Emerging From the Shadows of Concealing My Disability

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I have spent much of my life in the shadows, harboring a secret.  A secret that twists through my mind and grips my heart, wrestling away any desire to reveal it. I have mild, barely-perceptible cerebral palsy.

I stand in a penumbra — the gray, blurred fringe of a shadow — on the cusp of light and darkness, black and white.  I teeter on the brink of able-bodied, rendering me virtually invisible — both to the disability community and to the predominantly able-bodied world in which I live. I feel a sense of safety in the shadows and a sense of privilege in “passing” as able-bodied, but the challenges I face in feigning physical ability — though largely invisible — are undeniable.

I traverse the streets of my former college town in heels — seemingly a hallmark of able-bodied womanhood — willing my body to obey my brain. I simultaneously scan the
pavement for cracks and ruptures and attempt to maintain conversation with a friend. My attention is divided between speaking and avoiding a fall onto the concrete.  I gaze up at the passers-by on occasion, wondering if anyone can see my slightly lilting gait. No one appears to notice.

I wearily trudge into a vintage clothing boutique. My leg is stiff, trembling in the wake of exhaustion. I feel as though I will collapse, but I continue to smile.

I ache to disclose my physical challenges, but I refrain.  I want the day to remain cheerful and lighthearted, and I do not want my friend to worry about my medical condition — an intrinsic facet of my life. For a fleeting instant, I appear to step outside of the shadows, but I remain in the penumbra.

I am lying in bed, a book spread open in front of me. I have a mile-long list of tasks to complete, and I intend to finish them all today, but I am distracted. A dull pain has begun to envelop my leg — the hollow ache of the winter months coursing through my muscles. Within a few minutes — seemingly out of the blue — the nature of the pain shifts.  It is sharp and penetrating, coursing relentlessly down the length of my leg. Above all else, though, I need to study. I glance down at my leg. I briefly stretch. I return to studying for the LSAT.  I do not speak of the pain. No one suspects anything is amiss.

I remain unseen by choice — by omission. As a woman with a disability living in a predominantly able-bodied world, I am reluctant to open up about the pain wracking my body because I fear being treated as perpetually fragile. Consequently, I strive to present myself as intelligent, driven and capable rather than highlighting my physical challenges, but in doing so, I step further into the gray haze of the penumbra.

I constantly find myself supplying proof. Proof of my physical ability. Proof of my disability. To many — including those who have disabilities — I do not appear to be disabled, as evidenced by the surprise written on the faces of others on the rare occasion I choose to disclose my cerebral palsy. When I find myself surrounded by my able-bodied peers, however, I wonder if I am able-bodied enough to conceal myself among them. I know I am privileged to be able to choose to conceal or reveal my medical condition — many people with physical disabilities do not have this option — but the constant need to prove I am both disabled and physically able contributes to the anxiety I feel and the perfectionistic tendencies I exhibit.

I dance along the blurred lines of the penumbra. I can nearly touch the light at the edge of the shadows — the sheer radiance of understanding how I fit into a society that constantly expects me to both prove my identity as a woman with a disability and conceal my cerebral palsy so I can fit the mold of an able-bodied woman. The warmth from the light is palpable, tingling against my skin. Light grazes my slender silhouette, but I am still living my life in shadow — in hiding.

I take a deep breath. My mind is racing. I wonder if disclosing my disability will fundamentally alter the dynamics of my friendships. I am terrified of change, wishing that in a few moments, I will continue to feel the same ease around my friend that I have felt for years. I allow myself to exhale as I look into my friend’s eyes. “I have cerebral palsy,” I say gingerly.

In that moment, we speak as freely and openly about disability as we do about any other topic. Disability is no longer taboo, no longer something to fear, but rather, an identity to embrace. Our conversation shifts. We spend the next hour talking about anything and everything, and I know nothing has changed between us.  However, I know I will be changed forever.

At long last, I step out of the shadows. I am doused in light, bathing in warmth — the blurry penumbra I once inhabited merely a memory from a former life. I feel free of the heavy weight that has gripped my heart for years — free to be fearlessly, unapologetically myself.  I feel wholeheartedly accepted and loved. I no longer feel that I have to conform to society’s narrow conceptualizations of what it means to appear “able-bodied” or “disabled.” Most importantly, I feel proud of my identity as a woman with a disability. By disclosing my medical condition, I have finally found the courage to embrace myself.

