Cerebral Palsy Does Not Define Me. I Define Me.

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I am one of 17 million people across the world living with CP (cerebral palsy). CP is the most common physical disability in childhood.

I wanted to share what CP is to me and then bring a little light to what life is like for me with CP. When I was growing up, I couldn’t walk. My parents said I would also try to crawl with little success. My muscles were much weaker than “normal.” But the word different was never used in our household… because the only thing different about me is how I see the world. Even on my worst days, it has still been my main source of hope. I have been blessed with a sharp mind, which has helped me to keep a “can-do” attitude. I hope my hard work is an inspiration to others.

I have loving parents and a caring big sister who have supported me through it all. I would not be where I am today without their encouragement, care, and allowing me access to resources that will help me achieve my goals.

I am also blessed to live in a country that has respect for individuals with disabilities and gives us extra access to resources. I am currently working towards obtaining a college degree. I am also an advocate for CP awareness year-round. I am planning on opening an online adaptive clothing line soon in Minnesota in hopes of enriching the lives of those around me with disabilities.

My desire is that my life story will bring hope and encouragement to others.

CP does not define me; I define me. I am a strong, intelligent, and beautiful human being.

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A Love Note to My Wife Caring for Our Daughter in a Hospital Room

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Last week, at age 7, our daughter Pearl was hospitalized for the 11th time. And, just like the 10 times before, you were by her side all the while.

Together, we have overcome what feels like challenge after challenge ever since our Pearl had a hypoxic stroke that resulted in brain injury at just 6 weeks old. We have learned how to be her best parents, how to coordinate her care, how to make her life happy and healthy.

And yet, when it comes to hospitalizations, you are the one who takes it on.

So when you called to tell me you were bringing Pearl to the area’s Level 1 Pediatric Trauma Center 90 minutes away — as Pearl was sick in the backseat of our minivan — my heart ached for both of you.

Because while I cannot overstate my concern for our daughter, I also know you, Natalia.

During a hospitalization, you will go days without sleeping, eating or thinking of yourself in any way. You will steadfastly sit and sleep by Pearl’s side for as long as her stay lasts. You will survive on stale bagels and a million cups of sour coffee from the 24-hour shop in the hospital lobby. You will refuse to leave or let me stand in your place.

(Except for the one time when Pearl’s physician looked at you, red-eyed and dehydrated, and insisted I be allowed to take over, just for one night).

Only once Pearl is safely back at home, will you allow yourself to collapse with exhaustion. For weeks after such an episode, you will stumble through life seeking sleep whenever you can get it. But first, always first, everyone else has to be OK.

As Pearl’s father, your husband, and the default parent assigned to reassuring and caring for our neurotypical son during his sister’s hospitalizations, I often feel at a loss for how to best support you through these times.

Just like when — during this last hospitalization — I realized you had left for the trauma center without any food or water or change of clothing. I could not bring you supplies until noon the next day, after I delivered our son safely to school. And when I finally did see you, you said you were fine.

But I could see the exhaustion. Mental. Physical. Emotional.

As parents of a child with a disability, these episodes are frequent aspects of our family life and we continue to adjust. When hospitalizations go on for days and weeks, the cumulative effect of the sleeplessness, the worry, the loneliness, the dehydration and the poor nutrition can be devastating. It’s hard, but feels necessary to keep our family together and safe.

So, Natalia, I want you to know I see what you do and I appreciate it. And that when I show up with a change of clothing, or a thermos of herbal tea, or brown-bag sandwiches, I wish instead I was delivering you solace, and relief, and that oh-so-precious sleep. But instead, I will continue to support you, and our family, and our children, in the ways I can, and be forever grateful for your unwavering strength.

Editor’s note: This story has been published with permission from the author’s wife.

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Why I Love My Wheelchair as a Young Woman With Cerebral Palsy

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We all have things we treasure — our phone, jewelry or a favorite item of clothing. The things we treasure make us feel good or benefit our life. One of mine is my wheelchair. Yes, my wheelchair! I have cerebral palsy and am able to walk short distances, so I’m only in my wheelchair part time. But I am grateful to have the chair when I need it.

