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17 Ways My Cerebral Palsy Affects Me

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Cerebral palsy affects more than just my ability to balance. Below I have listed 17 facts about my cerebral palsy and how it impacts me and how I view the world. I chose the number 17 to represent the estimated 17 million people in the world who have cerebral palsy.

1. My cerebral palsy affects the right side of my body, especially my right leg. My disability was caused by a brain injury before birth, and for this reason will never be cured. My muscles are tighter than they should be and my right side is partially paralyzed. My CP also impacts my ability to understand verbal language. My disability touches other parts of me that might surprise you.

2. Cerebral palsy is the most common physical disability in youth in the world, but I still feel incredibly isolated. I yearn to meet someone else who has the same type of CP as I do. Growing up, no one else in my life had my disability, or even a physical disability for that matter.

3. No, it is not contagious. Yes, I have had adults ask me this question before. (Yes, schools need to teach about disabilities like CP!)

4. CP is not a progressive disability in the sense that my brain will not get any more injured as I age. But the detrimental effects on my muscles do get worse as I strain them and compensate for my paralysis more and more. Tasks that used to be fairly easy for me are starting to cause me more pain and difficulty. I fear how my disability will weaken me as I get older, and I worry one day it will hurt too much for me to walk.

5. I do not hate all forms of physical activity. In fact, one of my favorite things to do is walk. I love walking outside and through parks – sometimes even running – and just losing myself in my thoughts. Walking often hurts me, but that does not mean I do not gain immense joy from it.

6. I am a recent graduate of the University of Michigan. I even graduated with high honors. But I was also in a special education preschool for a few years. School used to be very, very hard for me. And even in college it was still quite hard. It took me about double the time to do any reading or paper as it would for an average, able-bodied peer. Our society often measures success by how fast you can complete a task, so it took time for me to redefine what success means to me and to forgive myself for not measuring up to that type of expected success.

7. I cannot drive. I often tell people that this is because you need to use your right foot to drive – and that is the appendage of my body most affected by my disability. While this is true, there is more to it. It also is hard for my brain to multitask and process everything that is needed to drive. It is very hard for me to talk about the mental aspects of my disability – how it impacts the way I think and process information – and that is something I am still working on.

8. I must advocate for myself. When I was in high school, I developed tendonitis in my strongest leg because I was given such intense workout routines in gym class. My teacher insisted I “try my best” and didn’t believe me when I said I could not complete the exercises. He said only people who try would get an A. I was desperate to get that A, so I tried despite my best judgment and even though it went against the accommodations I received and what my doctor advised. I was in a wheelchair for two days and could not use stairs for a month following the injury. That experience taught me the very severe repercussions that can come from not advocating for myself.

9. Because of my disability, I understand the cycle of ability status. I understand that we all start life completely dependent on others as babies, and we generally end life in this same capacity. As we grow old, we slowly lose our ability to be independent. Eventually, we are all disabled. A lot of folks don’t recognize this, and the elderly folks in our society often do not get the help they deserve for this reason. Many people with my type of CP get arthritis by their mid-30s. I am forced to confront the premature aging of my bones already, and to accept that my body will not always be as strong as it is now. That is something we all have to one day come to terms with — it is just sooner for me.

10. I worry about finding relationships. When I was around 4 years old, I told my mother that I would never have a wedding. When she asked me why not, I responded, “I don’t think anyone would ever want a wife with cerebral palsy.” I was only 4 and had somehow already received the implicit message that disabled people don’t often find love. And I would be lying if I said I do not still have these insecurities.

11. My disability is invisible in the sense that a stranger cannot tell I have a disability just by looking at me. I am often grateful for this, but sometimes it makes it harder to receive the accommodations I need because people assume I am completely able-bodied. For example, when I am on a bus and sitting, people have asked me to stand to give them my seat, even though I am technically entitled to the seat through the Americans With Disabilities Act. I often do not have the confidence to voice this to strangers, though.

