About Me

My Story

What is it like living with cerebral palsy? I cannot answer that question, as for 46 years of my life I never knew that’s what I had. It was in March 2009 that I was finally diagnosed with cerebral palsy. I was born the second of premature twins.

How did I feel as the child then, the adult now? Those times were enormously difficult for me. I was an angry child living in the depths of despair. Some days I felt isolated, angry and misunderstood. Other days I felt frustrated and alone.

I was out of touch with reality because I had no idea what I was dealing with. I was also out of touch with my own thoughts, primarily because I had no understanding around my physical, mental and emotional issues. We didn’t talk about my disability: my issues were never brought up unless I talked about them, then they were quickly dismissed as if the condition didn’t exist. But it did.

I first had a diagnosis of cerebral palsy at the age of two, as I now have a letter in my possession for a referral to a specialist, as there were concerns about my balance.

When my twin was beginning to crawl, I would fall, try to get up, then fall again. It was never something I could control, but how I wished I could. My mum noticed more or less straight away. My dad, on the other hand, was not unduly concerned, and said everything would be fine.

Growing up, I felt different for all the wrong reasons. I knew there were things I struggled with. Although I didn’t not like myself, I didn’t like being so angry, although every now and again my kind side would appear, and I would somehow be able to separate the two issues. There was the angry Ilana with the condition, and there was the real me.

A few years later I remember telling myself that I was glad to be me. To this day I don’t know why I said it; I just knew I wasn’t always unhappy being me. I also knew that deep down I wasn’t a bad child. I was an angry child with a disability I knew nothing about and emotional issues that weren’t being addressed or going away.

Although I spent a lot of my formative years being angry, it would go on to take 49 years for my father to say that I was the most kind, caring and considerate of his children. In order to earn his acceptance on a disability I didn’t know I had, I found myself conforming more than any of my other siblings.

My mum tried to deal with me but couldn’t cope. She was always singling me out to do exercises, at a time when my siblings were doing something they wanted to do. I became irritated with this, and nine times out of ten I would fight the system and become angry at the injustice of it all.

My mum would tell me I couldn’t have a pretty face without a pretty leg. I never made the correlation because I didn’t know what was wrong with me and because nothing was ever explained.

Questions were never asked about my condition and how the condition presented, mentally, emotionally or physically. With my notes in front of me I know the original diagnosis of Spastic Monoparesis at the age of two wasn’t correct, because I have two limbs affected not one, and my leg isn’t spastic. This diagnosis was unknown to me at the time, and for most of my life.

Over the years I have had to work everything out for myself, to bring my symptoms and the right diagnosis together. I have little muscle tone from the hip to the ankle on my left side. I have a ‘foot drop’ and my leg on my left side is ¾” shorter than my right side. Because of my ‘foot drop’ I also have a bunion. This explains why as a child I would drag my leg and walk toe-heel all the time.

Going out for walks my father would walk behind me, or so it seemed, telling me to stop dragging my leg and pick my foot up; he will have known that was impossible for me to do. As time went by and as a consequence of him picking me up on those things, I struggled with walking in and out of rooms, for fear of people watching me.

I hated looking at myself in the mirror. When I was standing straight, I was lopsided because of a leg length difference of ¾”, and I couldn’t bear to look. When I spoke to mum about my being lopsided, she would often say ‘I couldn’t have a pretty face without a pretty leg.’ With hindsight without her realising, she confirmed she was also aware of my diagnosis.

When I wore skirts, the lack of muscle tone in my left leg was visible so people stared. I limped and tripped when I got tired. I hated that. I also hated that I walked toe-heel that I dragged my leg and I couldn’t pick my foot up. I hated even more that I was being picked on for something I couldn’t change and that was becoming an issue.

I hated that I struggled to fit into shoes and that when I did manage to get shoes to fit, they wore differently. I was also upset at having to wear a heel lift on the outside of my shoe to compensate for my leg length difference, and that eventually I had to have shoes made for me that made my foot look even more deformed.

Struggling with my handwriting, I hated not being able to write spontaneously in front of anyone. For example, writing a cheque at a till was difficult, writing anything, in fact. I continue to struggle to write with uniform outlines. Since my cerebral palsy diagnosis, my neurologist has explained that the part of the brain that controls my motor skills functions is also affected, so that now explains the problem with my handwriting.

As a consequence of my parents wanting me to be the same as my siblings, my issues lay dormant for many years, as I continued to struggle. I lacked mental and emotional support. It didn’t help that I was born in the 1960s. In the 1960s, disability was brushed under the carpet.

I was told by the specialist that I was perhaps lucky, because back in the day, because of my disability, I would have been considered a spastic and would have had to attend a special needs school. He was clear about that. He also said I would have had to have worn calipers, and that having my issues ignored was probably a better option.

For fifteen years of my life I went to physiotherapy once a week, and the Athletic Institute for exercises once a year in May and the hospital once a year in February. All those visits seemed to eat into my childhood. As a result of my struggles, I lived a somewhat insular life hiding a lot of my issues behind the façade.

Not knowing what my condition was gave me a quiet confidence that tomorrow was another day and that things would change, and I would get better. To this day I believe it was because I had no idea of what I was dealing with; it was the not knowing that gave me the hope.

Ilana x

94 thoughts on “About Me

  1. 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 reminds 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.

    1. Thanks Scott and welcome to the site. It helps to know when others read ‘my story’ that I am not alone in the way I have felt for many years.

  2. I’m considering marriage with a man with cerebral palsy and I am ‘normal.’ Any suggestions or words of wisdom?

    1. Jeanette that’s wonderful. You don’t say what kind of cerebral palsy your husband to be has.

      My advice would be just to accept that there will be things that he cannot do and may struggle with, try not to judge and be patient.

      Please feel free to post again. If it would be helpful we can chat by private e-mail.

  3. 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 gruelling physical therapy in my younger years.

    I kept my cerebral palsy 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. Thank you.

