Dedication: To everyone with a Physical Disability.
Hello, my name is Cassidy Jansen. I’m a seventeen year old girl with many challenges in my life. I’m hoping that by sharing my story, it will help you realize that life does get better, and you can do anything you set your mind to.
I was born on October 1st, 2001, almost three months earlier than I should have been. Being the age that I am, I don’t have much insight to the world or really anything, but I understand how teens think. Being a teenager/young adult is probably one of the hardest things in life. You feel like no one understands you and you feel alone. Whether it’s because of mental or physical challenges, your life is hard. I’m here to help you get past this hard spot in your life and see a bright future.
While I don’t expect this to be published like a real book that you’d get at your local bookstore, I would like people to be able to read it and find hope.
As I said, I was born almost three months earlier than I should have been. I spent weeks in the ICU with breathing problems. None of my body was fully developed; you could see through my skin (my bones, eyes, veins), and I fit in the palm of my Dad’s hand. When my parents finally got to take me home for the first time, I believe it was around Thanksgiving. I was on a heart monitor with wires everywhere. Everyone was so scared to hold me because they thought I might break.
After Thanksgiving, I had to go back to the hospital until Christmas, where I was finally able to go home again. Everyone including my doctor was worried that I wouldn’t live long. When I was in the hospital my heart stopped a few times.
When I was four or five, I had to have my first surgery. I had dislocated both of my hips; they had popped out of their sockets because of the way I would always sit and the way I crawled (at this point in time I still could not walk). They call it “W sitting”. It’s where both legs are on either side of your body and if you sit in the middle, your lower body will look like it’s making a W. When I had the surgery, the doctors put my hips back in their sockets by putting pins and screws in to keep them in place.
Recovering from this surgery was hard on my family and I. With the cast I had on, I could not move my legs at all and there was a bar in the middle to keep them apart.
The second surgery I had was just to remove all the pins and screws they had put in with the first. Again, I had a cast.
After the second surgery, I had months of physical therapy (PT) to get my muscles working so I could start walking. It took a lot of time and hard work.
I was born with cerebral palsy.
Cerebral- Latin cerebrum, meaning affects part of the brain. Palsy, meaning lack of muscle control. Cerebral palsy is caused by abnormal development of the brain that affects a person’s ability to control muscles. According to History on CP on the American CP Foundation website, studies of this condition began in the 19th century by William John Little, after spastic diplegia was called “Little’s disease”. Canadian physician, William Osler, first named it “cerebral palsy” from the German zerebrale Kinderlähmung, meaning cerebral child-paralysis. Although cerebral palsy is not a hereditary condition, genetic influences can cause small effects on many genes. Doctors are still unsure what causes the brain to develop this way, but there are many theories. Cerebral palsy is not preventable, but maybe one day with gene therapy it could be managed better. It is a neurological disorder caused by a non-progressive brain injury that can happen when a child’s brain is still developing. The condition mostly deals with movement and muscle coordination. This means that anyone born with cerebral palsy will have a loss in motor skills. It can be different for everyone with cerebral palsy, but overall there are four main types. Each of these four types can have a different effect on the brain and body. This page will explore the different types of cerebral palsy, the effects it can have on the brain, the effects it has on the body, different ways to treat cerebral palsy, and how one’s disability can take a toll on the whole family.
When it comes to types of CP, spastic is the most common form. It can cause stiff muscles, which leads to jerky or repeated movements of the arms or legs. Another type of cerebral palsy is dyskinetic. With this, muscle movement is slow and uncontrollable. Along with the legs, arms, hands and feet, muscles in the face can be affected as well. Ataxic. This kind of CP affects balance and depth perception, which can make things like writing and reading hard. The last type of CP is called Mixed, which means that someone could have symptoms of all the other kinds of CP at once. While there is no cure, treatment can help someone with CP have a better quality of life.