At the same time as I was given my first wheelchair I had recently had surgery, so the chair I had expected to use occasionally, I needed to use full time. I remember being pleased as the chair fit me and fit through doorways easily. After having my National Health Service chair a few years, I learned to drive, and realized I could lift my chair in and out of the car. For a while I used canes, crutches and walkers, mainly because I didn’t think I’d be able to be independent in a chair. I saw friends who use chairs and they seemed to be light and easy to get in and out of the car. I decide to explore my options.

I decided to get a new wheelchair assessment. This assessment couldn’t have gone any worse. We arrived and I was told that they had a choice of two wheelchairs. Both were OK, but the crucial thing for me was could I get them in the car? Neither fit in the boot (trunk). “Put the back seats down,” I hear you say. Well that has a number of problems — one I can’t have more then one passenger, and I’d have no room for anything else. The second problem is that I am small and have poor balance, so I couldn’t safely reach the chair. At the end of the appointment there was mention of the wheelchair voucher scheme.

I came home feeling rather disappointed. My hope of being independent seemed further away. But I looked on the internet at lightweight wheelchairs, and spoke to a friend who used a lightweight chair. After looking on the internet and visiting mobility shops, I was more hopeful — but finding the right chair for me still wasn’t going to be easy.

I visited a shop and looked at two wheelchairs; the people who worked in the shop used chairs themselves so really understood the importance of getting the right chair. Both were easier than the ones I’d tried at the assessment, however I still struggled to remove the wheels. But they would fit in the car and were lightweight. A few weeks later I went back and was told that a new chair had just come in. This chair was light, fit in the boot without having the seats down and would provide me with the independence I longed for.

The wheelchair is used as the symbol for disability; the word disabled can mean less abled. This means that a wheelchair can be seen as a negative. Now I’m not saying that being in a wheelchair is not difficult; it can be very challenging. Our environment is not always built for wheeling! But for me, the wheelchair is something that helps me to overcome the effects of my disability.

I’ve had my chair for about two years now. I love my wheelchair for a number of reasons:

It saves my energy: my cerebral palsy means I use up to three times more energy. Using the chair means I can enjoy a full day out or go out after a busy week.

I feel safe: my balance isn’t great. In certain situations using the chair makes me feel much less vulnerable. I don’t have to worry about losing my balance or being trapped in a door — if I do get stuck in a door the chair gets bashed, not me! This also means that I feel more confident going to new places.

Sometimes I’m in pain: my cerebral palsy means I have muscle spasms. These can cause pain, and on bad pain days my wheelchair allows me to continue with daily activities.

It gives me more independence: before I got my wheelchair, I would only do small amounts of shopping at a time, or someone would need to be with me to help me use my NHS chair. The chair I have now is lightweight and means I can go out and about on my own.

One of the best things for me is being able to enjoy shopping for presents for my family, especially my mum. She was the person who would take me shopping; although she never know what I’d bought, she often knew the shop I’d been in, or I’d have to give my brother the money and details of what I wanted and he’d get it. I know neither my mum or my brother ever minded helping, but I always felt stressed or anxious around mum’s birthday as I couldn’t do what most 20-somethings can do. This year my mum had a real surprise and it was a gift I purchased for her all by myself.

Other occasions when the chair makes life easier is social situations, especially when I am going on my own or to a venue I don’t know. Last weekend my dad dropped me off in town and I felt safe, comfortable and confident enough to stay on my own. Having my wheelchair meant I could move around to talk to different people, get my drink from the bar, and join everyone on the dance floor for much longer than I could have otherwise.

I am writing this because as a part-time wheelchair user, I want people to understand the issues I face and challenge the idea that a wheelchair is always a negative. People have often made comments or behaved in a way they think is helpful or encouraging, but actually make me feel hurt, misunderstood and frustrated:

“You don’t need to be in that.” – I feel that people say this to make me feel that I don’t really need the chair. But to me it shows lack of understanding. If I’m in my chair I feel it is the best thing for me at that time.

