“Life is pain, highness. Anyone who says differently is selling something.” -William Goldman, “The Princess Bride”

Much of my life revolves around the concept of pain. As human beings, we all experience pain in our lives, whether physical or emotional. In this way, we are alike. There are those who stuff their pain, those who wear their pain like a badge, and those somewhere in between. I used to think I was someone who wore pain like a badge. And then I realized: I was born into pain. I had months of capillary blood draws, IVs and treatments as a premature infant. I know I experienced pain in my earliest moments. I had years of falls, injuries, therapies and muscle pain before I even knew how to express what pain was. In this way, we may be very different from each other.

I have pain every day, and hiding my response to it from those around me is my ultimate goal. But imagine for a moment if you had something that was a part of your entire existence and you could never talk about it for fear of looking like a hypochondriac or a Debbie Downer. Imagine you went to work every day and yet could never talk about work stuff to anyone. Ever. Imagine if you were dealing with regular work stuff and then things got intense at work, and still you could not talk about it. And then you realized that by sharing your life, even the bad stuff at work, allowed you to keep putting one foot in front of the other; showing up when everything inside you was saying, “Quit.” This is chronic pain for me.

I try to focus on the positive, which I believe is very important when living with a disability and chronic pain. That being said, some days (or weeks) I have to let it out. I have to share the reality of my life with people around me. Thankfully, I have had a huge amount of support from people around me. I have also had people in my life walk away because my pain was too much for them to handle. And to that I say, “it’s good to know your limits and maybe walking away was the best thing for both of us.”

I think positive thoughts only get us so far. I have probably done more “positive therapies” than you can even think of. If it’s out there, chances are I have done it. So please don’t ask me “Have you tried (technique, therapy, exercise, etc.)?” Because unlike you, I live with my disability every single solitary day, have thought about it far more than you have, and have seen more practitioners in the first four years of my life than you probably have in your entire existence.

As someone who cares about me, things you can do to support me are phone calls or texts (which may go unanswered and it doesn’t mean I don’t love you), responses to my social media posts that are validating and supportive, visiting or scheduling time to spend together, and letting me know that even though I may have to cancel or reschedule, you recognize it’s not about you. It’s because I am hurting so badly that this extrovert who loves parties and get-togethers has to decline because standing or sitting is impossible.

This brings me to another aspect of my disability: Falling and the Moro reflex. Having cerebral palsy (spastic diplegia) is not just about my legs not working exactly like yours. There is an aspect of CP that is hard-wired into the area of the brain that has been damaged. There is a reflex that newborns have called the “startle reflex,” known medically as the Moro reflex. In people with CP, that reflex never shuts off as it does in people without CP. So when I hear a loud noise, or get surprised by something, I jump figuratively through the roof. This reflex also contributes to a heightened level of anxietyall the time. This causes me to have anxiety when I am in large groups of people, or walking in public without a mobility aid (AKA something to let other people know I am not as stable as I look).

This fear of falling is very real and very anxiety-provoking. Between January 2015 and July 2017, I had a total of five falls. Amazingly enough, that number is down from my year of most falls, 2009, when I fell seven times in three weeks. So again, this girl who loves parties, people and being out in public may have to decline because the risk of falling is real.

One of the most difficult challenges for me is that I don’t feel “disabled.” I live in the grey area of “you don’t look disabled” and “I would have never known you have CP” as well as my personal favorite from a doctor, “You don’t have CP. You’re not disabled enough.” But I can’t do basic tasks without considering my pain level, such as cleaning house without killing my body, working a full shift at work, walking the dogs, or having sex with my spouse without thinking about how much of a toll it takes. Can I do this particular activity today or does it have to wait until I have a day off of work so I can spend the day in bed recovering? These are things people with disabilities and chronic pain think about every single day. When I hear, “You’re such an inspiration!” I throw up a little bit in my mouth. I feel it’s a more polite way of saying, “Wow, I’m glad I’m not you.”

The internet and social media have allowed us as a society to connect as never before. I have also learned through my experiences in real life as well through Internet research that there are virtually no medical studies on aging and cerebral palsy. Even support groups like United Cerebral Palsy and Cerebral Palsy Foundation tend to focus on kids with CP. Once you’re 21 or older it’s like you no longer exist. Google “cerebral palsy” and see what comes up. I bet it’s 99.9 percent articles on kids. And the “articles” on adults are mainly blog posts of other adults with CP searching for answers.

According to medical research, CP is not a progressive disorder. Meaning my brain damage will not change. But living in this body for 45 years has taught me that the effects of CP are progressive. Things that affect other non-CP aging individuals like arthritis and muscle atrophy tend to affect people with CP more rapidly and at an earlier age. They are also more difficult to deal with in a body with spasticity.