I have cerebral palsy, and I refuse to live my life in the shadows.

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Image via Thinkstock.

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The Days When It Feels Like My Treatment Isn't Working

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Clench your fingers into a claw-like shape. Feel that tension? That’s how cerebral palsy makes my leg muscles feel. On the hardest days, no amount of stretching seems to relieve the amount of tension in my body. Quite honestly, these are the days when stretching causes more discomfort than help. I often imagine my leg muscles like pieces of taffy. No matter how much I pull, they are still getting stuck.

Throughout the CP community, Botox injections are one of the most well known treatments for muscle spasticity. Yup, the same Botox that the rich and famous use to combat wrinkles can be therapeutic in patients with CP. Basically, the toxin is injected directly into affected muscles and acts an “Off” switch. When it binds to the neural receptors, my muscles don’t receive the signal from my brain to contract, thus relieving the tightness. While on Botox, I can achieve a more natural walking pattern. It is also frequently used in kids with CP, especially so they can get the most out of physical therapy sessions.

As a little girl, I had no clue what Botox did for me, but I knew that it meant I’d have to get a bunch of needles stuck in my legs. My stomach always used to hurt the night before, and my heart would race as we pulled into the parking lot. It felt like adults around me were trying to downplay the whole thing, but I always knew. Kids, especially those with medical needs are much more aware than the rest of the world often gives them credit for. After crying and screaming my lungs out through the procedure, there was always a consolation milkshake — which, years later, still remains a “Post Botox” tradition of mine!

Now at 22, I’ve adopted a mindset of, “If it works, I’ll do it.” Getting shots in your legs are as pleasant as it sounds, but I guess it could be worse. I’m just thankful there’s something I can do. Box breathing really keeps me calm and helps my mood on treatment day!

Even while Botox is in my system, there are still days when I can feel my leg muscles tightening. On these days, I’m sore, my frustrations are at a high, and my patience is beginning to wear thin. I’m usually in my room stretching as much as I can while trying to regain a healthy perspective on things. Being this mentally and physically exhausted reminds me of the importance of looking at the big picture. I’ve accepted that I’m allowed to have a rough day. Actually, the rough days bring me the best doses of insight. They are biggest reminders of where I’ve been with CP and what I’ve accomplished not despite it, but rather, because of it. I often think back to the little Annie I once was…

Who screamed while getting shots in her legs

Scraped her knees too many times

Cried through hamstring stretches

And often needed someone’s hand to hold…

But at the end of the day? It’s not like I loved my life any less.

It’s what I’ve learned from these experiences which help me love my life even more now. A reminder that maybe the tough days aren’t so tough after all.

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Cerebral Palsy Through a Teenager’s Eyes

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I wrote the following when I was 17 years old. I’m now 35 years old. 

I have this thing that is never going to give me a challenge the rest of my life. It’s called mild cerebral palsy (CP). When I was a little girl, I used to think, “Well, when I get older, it will get better.” It’s almost like I thought it was going to go away.

Just recently, I’ve realized it is never going to leave. I can pretend I don’t have it, and I can even ignore it. But it’s always going to be there, and every day there’s going to be a situation that reminds me of this special challenge I have to face.

This is not really a bad thing. I think my disability has made me a better person mentally and emotionally, but I just get frustrated when there’s a reminder of what makes me different than everyone else.

I would just love to get in the mind of someone when I meet them for the first time. Actually, I would like to know what people think of me as they are gradually getting to know me better. I’m sure their first impression is usually: “I wonder if she is slow?” or “I wonder what she can and can’t do?” or “Why is she talking funny?” Then as people get to know the real me, they wonder how and why I can lead the life of a normal person.

So many times I have been complimented on the work I do and the way I keep up with everyone else. When people say things like this, the first thing I say is, “Oh, thanks, I try.” Then for a little while I feel proud of myself.

After thinking about it more I wonder what the hell that person expects me to do — just sit there and watch other people live their lives? As a young person, I’ve decided I am too strong to let that happen. The truth is, I want more from myself than just winning the battle with my CP. I want to get good grades, be a good employee and have lots of people like me for who I am.

To answer some of these questions, I am not slow except when it comes to physics, and I “talk funny” because my muscles are weaker than yours in certain areas of my body. This means my muscles have to work extra hard to keep up with my daily routine. It mainly affects my right side and the muscles in my mouth.