12. When I was in elementary school, I often could not understand what was said in class or by my friends because my oral comprehension capabilities were so limited. I copied my best friend’s actions in class to keep up. It was isolating, and it still can be. I often daydreamed since I couldn’t understand what people were saying. I still daydream a lot when I can’t follow what is being said, which happens more often than people think. I think this is part of why I love reading and writing so much — because I can communicate at my own pace.

13. I grew up believing in miracles. My doctors and therapists told my parents I would most likely never speak, walk or be literate. When I excelled in all of these activities, I realized my body had in many ways defied medical science. I feel incredibly grateful to have grown up believing in myself and in miracles this much. As much as I could hate my disability sometimes, I felt pride in my body for overcoming it. I felt strong more than I felt weak.

14. I am not proud of my disability like I am of my sexuality. In fact, there are some days I really hate it and hate my body for housing it. Sometimes I am ashamed of it and feel complete disgust towards it. I resent it for what I fear it could limit me from experiencing. I view my disability more as a virus attacking my body rather than as a part of myself and my muscles. I think I separate my disability and my body this way so I can limit how often I direct that hatred towards myself.

15. I love my disability for showing me the kindness in humanity and for forcing me to be dependent on others. I rely on others to drive me, to help me open containers to eat and to do many other day-to-day tasks. I find this interdependency very beautiful and appreciate that it allows me to see how kind others can be. It also forces me to redefine what it means to be strong and what it means to be weak. While our society generally labels asking for help as a sign of weakness, I view it as requiring immense strength. I truly believe that if everyone else had to be this dependent on others, we would live in a better world. Instead of dependency being seen as a weakness, it could be seen as a strength.

16. If I had the option to wake up tomorrow and no longer have cerebral palsy, I would take it in a heart beat.

17. If I had the option to go back in time and never be born with cerebral palsy, I would not do it.

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Thinkstock image by Lolostock.

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What Cerebral Palsy Has Given Me

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When I was a kid, I remember going to the occupational therapist and working on fine tuning my motor skills. It would take longer than the average kid, but I would eventually be able to walk on my own after many hours of trying and failing. I would go on to have my first major surgery in first grade, which would include three procedures in one long day.

I remember the braces, the hours spent in physical therapy where I would practice walking straight and with my shoulders up. I remember the times on the elementary school playground where I would be the last pick for the sports teams and trying to make myself run a little faster or jump a little higher. On the surface, it would seem that cerebral palsy has just made my life harder, and hasn’t benefited me in any way. However, looking back on it, I can see how that’s simply not true.

CP has given me so much; it has made me a stronger and more empathetic person. It’s taught me that no matter what anyone else says, I can do what I want to do; the only thing stopping me is how hard I want to work for it. It’s made it more difficult to walk and do certain tasks, sure. But all in all, CP has been a gift to me. It’s been a motivator, a challenger, something that has given me so much. I look back on all I’ve been through with CP and know that it’s made me who I am today.

This world would have me believe it’s what’s on the outside that counts. CP has made me believe otherwise. CP tells me that no matter what someone says or does, they cannot take away my grit or desire to succeed, something that’s been built up consistently over the years. When I leave this world, I don’t want to be known as someone with a disability. I want the world to know that this disability has been one of the greatest teachers I could have ever possibly known.

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Tomorrow My Daughter Gets Labelled With Cerebral Palsy

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Tomorrow my daughter gets a label. My girl is going to get labelled as having cerebral palsy (CP).

This is not a surprise to us. These two words have been in my head ever since a developmental pediatrician finally said it looked like she had CP. This was after I said in frustration that no one had told us a reason our baby girl wasn’t walking or pulling up or sitting like other 18-month-olds. We still didn’t know why, even after she was in physiotherapy and being monitored regularly. When the doctor said CP, I felt like someone punched me in the gut. Even though these words have been with me since that appointment with the pediatrician last year, it won’t stop the gut wrenching feeling when I hear our family doctor tomorrow confirm the MRI results and say she has cerebral palsy.