Damage to the white matter of the brain affects the responsibility for transmitting signals inside the brain and to the rest of the body. White matter is found in the deeper tissues of the brain. It contains nerve fibers, which are extensions of nerve cells. Many of these nerve fibers are surrounded by a type of sheath or covering called myelin. Myelin gives the white matter its color. It’s a mixture of proteins and phospholipids. Damage from periventricular leukomalacia or PVL looks like tiny holes in the white matter of a brain. These gaps in brain tissue interfere with the normal transmission of signals. Researchers have identified selective weaknesses in the developing brain. If you were to look at the brain scan of someone who has CP, it would show a lot of white in different areas of the brain depending on the type of CP that person has. Someone that doesn’t have cerebral palsy has little or no white showing up on their scans. In a brain with no white, things are connected as they should be and all the nerves and muscles work as they should. A brain with cerebral palsy however, has white spaces meaning there’s nothing there, and connections can’t be made over that area. Connections have to find another way and because of this, some nerves are more sensitive than others and some muscles don’t work as well as others. In the end, everything is connected. Depending on the type of CP, messages just take more time to get sent out or reserved. So it can take someone with cerebral palsy longer to understand some things because messages can take longer to get to their destination.
Cerebral palsy affects the motor area of the brain’s outer layer, the cerebral cortex. That has several functions of the body like determining intelligence, determining personality, motor function, planning and organization, touch sensation, processing sensory information, and language processing. Someone with CP can have trouble in these areas depending on how severe the condition is. For example, in one arm the nerves could be so sensitive you could feel everything and in the other you wouldn’t be able to feel anything.
There’s a lot of treatments and ways to manage this disability. For some, it means getting surgery. People with severe contractures may need surgery on bones or joints to place their arms, hips or legs in their correct positions. Surgical procedures can lengthen muscles and tendons that are too short because of severe contractures. These corrections can lessen pain and improve mobility, and may make it easier to do everyday things. In some severe cases, when other treatments haven’t helped, surgeons may cut the nerves serving the spastic muscles. This relaxes the muscle and reduces pain, but can also cause numbness.
Cerebral palsy is not only a disability that affects the people who have it, but it also affects the people around them in many ways like stress caused by medical bills, insurance, and making your home handicapped accessible. These are just a few examples of how CP is known to be one of the most depressing conditions of families. When it comes to insurance companies, they don’t always want to pay for things and they may drag things out as long as possible. In order to make your home handicapped accessible, it takes a lot of money. You may have to pay for ramps, handrails, special bathroom things, and many other changes that might have to be done to make the life of someone with CP better. That in itself can be stressful. Parents often worry about how their child is going to handle life by themselves. Questions parents tend to ask are: ‘Who’s going to help them get around?’ or, ‘How will they take care of their own family when that time comes?’ Parents shouldn’t worry about any of these things as much as they think they should, as there are so many programs and places that are made for helping kids/people with CP or any disability once they are on their own.
It is hard some days to have to deal with CP but my family and I make it work.
Along with all my surgeries and the physical disadvantages I’ve had to deal with, I’ve also had a few mental problems. Throughout the years I’ve had to deal with depression. My depression came from the fact that my parents didn’t help me as much as you’d think. Sure they took me to all my appointments and helped me after surgery, but what they never have been able to understand is that a mental state comes with my disability and being a teen too. That’s something I’ve always had trouble dealing with; the idea that they don’t understand me.
I’ve also had to deal with anxiety, with my biological mother. As I was growing up around my mother, I had to deal with her yelling and throwing things all over the house. While she is getting help now and it’s working, I still have trouble.
There are times when my depression, anxiety, or both at the same time are so bad I’d go days without eating a full meal. I’d eat just enough to not starve to death and I’d stop sleeping. All that fun stuff.
I guess my depression got worse when my grandparents passed. First it was my biological mother’s father. I was in the living room with my little sister and my cousin; my grandpa was dying in the kitchen. I watched him go. Then a month or so later, it was my dad’s father. He had died minutes after we walked out of the hospital. We didn’t even get to the car before we got the phone call. A few years later, we went to the house to have my dad’s mom fill out paperwork. We walked into the house to find her on the floor. It took us two hours to get her to come with us to the hospital. When we finally got her to go to the hospital we found out, if I remember right, she had brain bleeding and her liver was failing because of all the wine she drank (my grandma did love her wine). She was gone about a week later. We had just arrived back from the hospital, and had just got into the house when we got the call.
In the months after, we worked on cleaning out their house and cleaning their things. It was very emotional. We soon sold the house and I can’t help but wonder if in some way my grandparents are still around. What I am getting at is that it’s okay to not be okay. It’s okay.
Depression to me means feeling out of place in the world, not wanting to do anything. Not enjoying life or activities like you once did.
There are more than 3 million U.S cases of depression per year. Possible causes include a combination of biological, psychological, and social sources of distress. Every year, more and more research suggests these factors change brain function.