“Why are you in there?” – My response to this depends on who and how I’m asked. For example, some people I see regularly have never seen me in my wheelchair. If you work with me or meet me at my local pub I will not be using my chair; meet me on a day out or shopping and I’ll be in my chair. In this instance it offers a good opportunity to explain more about my condition, and this is positive. However, some people will say it in a way that implies that they don’t really want to know, they just don’t think I should be in it.

Another problem I face personally as a wheelchair user is linked to my condition. Because cerebral palsy affects my speech, people often think that it must affect my mental function. Some people do have intellectual disabilities as well as cerebral palsy, but I do not. I also, unfortunately or fortunately, don’t look my age. I’m sure I’ll be glad of this one day! But I have been asked various times “Are you lost?” “Where’s your mummy?” People try to push my chair without asking, or even worse continue to attempt to push my chair when I’ve said I’m OK. If the person thinks you need help, it can be very hard to convince them you are OK on your own.

I also find that if I’m out with my mum or a friend, people will talk to them instead of talking to me. If I am out with my mum or a friend it’s because I enjoy spending time with them. Many activities are more fun with someone else, not because I can’t be out on my own.

Despite the challenges I face, I enjoy the freedom and independence my wheelchair gives me and see my wheelchair as a positive. If you are thinking about using a wheelchair or have a child who may benefit from a wheelchair, I would encourage you to see the wheelchair as a positive thing that can improve quality of life for yourself and your family.

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Thinkstock photo by Katarzyna Bialasiewicz.

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To Children With Cerebral Palsy: You've Got a Friend

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Dear Children With Cerebral Palsy,

You may have seen my last letter and thought it was cool that someone would take the time to write you and encourage you. I’m a 19-year-old with cerebral palsy. I wrote that letter because when I was growing up I looked for encouragement online, but everything was for parents. I hope these letters will be the start of changing that. This letter will be more for older kids.

Growing up with a disability (and possibly a speech disorder and more movement than your friends) is definitely not always a walk in the park. You may accidentally hit a friend, say a simple word ten times before someone understands, or run over someone’s foot. But in the end, you’ll have many funny stories to tell when you’re older.

I do want you to know that not everyone has the patience to wait for you, to figure out what you’re saying, to help you. Most people are willing to help, but don’t be surprised if you meet a few people who don’t understand. Some people are scared, as silly as that might sound. It’s not uncommon to meet people with disabilities, but in some towns it is. I live in and around towns like this. I was the first girl with a physical disability at all of my schools, at the church where I grew up, and at the studio where I danced. But because of me they are now serving other people with disabilities, and they have more resources for them. You too might be the first person with a disability at some places.

Understanding people with speech disorders isn’t always easy; you might already know this. It doesn’t get much easier as you grow up either. Your family may still have trouble understanding you. But it’s OK because there are other ways of communicating, like sign language or pointing to what you want. Find a way that works for you; this might be a mixture of two or more ways. Know who you’re talking to; how will they understand you best?

People who don’t know you very well may help you too much. I don’t know why, but people often think they’re helping when they aren’t. I guess that’s just the way they are. They’ll learn over time. As I mentioned before, some people are scared of helping you, or rather they don’t know how to help you or understand you, and that’s OK. Just smile and ask someone else. Other people might be scared of helping you too much. If you’re older you can just let them know it’s OK to help you when you ask. You can let everyone know that.

If you can, stay close with the friends who support and love you at all times. As you grow up they will be the ones who really help you through the hard times in life. Trust me. No matter how long you’ve known them, they will be there. Like Hunter Hayes says in his song “Invisible,” “If you look past this moment, you’ll see you’ve got a friend, waving a flag for all you are and all you’re gonna do.” I’d recommend listening to this song if you ever feel alone; it has helped me a lot.