I worry this label will hurt her. I worry people will think of her as the girl with the leg braces or “that girl with CP.” I worry this label could prevent her from taking risks, having opportunities, feeling included and just being happy. I worry this label will hurt her self-esteem. I worry she will hate shopping for shoes or going to dances. I worry she won’t feel like she is enough. I worry she will become CP.

 

But when I really take a step back and look at my daughter and think of everything she has overcome in such a short amount of time, I have to remind myself I shouldn’t worry so much. My daughter is able to walk. She learned to walk with orthotics (AFOs) and now has the ability to walk without them. She has had multiple and painful injections into her legs to help with her tightness and was a lot braver then her Mommy for those needles. My daughter rocks an eye patch and recovered after eye surgery like a champ. My daughter looks out for her baby brother and showers him with love every day. My daughter’s laugh is so adorable and infectious I want it as my ring tone so the whole world can hear the pure joy in her giggle when someone calls. My daughter’s smile lights up a room. My daughter’s imagination is incredible. When my daughter tells me “thank you” or out of nowhere that she loves me, it melts my heart and warms my soul.

My daughter is more than cerebral palsy. When we get that diagnosis tomorrow, it means cerebral palsy is something that is part of my daughter but it is not who she is.

She is amazing.

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What Love Is When You Parent Kids With Disabilities

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Love waits in countless waiting rooms of countless doctors for appointments and therapies.

Love smiles at the nurses because you need them on your side.

Love does not dishonor the knowledge of specialists, it does not point out to the Doctor that you know all the “doctor-ease” they whisper to interns.

Love spends sleepless nights researching.

Love is a medical advocate.

Love remains calm when a nurse is digging around looking for a good IV vein.

Love holds a screaming child down for procedures.

Love is bold enough to say “stop.”

Love can recite endless lists of surgeries, medications and dosages.

Love knows how to smile so that the child isn’t scared.

Love cries and screams into a pillow in a hospital bathroom.

Love knows the wrongdoings but uses them to be an empowered advocate.

 

Love does not delight in a broken school system but rejoices in an IEP that is followed by all on the team. Love makes every efforts to set the child up for success. It knows the law and special education codes.

Love protects, always trusts its instincts, holds to hope of a good day’s report, holds educators responsible.

Love pushes past those who can’t see potential.

Love sees potential.

Love never fails because it always tries.

When faced with doctors, teachers, therapist and experts that look into a still not lived future, Love hears them say “never” but “never,” will be silenced.

Love knows that “different” is not a negative term.

Love knows that different is beautiful.

Where there are whispers, pointing and staring in public, they will be ignored — where there is knowledge and a future to be found, Love will travel and save to make it happen​.

Love is happy to sacrifice.

Love is a force.

Love is a mother.

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My Life With Cerebral Palsy Is Like Yours

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What would I do without my cerebral palsy? Walk by myself? Talk with everyone understanding me? Or just have a “normal” life? Truthfully, I wouldn’t trade my life for anything!

In my 20 (almost 21) years, I’ve realized I have a normal life, but with a unique twist. I have endless mountains of therapies and doctors’ appointments. Some people might think that is all what people with disabilities lives consist of, but that is not true. We can often do things other people do, but we do them differently.

Some people say that parents of kids with disabilities won’t take their children to practice or watch them play sports. This might be true for some parents. But for mine, I had them chauffeur me around since day one! When I was 7 years old, I played T-Ball. My parents would put me in my gate walker and away I went. I needed help with hitting the ball but other than that I did it all! As I got older, I went out for band in fifth grade; I played the drums on an electric keyboard. Man, I really could play that thing! I did cheerleading in seventh grade, had practice every day and I had to cheer at all of the football games. When I got into high school, I went out for individual and large group speech. I was the first person with a communication device in speech group. That started my public speaking gigs; I started to give my speech to colleges, speech pathologist conferences, and schools around Iowa and Minnesota.

