Woman in a wheelchair outdoors.

I was suspended in mid-air, flying… until the back of my head hit the metal table, and the rest of my body crumpled to the floor. As I got up from the floor in the middle of the night, I realized my basiphobia (fear of falling) was increasing, but I had no choice – if I didn’t walk, I couldn’t live my life, right?

I was born with congenital cerebral palsy (CP), a disorder that limits mobility. I have always had physical limitations due to the right side of my body being weaker than my left. I am blessed to have incredibly supportive parents, who made sure that I had every advantage I could to become as independent as possible. Part of building this independence meant having regular physical, occupational and speech therapies while I was growing up. The good thing about CP is that it technically does not become worse as I age, but unfortunately there are other issues that can become a factor in adulthood. During graduate school, I noticed walking was more difficult for me than it had been as I was growing up. After several medical procedures, I ended up walking with a four-pronged cane, something I had never needed before.

Shortly after I graduated with my Master’s degree in Mental Health Counseling in December 2010, I married a wonderful man and we embarked on our new life together. I felt full of hope, with the normal newlywed ideals, while knowing that I was on my way to achieving my dream of becoming a Licensed Mental Health Counselor. But our first anniversary found me in the hospital, recovering from a shunt revision. A shunt is a device that sits in my skull and helps my brain drain its fluid down my spine correctly (due to my CP, my brain can’t do this on its own), which periodically needs to be replaced. I didn’t know it, but this was just the beginning of the role my disability would play in our relationship. At the time I was still walking with a cane, but it was becoming more and more difficult.

About a year after that, the night I hit the back of my head on a metal table (while attempting to go from our bed to the bathroom), I had what turned out to be a pivotal moment in my life. Shortly after this, it was discovered I had a spinal cord injury, at the very least exacerbated due to that fall, and I was told that if I fell again I could possibly face permanent paralysis. I had to use a wheelchair until surgery. I remember reading in bed, trying to not look at the chair next to the bed, but my gaze was always drawn back to it. I was terrified of what the chair represented to me: increased disability and loss of freedom.

In March of 2012, my spine was repaired, and everyone hoped that a major factor in my falls, called clonus (uncontrollable shaking of the hands and feet) would eventually dissipate as my spine healed and I resumed my quest to walk as independently as possible. Part of having CP is the issue of spasticity, or involuntary contracting and tension in my muscles, which I worked hard at controlling with my regular physical therapy appointments. A normal reaction to fear is having muscles tense up, in preparation to run away or fight the obstacle. But when I experienced this fear of falling, my CP actually added to the continued cycle – I would fall, which led to more feelings of fear, which caused my muscles to tense up, which was increased by the natural spasticity in my body, which could lead to more falls. I went through this period feeling as though an invisible monster was breathing on my neck, always waiting for my weakest moment to spring on me and shove me to the ground.

I don’t remember the date of the day I decided to alter my life permanently, but I do remember talking with my mom while tears coursed their way down my face. Through choked sobs I told her I was sick of trying to walk while always being afraid of plunging to the ground. I knew that she and many others had prayed for my full recovery, hoping I would achieve the independence I had held even a few years before this. But it was becoming more and more obvious to me that what was worse than my perceived loss of independence while being in a wheelchair was the sense of constant fear that at any moment I could fall and experience pain and possible traumatic injury.

I knew I was choosing what I believed was better for my physical and mental health, but it still held a faint stench of failure and the unknown. I had never had to explicitly face the question: what does it mean to be a person who ambulates by wheelchair? I can only answer that question by my continued experience, and say: I’m still finding out what it means. I literally look at the world differently – my line of sight is often level with small children’s, and it’s easy to “get lost” among shelves and racks in crowded department stores, because they are set higher than my head. I plan most activities with the preliminary question: how wheelchair accessible is it?