I call my right hand “the dead hand” because whenever I try and make it work, the muscles tighten up and make things difficult. I limp because my entire right leg twists in. When I take my shoes off, you can notice that my right shoe is mainly worn on the right because it has adjusted to my foot twisting in.

Recently, I’ve been having problems using these muscles too much. It’s like my body is telling me that it’s overworked, but I don’t want to stop mentally, so my body will have to get used to it.

Most of the time at school, I feel like a normal person. Everyone knows my personality, and they’re able to treat me as an individual. The scary thing is that next year I will be starting this whole new life with new people who have to get to know me all over again. Right now, this is happening at work. My fellow employees aren’t mean to me. but they treat me differently than they treat each other. They all make jokes together and carry on conversations. Then there’s me, who they have to watch out for to make sure she doesn’t trip or drop the trash bag.

It’s just so hard for me to allow people to get to know the real me. This is probably because I have to trust them before I can let them do this. This is because I never know when someone is being nice to me, being sarcastic, because they feel they have to or because they really want to be my friend.

I’ve learned how to read people throughout the years, and I’m able to notice the really special people who are just able to forget about my CP. My friends are able to forget about my CP. The best thing they do is make me overachieve. Every time they complain about getting bad grades, it always makes me want to do better. The worst thing about them forgetting about my disability that pisses me off is there’s usually no comment. Then I feel bad because I feel like I’m complaining. But then I realize there are no comments because they don’t know what to say. What I’m feeling at that time is something they will never understand.

I think my cerebral palsy will have an impact on the choices I make for the rest of my life, the career I choose, who I have relationships with and how I raise my children. While writing this essay, I’ve learned my greatest weakness is my greatest advantage of all. I will never change who I am for anyone.

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Lead photo by Thinkstock Images

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My New Year's Resolution Ideas for People With Cerebral Palsy

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January is a new month and year, which makes a whole new start. Having cerebral palsy shouldn’t stop anyone from making New Year’s resolutions.  I like Christmastime, but I also always liked opening a brand new calendar to write down my New Year’s resolutions. I rarely complete all of them, but writing my goals down helps keep me on track. Having goals keeps you moving ahead and obtaining achievements. Big or small resolutions, it doesn’t matter as long as you make them and don’t give up when they start being difficult.
Here is a suggested list of New Year’s resolutions that might inspire you to make your own. Don’t ever be afraid to reach high for goals.  It doesn’t mean you have to complete all of them, but they can put you on the fast track to success.

Look back at the previous year and see what you can improve on or complete. Is there a bad relationship or unhealthy friendship you should end? A bad habit you are ready to drop? Maybe you have things you need to finish but you kept putting it off. Now is the time to tie up any loose ends so you can move on to a new beginning.

Not being able to walk or physically do something gives people the perfect excuse to not exercise.  I know because I’ve done it too, but as long as you can move at least one body part, you can exercise. Call your local gyms and YMCA to see if they have any exercise equipment you can use. Perhaps they can order it for you. Join an exercise class and do what you can. We all know having a disability doesn’t necessarily mean you can’t exercise. It means you need to adapt your routine to what your medical team recommends and your body can handle. Get reacquainted with physical, occupational, and speech therapies that will improve your life.  Therapy might be hard work, but it often pays off. No pain, no gain often applies to exercise and CP.

Get all your medical appointments scheduled and actually go to them. Having cerebral palsy can make going to the doctor feel exhausting. However, putting off serious tests can have very dangerous results.

What are your professional goals? Sometimes disabilities can make us forget we have value to contribute to society. Technology and the Internet has made career goals so much more obtainable. Ignore the fear and do whatever it is you love. Life is too short to waste.

Love more. When I say love more, I’m talking about loving others and yourself. Are you in a relationship that gives to you what you deserve? Are you giving to the relationship what they deserve? Thinking about others, making time and helping others are the ways to happiness.

Choose to pursue happiness. Getting wrapped up in self-pity and laziness can be just too easy to do. Happiness isn’t a gift from someone else. Happiness is a gift you give yourself every day. If you’re a miserable person, then you tend to attract miserable people into your life. However, if you choose to find joy in life, you’ll attract joyful people. Do things that make you feel happy. Let go of thinking everyone is out to get you. Look for the good in people instead of the bad. Drop drama and make the right choices so you avoid drama. Focus on the positive, smile and open your heart to love, forgiveness, and hard work.
I hope you have a pleasant, successful, friendly, and happy year.
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When I Realized I'm Lucky as a Person With a Disability

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It could have been worse. Over the past four years, this has become something of a mantra for me.