    1. You’re welcome. Thanks for making contact and for telling us of your own experiences.

      It’s very hard to believe that in 20 years, no one in the Navy cottoned on that you had cerebral palsy, but that was very much to your advantage.

      Absolutely well done on your achievement.

  4. 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.

  5. Very well written and thought provoking. I can relate in so many ways. We will learn to cope better and life will seem like life again.

    Wonderful and beautiful.

    1. Hi Jason, and welcome to the site and for your lovely comments. I am sure that although my story is unique, we all have stories that seem similar, even though they’re different.

      I believe it’s the emotional ties that we deal with that bring us together.

  6. Great job on your blog Ilana.

    I appreciate reading all your wonderful insight to positive living and thinking.

      1. Thank you for talking with me through emails and Facebook and now this.

        It’s like a safe haven to come to and get the support we all need, because so many others don’t understand.

        Hope to talk to you soon.

        1. Hi Bonnie and welcome to the site. You’re so welcome. It helps when through our experiences, we can support one another.

          Without the support it makes what we deal with much harder.

  7. 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 cerebral palsy connection.

    1. Welcome to the site and thank you for reading my story. That would be lovely, thank you.

      It would be great to be able to support one another.

  8. 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 cerebral palsy 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 and still I 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 cerebral palsy.

    1. Thank you. It’s nice to have you on the site and to hear a little bit about what you deal with.

      Yes, when we deal with something like cerebral palsy, it’s very easy to feel that we don’t fit in, but part of the problem stems from others not learning about what we deal with, or them wanting to fit in around what we deal with.

      I don’t think it comes from us. We’re just being us. It’s others who struggle to know or want to deal with us.

  9. 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.

    1. 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 can’t change other people’s thoughts about how they deal with 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 needs to happen if we are to find peace.

  10. You’re not alone, far from it. I’m a little older than you and I’ve had similar experiences. I can especially relate to your situation with your mother. Mine was a model and was always disappointed in me.

    Since my CP makes it impossible for me to hide, I decided years ago to start doing my best to look good and as a result found a definite improvement in how others interacted with me.

    1. Thank you for responding to my ‘About Me’ Blog. I agree that it’s important for us all to take care and look after ourselves. Our health is certainly not a guarantee without it.

      Whether we have cerebral palsy or not, whether we look after ourselves, or whether we look good or not, it has to be immaterial to what’s right and wrong. I can’t help but think that others should have interacted with you as you were.

      Doing your best to be accepted is not the same as just being yourself and being accepted. I really do think it’s a shame that society puts the pressure on us to conform just so that we will be accepted.

  11. Hi Ilana, WOW, I love your blog!!! What Can I Say? First, I am shocked you got diagnosed at 46 years old… this is unbelievable.

    I feel grateful to be born in the 80’s right now. I’m 24 years old and I have CP Spastic Diplegia. I got diagnosed at 1 years old, because my mom had a feeling there was something wrong with my balance, mother instinct.

    Anyway I’ve been living with this handicap since then and I had bad times too, but I had really good times too! One year ago I went to a dance summer intensive in Oakland, CA with Axis Dance Company. I wanted to fulfill my dream and dance.

    This was awesome and revealing for me. You can’t stop dreaming of a better life.

    Keep posting, I’ll follow your stories from France, Maylis x

    PS : Someday, cerebral palsy people are going to rule the world, but not tomorrow, because there’s physical therapy!

    1. Thanks Maylis, welcome to the site. I love your sense of humour it’s inspirational.

      I agree with you that we should always follow our dream, but it’s even more inspirational when we follow our dream and live with a disability.

      I would love to get to know you more.

    2. Maylis your response to my blog has certainly put a smile on my face. Thank you. Your attitude to what you deal with is an inspiration. Of course it helps to have support around you and from what you say here, you certainly seem to have had that.

      You’re right, it’s important to be able to dream and I love the fact that you have managed to follow your dream’s path. It doesn’t matter what we deal with, I still believe with empathy and support in place we will certainly deal with our problems a whole lot better.

      With me not knowing I had CP until the age of 46 has made it more difficult for me, but there was never a moment that went by in 46 years where I never gave up trying to find out, what it was I was dealing with.

      It’s lovely and I must thank you for contributing and supporting me on my site now. I would certainly love to support you back… take care of yourself.

      1. http://maylislovingthings.wordpress.com/

        Sorry, I have made a mistake typing the address of my blog! I hope you’ll like it, it’s a lot about dance, but there is a lot of insight in cause for one year.

        I’ve been dealing with depression, ups and downs, but dance helped me and still does!

        So you are welcome from the support! I know that I had the chance to have support from my parents, my sister and my friends, but sometimes I’m tired of being an “inspiration” and I’ve been seeing my other face, the sad Maylis, who is frustrated sometimes.

        I have found the balance between my two sides. Since I had depression, I know myself better and I’ve been happier with the simple things around me and learned how do deal with bad thoughts and dance.

        Sorry for the dear diary moment, but I just wanted to make sure that you understand that I’m not that positive girl that you think I am.

        I am like that to deal with life and because Ive been really down before, you have to be positive but you have the right sometimes to feel frustrated or depressed cause yeah you could have been worse, but hey you could have been better too.

        It’s about finding the balance and just enjoying the little moments of happiness in Life. 🙂

        1. I love this account of you Maylis. Being honest about dealing with depression and finding a way through with something you love is the truly inspirational part.

          I agree with you that being inspirational all of the time would be like standing on show, always being the life and soul of the party; but the realities of what you deal with won’t always make you feel that you are an inspiration. I love the fact that you can be one thing, then be something else too and the fact that you’re not sulking completely, but doing your best to work through your not so good days is inspirational in my eyes. You’re willing to have a go and that’s important, instead of hiding behind your condition.

          I will go back and have another look for your blog. I’ve left you a message.

    1. Maylis I have tried the link you gave me for WordPress so that I could read your blogs, but could not work out how to get on to your blogs once I got on to WordPress.

      I hope you’ll respond back with more details for me. Thanks… Ilana 🙂

  12. Hi, Ilana, my name is Joseph. Your story touched me very much; reading it was like looking in a mirror. My parents did not tell me I had Cerebral Palsy and I found out about from my Godmother just a few years ago.