The falls I experienced caused me to have emergency spinal cord compression twice (at age 29 and age 35) and because of these spinal cord injuries, I have chronic problems with my nerve impulses, blood pressure and pulse, as well as pain, lack of motion in my neck and difficulties with my arms that were not there prior to surgery. That being said, give me pain over paralysis any day of the week. My point in sharing this is that sometimes the choice of someone who has a chronic disability is between rough or hellish. I’d pick rough, given those two options. But I’d much rather pick something other than rough or hellish, like cake-walk or rainbows and butterflies.

So, if you see me with my cane, and I’m out of the house, chances are I’m doing pretty OK. If you see me gripping my husband’s hand or arm, maybe it’s a rough moment. If you see me with my walker, know that I’m doing good just to be out of the house. If I’m apologetically cancelling on you at the last minute, know that I’m probably at home crying, wishing I could throw an impromptu party at my house because I hate having to cancel or not be around my friends just because my body is not cooperating. But chances are I’m thinking about how much I’ll be judged for my messy house that needs a new paint job, wallpaper torn out, new window coverings, a backyard that needs a total makeover, and four pets that have to greet every new visitor like they are their best friend. And throw in that I can’t do most of the fix-it things that you do without even thinking about it, so I don’t have many guests over to my house.

But those are my hang-ups and anxieties. We all have them. We all have things we wish we could change. In that way we are alike. People with disabilities are not unlike you. We all have things we wish we could change. We all have times when we’re feeling not 100 percent. But for those of us in the land of “grey disability,” where our disability seems invisible most of the time, we can struggle to figure out where to fit in, even at my age. And now, as I write this during a recovery process that I hope will be short-lived, I am hopeful my land of “grey disability” becomes less grey in the coming days.

This article originally appeared on Order Out of Chaos.

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In a world where having a “normal body” is a societal expectation, living with a physical disability can be a challenge. First impressions and quick judgments are often made based on appearances. As a person with cerebral palsy, I ask myself the following questions: What does the word “normal” really mean? If my body doesn’t meet these characteristics, then what am I?

My body doesn’t have straight lines; it’s curled. My feet seem impossible to lift up from the floor as people normally do when they walk. My mouth is always open, like the letter “U.” When I talk, I sound drunk, even though I’m not. To many people, I must have seemed alien, like someone from another planet. I used to hear people say I wasn’t a normal human being.

On different occasions I have gone out to eat with my family, and the waiters have handed out the menu to them, but not to me. They asked my parents what I would like to eat instead of asking me. It makes me feel like I’m an object on the table, a plate or a glass. Something that people can see but assume that this “object” can’t talk, can’t respond. In most cases, although it bothers me, I try to let go. After all, it’s not their fault; they are just responding to what is outside the norm created by society.

Body image plays a major role in terms of self-worth.  The way other people treat us has a powerful influence on how we see and feel about ourselves. Other people’s perceptions of us can affect us for the rest of our lives. It took me years to become aware of how influenced I was by the way I had been perceived by others and how I perceived myself.

Back in the Dominican Republic where I grew up, it was uncommon to see someone in the street with a physical disability. When I was standing outside in front of my house, some kids would stick out their tongue or try to imitate the way I walked. Even in my 20s, I was still carrying that burden inside. I never told anybody how I felt about my body and living with cerebral palsy.

It wasn’t until my early 30s when I was introduced to therapeutic writing that I became aware that I am more than a body. By using this method, I started expressing myself in a way I hadn’t before. When I first started to write about my past experiences, I was shocked to realize how much pain I was still carrying inside. At the same time, I was feeling relief because I was letting out all my pain. Therapeutic writing gave me confidence and brought forth my talent as a writer. My long years of silence came to an end.

Writing about my life has helped me to have a better understanding of who I am and to what extent living with a disability has affected me. Through writing, I learned it is OK to become connected to my emotions, even if they are causing me pain, and to let myself cry because they are part of my experience as a human being. For years, I was afraid of expressing how tough it can be to live with cerebral palsy, but I’m not afraid anymore.

Since practicing therapeutic writing has helped me to better cope with my condition, I decided to learn more about it.  The psychologist and researcher Dr. James W. Pennebaker has published several books and articles focusing on this subject. In his book “Writing to Heal,” which was published in 2004, Dr. Pennebaker points out important findings regarding expressive writing:

“Since the first expressive writing studies in the 1980s, dozens of similar experiments have been conducted. The first studies focused almost exclusively on physician visits for illness. As the number of studies increased, it become clear that writing was a far more powerful tool for healing than anyone had ever imagined. Only now, twenty years later, are we beginning to appreciate its impact.”

Thanks to the habit I developed by writing about my physical limitations and the challenges I face on a regular basis, I know from first-hand experience what a “powerful tool for healing” writing can be. Now I know what the word “normal” means. Normal means to be myself. Normal means I am a human being like anybody else who doesn’t have a physical limitation. Normal means I am able to breathe, love, live and laugh like everybody else.