Some people say that parents will not talk about their kids’ grades and milestones.  Umm, what? I hope my parents talk about my grades and milestones because I didn’t work my butt off for nothing. At the age of 3, my parents sent me to preschool. After 6 months of going to school,  my preschool teacher told my parents, “This girl has something in her head, and it’s called brains!” Her room was for children with disabilities, mostly intellectual disabilities. And there was me, the only one with a physical disability.

My preschool teacher taught me how to read when I was 3. Many 3-year-olds would want to read with pictures — but not me. I would get so mad if they showed me a picture and not the actual word. I thought people would think that I couldn’t read if I used pictures. So Mrs. Crawford got it, and she taught me real words. While the other children played and did other things, I was on the computer, and I played a game with animals that taught me how to read and spell. Weird as it sounds, my reading skills came from a giraffe and a mouse.

Then when I was 6, I got placed into a “regular” kindergarten class. Who would have thought that a little tyke like me would be in a regular class? Obviously my parents and my preschool teacher, and I didn’t see that I was any different than other kids my age. From that point forward, I was mainstreamed into regular classrooms.

Another thing that annoys me is when people say that disabled children don’t get to play with their brothers or sisters. If you have a brother like mine, you don’t get away with just sitting and doing nothing. We had an exercise mat, and he set me up on my hands and knees. He put a football a few feet away from me, and he would go on the football. “Hut hut,” he’d yell, then I dove as hard as I could to get the ball before he could get it. He dragged me outside to play in the sandbox; he always treated me like a brother should treat a sister.

Also some people say disabled people “can get away with a lot” or “they can slack off  because they are disabled.” Truth is, I wouldn’t stand for doing absolutely nothing and my parents wouldn’t let me slack off. I would go to school, after physical therapy or occupational therapy or speech therapy (it depends on the day), then practice for sports/speech/school activities. Then finally at 6 p.m. when I got home, I’d do my homework until 10:30 p.m., then get to bed  because tomorrow, I’d get to do it again. Truthfully, this is what mine and many other young people with disabilities’ lives consist of. If you get the lucky end of the straw and don’t get too much homework or your therapy gets cancelled, you get to do anything what you want, but it only happens once in a blue moon.

Sometimes I just want people to see me how my family sees me, and how I see myself. But then I’m kind of glad they don’t, because it makes me appreciate my family and friends more. And when I meet my future husband, I will appreciate him too!

People with disabilities, like any other person, have to beat the odds that aren’t in their favor every single day. Yes, it gets tiring and some days, giving up sounds good. But we have to stay strong for our parents, siblings, and for ourselves. To stop people from looking down on us, we have to believe in ourselves. We have to deal with people that talk baby talk to us and make ignorant comments.

People with disabilities can have a normal life like everyone has. We have similar experiences like going out for sports or playing with our brothers or sisters. We have goals like everybody does. I want to be the first speech pathologist with a communication device, and I want to open my own clinic. Trust me, it isn’t easy. Like everyone else, people with disabilities have to work our butts off to get what we want! We might get laughed at or be told we can’t do it, but we are strong enough to break down the barriers we’re up against.

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Thinkstock image by James Quigley.

 

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What Cerebral Palsy Has Been to Me

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How do you define the relationship you have with your condition? My cerebral palsy has been many things over the years. It’s been a cruel brother, a tricky ally, an overactive advocate, and that clingy friend you don’t want at parties because for some reason he gets weird when there are lots of people around. On rare occasions, once in a blue moon really, he can be the wisest of teachers, even if learning my lesson means losing a scuffle with a pair of pants. They were “Lucky” Brand, of course.