    Growing up, I was told just that I had a weak left side, whatever that meant. So, yeah, I had that too. I know what you mean. I recently found out that the particular name for my kind of CP is Schizencephaly.

    I was not placed in any kind of special classes or school. There was a good and bad side effect to this choice. The good was that I felt more ‘normal,’ and the bad was that perhaps special classes early on could have given me better coping tools to use throughout my life.

    I am trying to build a good life for myself, despite my CP, chronic back spasms and depression. I have a blog I write on often. I have three books I have published through CreateSpace and one play.

    I am struggling with selling more copies of my books, writing more books and improving my writing. Some days are better than others. (Today I am having a challenging day as my body spasms everywhere, while my writing assistant types this.)

    I am very happy to have found your blog. I’ll definitely be a reader from now on.
    Take care.


    1. Joe welcome to the site and thank you for getting in touch. I feel the same way about my education although I’m not sure about the special classes. I think it would have been good for the extra help in class though.

      Like you say help would have given us coping tools to help us through our life. It’s not right though that you didn’t know what you were dealing with either. Not all of us cope well. Perhaps this was a deciding factor in your parents failing to tell you too. I believe this was a factor for my father in particular.

      What you’ve done Joe is truly inspirational. Keep up the good fight.

    1. Nisha welcome to the site. It’s lovely when those of us who have CP can relate to the other person’s story. Thank you.

      Ditto on your thoughts. I think you’re absolutely right. I have also found other people, who don’t share the same or similar experiences with me, do tend to have issues with what I deal with.

      It’s not to say people don’t try to understand, but unless someone walks a mile in our shoes, I’m not sure they do really can understand what it feels like. If they did, they would be more sympathetic.

  13. I have always been told that I may have cp. Poor motor skills, abnormal gate. I was officially diagnosed at fifty years of age. Still reading …

    1. Thanks Leonard and welcome to The CP Diary. It’s never easy being official diagnosed and having been diagnosed rather late for me too, we’ve had to live through the years where we have had absolutely no idea what we’ve had to deal with and that’s hard.

      I hope that now you have your official diagnosis you can at least bring closure on your diagnosis, even if it takes longer to bring closure on your acceptance of the CP itself.

  14. Hi Ilana, I just found your blog. Wow, what a story! I have CP and want to share my article about selective dorsal rhizotomy (SDR) with you and your readers, as it may be very useful.

    I had SDR two years ago, just shy of 40, and I am living proof that SDR changes lives! I now advocate for it so that people with CP know it may be an option for them.


    1. Hi Nicole and welcome to The CP Diary.

      I am sure those of us with CP who perhaps would benefit from Selective Dorsal Rhizotomy would love to read your article, particularly if it may be of benefit. Thank you for sharing your link with us.

      It will be lovely to have you back on The CP Diary again.

      1. Hi Ilana, I’m sorry for the late reply, I just saw your comment. Thanks for the warm welcome.

        I’m still advocating for cerebral palsy awareness and SDR. my article has helped so many adults and children learn about and have SDR. I just celebrated my three year anniversary since having the surgery on March 29th.

        1. Thanks Nicole. No problem. I’m pleased your experiences are helping others too. I’m also pleased your operation was a success and hope you continue to go from strength to strength.

          From your response, it sounds as though your experiences have been completely positive. Thanks for letting us know.

  15. Hi Ilana, This is one of your buddies from Daily Strength. I just wanted to say I can relate to every one of your emotions and struggles as a kid. It’s hard for me to understand why none of the ‘specialists’ you saw as a kid didn’t diagnose you simply from observation.

    Anyone with education in a physiological related field, from physical therapists to general practitioners should have been clued in. However, it’s awesome you finally received closure. Better late than never… Right?

    My folks were Physical Therapy Nazis… if you know what I mean. My dad built platforms for stepping, bought squeeze grips for squeezing and bench press assemblies for lifting. Once, he even had a tool shop weld finger loops onto a steel guitar’s slide bar, so I could fulfill my childhood dream of playing guitar. He also got me into golf and baseball.

    My mom would put a sock on my good hand when I was in my highchair and pour cheerios on the tray when I was really hungry. If I was going to eat I was going to have to do it with my CP hand! As I got older, she would not let me go to sleep until I did my exercises with very few exceptions. I think that’s where my temper came from!

    Looking back, I wouldn’t have wanted it any different. here is something about all the pushing that builds confidence. It’s a extremely fragile balance between confidence and anger, but it’s confidence just the same. I would take up for anyone who was in the path of bullies in school…I didn’t care how big the bully.

    I tried out and made the HS baseball team playing like the infamous MLB player Jim Abbott (born without a hand). This guy was my idol, because not only did he play pro baseball, but he pitched! At only 60′ 6″ away from home plate he was able to get his glove back on and field batted balls…incredible! You can find him on the net…he is now a motivational speaker.

    During HS and on into college I started cycling, which became my sport. It’s easy on the joints and is a lot like aquatic therapy if your decent at balance. I competed at the novice and cat 4 levels but didn’t do well because I did not have the fast twitch muscles in my right side to sprint.

    I did however compete decently in time trial events and I did several long tours through AYH. After I started my career and started having kids, I inexcusably hung the bikes up and gained about 45 lbs. This did not bode well for the CP and my joints, and standing on my feet all the time during work, with all the extra weight, took even more toll on my back and ankle… two joints that were precariously vulnerable already.

    However, in the last two years, I have lost all that weight and have climbed back on my mountain bike. I had to set it up so I could sit up straighter, but it seems to be working and I’m feeling and moving much better. It’s simply a matter of the mind…you know?

    Your involvement with DS and this blog is inspirational for us all. We all carry those unruly demons we have to whip and keep in their place. Keep up the intimate and positive sharing. It helps immensely.

    1. Thanks Charlie and welcome to the site. Having read your story, I love how you’ve pushed through the boundaries with what you’ve had to deal with; have got on with your life and have come through the other side.