Juana Ortiz’s book “I Made It” is available at www.juanamortiz.com and on Amazon.  

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Sometimes you just can’t sit around, complain and do nothing. So when a fellow mom of a child with a disability enlisted our help to share our story and what Medicaid cuts and caps will (are) doing to our family, I answered the call. My husband Paul and I headed to a meeting to discuss this important topic with some of the aides at Senator Rob Portman’s office. We hope that sharing our journey will relay the importance of the support families like ours receive through Medicaid. We are not freeloaders or lazy, yet we rely on the aid of public funding to keep our family together. I am not ashamed of it, either, because our family deserves proper care and the ability to enjoy life like other families.

This is the letter I will leave behind…

Dear Senator Portman,

My name is Andrea Rozzi-Gautraud and I am mother to four children (ages 11, 10, 7 and almost 6).  Our youngest child, Paul, sustained a severe brain injury around the time of birth due to an interruption of blood flow to his brain occurring from an unknown problem with his placenta. Paul defied the odds when the doctors told us that his condition was not compatible with life, and he continues his fight to this day. He has many conditions due to his brain injury. Paul has severe cerebral palsy, is non-verbal, visually impaired, has a sensory processing disorder, problems with sleeping, requires a feeding tube, has a seizure disorder and many other diagnoses. He depends on others for every single bit of his care. He also struggles with irritability and anxiety when going to unfamiliar places, which makes going out both physically and mentally stressful.

My husband’s job as a pilot leaves my alone with all four children 18 days and nights per month. Paul receives Private Duty Nursing through our private insurance and when that runs out, Medicaid was picking up the remaining. This allows me to work a part-time job to help make ends meet and my other three children to participate in some “typical activities” while knowing my son has proper care. However, Medicaid has recently notified us that they no longer will cover his nursing care, even though Warren County and all his doctors and specialists have recommended they continue the care.

The state’s denial of Paul’s doctors and Warren County’s request to continue Paul’s private duty nursing has created an immense amount of stress on our family.  It feels like I am drowning and the State of Ohio just handed me a cinderblock.  This devastating situation leaves our family utterly terrified of where Medicaid cuts will leave us in the future.

I fear that not providing support to hard-working, struggling families will force loving and devoted parents to put their children in nursing homes or give up custody. As these children grow, I am learning firsthand that life often becomes more complicated and additional help is required, not cuts and caps. Outcomes of people who can age in place with disabilities with proper medical supports are significantly greater than reverting to an institutional system.  Medicaid waivers also need more funding as waitlists tend to be significantly long.

I always say that the easy part is loving and accepting Paul as he is.  He is the light of our lives. What makes this life so incredibly difficult is the fight for the things he requires. Cuts mean you are penalizing people who cannot care for themselves and whose families are already working their hardest to provide everything they can for their family member with a disability.

I hope you remember our story and daily struggle when it comes time to put a healthcare bill together that will be good for all Americans. Paul and his family are counting on you.

Best Regards,

Andrea Rozzi-Gautraud

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What would I say to you, cerebral palsy?

As a child I didn’t really know you very well at first. You introduced yourself to me at 11 months old. I began to understand “dis”ability at age 2. You had me cut open, rearranged and refocused. Scars from surgeries began to signify my strength. Not everyone has battle scars from their groin to their ankles. Not everyone understands that your pain became my persistence.

Therapy became restorative and salubrious emotionally, spiritually and physically. I can’t walk? What is that you say? You were my friend yet my competition, my frenemy. I was determined to beat you, one footstep at a time. CP, why would I allow you to hold me back? After all, I am so much more than my diagnosis. You don’t really know me. Only I know me!

Million Dollar Legs, agreed. Legs wobbly and unbalanced had this inner strength I wouldn’t have known without your teachings. Braces, you became my battle. Wheelchair, you became my warrior. Casts, you became my cause. Crutches, you became my cruise control. Cane, you became my comfort. Walker, you became my wisdom. I learned I had to do things differently, and that was OK. Imagine a world in which we were all the same?

I’m me. Proud of my differences, because without my struggles I wouldn’t have found my strength. It’s there. These legs signify my spirit. These arms signify my artillery. They pick me up when I fall. This heart, it signifies love. An open, honest perception that different is beautiful and love is just that. Love! Open, honest, true and without judgment.

As cliche as it may sound, I thank you, CP because without you I wouldn’t be me! I am who I am because of you. Would I change me? No! Only what others see. My platform and purpose is you. I want others to know you like I do. Knowledge, acceptance and understanding. We’re going to change the world, this CP and me.

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As summer begins to come to an end and students began to prepare for a new school year, I would like to remind others of how important it is to teach children about disabilities, about differences. I hope by sharing some of my personal story, people will realize how important this is.

