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Thanks to You, Cerebral Palsy

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Dear Cerebral Palsy,

Although you are and have always been a part of me, I’ve worked hard to make certain I don’t allow you to consume my life. If I am honest, it has been a rather difficult process. Let’s start from the beginning, though.

In the beginning, I was not sure what to think of you. I did not know where this journey with a disability would take me. I would not describe this feeling as distaste, but more of an uncertain path. I did not come to expect what I would learn about this world, even in my very first years. People can be cruel. I do not know the reasoning for this. Maybe people just do not understand what they cannot imagine dealing with.

Whatever the reason, I can say that my first taste of discrimination at the age of 7 would leave me frozen with fear and with an unfortunate understanding that this would not be an easy journey. I was first introduced to the pain this would inflict when my teacher referred to me as “an old lady” and constantly poked fun at my wheelchair in front of the entire class. I would leave school embarrassed and crying because I was absolutely and utterly humiliated.

My parents attended conference after conference with this woman to absolve my hurt. Unfortunately, nothing was done, even though my parents were extremely persistent. I am not going to say their efforts failed, but rather, it was an act of carelessness on the part of the school. If anything positive at all came from these instances, it would be that it prepared for me what was to come in terms of bullying and feeling like a burden to others.

It was far from over once I left elementary school. The bullying and teasing would continue into my high school years. The differences you presented me with were a big deal. To be completely honest, I can only chalk these feelings up to a lack of diversity training in and outside of the home.

You have caused me to feel emptiness and enter the darkest nooks of depression. I believe God knew what He was doing when He made me this way. I just didn’t understand and often asked myself why I was chosen to lead the rather challenging life of a disabled person. This left me feeling soulless and almost as if I was at the end of my rope. Nevertheless, the angel on my shoulder thankfully kept me headstrong and grounded.

My wonderful friends and family taught me that I was valued. It was through their never-ending encouragement that I came to terms with you. I decided I was going to live with you, and I was going to present myself with confidence and zeal. I was not going to let your involuntary movements and difficult challenges take over my life, no matter how hard you may try. I was going to no longer let the negative aspects of you consume my illuminated spirit!

I am happy to say that you have allowed me to carry this outgoing and positive attitude for many years. In fact, I am often commended for always smiling no matter what you are putting me through. I sometimes fake a smile because you can really push my buttons, but for the most part, I am an extremely happy and outgoing person.

Though, I cannot help but notice that our relationship has become rather “rocky” as of late. You are pushing me to my limits with chronic aches and pains. You make me scream and cry out of frustration. You wear me down with the spasticity. I know when you are angry with me because you sure do know how to put pressure on every muscle in my body! I want to fall over from exhaustion during the day, because you push me until I cannot take it anymore. You have caused me to rely on medicine to feel better as well. We visit the doctor’s office a lot more than we used to. However, also thanks to you, I no longer fear my general practitioner. In fact, I now love him because he gives me medicines to cope with your pain — so thank you for that.

Despite all of this, I love you. I love you because you make me who I am. I love you because you give me an individualistic and introspective view on life that I would not have otherwise. I love you because you give me an opportunity to teach people not only how to live with a challenge, but to do so confidently. You are a small gift in a huge and opportunistic world.

Love,

Karla
xoxo

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Living With Insecurities as a Person With Cerebral Palsy

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Even though I am 41 years old, I still have insecurities as far as having cerebral palsy.  I believe that from the moment you realize that you are different than others, you psychologically feel very different about yourself. Often no matter how much you do not want to feel insecure, the insecure feelings usually find an opportunity to climb inside your mind.

My type of cerebral palsy makes it very difficult for me to control my limbs with smooth, directed movements. What does that mean for real life? I have difficulty feeding myself with utensils, dressing myself, using the bathroom, writing without technology and many daily life activities we all do a million times per day. Needing assistance in these situations can leave someone feeling vulnerable and insecure.

This scenario might sound a bit surprising, but when I am in my wheelchair I can’t successfully feed myself. But when I am sitting on the floor, I can feed myself — for the most part, anyway. If it’s food I am able to stab with a fork, I have a weighted fork and can get the food. A weighted fork has weights inside so my arm has a harder time having a spasm and flying away with it. For food that I can’t use a fork to pick up, I simply bend over and pick it up with my tongue or mouth.