      I think what your father did would scare me too! But I think you’ve done brilliantly. Your story and you are truly an inspiration to me and to others I am sure, who will read what you went through knowing that you have come out the other end, so positively.You didn’t give up where you could have very easily thrown in the towel.

      It’ll be lovely to see you on the site again. I know all of your experiences with CP will help others too.

  16. Hi Ilana, I found your blog and found it very interesting.

    I have a son, who is 2.5 years old and has very mild CP. He had a lack of oxygen at birth and has been followed closely ever since. I think his symptoms are so mild that I probably wouldn’t have looked for any problems and I don’t think his regular Paediatrician would have been concerned either, but they found it because they had him under a microscope from the beginning and have followed his development closely. If not for that, I probably would have been like your parents, and just accepted that he walked late and has trouble with his right hand.

    He does walk independently now and his gait is a little unsteady but I don’t think any random person would say, hey that kid walks funny. His balance isn’t as good as his peers and he still falls a fair bit, but he only started walking at 22 months and is still improving.

    I guess my question to you, is in hindsight, are you glad you didn’t know or do you think it would have helped if you did know? I sometimes wonder if I should not tell my son as he grows up. He is pretty much normal. He struggles with his grasp on his right hand, and like I said, his balance isn’t perfect, but that’s pretty much it.

    He does do weekly OT and PT. As he grows up, I don’t want him to feel that he’s different. I want him to think he can do anything he wants and we’ll work on whatever challenges arise together. I just wonder if it’s better not to know.

    I guess I’m worried that if he does know, that somehow it will limit his ability just in being aware that he might not be able to do certain things. Better to let him try whatever he wants and determine himself what he can and can’t do (not believe less of himself because of a label.)

    I don’t know as he’s still young but I find it interesting that you didn’t know, so any thoughts would be of interest.

    1. Hi Evelyn and welcome to the site. Having not been told that I had Cerebral Palsy and having to find out myself many years later isn’t the easiest way to deal with a disability.

      Your son will know he has physical problems. I think it important any child knows what he or she has to deal with, even if you find it hard as a parent.

      The problem with Cerebral Palsy is that it’s not just a physical disability. Emotionally and neurologically we are just as much tied to the condition. I constantly struggled with my emotions as a result of not knowing and the constant frustrations of being tied to something I knew nothing about.

      As parents we owe it to our children to be honest and upfront with our kids. Finding out a lot later in my life that I had Cerebral Palsy brought about part closure, because I could finally understand and know what I had been dealing with for all of those years.

      It’s important even if we cannot change an outcome to at least know what it is we deal with. When we know it takes the doubt, sometimes anger and concern away. Your son has a right to know what he deals with.

      Finally, knowing hasn’t labelled me in any way. Society and the stigma does that, but only if we let it. I feel liberated in knowing. For the first time in my life, I have come to understand ‘my life.’ That is priceless.

      It will be for your son too. You may not think so now, because he has a long way to go with him still being so young, but he’ll eventually thank you for it. It will also show him you cared enough to put your own emotions on hold so that you could help and be there for him.

      I hope this helps.

    1. Hi Sherri and welcome to the site. You’re welcome. Thank you for reading my story and posting to the site. I think striving to find out what I was actually dealing with as a child gave me the inner strength and determination to find out.

      It doesn’t matter what any of us deal with, it’s our emotions that link us together. We can deal with anything as long as we have the support. That part is crucial to how successful we become. In my formative years I was my own emotional support.

      Please feel free to post again.

  17. I came across this via facebook and I didn’t know I had CP until I was 30 yrs old and am 41 now.

    I didn’t know much about CP until I started joining groups that are on facebook and found out more and more. Like you I had all kinds of physical difficulties, but didn’t know why. My parents didn’t talk about any of it at all.

    I am just now finding out as well that the learning disabilities that I do have are most likely related to CP. I just want to say thanks. I didn’t start learning about the different kinds of CP and the many issues that can come with CP until now.

    I felt like I was all alone in not finding out, until I was an adult and come to find out I am not and so thank you for writing this; it helps me a lot.

    1. Thanks Stephanie and welcome to the site.

      From what you say it sounds as though your family also had difficulties talking about what you had, which is why you never knew. It doesn’t make what happened right, but at least you now know what you have and can bring acceptance on that.

      It would be lovely to have you post again. I am sure some of your own experiences will bring more clarity to others, through some of my blogs.

  18. I just found your site, and I can’t believe I’m reading about so many experiences I have had, both emotional and physical.

    I have Spastic Diplegia and never knew why, as a child. I got pulled from school for doctor’s appointments. Even through surgery, the big elephant in the room was never discussed. I learned that I have CP when I was finishing high school, much younger than some others here.

    I read a letter written by my surgeon to provide proof that I should receive assistance form vocational rehabilitation, as I started college. True to form, though, I read the letter, then never discussed it with anyone. This allowed me to slip back into the denial I was comfortable with by that time.

    It was a double-edged sword for me. I was never held back from anything, but was puzzled by name-calling and bullying I experienced in high school (again, never discussed).

    On the other hand, an important part of my life was the 20 years or so I spent playing tennis. I was very good, and competed in local tournaments as a strong intermediate level player, as well as some advanced level doubles if I had a strong partner.

    One of my biggest shocks came when I was videotaped in a tennis camp and came away feeling like I had been making a fool of myself, no clue that I really looked any different from my tennis friends!

    I’m now 58 years old, and have had a career in healthcare for 35 years. Many more difficulties have surfaced. More falling, more balance issues, much more fatigue. These have been changes I’ve been ill-equipped to cope with.

    My strong desire to ‘fix it,’ working harder in the gym, getting physical therapy has been met with a harsh reality that it can’t be fixed. I’m working through this now with a terrific counselor and still have a way to go.

    Thank you for helping me see that I am not alone as I struggle towards full acceptance of my CP and myself.

    1. Thanks Donna and welcome to my site. Yes as our cases both show, Cerebral Palsy is a journey we didn’t know we were taking or had and yet have come to know through trial and error.