-A Young Adult With CP

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The NICU Memory That Shaped My Perception of 'Normal'

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One of the most lasting memories from our NICU journey is something I still think about often. I replay the scene in my mind and, like most of those memories, they transport me right back. I can hear the monitors beeping and the slight whooshing sound from the ventilator as it forced air into my son’s tiny body.

I see him there, lit up under a bright light in a dark, quiet room. Needy, frail, sick. Pencil legs and transparent skin. Our little Avery.

It’s not only the sights and sounds that are brought back, it’s the conversations we had, too.

This night in particular Avery was behaving himself. We got to touch him as our favorite nurse did his diaper change and even held the thermometer in place to check his temperature. I remember well because it was this nurse, this beautiful soul, who first trusted us enough to teach us these things. He was still tiny, under a pound and a half at the time. Arick, more faithful than I was for the entire NICU stay, looked down at Avery and joked that soon Avery would be cutting the grass and taking out the trash. My head snapped, “He will not be cutting any grass and taking out any trash! No!” His innocent joke turned me into sad, depressed, mess Steph. How could he say this tiny baby would have chores? How could he expect him to do things other kids are expected to do? How could he imply that he’d be “normal?”

Who knew that little conversation would haunt me so? That it would cause me to examine myself on a level that made me so uncomfortable?

Prematurity was just the first card Avery was dealt. Within 18 months he was diagnosed with cerebral palsy and a rare brain malformation. Both seemed completely unrelated to his prematurity. He also had polymicrogyria.

We learned pretty quickly that Avery’s life would be far from “normal.” In fact, we’ve flown by the seat of our pants. We can’t tell you what Avery will and will not be able to do. A year ago I may have said, “He might not ever walk.” But now he runs. Differently and a little sideways; and he falls a lot. But he runs!

Little boy standing on his backyard, wearing a green shirt, tan shorts, white socks, white leg braces, and white shoes. he is looking to the side, smiling.

I was forced to do something that I really didn’t want to. I had to define a new “normal” for us.

This is what I learned:

Our normal is clearing airways when your son chokes and gaggs on most foods. Our normal is not sitting up until 18 months and not walking until days before your 3rd birthday. Our normal includes neurology, gastroenterology, pulmonology, ophthalmology, physical medicine and rehab, pediatrician, physical therapy, occupational therapy and speech. Our normal is AFOs and SMOs and hand braces. Our normal is aspiration pneumonia, surgery and hospitalizations. Our normal is a 3-year-old who is just beginning to communicate his needs but still can’t tell you if he has pain. Our normal is ARD meetings, IEPs and the preschool program for children with disabilities. Our normal is fear and tears and fight. Our normal is analyzing every single thing he does because the chances of him one day having seizures is greater than the chance he won’t. Our normal is watching your child do things you thought they never would. It’s worrying when they’re sick and stressing about every cough. It’s feeling isolated and alone and like you have no one in your corner. Our normal is Avery.

I decided from day I would not place limitations and labels on him . Who am I to say that he shouldn’t or that he can’t take out the trash? Or clean up behind himself? Or finger paint or do the things typical 3-year-olds do? If I tell him he can’t, perhaps he never will. I’ve resolved to never use the word can’t with him. He can and he will, whether he needs accommodations or he can complete the task alone. I’ll never tell him he isn’t capable. If he was capable of surviving everything he has, taking out the trash will be nothing.

That one conversation brought all of this. I think about it quite a bit because it was a moment that my tough façade crumbled and you could see the weak person hiding behind it. I’m ashamed of that fear I felt but at the same time I’m grateful it happened because of the growth it led me to.

And as soon as Avery outweighs the bag of trash, he’ll be taking care of that.

Along with anything else he wants to tackle along the way.

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My Truth About Independence as a Woman With a Disability

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In the disability community, independence is often the #1 goal. We talk about it in doctor’s offices, we strive for it in physical therapy, it’s center stage at IEP meetings. I’ve heard parents say it’s their first concern when faced with their child’s diagnosis. For so many, we don’t feel successful until we can do everything ourselves.

