Morgan.

To the Lady Who Assumed I Was Comfortable With My Disability

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To the lady who assumed I was comfortable with having cerebral palsy and content in my own skin, I have this to say…

Living with my disability has given me a lot of ups and downs. Some days I am confident, other days I am angry, and then there are the days where I just cry, asking God “why me?” I haven’t quite mastered what it means to be a person with a physical disability, and I believe I never will because I am constantly discovering new things about myself. But what I can say for sure is that at some point, whether they have a disability or not, just about everyone has struggled with being comfortable in their own skin.

My willingness to open up about this came about after attending a conference focused on people with disabilities and employment, where I was honored to sit on the panel and discuss my experience. Afterward, I attended a tour of the facility where the conference took place. While waiting for the tour to start, I found myself in a conversation about people with disabilities being comfortable in our skin. A lady then proceeded to say to me, “I know you’re comfortable in your skin,” to which I replied, “Sometimes I am not.”

She seemed a bit taken aback by my response. It was as if she assumed I would be comfortable having my disability. She just looked at me with bright eyes and smiled, and then told me she has a daughter who has cerebral palsy.

I am slowly beginning to believe God created me this way for a reason, and it has taken me some time to become comfortable in my skin. If I am being honest, I’m not completely there. I have goals, dreams, and fears. My fears tend to surface a lot more than my goals or dreams. Like the fear of meeting new people, whether it be platonic or dating, and having to feel as if I should explain my disability each time. Or if I’m traveling, having to make sure the facility is wheelchair accessible. Or explaining to my 7 and 9-year-old cousins why sometimes people may stare at me and that they shouldn’t feel upset or sad about it. And I struggle with the fear of feeling vulnerable, sharing a part of myself for all to read and provide their opinions if they choose to do so — like I am doing now.

It takes time to get to a place of peace and understanding, of knowing that having a disability isn’t the end of the world. It just means you have to do things a bit differently. One of the things I’ve noticed recently that I haven’t seen in past years is that more people with disabilities are sharing their stories and getting out to see all that the world has to offer. There’s no longer as much of a disconnect, or feeling of not being accepted or having things accessible. Granted, nothing is perfect and we still have a ways to go, but I see progress being made.

So to the lady who assumed I was comfortable in my own skin, comfortable with having a disability, I say thank you — because you helped me to openly face something I have had difficulty with expressing out loud.

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The Warrior Who Defends Me in My Life With Cerebral Palsy

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I am 41 years old and I have moderate spastic diplegia cerebral palsy. Today, I want to raise awareness for all disabilities. I believe that awareness of all disabilities needs to be brought to today’s society. Let’s talk!

My story begins in 1976 as an adopted child whose parents were unfamiliar with my diagnosis of CP at 11 months old.  Think about hearing the words, “Your daughter will never walk and will most likely be ‘confined to a wheelchair’ her entire life.” That was a harsh reality for my parents.  Sadly, there were family members who told my parents to give me back to the adoption agency and get a “normal” child.

My parents couldn’t possibly have been be prepared for the struggles that lay ahead. There were multiple surgeries, countless physical and occupational therapy sessions, and constant doctor appointments. Additionally, there were the costly schools and equipment I needed to maneuver through my challenges. I distinctly remember those years of tears and being pulled in a red wagon in the halls of the most prestigious children’s hospitals because I couldn’t walk. I definitely know my parents weren’t expecting this, but they persevered with love, compassion and determination!

Through their advocacy, they did everything they could to ensure that I had the best life possible. I am eternally grateful for them and everything they have done for me. Some of my most prominent memories were of my Dad and his ongoing support. He was my warrior! He was always there to encourage me, challenge me, and defend me. I distinctly recall as a child all the cousins playing together. No one ever said, “Oh well, Richelle can’t do that!”  When needed, my dad stepped in and explained that they all needed to adapt so I could participate. I always knew I was different, but I don’t remember being left out of any activities because my dad, my warrior, ensured I was always included.