      Your second to last paragraph resonates with my own thinking as a child. Because I had no idea I was dealing with Cerebral Palsy, I too thought I could ‘fix myself.’ My dream was shattered when at the age of 46 I found out that I had Cerebral Palsy through an MRI scan.

      I hope counselling helps and that you get where you want to be with that. Do we ever have fully acceptance of something like Cerebral Palsy? I think we can find an acceptance, but first we must accept ourselves first.

      Accepting ourselves first, means we’re more likely to be able to find an acceptance of Cerebral Palsy. I believe that has to come first.

    1. Hi Mahdi and welcome to the site. I think it’s a case of my parents not being able to cope with the fact that I had Cerebral Palsy and therefore chose not to tell me.

      If I had have known from a child that I had Cerebral Palsy, I probably wouldn’t be running The CP Diary now; I’m a believe that things happen the way they do for a reason.

      It often takes a while for us to find out what that reason is, these things aren’t always obvious, but it all worked out for me in the end.

  19. I am so glad I discovered your blog. I can relate to so many of your comments. You see I have CP also. I was born with it along with a twin brother.

    I have spastic hemiparesis, which effects my left side including my left foot, leg, hand and arm. As a child I went once a year to Shriners Hospital for Children in Spokane for a checkup.

    I was given exerises to do at home, but was never given physical therapy. I never heard the words Cerebral Palsy until my twenties, when I saw it written on my chart at the doctors before a finger surgery.

    I had become a special education life skills teacher. I knew what that meant and I felt such relief that it wasn’t my fault. My whole childhood I was told, if I just exercised and used my hand and foot it would be normal.

    My grandma who raised my brother and I often threatened to tie my right hand behind my back, so I would use my left hand and it would get better. When I told my twin about Cerebral Palsy, he said I thought if you just used your hand it would get better.

    Also the walking into a room anywhere someone could watch me, my left leg and foot would stiffen up so it was very difficult to walk normal looking. I wore a brace as a small child because I walked on my toes with my left foot. Then I ditched the brace.

    Recently a Neurologist wanted me evaluated for an AFO because he said I have drop foot. I wanted to know if you personally have any problems getting along with people? I have always had some problems with people.

    I get my feelings hurt easily and have social anxiety. Sometimes I wish I could live in a cave away from everyone. Do you think this could be related to my Cerebral Palsy?

    1. Thanks Deanna and welcome to the site. I can’t believe reading your story is similar to my own.

      In answer to your question about getting along with people and social anxiety. I believe having Cerebral Palsy can contribute to the problems we have socially. That said, with the right support and guidance in childhood there is no doubt in my mind why emotionally we would have to deal with either of these issues.

      Speaking from my own experience. Emotionally I support myself and continue to support myself, so I know how to overcome the difficulties that someone with Cerebral Palsy can face.

      I believe it’s more how other people choose to relate to us that cause anxiety. Unfortunately, when it comes to disability, people are never sure how to behave or what to say. That in itself can create anxiety.

      If more people we’re accepting and families got the disability and support thing right, I think you’d be a different person altogether. Regardless of what we have to deal with, all issues stem from and start in childhood.

      We start off level-pegging. What happens to us from there, shapes our personalities.

        1. Thanks Deanna. It is very comforting to know. Although you and I cannot change our history or family, knowing that we’re not alone having gone through similar circumstances, definitely does help.

          Thanks for coming on the Diary and contributing and hope to see you back on here again.

  20. Nice job on your blog. I find it very interesting to read stories and know that I am not alone with the struggles that I have faced throughout my life. I was diagnosed with CP at about 1 1/2.

    As a child I didn’t really notice a lot of things. But once I started school, I noticed that I was different because everyone else did. I was pretty miserable and withdrawn until my college years.

    In college I became involved with a group of students that had disabilities. I learned to accept myself as well as others and became a very outgoing and optimistic person. As life went on and I became successful in my career, life became easier. I still have struggles with everything I do but I don’t dwell on it any longer.

    A few years ago I had a little setback. My wife passed and I felt left alone and helpless again. But I have slowly picked myself and am moving on again.

    Thanks, I hope we chat more.

    1. Thanks Ricky and welcome to the site.

      It certainly makes it easier when we mix with people who deal with similar issues to us, because those people are more likely to understand what we go through without passing an opinion but by being more empathetic towards what we deal with.

      Yes our college years can be hard without the right people around us. I’m pleased you learned in that time to accept yourself in as well as accept others.

      Finding an acceptance in ourselves always helps with our confidence.

  21. Oh my God. Your story kicked me in the gut and helped me to see why I’m so angry at the world. And then I read comments from your contributors and the resonance hit my heart like a bullet.

    I too have a twin. I too was told to work harder and make it go away. I too cannot stand to walk in and out of a room due to the scrutiny I receive from others. I’m 42 years old and I’m so incredibly tired and depressed. I kept wondering what my problem was especially lately after a visit from my parents; who still sweep my disability under the rug.

    I have a step-brother who also has CP and never complains about anything and I have never had a conversation with him about it. His is worse than mine. I guess I need to read deeper and see what your solution to your problem is.

    It looks as if you too have had a great deal of therapy and recovery and you know the right things to say to yourself about loving acceptance. Me, I need a break and a ton of rest and I’m beginning to hate my world of deniers and ignorant people. The depression has become unbearable.

    Is there a medication out there that doesn’t interfere with CP? I’m sure a good neurologist could steer me in the right direction.

    1. Hi Alison and welcome to the site. From what you say, it sounds like you have had your Cerebral Palsy brushed under the rug too.

      It used to bother me, but I soon came to realise that the only person who could help me was me, so that’s the stance I took. I did have some therapy, but the help I got didn’t make me feel better about what I had to deal with.

      I came to realise that the people who could change our lives don’t always know how to change things for themselves, so it’s often left to us to change things for ourselves. When I came to realise that I started to change things and haven’t looked back.

      It’s amazing that you have had some of the same issues as me to deal with, but I believe you can turn some of this around for yourself. We all can.