Eating by bending over and using my mouth gives me greater independence and freedom to eat at my own pace. Sometimes when you are being fed, you worry if you are eating too fast or in my case usually, too slow. You may feel self-conscious if you want to eat seconds or more of something. I do not know when or who, but I heard someone compare how I eat independently to a dog eating their food. From that moment, I would feel almost embarrassed to eat this way in front of people — especially when they do not know me very well. For example, when I have a new personal care attendant or my daughter has a friend sleepover are times I feel the most insecure.

Using the bathroom independently is usually not a group activity (unless you have toddlers, of course). However, when you have a disability that prevents you from using the bathroom on your own, insecurities can happen. If I could get one ability that I could do completely on my own, it would definitely be to use the bathroom on my own. I hate asking help to use the bathroom because I do not like inconveniencing anyone. I also do not like having to put off going to the bathroom because I am out somewhere, either with someone who can’t help me or the accessibility just is not practical. I cannot tell you enough how many times I have been in physical discomfort or pain because of not being able to go to the bathroom. Also, when you need help using the bathroom, you might need help with clean up or as a female, changing feminine products.  All of this can bring on all kinds of insecurities and embarrassment.

I wish I had the answers to how to overcome these insecure feelings, but I’m still working on that myself. I just try to accept being human and I have the right to eat and use the bathroom just like anyone else. Not using the bathroom can cause damage to the body, and that is a lot worse than asking for help.

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Why Fireworks Are Difficult as a Person With Cerebral Palsy

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Ordinarily, I forget. I forget about the fireworks. I forget about the sudden bursts of noise. I forget that the Independence Day festivities begin before July 4th and last for days after.

I forget about the effect unexpected sensory stimulation has on my jangled nervous system.

Every year in early July, I am jolted awake from my denial with a bang. A pop. A boom. I have cerebral palsy, and thanks to my idiosyncratic neurological wiring, I also have a sensitive startle reflex.

I flinch at unexpected, loud sounds. I jump. My body tenses. A seemingly unquellable surge of anxiety rushes through my heart.

It was just after midnight on the morning of July 4 when I heard the earsplitting, telltale sound of celebration. A burst of noise so loud, it seemed to shake every fiber of my being. Immediately, reflexively, my left leg tensed and jumped. A stabbing, piercing pain gripped my heart, and my breathing felt shallow. The music I had been listening to seemed to fade out, growing increasingly distant as it became overtaken by my frazzled nerves. I willed myself to relax, but I felt perpetually tense.

In that moment, my mind flashed to the millions of Americans sleeping soundly, dreaming in red, white, and blue of sunny beach days, backyard barbecues, Pinterest-worthy parties, and the very fireworks that rocked me to my core. In that moment, as I lay awake fighting to stave off my anxiety while the majority of the country waited in gleeful anticipation for the highlight of Independence Day — the fireworks — I felt completely alone.

But I am not alone.

The startle reflex (also termed “Moro reflex”), an involuntary physical response to unexpected sensory stimuli, is exceedingly common in children and adults with cerebral palsy. Although the Moro reflex typically lasts from birth to 3 to 6 months of age, this response generally remains into adulthood for those with cerebral palsy, due to the neurological differences present in those who live with the condition.  The stimuli that can evoke this response include loud or unexpected sounds and abrupt environmental changes — making unexpected fireworks a prime trigger for the startle reflex in those who are living with cerebral palsy.

Nearly 800,000 Americans live with symptoms of cerebral palsy. Nearly 800,000 Americans may grapple with jumpiness and muscle tension at annual firework displays. Nearly 800,000 Americans may struggle to relax after fireworks are unexpectedly launched in their neighborhoods, not solely on the 4th of July, but for days prior and days following.

So today, I remember. Today, I remember that many Americans struggle with loud firework displays and hissing sparklers. Today, I remember those who are jolted awake by late-night festivities, trying to quell the sudden tension, the jumpy muscles, and the sharp onslaught of anxiety brought on by the startle reflex. Today, I remember that I am not alone.