I was born with cerebral palsy, low tone, and ataxia due to lack of oxygen at birth. I was the first child to ever enter my elementary school with a physical disability. The school worked hard to adapt things to meet my unique needs while I was a student there. When I first started school, I didn’t really see myself as different from my classmates. In kindergarten and first grade, I would try my best to do everything other children would do, with a little help from my one-on-one aide. A lot of my classmates liked playing with me and also helping me​.

It was shortly after my 8th birthday party in the 2nd grade when I noticed how different I was. A little girl I thought was my friend wouldn’t let me play with her anymore because I was different, because I had a disability she couldn’t understand. She began to see my disability as a disease, believing she could catch it.  She became my first bully. Unfortunately, more of my classmates began following her lead. Because of one child’s thoughts, suddenly my disability became contagious in other children’s eyes. I was bullied verbally and physically. Some of my classmates even treated and talked to me like a baby.

Some of my classmates asked my teachers if I knew how to read, if I could learn like them, if I got the same kind of homework they got. My teachers would answer their questions and tell my classmates I was just as smart as them.​ I was often excluded from a social life throughout my elementary and middle school years. Through the bullying and misunderstanding I eventually developed self-acceptance issues, anxiety, and even had panic attacks while at school.

When I entered high school, an amazing group of older girls befriended me. Because of them I began to really love life and bring more of my personality out. These girls invited me to birthday parties, holiday parties, shopping, sleepovers, homecoming and just to hang out — things I rarely got to do in elementary and middle school.​ It was the one time I really felt a sense of belonging. The only time I felt complete understanding and acceptance from my peers.

Unfortunately, the summer after freshman year my family had to move states from Colorado to Alabama due to my dad’s job. At my new school I tried hard to make friends. None of these kids knew me. They didn’t grow up with me. They didn’t know how to react towards me. The first two years at my new school, I lost myself again, facing misunderstanding once again. History was repeating itself. I wanted to be a “normal” teenage girl and live a full teenage life, but because so many only saw the shell I was stuck in, I didn’t get that opportunity.

At age 16 I began sharing my life with the world through YouTube videos. After a year students at my school began to find my videos. Little by little, kids at school began talking to me. Through my videos I was able to educate my peers, which led to them to begin to understand. Awareness leads to understanding, which leads to acceptance.

I often wondered how different my childhood would have been if other children were taught about disabilities. I got that answer the last year of my schooling. I entered drama class at school during my senior year, a class I was highly nervous about. After the first day of my drama class my teacher, Mrs. Davis, talked to me privately and asked what I was nervous about. I told her I was nervous about how my classmates were going to react to my disability and my speech problems.

No other teacher had ever asked me that question. She then told me about her daughter. Her daughter has health issues, but she knows her daughter is just like any other little girl inside.

The next day my teacher took time during class to explain my disability to my classmates. This made a huge difference! This was the first time throughout my whole school life that a teacher did this. I walked into the classroom and right away I felt welcomed by my classmates. I felt like my classmates saw me before my disability. I didn’t get those weird stares or comments. Instead I received smiles and acceptance. My drama class became my favorite class, and I enjoyed performing!

Please take a few minutes to explain disabilities and differences to your child, or your students. By doing this, you can make a huge difference in another child’s life.

After all we are all different in some way. We are all beautifully and uniquely made!

Tips on how to explain a disability to a child:

– Explain that people with disabilities are like everyone else, but they might do things differently, in their own unique ways.

– Try to make it easier for children to understand by explaining the challenges people with disabilities may face in a way everyone can relate to. Just as someone needs to wear glasses to help them see, someone with a disability needs a walker to help them walk.

-Encourage children to include kids with disabilities in their activities.

– Explain that disabilities are not contagious.

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Waking up on the first day of college at the end of January last year, my stomach was a complete ball of butterflies. I was rushing around my room pulling clothes out to put on, putting on makeup and getting my shoes. I had spent the past week getting my books and buying school supplies. The night before, I spent the evening putting binders, notebooks and textbooks in my backpack. I assembled my pencil case. The last thing I grabbed was my computer. I was ready… I thought.

I got to school and saw it was minimally paved from the snow storm a few days earlier. Knowing my balance was already altered by my heavy backpack, I took a deep breath and carefully took off for my first class of the day. I went to class, began to put my things away and realized that I could no longer get my tight left arm into the backpack strap. I didn’t have time to let my arm go in slowly. I had to meet with my professor about accommodations for the semester.

The rest of the day was filled with navigating the campus, my second class and meetings, all while lugging my 25-pound backpack on one shoulder. At the end of the day, my back and knees were killing me. Only the right side of my body had been supporting my backpack, while all the rest of my muscles had been trying to make sure I could walk without falling. Finally, I was home and could recover for the next day.

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