  22. Very well written. I too have mild Cerebral Palsy. I kind of find it comforting to read that there are others out there who share the experiences and challenges that I have and they are willing to share those experiences.

    I am 58 and was diagnosed at 1 1/2 years old. I have always wanted to tell my story and have been trying to set up my own blog, but always wondered if anyone cared. This has encouraged me to move forward with my blog. Thank you!

    1. Thanks Ricky and welcome to the site. The world is made up of different people, some will care, some won’t know how to care.

      I’m pleased my site has given you encouragement. We support and encourage one another here on my site. Please feel free to come back and post again.

  23. I’m so glad I found your blog. I am 32 and have always had balance issues and recently started falling a lot more. I drive, have a job; am married to a wonderful man and own 2 dogs. I have always had this feeling that I was ‘different’ because I had to be extremely careful where and how I walked.

    I also seem to get concussions/migraines/cluster headaches easily, just from tripping on the carpet. Well my Neurologist said the other day “Laura, you have Cerebral Palsy.”

    My mom confirmed that she believes it is a mild, mild form. My question is does anyone have headaches or migraines and does anyone else have a mild case and have to be extremely careful?

    1. Hi Laura and welcome to the site. I haven’t heard about migraines and Cerebral Palsy.

      From what I know from my numerous research posts, there could be any number of reasons for why you have migraines/cluster headaches or concussions, but they are worth checking out because it’s not something you should have. They’re clearly there for a reason.

      As far as balance is concerned. I do tend to have to be careful myself. It’s easy for me to bump into things and have balance issues myself. It’s important to keep the muscles strong so that as we age we’re still mobile, but there is little information out there as to how we will age.

      Just do what you can. That’s all I do.

  24. Thank you so much for your wonderful blog. As a family member of an almost 70 year old woman with CP, I am only just realizing what her state of mind may have been throughout the years.

    In trying to find resources to improve her quality of life, I’ve found this blog. I look forward to sharing this with her and perhaps opening dialog to topics that have been overlooked for so long.

    Many thanks to all who have posted previous experiences and hopes to further opening perspectives for others with CP and their families too.

    1. Hi Beth and welcome to the site. Thank you for such a wonderful and positive response about your relative who is 70.

      One of the reasons I started my blog was because there was little to no information out there on what I deal with, so I know how your relative feels.

      I love that you’re taking an interest in knowing more about the Cerebral Palsy and am happy to help you further. I hope you’ll visit the site again. Thank you for posting.

  25. Hi, how amazing to read your post and know I’m not the only one left in the dark. I have spastic Diplegic Cerebral Palsy and didn’t find out until I was 40.

    I was paralysed as a child from the age of 2 until 10 and since then I have been diagnosed with Arthritis caused by the trauma of the accident that left me paralysed. Because of this I was given pain killers and anti inflammatory’s which have gradually been increased in strength over the years.

    It wasn’t until recently I was told I had to do yet another course of physiotherapy, the therapist said she would refer me to the Neurologist. This was a first and if it hadn’t been done I would still be no wiser.

    He felt something wasn’t adding up and said he would check my notes and there as clear as a bell was my diagnosis at age 3. No one felt the need to share this with me, growing up I was just ‘the spastic.’

    Life has been a struggle and I am in constant pain and discomfort but I have succeeded through gritted teeth. I went to college and got a Diploma, had 2 amazing children, became a foster carer and worked nights to make ends meet.

    Oh and I also climbed 2 mountains, abseiled and have done 3 bungee jumps for charity, so I think I can hold my head up high.

    1. Hi Cherie and welcome to the site. You absolutely can hold your head up high. You have proved to your family what they should have encouraged all along.

      A disability is only a limit for those who don’t understand how to work round what we deal with. There is no excuse for people’s behaviour. Not knowing, or ignorance doesn’t make it an excuse, but fast forward to 2017 and society has moved on with disability and things are slightly better.

      We can’t turn the clock back, we’d have to change our families and society to do that, but we can change our perceptions on how we see that time. I know I’m stronger for it and you are too, clearly.

      For those who are part of this scenario, they know who they are. We not only came through, we understand and have changed our lives for the better.

      Feel free to post to the site again.

  26. Ilana, thanks so much for your blog. I am almost 70 years and have Cerebral Palsy.

    I had a wonderful childhood, great parents, been married for 48 years to a wonderful supportive husband. I taught in school for 33 years and loved it very much. I retired in 2004. Since I have retired my walking has been getting worse. My physical therapist says it is just part of the Cerebral Palsy.

    Is there anyone out there around my age that can let me know if it is normal ageing, or is it the Cerebral Palsy?

    1. Hi Phyllis and welcome to the site. Yes, unfortunately difficulty in walking, is part of the ageing process with Cerebral Palsy. But there are supplements out there that can help alleviate the pain in joints.

      If you are interested in finding out more, please don’t hesitate to get back in touch. Please feel free to post again and I appreciate your response.

  27. Hi Ilana, its awesome to finally find a blog, that your story and others here share and when I read all of them, it hits home hard.

    I don’t remember either of my adopted parents telling me I had Cerebral Palsy. I remember my adopted mom doing exercises on my legs and ankles and it hurting like crazy.

    I remember screaming bloody murder every night, but again no one told me why. Also I am deaf as well, so it was hard on me as far as social wise, with people and kids even and my balance is super bad.

    At the age of 44 last year I was diagnosed with Pigeon toe feet and Cerebral Palsy, along with having one leg shorter then the other. My adopted mom had never told me this at all.

    I have stomach problems, breathing problems, anxiety, depression, the list goes on and on. Some of this I think is Cerebral Palsy related. I have tried to research it on my own. The hearing as well i believe is caused by it.

    My foot doctor ordered a walker for me on top of all that because as I have been getting older my falls are ten times worse. I am glad there are support for Cerebral Palsy, so I can learn and read different stories. Thanks again. Buffy.