Today, I hope you remember, too. I hope you remember to show respect, care and empathy for your family, friends and neighbors who may be grappling with the extra sensory stimulation the month of July brings. And if you struggle with the startle reflex, I hope you remember that you are not alone.

I am not alone.

You are not alone.

We will conquer this month together.

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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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4 Tips on How to Talk to My Son With a Speech Difference

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My adult son has cerebral palsy and various other disabilities, including a visual impairment. He also has his MSW and a job as community organizer with the Independent Living Resource Center in Santa Barbara. When people first meet him they are often disquieted because his eyes jerk around (nystagmus) and his speech can be hard to understand. Some people can’t get past his speech and his not making eye contact and assume he is cognitively impaired. They often ask him questions about his “day program” or who is with him. Obviously, this does not make it easy for him to get to know people.

When you have a conversation with Jacob, you have be totally present. For example, I could not have a conversation with him while washing dishes or watching television. You have to pay close attention to be able to understand him. Curiously, second language speakers often understand him better than native English speakers. I wonder if it is because second language speakers pay more attention to understand someone speaking English when it is not their first language. You have to really want to be able to communicate with Jacob in order for it to happen.

You do not have to talk extra loudly or more slowly, or use shorter words or use greater emphasis when you speak to him. His hearing is quite good, and his comprehension and processing are often better than most. There is no reason for you to change your speech, you need to just listen more carefully than usual.

Jacob knows he has cerebral palsy and his speech is often difficult to understand. If you explain you are having a hard time understanding him, he will not clutch at his heart and fall over in shock. You will not be giving him bad news about his speech. He already knows this. He has lived with it since he started to talk. He accepts it as part of him and is not embarrassed about it. You will not be embarrassing him or yourself by bringing it up. What is not OK is nodding your head with a blank look on your face pretending you are understanding what he is saying. Equally unhelpful is “the deer in the headlights” face that says, “I don’t understand and am totally freaked out.”

He, like the rest of us, wants to be understood. The point of communicating is that your ideas are received by the person you are communicating with and you receive theirs. When you fake understanding by nodding and saying, “uh huh” when you don’t understand, you are not having a conversation with him. How can you discuss stuff if you can’t understand what he is saying?

The following are some tips to help facilitate some real communication with a person who speaks differently: 

1.     Pay attention.

You have to direct all your attention to make this communication work. Concentrate and try to ignore all potential outside distractions.

2.     Only nod your head and say “uh huh” when you really and truly understand what has been said.

Generally, nodding one’s head and saying “uh huh” indicates understanding of what has been said. It clues the speaker to the fact that you are understanding them or in agreement. If you keep doing this when you really don’t understand what is going on, it is misleading to the speaker who thinks he has been understood. If at the end it is revealed that you understood virtually none of what he said, the speaker feels betrayed. He assumed you were following his ideas and suddenly realizes you didn’t get it at all.

3.     Interrupt and ask for clarification when necessary.

If you lose the thread of the conversation or don’t understand something, it’s OK to interrupt and ask for clarification. With my son, I usually say “Stop.” Since you did not give birth to him, you may want to use something a little less authoritarian. “Just a minute” or “Hang on a second” will do. “I’m afraid I lost you” is a bit more formal. Whatever feels comfortable to you is best.

4.     Be specific about where you stopped understanding so there is no need to start at the beginning all over again.

You can say, “I understood up to the part where you said, ‘It was an amazing…’ I didn’t get anything after that.” Or you can say, “I lost you after the part about winning the game. Can you please go back to that and let me try again?”

It is possible that to someone else this might have been intelligible, but I didn’t understand. I am asking him to please repeat so I can understand what he said. I have traveled in many countries where I did not speak the language. I was generally able to communicate one way or another with people who wanted to communicate with me. All parties involved need to want to exchange ideas or obtain information in order for it to be successful. Both sides have to be willing to put some effort into communicating.

I think Jacob and many other people with speech differences or accents have a lot to offer, and they are prepared to work hard to be understood. Those of us who are “listeners” need to be willing to make an equal effort.

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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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