I’ll begin with a bit of backstory. Due to my spastic diplegia, and due (at least in part) to a considerable effort by western medicine to dissuade me from intense exercise, I sort of “bounced” in and out of a wheelchair throughout my younger years. When college came around, I thought I’d use my status as a feisty 18-year old to refuse wheelchair assistance. I managed pretty well ignoring doctors’ orders at first. I even went as far as majoring in exercise sports science. Things were going awesome until one fateful Sunday.

It was my grandmother’s funeral, I’d just been 86’d (dumped, for the laymen), and I got “Sonny Liston’ed” by the Muhammad Ali of blue jeans. Here’s the slightly longer version of that last bit: I was wrestling the garment over my KAFO brace keeping my left leg stable, and somehow, rough fabric got caught on the stainless-steel-hinged knee joint. Out of frustration, I yanked up as hard as I could, straightening my left leg on the same motion. In a snap, the jeans broke free. I heard an odd crackle, followed by the kind of pop that makes your stomach turn. So much for a balanced breakfast.

My eyes closed in fierce defiance of the pain. My body knew I should not bear witness to the wreckage that was once my fragile kneecap. There were no words to describe how dislocated it had become. The worst hurt, however, came from an incredibly selfish thought creeping up right after the incident. It was my grandmother’s funeral, and all I could think was: what will my family say now that I’m stuck sitting down all over again?

Despite the trauma that I went through, and the typical heaviness that leans over a funeral, I felt a sense of joyful release in the air. Maybe it was getting to see my family again. Maybe I felt my grandmother was free. Maybe it was all the Percocet. Either way, I couldn’t help but think things were going to be OK. I know you’re supposed to be sad at funerals, but that day I honestly felt like my own mortality was smiling at me. I decided if I ever wanted to stand up again, I’d have to start by looking in that direction, even if life wasn’t all it was cracked up to be.

Several months later, despite a wonderful surgeon, great medical care and lots of rehab, doctors weren’t sure whether I’d find my feet on the ground again. I stayed positive despite their concern. I needed to stay positive. I was about to go to my cousin’s wedding after all. Nobody likes a sad sap at weddings, unless we’re talking tears of joy.

I managed to stay joyful and roll with the circumstances all the way up to the reception. Then my heart fell apart at the sight of the dance floor. I had forgotten how much I loved to dance. I’m terrible at it, but you can be terrible at something and love it. Just ask William Hung from “American Idol.”

In that moment, I heard the voice of a motivational mentor named Sean Stephenson pop up in my head. “Picture the worst case scenario and watch it play out,” he said.
So I began. I pictured rolling onto the dance floor and running over the new bride. She then falls into the groom. The groom flies right into one of the caterers who knocks the cake up in the air. Finally, the cake soars into the DJ who now looks like a very disturbed version of Snow White. Among the chaos I took note of something interesting. My whole family, especially Anna and Jacob (the bride and groom), was laughing hysterically. I thought, if this is the worst-case scenario, then I’m about to have one hell of a time. Sure enough the fear fell away, and I rolled onto the dance floor. Luckily no one got run over, and I wound up having a blast.

The day I came back from the wedding, the side effects of the rehabilitation began to show. My leg grew stronger and my knee more comfortable. With a little ingenuity and a lot of miracle, I rose to the occasion and found my feet once again. Call it coincidence. Call it a medical triumph if you must, but I might like to call it a graduation gift. You see, I don’t believe I was meant to rise until I learned that true love must rise first, for others and for yourself — above condition, above ego, even beyond the physical world. I could not stand as a man until I learned how to sit as one, because value comes from the love you give and the love you witness. My cerebral palsy had schooled me and I came out the other side a better human being.

It’s so easy to notice the gift of momentum that we often miss the gift of slowing down. Humility is a kind of tough lover that can get buried beneath the mediocrity of an ordinary life, but luckily, CP makes having a mediocre life impossible for me. I’m grateful my own humility could teach me a valuable lesson thanks to life gone by, true love, family, and an angry pair of pants.

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