Unfortunately, even with the Americans with Disabilities Act, I’m discovering that accessibility actually runs on a continuum, from easily accessible to downright impassible. What I took for granted before all of this, such as being able to get up on a curb without aid or open a door for myself, has now become something I have to look out for and consider in almost every new activity. But while I am discovering some new limitations, I also know this choice I made has handed me wings, enabling me to fly to heights I hadn’t thought about before.

My empathy for people who have experienced traumatic pain in their lives has increased significantly. Considering that my chosen profession of being a licensed therapist in New York State is largely dependent upon my ability to empathize and work with people in difficult situations, this has been a priceless gift. While each person’s pain is unique to their experience and perception, we all share common emotions, and I know my history of physical and emotional pain has enabled me to come alongside others and be a listening ear and a possible resource for how to learn to stand tall in spite of (or because of) disabling pain and grief.

The choice I started to make years ago to use a wheelchair echoes in every area of my life. It has given me a role I never thought I could see the good in: because I am in a chair others may look at me differently, and I have the gift of deciding how I would like to respond at any given moment. If I am the only person with disabilities they interact with for that day, I want to make a positive impression, because of what I am able to give. I have found that sometimes the simplest of interactions, from eye contact and a smile to a passing greeting, can make a difference in others’ days and my own.

My basiphobia, the monster that lived with me for years, has not completely left my life, and maybe it never will. But while I know it is still there in the back of my consciousness, I have learned the secret of living life in spite of my fear. I see this most clearly when I embrace my parents, kiss my husband, or see the smiles of kids I work with every week. When I focus on the little things that make up my life, I am drawn away from what I can’t do to what I can. Had it not been for that night when I hit the back of my head as I fell, I may not have made the eventual decision to alter my life in such a significant way. I did not know it then, but that fall handed me a gift of seeing life from a new height and perspective. I would not have it any other way.

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Do you see me, or my disability? The reason I’m asking is because lately, I feel as if others are seeing my cerebral palsy before they actually see me. They see me walking with a slight limp, and are afraid to come up and speak to me. They don’t know my story but are already judging me before I even get a chance to tell it.

Yes, I have cerebral palsy. However just because I have CP, it doesn’t mean I can’t contribute something to society. To know me is to know I am so much more than my cerebral palsy, and CP will never stop me from doing what I want to do. It might take me longer to do certain things, but I will still do them. CP has tripled my endurance, stamina, and willpower. I would not wish for a life without CP, as it has been my greatest teacher. I do not want others to pity me because I have CP; rather I want them to look at my CP and see a man who even though faced with plenty of obstacles, never gave up.

The next time you see someone with a disability, I want you to try something revolutionary. Instead of staring at them and wondering why they walk or talk a certain way, go up to them and truly make an effort to get to know them. You might just be surprised at what you find out.

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It’s March, which means it is officially National Cerebral Palsy Awareness Month!  In honor of Cerebral Palsy Awareness Month, here are my top 15 things to know about cerebral palsy.

1. Cerebral palsy is a neurological disorder.

Cerebral palsy refers to a group of non-progressive disorders affecting movement, balance and posture. The condition stems from deformities in the developing brain or from brain damage sustained before birth, during birth, or within the first three years of life. In cerebral palsy, the signals from the brain to the body are lost or redirected, resulting in the difficulties with movement people with cerebral palsy face.

2. There are a variety of types of cerebral palsy.

Cerebral palsy manifests itself in a variety of ways. The three primary types of cerebral palsy are spastic cerebral palsy (characterized by muscle stiffness in at least one limb), athetoid cerebral palsy (characterized by involuntary movement) and ataxic cerebral palsy (characterized by difficulty with coordinated movement). However, cerebral palsy can also present itself as a mixture of these types.

Spastic cerebral palsy is further categorized by the limbs affected by cerebral palsy. Spastic cerebral palsy can primarily or exclusively affect the legs (spastic diplegia), one side of the body (spastic hemiplegia) or can affect all four limbs (spastic quadriplegia). In rare cases, spastic cerebral palsy can affect one limb (spastic monoplegia) or three limbs (spastic triplegia).

