My cerebral palsy (CP) Story

My obsession with shoes started when I was just three years old. I slipped my hands through the shoes and began to crawl from room to room on my hands and knees. Thirty nine years ago, I was born two and a half months premature. I weighed only two pounds thirteen ounces – the size of a baby chicken! I stayed in an incubator for almost two months. My family was so excited when I finally came home.

When I was eight months old, my mom stood me up on a table to change me. She noticed that if she did not hold on to me, I would wobble from side to side. I stood on the tips of my toes. I could not rest my feet flat on the floor. Lacking balance, I rarely took a step without holding on to something. My parents began to worry. They wondered why I was not walking. They took me to my pediatrician; he thought I had weak ankles. Nearly two years passed. I still was not walking on my own. My parents knew something was wrong. At 28 months, they took me for a neurological evaluation at Variety Children’s Hospital in Miami. The Director of Child Neurology informed my parents that I had (spastic diplegia) cerebral palsy (CP). The doctor told my mom I would never be a ballerina. Then he asked with a smile, “how many ballerinas do you know?” How ironic since I stood on my toes! The doctor told my parents not to force me to walk; he said I would walk when I was ready.

I grew into a happy little girl with big, brown eyes and dark hair. Each day, I discovered a new pair of shoes. I had a blast crawling around the house with my hands in shoes, which became my symbol of hope because I could not do the one thing I wanted to do most – walk. I knew I was not ready to walk on my feet, so I found another way to accomplish my goal. I did not walk like everyone else. What mattered is that I found a way to walk. All I had to do was put my hands in the shoes and go! I learned at a very young age how far I could go in life just by being determined. Looking back, I realize I probably did not even think about what I did. I knew I wanted to walk. And, I did – in my unique way.

I spent the first four and a half years of my life walking in other people’s shoes. I desperately wanted to walk in my own. On January 11, 1978, an orthopedic surgeon lengthened the Achilles tendons in my legs. The operation changed my life forever. However, the change did not happen right away. I stayed in the hospital for four days with casts up to my thighs. I remember lying still and feeling itchy. I could not wait to go home! Finally, I went home in a wheelchair. I learned to walk with my own two feet – something I had never done before. I would stand stiff against the wall staring at a brother or sister who stood across from me encouraging me to take my first steps. I was scared. Everyone in my family wanted me to walk. I didn’t move. This went on for some time.

My mom took me to the doctor for a follow up visit and expressed her concern. He looked at her straight in the eye and said, “she should not be walking at all. She is a miracle.” Learning to walk without assistance was not easy. First, I wore braces up to my knees. Then, just in time for Kindergarten, I wore full-length hip braces. As you can imagine, the other kids teased me constantly.

Eventually, I learned to walk on my own. Now, as an adult, I am experiencing problems associated with CP and the constant stress on my body. I tire easily when walking. If I walk too much, I can experience back pain. I have problems stepping up curbs with my right leg – something I never had problems doing until five years ago. This continued to be a such a problem that I asked my orthopedist for a cane. I couldn’t bring myself to use it. I could continue to have these problems and more as I age, possibly requiring the use of a wheelchair. I do not want this to happen to me!

Although I work out and try to stay active, my balance and flexibility are poor due to CP and the tightness (spasticity) it causes. Selective Dorsal Rhizotomy (SDR) is the only procedure that can permanently eliminate the tightness in my legs. This surgery will allow me to do things I’ve never even imagined – walk with greater ease and fluidity, have better balance and flexibility – just to name a few. One thing I’d love to do is ride a bike. SDR may make that possible!

My Coventry Medicare HMO insurance denied my request to have SDR in St. Louis with Dr. T.S. Park, the surgeon world renowned for this procedure – and one of the few who performs SDR on adults. Dealing with the insurance company has been a very disheartening process. **UPDATE** I switched from Coventry to original Medicare plus Medicaid as my secondary insurance. I will have the surgery on March 29! I am still fundraising because I will not know how much of the $50,000 Medicare/Medicaid will cover until AFTER my operation. FL Medicaid does not cover out of state services (only in a case of emergency), so I most likely will be denied coverage and will have to appeal.