Inclusion can be rough and often seen as an insurmountable challenge. Activities, such a birthday parties and going to the park, can be stressful for the parents of a child with a disability. As children, we often aren’t aware of how much our parents protect us and make decisions on our behalf. It isn’t until we are adults that we can fully appreciate their sacrifices and selflessness.

As a preteen to a young adult I was bullied, ridiculed and shunned.  It hurt and made me realize my differences in a more grown-up way. I managed to work through it all because I had my trusted warrior by my side. I also feel that my “movie star” smile helped me through some of those rough moments. I truly believe every experience shaped me into the person I am today. Am I different? Yes, and I embrace my differences. I turned my fear into a self-motivation tool for success.

Do people judge me? Every day. Although it’s none of my business what others think of me. I live my truth. I am a daughter, a friend, an advocate, and even a warrior myself because that’s who my dad taught me to be. The words “Never give up,” “Keep fighting,” and “You’ll thank me when you’re older” continue to inspire me each day. Truthfully, all this time he was my warrior, and I was his. We are a fearless, strong, and determined team. Now is the time to embrace who we are and work as a united front. Together we are stronger. We are all warriors.

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What I Would Tell My Younger Self With Cerebral Palsy, by Age

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Having CP has been a lifelong journey. As I look back, there are so many experiences because of it that have shaped my young life. In hindsight, it’s easy to say, “If only I could go back in time and tell my younger self this!” or, “If only I knew then what I know now!” Having cerebral palsy has given me the opportunity to live and learn in so many ways and at every age. If I could give the younger Annie pieces of advice, here’s what I would tell her: 

Age 4: You rock that butterfly brace, girly!

Age 6: Trust your mom and dad. Even when you’re scared in the doctor’s office or are frustrated by physical therapy. They love you so much and they will always have your best interest at heart. Be brave, kiddo.

Age 8: When your classmates ask questions, just remember they are being curious. You are allowed to share as much or as little about your leg as you want. Be kind no matter what.

Age 10: Keep dancing. Keep playing softball. Keep doing what you love.  Always remember that putting your whole heart into what you do is so much more important than how fast you can run or how well you can tap your feet!

Age 12: Phys. Ed is so overrated.

Age 13: Not everyone you meet will understand your story. Adults and children alike will be critical and small-minded. You’re allowed to cry it out. Don’t ever forget that your ability and determination is beautiful. These are the years that are making your skin a little thicker and your heart a little stronger!

Age 16:  Please don’t be so hard on yourself! You spend so much time wondering if your best is good enough. Spoiler alert: It is. Enjoy every minute of your time in the theater and doing what you love. Your happiness on the stage overpowers your limp in the best possible way.

Age 17:  In a few years, you will look back and understand how much this time of your life has shaped the person you are. Cerebral palsy is such an important part of your heart and soul and is nothing to be ashamed of. Your story will take you to some beautiful places and your dreams will come true. Stay strong. And please don’t forget how loved you are.

Age 18: By now you can start to see how your body is affected by spasticity and aging. It’s new and it’s frustrating. One day at a time, Annie. And if that’s too much, take it one hour at a time. Or 10 minutes at a time. Be patient with your body and soul. You got this.
Age 20: So, you had an iced coffee at 9 p.m. so you could finish studying for that midterm… and now you can’t fall asleep. Hint: this may be a good time to stretch.
Age 21: Don’t fear the future. CP, career, life; it will all work out. 
 
Age 22 (and beyond): Wherever your life takes you, remember that little girl with the butterfly brace. The girl who ran hard on the softball field even when the rest of her team ran faster. Remember the self-conscious teenager who learned so much about herself on the high school stage. Remember being in your college dorm on the days when your leg hurt so much that you’d rather stay in bed but pushed through and kept studying. Do it all for her. Follow your dreams and make yourself proud.

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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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Thinkstock photo by Yayasya.

 

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