3. Cerebral palsy can be mild, moderate or severe.

Cerebral palsy has a wide range of severities. Some people with cerebral palsy may not be visibly disabled or may appear to be mildly uncoordinated, while others have very little control of their bodily movements and may have other neurological symptoms, such as vision or hearing impairments, seizures, intellectual disability or difficulties with speech. Many people with cerebral palsy lie between these extremes.

Depending on the severity of their condition and their needs, people with cerebral palsy may use leg braces, canes, crutches, walkers or wheelchairs — but not all need assistive mobility devices.

4. Treatment for cerebral palsy includes Botox injections, orthopedic procedures and therapies.

Botox is no longer just for Hollywood’s top celebrities; it is currently used as a injection to relieve muscle stiffness in people with cerebral palsy. In addition, many people with cerebral palsy undergo tendon lengthenings and other orthopedic procedures, such as serial casting, in order to maintain movement.To increase functioning on a day-to-day basis, those living with cerebral palsy may attend physical therapy and occupational therapy to develop motor skills and increase independence, as well as speech therapy to improve speech and communication skills.

5. Cerebral palsy is not an intellectual disability.

Although it originates neurologically, cerebral palsy itself is not an intellectual disability — though it can be present alongside intellectual disability. Many people living with cerebral palsy have average or above-average intelligence — just as in those without cerebral palsy. Therefore, it is of the utmost importance to presume competence when interacting with people affected by cerebral palsy.

6. Many people with cerebral palsy experience physical pain.

Cerebral palsy can cause a significant amount of wear and tear on the muscles, particularly over time. Pain may arise out of the abnormal muscle movements present in cerebral palsy.  25 percent of children and teenagers with cerebral palsy experience pain, while up to 84 percent of adults with cerebral palsy experience physical pain.

7. People with cerebral palsy have a variety of identity preferences — and these should be respected.

People with cerebral palsy generally refer to their disability identity using either person-first or identity-first language. Person-first language places the focus on the person, rather than on the disability (“I have cerebral palsy” or “I have a disability.”)  Identity-first language places the focus on the disability as an integral part of identity (“I am disabled.”) It is important for the able-bodied population to respect these identity preferences and not change or “correct” self-identifying language.

8. Cerebral palsy is often misrepresented by the media.

Cerebral palsy is a highly misunderstood medical condition, largely due to the media’s descriptions of the condition. It is often incorrectly characterized as a “disease,” presumed to be genetic, or reported as a progressive condition. In addition, those with cerebral palsy are frequently described as “victims” or “sufferers,” though the vast majority of people with cerebral palsy live fulfilling, happy lives.

9. There is still a heavy social stigma surrounding cerebral palsy.

Due to the pervasive misconceptions surrounding cerebral palsy, some people with the condition may be reluctant to disclose their disability or share their experiences with others out of fear of being misunderstood or stereotyped. They may also attempt to conceal certain symptoms. Some people with less visible cerebral palsy go to great lengths to hide the condition. Understanding cerebral palsy can reduce the stigma and stereotypes surrounding the condition.

10. People with cerebral palsy are not required to educate the able-bodied population.

Oftentimes, those living with visible cerebral palsy receive personal questions in public regarding “what happened” to them, why they use particular assistive devices or how they accomplish certain tasks. Although some people with cerebral palsy are willing to answer politely-worded questions, it is not their responsibility to educate others about the condition, and they have the right to decline to answer intrusive questions. It is crucial to understand that no one is entitled to be educated in a public setting or to receive a stranger’s medical history.

11. People with cerebral palsy can be independent.

From a young age, many people with cerebral palsy learn adaptive skills to maximize their independence later in life. Although some people with cerebral require high levels of assistance, many people with cerebral palsy can drive or transport themselves independently, live independently, and support themselves financially.

12. Those living with cerebral palsy can experience the same life milestones as the able-bodied population.

People with cerebral palsy attend and graduate from college and graduate school, establish fulfilling careers in a wide variety of fields, date, marry, own homes, start families and care for their children — just like the able-bodied population.