Bad mark on an assignment? It could have been worse, I’d tell myself.

Bad day on placement? It could have been worse.

Bad day at work? It could have been worse.

Bad day with cerebral palsy? Yes, it could have been worse.

My condition is mild, and for that I am extremely grateful. But I haven’t always thought this way. Even though I spent school in a state of deliberate, unwavering ignorance of my disability, the label of cerebral palsy nonetheless consumed me. School was a context in which I felt all my flaws seemed to be magnified a million times more, and the annoying little voice reminding me of my omnipresent label grew louder and more insistent in my mind.

Some days, I still grapple with that little voice, trying to suppress it, starting my internal monologue about how I can look beyond the label to the things I can do, instead of those with which I struggle. As true as that convenient little inner script is, the thing that has helped me silence that annoying little voice is perspective, garnered over time, as I’ve learned a little more, lived a little more and hopefully grown just a little bit wiser.

I think I gained the most insight when I started teaching. I realized my disability was not as debilitating as I had built it up to be. In fact, my life was not as awful as I thought it was. Instead, I realized just how lucky I am. I can talk, walk and don’t need physical assistance. I’m fortunate enough to have one tertiary degree under my belt, and to be starting another. I’m earning an income independently, and have a close network of family and friends.

Motivated by my newfound sense of gratitude and the drive to do something meaningful, tangible and effectual for others who might find themselves in a similar position, I discovered The Mighty. I realized that using this forum to share my story, experiences, hopes and ideas could act as my “call to arms” for those around me. An opportunity to do more than advocacy. A chance to educate, to empathize and to engender a new, more humanized view of myself and others like me to the rest of the world.

How lucky am I?

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My Challenges and Obstacles as a Young Woman With Cerebral Palsy

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Waking up in pain and needing help to get out bed is all too typical for me. When you are born with a disability, you’re bound to face some sort of obstacles in life. The best thing I learned over the years is to overcome all obstacles and to always be myself. Having this disability has affected my childhood, health, and even socially by dealing with prejudice. My disability has forced me to explore life in a different way.

On the other hand, I wouldn’t say it’s all bad and that I had a bad childhood. Being born with a disability is not the end of the world. It’s not like when I was born I had a choice anyway — I couldn’t tell the doctor “no cerebral palsy please.” However, I did have to learn to do things differently. For example, as a child in elementary school, every student in class were learning how to write their ABC’s, while I was learning how to type them on the computer. Being older now has helped me understand that although my childhood may have been different, it did provide me with many advantages.

After childhood came my teenage years, when I began to notice the health concerns involved with my disability. My first surgery was at the age of 3, and I had my tendons released in my legs. When I turned 8 I had a hip surgery and was in a body cast for six weeks. I can remember this surgery, because it happened two weeks before Halloween and I had the best costume in town. When trick-or-treaters came to the door I just laid in my body cast in a special wheelchair with my face painted as a zombie thinking, “Wow this is so cool.” Meanwhile, in the back of my head I thought to myself “I hope these surgeries help me one day be able to walk.” My mother has taken me to many doctors and specialists over the years, and while some gave us hope, others told us it is not medically possible. I believe I will always have health challenges in my life, however I also believe in miracles and blessings.

I try to stay positive and not think of all the judgment I have experienced throughout my life because I am in a wheelchair. Teens can be so mean when you appear to be different. I always feel like I have to prove myself, even though I can do most of the same things they do. For example, I am part of an organization called “The Plantation Dynamites” where people with any type of disability get to play sports. Basketball and baseball are my favorites. My mom takes videos of me playing, and I like to put the videos up on my Youtube channel, so I can show others that even though I am in a wheelchair, we are all the same. However, that doesn’t stop people from judging me when they see me out in public. Some people stare and even allow their kids to stare. It makes me feel sad, but at the same time, I like to talk to those people. Most of the time they are shocked that I can talk, let alone have a conversation. It just goes to show that you should never judge a book by its cover.

Anyone with a disability will likely have to face obstacles and challenges, no matter what. The key is to learn from those challenges and keep pushing forward. Through my experiences in my childhood, health, and being prejudged, I learned to overcome it all. I am older now and understand that my disability will have an impact on my life, however it will not stop me from being myself. Life is what you make of it!

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