    1. Hi Buffy and welcome to the site. Apart from my site and what I provide here, I’m not sure about the Cerebral Palsy support in the true sense. Unless parents and families provide children with the emotional support they need, I for one don’t know of any charity that provides emotional support in this way.

      Your particular story resonates with me because your story is so similar in some ways, different in others with the different symptoms we both deal with. How we got to find out is more or less the same and near to the same age too.

      It is hard to understand how others may fail to understand and help us in the way we need help. There are days when I tell myself I understand why things worked out the way they did, then have to tell myself that I need to keep myself focused on the truth and the fact that I didn’t know and had to work things out for myself. That never leaves us.

      Neglect is never something we can just bury as if it never happened. We must deal with that and come to terms with it. I take comfort from my site and the good it’s doing, not only for me but for others too, where as you say we can share our experiences, but it doesn’t take away the hurt fully.

      With my site, we just learn how to find an acceptance and an understanding through all of our experiences and are able to do that together. I hope you stick around to check out more of my site and please feel free to post.

  28. Hello, I am delighted to have found your blog. I am a 34 year old mother of 3. During my own birth I suffered fetal distress resulting in lack of oxygen and brain damage resulting in very mild CP.

    My Pediatric notes say Monoplegia, possibly Hemaplegia but from reading your story and researching the terminology I feel I fit more into Hemiparesis.

    My right lower leg is mostly effected. I walk with a very slight limp that is worse when tired or run down. As a child my parents told me I had a weak leg, I was born that way and for the most part I accepted this.

    I never let it stop me do anything as a child, I ran, climbed, hiked etc. I would regularly attend doctors, specialists etc and my mum would do physio with me each evening.

    I have limited strength in my right arm, e.g. I can’t carry a handbag on that shoulder or lift the baby with only my right arm, but range of movement seems perfect, except for some fine motor skills such as fastening difficult buttons.

    As I grew up I did begin to become more self conscious of my weakness. I couldn’t wear heels or even flip flops, slip on shoes, etc, as a teenage girl this began to bother me.

    I also became more aware of my limp and as you mentioned I would (and still do today) dread the thought of walking across a room of people, my leg seizes up and I can’t relax it and I walk 10 times worse than normal.

    I have found having children particular hard on my body, even after the pregnancy with lifting, feeding and the general manual handling that comes with young children.

    At present I am really suffering with day to day pain in my right ankle, to the point where every weight baring step is painful and I’m really limited in my mobility. (It’s like have a badly sprained ankle all the time).

    This pain leaves me very exhausted and drained and is impacting on my mental health, because I can’t be the wife, women or mother that I want /could and should be.

    On my notes as a child from an Orthopaedic surgeon he diagnosed me with progress forefoot vasur deformity, unresponsive to splints and other corrective procedures, he suggests an anterior tibialis tendon replacement surgery.

    On asking my mum why this was never carried out she said there was a risk with young children that they would over correct/ or the foot would revert back.

    Today I suppose I’m at a stage where I’m frustrated with the daily pain and I’m wondering if anyone else suffers pain that is now impacting on their daily life?

    I’m also wondering if this surgery might help my pain now at my age? Does anyone else have experience of this surgery or something similar? And I’m also aware that I have some work to do around my feelings of affliction, frustration, anger, resentment hard done by and for now pain.

    Until now I have felt very alone and isolated with my disability, as anyone I encounter is always much worse off than me, but I believe it’s relative to each person and the effect and management of it is just as important to each and everyone of us.

    I am very grateful to have found your blog, thank you, Siobhán

    1. Hi Siobhan, and welcome to the site. I’m pleased that my site has helped you in this way and that you found my blog. That helps me also.

      Your story is very similar to mine and although it’s different in places, for the most part what you have must be very similar to me. I feel your pain. Your issues were some of my issues too.

      I think you’re absolutely right, any disability we deal with is relative to each person and the effect and management is just as important. In some cases it’s even more important, because without effective management, we will not only physically struggle more, but emotionally too.

      I think it’s massively important because we have a disability to work on ourselves. I can understand your anger, resentment, frustration and feelings of affliction. I dealt with all of those things too.

      I am happy to help where I can. Please feel free to come back on to the site, read more of my blogs, get involved in what we do here.

      Finding your own understanding on what you deal with and working on yourself will help you bring about that much needed change.

  29. I can relate so much to this. I was diagnosed as a baby, but knowing what my condition was, did not translate to understanding from my family.

    My Mom pushed a little too hard at times, as did my brother. I am convinced they both thought with enough exercise and stretching, I would be able to be ‘normal.’ For a while, I believed the lie, too.

    It only made me feel more crushed when I would fail at something that came naturally to my siblings, (running was a big one.) There was a drive to be just like everyone else. (Run, jump, play to name a few activities…) However, that makes things I can do (swimming and wrestling with my brother) all the more special and freeing.

    I’ve recently accepted my lot and believe I can use it to help others who are struggling with their own problems. That doesn’t mean my family has completely accepted it, though. (They push me to drive) but the prospect terrifies me because I’m almost certain the first time I get behind the wheel will be my last because of a comparatively slow reaction time.

  30. Thanks David. Your experiences mirror mine. What I find sad is that with the right support, a little knowledge and empathy our lives will have turned out differently.

    The whole disability thing always seems to come at a mental and emotional cost. Your family should have fallen into line on your disability, so that they made you feel you could be yourself, without having to compete with them.

    I don’t know how bad your cerebral palsy is, but rather than be made to feel as though you’re the problem, your family could have with your permission spoken to an instructor.

    Although families do have good intentions, disability has to come first. It’s their job to make sure you’re comfortable with yourself and with what you’re being asked to do.

    It’s not right being pushed or made to feel bad on the things you yourself aren’t sure you can do. They also have to accept what you deal with.

    1. I would classify my CP as “moderate”. There are things I find extremely difficult (anything requiring both hands, due to limited use of my right hand for example). Other things, I’ve adapted my own way of accomplishing the tasks, (doing dishes, laundry, entering and exiting the tub, and dealing with shoes.)