13. People with cerebral palsy enjoy a wide variety of activities.

Cerebral palsy does not prevent those who have it from enjoying a variety of activities. People with cerebral palsy are writers, performers, hikers, techies, crafters and collectors. They play sports, compete on debate teams, volunteer their time and hold leadership positions in their schools and communities.

14. People living with cerebral palsy are not “heroic” or “inspirational” for living their lives.

People with cerebral palsy are frequently deemed “heroic” or “inspirational” for engaging in everyday tasks or for simply existing. Although those who use such terms are generally well-meaning, their words evoke pity, as they are based on the misguided assumption that living with cerebral palsy is unfortunate and tragic. On the contrary, people with cerebral palsy live full lives, and many take pride in their cerebral palsy and the unique perspective it provides. Those with cerebral palsy, therefore, are neither heroic nor inspirational — unless they do something that truly merits being placed on a pedestal.

15. People with cerebral palsy are capable.

Each person with cerebral palsy has a variety of skills and talents.  Some are athletic, musical or creative. Others are scientifically-minded, entrepreneurial, linguistically talented, or emotionally intelligent. No matter what skills or talents they may possess, all people with cerebral palsy are capable and have immense potential to succeed in life.

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Earlier this week, my dad and I were talking about how I was going to complete a certain activity. I ended the conversation with, “I don’t know, but I am sure I will figure it out.” He smiled and said jokingly, “Can you just life your life as if you have a disability for one second?”

Nothing in life is certain. Things can and have changed on a dime, but it is not worth our energy to worry about it and dwell on the uncertainty that lies within ourselves. Sometimes, all we can do is hope all of the stars will align, and everything will turn out for the best. Recently, I asked a local lady from my small town of Fort Macleod to custom make me a hoodie that says: “Walking Is Sooo Overrated,” and she delivered. Initially, it was meant to be a joke. Obviously, it makes me laugh. However, it holds a metaphorical significance to me as well. I have had cerebral palsy since birth. Therefore, it is all I have ever known.

Throughout my life, there have been many times where I have envied how those around me can do everything so easily. Much of our personal perspective is shaped by our individual experiences. I am not saying I wouldn’t want to get up out of my wheelchair and run if given the opportunity, but I do know I would not be who I am today without it. I also know I can live a fantastic life with what I have been given. I have learned that just because I don’t have the ability to walk in the same way as most people, it does not mean I don’t have the ability to make footprints.

Regardless of the challenges you face, I believe you can do anything you set your mind to.

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My very first Best Buddies Friendship Walk was OK for the first portion of the event. It was February 20 2016 — 16 days after I had received a major surgery that fixed the chronic kneecap problems I’d had from my fifth-grade year till the middle of the second semester of my junior year of high school.

Best Buddies is an organization that helps  students and young adults who have intellectual and developmental disabilities. I’ve had been an active member of the ambassador training sessions and events like Time to Shine, an art and music talent show during the summer.

However this wasn’t my favorite event to take part in. Because of having the surgery and the fact that I have spastic hemiplegia cerebral palsy, I was having trouble getting around in my wheelchair because of the bulky cast on my left leg. My parents took turns pushing me around, and I was feeling pretty neutral about this experience as we started the walk.

A woman who noticed I was in a wheelchair looked at my cast and asked, “What did you do to yourself?”

I wanted to slap her in the face and gave a glare as to say WTF? I didn’t do anything to myself.

My parents understood my reaction and explained my situation. This experience has become one of the biggest reasons I hate it when people assume things about me.

If I am to give you the same respect I would give other people, please do the same to me. This woman’s question was so poorly worded. People need to know the way they ask their questions could have negative or positive results. It’s all in the wording.