When our parents were growing up, depression wasn’t a word in their dictionary. So nowadays when kids say they have these mental health experiences, most parents say it’s all a “teenage thing” and that “you’ll grow out of it”. With every medical case though, we find that it’s not always the case.
The World Health Organization (WHO), estimates that each year approximately one million people die from suicide around the world. That’s 16 people per 100,000, or one death every 40 seconds.
Depression is a big part of my life, and it might not be something I can completely get over, but I know now that there is help. Steps I can take to better understand this mental illness. Steps I can take to help handle it better. I would be lying if I said I hadn’t thought about suicide in the past, but I’ve gotten help and a few very supportive people in my life and I’m doing okay. But remember, it’s okay to not be okay. Just reach out to people when you need help.
Suicide Hotline: 1-800-273-8255
Suicide Prevention Site: https://suicidepreventionlifeline.org/chat/
Anxiety means to me feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome. It’s being unable to think straight; thinking about more than one thing at a time.
Anxiety disorders are the most common mental illness in the U.S., affecting 40 million adults in the United States age 18 and older, or 18.1% of the population every year. Anxiety disorders are highly treatable, yet only 36.9% of those suffering receive treatment.
Living with anxiety can be really hard, you’re always worried about everything. For me, I overthink everything; anxiety doesn’t help that. It’s living in a constant state of “Oh my god. What now?”
Anxiety can take any confidence you have, make it harder to do well in school, going out with friends, family or maybe a significant other. Someone I know once said, “I totally get it. Just remember, all it is, it’s just energy in your body. It’s like Red Bull in your body. Sorry to hear about your anxiety. Try this next time, close your eyes, take a big breath. Hold it in count ’til 10. Hold a beat and then take another deep breath hold it in, count ’til three and let it out on a count ’til 10. Repeat etc. Don’t rush the count.”
After hearing those words I calmed down and everything just kind of fell into place. I could deal with life a little easier, knowing I had a way to calm myself in an emergency.
My life overall has been both real amazing and real hard. New challenges every day, new reasons to be happy every day. Some of my biggest reasons to be happy everyday are my friends, my family (most of them) and my amazing boyfriend. If one of them makes me smile at any point in the day, it changes my whole day.
Every day, I wake up at 5:30 in the morning, get ready for school, and I’m out the door by 7:00-7:15 in the morning. During that time in getting ready my parents help me with everything. Don’t get me wrong, I can do everything by myself, it just takes me a lot longer so for anything that I need to hurry up for I ask for help. And asking for help is okay, don’t ever feel like asking for help makes you weak. Asking for help shows people that you want to get better at something so maybe next time you won’t need help.
After getting to school, classes start at 7:30. I use my power wheelchair to get around during the day because it’s easier and I’m never late for anything. School ends at 2:40 in the afternoon, so I go to my after school program until around 5:00-5:30 at night until my dad can get done with work.
My friends are so great and a big help in my life, at school, and they help me if I need someone to talk to or a shoulder to cry on. They are just that extra bit of support that everyone needs. Although sometimes I feel like I’m not there enough for them and that I don’t help them enough. I feel like for them being my friend is really hard. If they wanted to go somewhere with me we’d have to walk or wait for my Dad to take us whereas with their other friends, if one drives you just hop in the car and drive. I don’t get to hang out the way I want to with my friends and because of that, I don’t get to go out much.
When I realize that I don’t get to go out much and it really brings me down, my boyfriend is usually the one who picks me back up; helping me realize that my friends are my friends for a reason, no matter the fact that I can’t get around easily. Every day I’ll get at least two or three messages asking me how I’m doing and if I need to talk. We help each other out, and most nights we end up falling asleep on the phone, which really helps your mind see that someone cares about you when you’re dealing with depression and anxiety.
***When dealing with hard times in life, make sure you build yourself a great support system of people. It can be people you talk to in school or people you’re friends with that don’t go to school with you. It can be anyone you trust. It also helps when things are really bad, to watch your favorite movie or movies and get lost in them for a while and when it’s done you may see that what you were stressed out about before doesn’t really matter anymore. That’s what I do. If you’re not a big movie person, try books. They work just as well. ***
When I was younger I didn’t have a care in the world. Nothing bothered me. I didn’t think having the challenges I do was that big of a deal but as I got older, it got harder for me to respect myself and my challenges. Everything from school to friends to family to other relationships like with my boyfriend.