I have raised over $4,250 so far – thanks to the kindness of family, friends and many people I’ve never had the pleasure of meeting. The kindness of strangers has truly been remarkable! All donations will be applied to costs associated with my surgery: airline tickets, hotel accommodations, insurance deductibles, physical therapy (I will need a lot of post-surgery PT), etc.

Please consider making a donation to Help Nicole Get New Legs so I don’t have to fight Medicare/Medicaid after my surgery. You can also help me get the word out by sharing my fundraiser. Just click the links below to share on Facebook, Google+ and Twitter. Thank you to everyone who has donated to and supported my cause. Every cent (and share) counts!

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16 Comments (+add yours?)

  1. shoes
    Nov 18, 2012 @ 20:39:50

    I found your CP story very interesting as my 6 year old son has CP and was also born very early (at 26 weeks). While we have not had to do any surgeries, he wears orthotics and a night boot every day. I have not heard about SDR, but am going to look into it now. Good luck to you, it sounds like you are a strong and brave person who does not give up!

    Reply

  2. readinpleasure
    Nov 19, 2012 @ 06:43:55

    The only way I can help you is to pray fervently for donations to come in so you can have your surgery. Nicole, hugs to you and all my warmest love.

    Reply

  3. Maurice Lindsay
    Nov 20, 2012 @ 15:13:49

    WOW, your CP story is very touching Nicole. I will send an email blast out to my subscribers to your donation link. You are in my prayers and I wish you all the best!

    Reply

    • bareyournaketruth
      Nov 20, 2012 @ 15:18:57

      Hi Maurice,

      Thank you so much for sending out an e-mail blast with my donation link to your subscribers. I truly appreciate your support. I just sent you an e-mail before this message came through. Thank you for your donation. :-)

      Reply

  4. ameliaclaire92
    Dec 01, 2012 @ 23:12:54

    I’m 20 years old, and since January of this year, I’ve used my blog to talk about my life with CP. I can relate to so much of what you talked about here. Thank you so much for sharing your thoughts. The world needs more voices like ours. :)

    Reply

  5. Trackback: My Blog’s First Anniversary! « bareyournakedtruth
  6. Terry
    Jan 19, 2013 @ 18:15:36

    Hi there. I really thought your story was touching. Actually very similar to mine as a child and growing up. I have CP and I am 49 now and have started to see some differences as I age. My CP is rather mild I have a gait and quite a bit of tightness. I have always been so easy going about my CP I didnt let anything stop me, but I have become quite stiff and actually it makes me panic into a stand still. I fell at walmart parking lot today and was so embarressed. This is the very first time I ever fell in public. Im crying now. I broke my glasses and was bleeding. The attendant was nice enough, but for one who never needed help, im devestated.

    Reply

    • bareyournaketruth
      Jan 19, 2013 @ 18:43:37

      Hi Terry,

      Thank you for reading my story. I am sorry that stiffness due to CP caused you to fall at Walmart today. I know how embarrassing that must have been. I’m glad an attendant was there to help you. I hope you will be okay. Please see your doctor to make sure.

      Reply

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  8. bareyournaketruth
    Mar 10, 2013 @ 12:18:48

    Reblogged this on bareyournakedtruth and commented:

    March is Cerebral Palsy Awareness month. My SDR surgery is on March 29…19 days away and counting! Read my CP story for updates!

    Reply

  9. jump1434
    Mar 12, 2013 @ 08:44:03

    “I knew I was not ready to walk on my feet, so I found another way to accomplish my goal. I did not walk like everyone else. What mattered is that I found a way to walk.”

    I love this part on your post.. !! its very inspiring.. !! I hope everything goes well for you.. !!

    Reply

  10. Trackback: The Secret to Success | bareyournakedtruth

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