As a result of this incident, I had convinced myself not to plan to participate in this year’s Friendship Walk. However, thanks to a friend I met through Best Buddies I did change my mind. He told me to see the positive side of attending. They needed volunteers to hold up poster boards that had letters that spelled out “inclusion” at the end of the walk and I decided I could help with doing that, as walking long distances is taxing on my energy. In the end, the reason I ultimately did not attend is because I had conflicting activities that day.

Never underestimate the capabilities of a person who has cerebral palsy, and take the time to learn about what it’s like for them. I’m going to take part in my second Best Buddies Friendship Walk, and I am proud to be an Ambassador of Best Buddies Arizona and hope one day the message of respect shines through.

It’s about time we break the negative stigmas ignorant people slap on us as if we were inferior human beings. It may be the one-year anniversary of when I received the major surgery that gave me back my ability to walk without chronic kneecap instability, but I want to help break the stigmas that leave people pitying us. Put yourself in the shoes of a person who has any disability, and change both your own and other people’s perspective of people with disabilities.

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Thinkstock photo by Tatomm

Dear Future Husband of a Wife With Cerebral Palsy,

Let me be the first to congratulate you on choosing your wife. I hope you chose wisely, someone you love and with whom you share many of the same hobbies and goals. You fell in love with her for so many reasons. She just happens to also have cerebral palsy, but as you know, that is only one aspect of her.   However, because she has cerebral palsy, there are some things you should know that will lead to a smooth and happy marriage.

Cerebral palsy can be a complicated disability, and CP can vary from person to person. Even though cerebral palsy doesn’t worsen over time, cerebral palsy can change daily. Some days spasms and tightness might be better than others. Sickness, weather, hormones and stress are all common factors in spasticity. When she seems to be having a difficult time, please just offer to help a bit more. You don’t need to bring attention to increasing spasticity, because this may lead to her being self-conscious about it. Also, as your wife ages, her disability might change a bit. Muscles and joints wear down, and things that were once easy may become challenging. I’m not saying this to discourage you, but to keep in mind so you can be there to support your wife.

As you already know, your future wife wants to be independent. Independence is important to just about any woman, but it might be more challenging to achieve when you have a disability. Discuss with her what she may or may not need help doing. But here is the tricky part. Even everyday tasks can be challenging, some days more than others. She might not always ask for help, but she might want it. For example, let’s say she can dress herself in her pajamas. Feel free to ask her from time to time if she would like some help. Or, be creative in helping her so it takes the focus away from the disability.

As strange as it might sound, your future wife would like to know you love and don’t mind helping her. If she needs assistance in eating, be the first one to offer to help feed her (or whatever the need may be). It’s important to show her that you’re in this marriage for the long haul, and she is your top priority. If you really don’t want to help her, you might want to reconsider the lifetime commitment of marriage. Let’s say that your wife has personal care tasks completed by personal care attendants. Keep in mind that personal care attendants do call off, get sick and sometimes need to find new jobs. You may need to step up to help your wife at those times.

Never use her disability against her in any situation or argument. Cerebral palsy cannot be helped. You can’t choose how tall or short that you are, and it is the same when you have a physical disability. She didn’t decide to have cerebral palsy. If you use her disability against her, you’re essentially abusing her emotionally and perhaps physically. Love isn’t about intimidation or being cruel. If you need to resort to these tactics in an argument, you definitely shouldn’t be getting married and you might need to get counseling so you can have a healthy relationship one day.

Your wife might have personal care attendants, and that will be a big change in your life. My best advice to you is to be courteous, clean and do your fair share around the house. Never expect the personal care attendant to clean up after you. You can fill and empty the dishwasher, you can vacuum, you can put your clothes away, and empty the trash. I think you know what I’m getting at here – your wife isn’t your maid, and neither is her personal care attendant.

Cerebral palsy most likely won’t interfere with your wife becoming pregnant. Having children is amazing, and if both of you want children, by all means enjoy. Depending on her limitations, you’ll need to discuss what she might or might not need help with. Stay flexible, patient and kind. Things will fall into place if you work as a team, remain loving, and always be friends. Congratulations, and have a long and happy marriage!

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