years.
I have written about my experiences in my memoir, Someone Like Me – An Unlikely Story of Challenge and Triumph Over Cerebral Palsy. I kept my CP a secret to join the US Navy and stayed in the Navy for 20 years without telling anyone about my condition.
I look forward to reading more of this blog. It’s so important to get stories out there to show what is possible.
Thanks so much!
John W Quinn
You’re welcome. Thank you for making contact and for telling me that you have CP. I cannot believe that in 20 years no-one realised that you had cerebral palsy.
I hope to get to know you more in the future. We could be a great support for each other.
This is a great site you have created to educate people on your condition. Don’t give up and I know you will keep fighting. You have my support in whatever you need.
Wow! Thank you for posting Kathy.
You inspire me Ilana. Thanks for all the advice on Zeb.
You’re welcome Lisa.
Very well written and thought provoking. I can relate in so many ways. We will learn to cope better daily and life will seem like life again. Wonderful and beautiful!
Thank you for coming on the site and responding to ‘my story,’ and for your wonderful comments.
I am sure that although my story is unique to me, we all have stories that seem similar even though they’re different. I believe the emotional ties to what we deal with, make it that way.
Nice photo.
Thank you.
Great job on your blog Ilana.
I appreciate reading all your wonderful insight to positive living and thinking.
Thanks Jan. Welcome to the site.
It was great reading your story. What an interesting and frustrating time you had when there were no answers.
I would love for you to stop by my blog and see if you would be interested in participating in a CP connection.
http://elliestumbo.blogspot.com/2011/11/cerebral-palsy-connection.html
Welcome to the site and thank you for reading my ‘About me’ Story.
It would be lovely for us to have support from one another.
This is perfect! I too have mild Cerebral Palsy and there never seems to be anyone to talk to about it. It’s nice to know that other people with CP feel the same way.
I can relate to your story. I went though hours of physical therapy and brace fitting as a child and all I ever wanted to do was “fit in” physically with everyone else. Now I am 34 years old and married with a young daughter.
I still struggle to “fit in” with my family physically (riding bikes, hiking, etc), it’s tough, but I am working on it and my husband is very helpful.
Thank you for creating this blog so we all can share our thoughts and ideas on CP. Kerri
You’re welcome. It’s nice to have you on site Kerri and to hear a little about what you deal with.
I think when we deal with something like CP it’s very easy to feel that we don’t fit in; but part of the problem I believe stems from others not learning or knowing how to fit in around what we deal with.
I don’t think it comes from us at all. We’re just being us. It’s others who struggle to know how to be okay with us.
I have also experienced being stared upon from people whenever we go someplace. I don’t know if they are just pity of my situation or degrading me.
I can relate so much to your story. It is really hard to be imprisoned in your own body.
I remember when I was a child I wanted to go to the mall, but just stayed at home because I was afraid that people would stare at me as if I was an alien.
Then at my school I was always being singled out in every group activity, always being left also at our room during PE class.
It is so nice to read your story, there are so many resemblances to mine.
PS: Merry Christmas to you and your family.
Hi Kimmy… it’s great hearing your own recollections of what you had to deal with in your childhood and to know that we’re really not alone in what we think and feel about what we deal with.
I know we cannot change other people’s thoughts about how they deal and treat us, but I know my experiences have made me a lot stronger emotionally. Given time Kimmy, hopefully you will use your own experiences to change how you perceive your life.
We cannot change the past, we can only change how we perceive ourselves. I believe that fundamentally it needs to happen if we are to find peace.