      It’s annoying when someone tries to jump in and help. I know they have great intentions, but I want to slap them when they do, because they ruin my proven system for getting the task completed.

      1. Thanks David. Yes, I can understand your frustrations. There has to be a balance, but I think the main problem is attitude.

        When it comes to disability, family either ignore it, or they will do too much out of guilt because you have the disability, or they think because you have a disability, that somehow makes you incapable.

        I do think there needs to be change around disability. If your family were to see your disability as ‘normal’ they might choose to back off more and let you get on with it, knowing that if you need help, you will ask.

        It’s the nature of disability and family. They don’t mix very well.

  31. Thank you for sharing your story. As I read your story I could relate in many ways, having a diagnosis of Cerebral Palsy since childhood, but not knowing why I spent a lot of my life looking backward and looking towards other people for my happiness.

    I appreciated your description of anger and frustration. I struggled with the difficulty in understanding why I was different. All I wanted to do was to fit in, to be like everyone else. It was particularly difficult in school wanting to fit in.

    Thank you for your vulnerability and willingness to share your experience. I hope to be able to be a good example for my own daughter, to count my blessings, to thank God for her and that unique connection.

    Rather than choosing to live in self-pity-town. I am trying to change my address, share my experience, and embrace life on life’s terms. Thanks for your example.

    Best wishes to you.

    1. Thank you and thank you for reading my story and responding on my blog. Yes, with cerebral palsy we automatically share the same frustrations and vulnerabilities.

      Those could be made easier if society were to change its attitude. It’s hard not to feel self-pity when the disability you deal with continues to be an uphill struggle and you have little support.

      No one should be made to feel like that. I know that with the right support in place, those of us with a disability would feel less of a burden and feeling less of a burden means we would more likely fit in better.

  32. Hi Ilana, I just found your blog because mine was listed on Feedspots Top 20 Cerebral Palsy Blogs to Follow in 2021, along with yours.

    I was born in the early 1980’s, also the second-born of identical twins. I also have Cerebral Palsy.

    It’s always amazing for me to find other people with Cerebral Palsy because growing up, I never saw adults with Cerebral Palsy. I never saw anyone like me.

    So nice to meet you.

    1. Hi Tonia, nice to meet you too. Yes, growing up I also didn’t know anyone personally with a disability. But back then I didn’t know I had a cerebral palsy, or that it was a disability.

      Living with any disability is difficult, made more difficult because we have to fit our lives into an able-bodied society. It’s not always easy for us to do that.

      If attitudes were to change across the board, so that those of us with a disability were seen as the world see others, how much better our lives would be.

      Perhaps it is the same for you, but given what I mentally deal with around autism, it often feels like I am an inconvenience.

      1. I’ve also recently self-tested autistic and identify as neurodivergent.

        I don’t necessarily feel that living with my disabilities is hard as much as societal attitudes, barriers and ableism makes it hard.

        Feel free to come by my blog / connect on other social media. I love widening my circle of people with Cerebral Palsy.

        1. Thanks. When we deal with a physical, mental or emotional disability, societal attitudes, barriers and ableism do present in our everyday lives. Maybe not all the time, but they are there.

          It’s not that we look to invite problems in, but empathy, patience and understanding from others, would go a long way to helping us understand we’re not an inconvenience, and that we can fit into other people’s lives, living with a disability.

  33. Thank you so much for this blog. I am 44 years old and I have CP as well. I was feeling lonely and scared after having a semitendinosus transfer, to improve my gait after developing hip pain, when some directed me to this blog.

    Having this surgery has brought up all the childhood trauma. I related to looking towards others to make me happy, self-pity, and feeling alone. I overcame that with a lot of therapy, but I have been struggling as I have had to ask people for help since my surgery.

    This blog made me feel like I am not alone. Thanks.

    1. Hi Antoinette and welcome to the site. Thank you for taking the time to respond on my blog. I hope you will find some of the blog posts helpful.

      You are certainly not alone. I resonate with your every word. What I find equally sad and irritating is that life doesn’t have to be this way, with or without a disability.

      Away from what you deal with, you are normal, you just happen to deal with a disability that outwardly changes how you perceive and deal with what you get to deal with. The help you need should be unconditional.

      My blog is intended to show that we are all the same. Yes, we all bleed, we’re all fighting the same emotional battles, striving to fit in, that makes us the same, disability or not.

  34. I am Kriti, a mother of two boys. One is 4 and my younger one is turning 2. His name is Rishit. He is diagnosed with Mild spastic cerebral palsy last year.

    He couldn’t sit on his own till he was one. With regular physiotherapy, he can sit on his own and has started crawling. He holds furniture and stands holding it. I have no idea when or if he will walk, or will he walk properly? Will he have a normal schooling?

    I feel really bad when I see him trying to do something and fall. It makes him angry and I completely understand that. I just don’t know what I can do to make him feel better.

    Reading all the above made me a little optimistic that people with cerebral palsy can be great achievers and live a normal life. Thank you for giving this platform.

    1. Hi Kriti and welcome to the site. Yes, you have all the questions a mother would have. It is also normal for you to want to know everything about your son and your son’s struggles.

      It is also normal to want to know how he might fare growing up, normal to feel bad when you see him struggle and feel helpless to help, to change things for him. That said, with your love, support and guidance, Rishit with cerebral palsy can become the best version of himself.

      I have more than my share of mental and emotional struggles. Through my writing I am free of any disability, away from my writing I continue to struggle with my disability.

      Although I have never met anyone with cerebral palsy, I have been on a forum in America, and was in touch with people who had cerebral palsy, who were also great achievers. Cerebral Palsy doesn’t have to be a life sentence.

      Yes, we can have physical, emotional and mental restraints, but where each of our brain damage presents differently, you can with the help of specialists help your son work through his difficulties, for him to be the best that he can be.

      Feel free to look through my blog and add to the conversation. I started my blog because it was the first positive thing I have done.

      It has helped me to unlock my thoughts and work with universal truths on my experiences, but it also brings clarity and understanding for others too. It has also helped me focus on bringing understanding.

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