I used to subscribe to this idea. Doing everything on my own felt like my way to prove to the world that I was disabled, but like, not really. In the years leading up to going away to college, I mapped out my daily routine in my head, planning, changing and trying everything to make sure that for the next four years, I could live life help-free.

I arrived at my dream school anxiously awaiting freedom. On top of all the other excitements college brings, I think I was excited for another reason. This was my chance to prove to everyone that my cerebral palsy truly didn’t define me. In a lot of ways, independence was on my side. My CP is mild enough that I can do the vast majority of my personal care on my own, and I am grateful for these abilities every day. I can get out of bed myself. I can brush my teeth and get dressed. I can shower and use the bathroom independently. All the main bases were covered. What could go wrong?

Well, lots of things.

When I carried clothes from the downstairs laundry room to my fourth-floor dorm, I left a trail of shirts, pants, and sometimes bras for all to see. Trips to the grocery store were lengthy and frustrating. Sometimes I skipped out on buying essential items because they were on the top shelf, or there was no room in the basket I could fit on my lap. Among my more practical obstacles were personal, seemingly insignificant struggles. I couldn’t curl my hair and do elaborate eyeliner like the other girls in class. Several pairs of shoes sat untouched in my closet, impossible to put on without help. I arrived at parties feeling self-conscious about my outfits and my hair, limited to styles I could manage on my own. In my quest for the ultimate freedom, I had never felt more trapped.

These small inconveniences grew into larger, less manageable frustrations, and eventually, a terrifying realization. I was going to need a little help.

With the help of the disability resource center at my school, I set out my search for a personal assistant. It was embarrassing to spread my personal needs across the internet for all to see, but the response I received was incredible (you’d be amazed what college students will do for $12 an hour, seriously.) Before long I had a line of girls ready and willing to help. Within a week, I hired a sweet girl who was down to do laundry, take out trash, do hair, nails, and even stick her finger in my eye to help me with my contacts. After just one meeting with her, it became clear that my life had just become more productive and 100 times less stressful, all because I had the courage to ask for a little help.

I spent the next four years of college with a wonderful team of girls by my side. Gone were the days of spending an hour changing the sheets; now I was free to spend that time studying (or partying, but whatever). With help styling my hair and putting on makeup and clothes, I began to feel like myself again: confident and carefree. For me this isn’t vanity — it’s dignity.
But somehow, even with all the positives that came with my assistance, I still felt ashamed. Having help felt like a dirty secret — something I was determined to hide.

“I’m just not a morning person, but I’ll catch up with you after!” I’d say as an excuse to cover the help I was getting in the morning.

“Oh, I have an appointment after class, but you can come over after that!” No way I’d tell a friend I was getting help with laundry.

I warned my helpers about these privacy concerns. “If anyone asks, can you just say that we’re friends?”

Underneath this secrecy was my deep-seated belief that if I couldn’t do everything on my own, I had failed.

I now realize that independence doesn’t mean doing everything on your own, it simply means being able to live life on your own terms. In refusing to accept help, I was actually building barriers around myself and the opportunities available to me. I didn’t truly find the freedom I was seeking in college until I let go of the need to do everything on my own.

Hired help is something I will probably always need to live the life I want. My needs have grown and changed over the years, and my caregivers past and present have become some of my best friends — I often joke that I will have the world’s most helpful bridal party. Being in charge of my care team has taught me invaluable skills — how to manage, give clear direction, and set boundaries. Having help gives me a new type of freedom — the ability to live life in the way I would if it weren’t for my disability. For me, this is what it means to be independent.

Independence is a great goal, and something I work towards every day. I will never take the abilities I have for granted. Everyone should strive to be the best version of themselves, while keeping in mind that independence can take many forms, and may look a little different than you originally thought. Remember, “Help” may be a four-letter word, but it’s not a bad one.

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Thinkstock photo by Voyagerix.

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