When you think of abusive relationships you tend to think: boyfriend/girlfriend or husband/wife and physical abuse. You never seem to think of friendships and verbal or mental. I don’t want to call it abuse and make my amazing friends feel like they’re doing something wrong because they’re not. I got rid of all the abusive people in my life.
Before I was smart enough to kick all of them out of my life, my boyfriend saved me from one. I was too scared to break the friendship off on my own, my now boyfriend helped me. Every day I thank him. Life may get hard and not be all rainbows and sunshine, but you can get past all the hardships. Don’t give up, I never have.
“Everyone who reads this book is inspired. Your words heal a part of a broken heart in a way I’ve never seen before. The strength that lies in your words is unbelievable. You have been through so much and there are no words to describe how much I adore your bravery and strength.”
“You, Cassidy Jansen, have a gift. Don’t be afraid to share it with the world. ❤”
“I think you are brave for opening up about your life, not many people have the courage to do that.”
“The fact that you expose yourself to the world shows how strong you are.”
“Cassidy J. If you were to ask me who she is, I’d tell you this. We have been friends for a long time, about six years. I met Cassidy in summer school, and later on in life we went to school together, and will most likely graduate high school together. But when I first met her, I knew something in the way we connected that I’d have a lifelong friend. We have been through our up and downs in our friendship, any relationship does, quote on quote “break ups”, drama and fights, but I couldn’t ask for a better friend. Call it a kindred spirit or whatever but she is like a sister to me. She makes me laugh, and smile, and roll my eyes at times, but doesn’t family sometimes make you frustrated? But you can always make up and forgive, no matter how long it takes. Family isn’t always just blood. She is my sister as I see it. Loving, kind, caring and has the strength I only wish I had. She’s the annoying sister, the caring sister and someone I know I can always trust when I can’t trust others. Sometimes I feel like I listen to her more than she listens to me, but she has been there for me when I need it most and that means more to me than having her listen to me grip and complain. I don’t want to worry her with more than I need to. The fact that I know she’ll always be there for me, and me for her is something I count and hold high. My trust in her runs deep. And if you say she’s just someone with a disability and she in a wheelchair, no she is not. I don’t see the wheelchair, it doesn’t make her who she is. She doesn’t let it define who she is. She is smart, and witty, and kind. She is just like me and you and she can do anything she puts her mind to, I’ve seen her do it. There was a time I didn’t talk to her at all and was mad. I held a grudge for a long time. I soon realized that yeah, I could be mad, and could never talk to her again, but I wanted my best friend, and my sister. We cleared the air, and yeah, things changed, a lot, but I believe in the end we both came out stronger for it. And in a way, I felt like something inside me was telling me that she wasn’t a friend to let go and fade away like others in the past I had. That she was here to stay and have my back and I was to have hers. So through all the hardships we’ve had, we have had more moments of happiness and I couldn’t ask for anything more. So that’s who Cassidy is, and more than I can write or say. All I know is this, I wouldn’t trade my sister for anything.”
“I read this every day. I wait every day for an update. I really like it. It’s really good.”
“I learnt more from your story then I do in a week of school and I feel I’ve known you for ages even though we’ve never met. Your story is really inspirational and your hardships have been challenging but you prove that anyone can keep going. I feel bad for every time I’ve ever thought my life was hard or complained to my parents because your story opened me up to real challenge and I never actually realized what some people go through. You’re really inspirational and it must have been tough writing about all this but I’m glad you did and I’m sure it’ll give insight to many others.
Growing up as the happy little girl that I was, at 4 years old you could ask me what I wanted to be when I grew up and I would answer that I wanted to be singer/songwriter. As I got older I still held onto that dream because of my grandparents. They kept me going. I still write and sing today, but I’ve focused on other things.
After a few years, I began to see that things weren’t right with the world. People needed help everywhere. People were dying, take 9/11/2001 for example. According to CNN NEWS, “At the World Trade Center (WTC) site in Lower Manhattan, 2,753 people were killed when hijacked American Airlines Flight 11 and United Airlines Flight 175 were intentionally crashed into the north and south towers, or as a result of the crashes.”
Seeing things like that, while I was not yet born to see such horrific a day, I learned about it in school, I wanted to help people. I wanted to join the military, have my boots on the ground just like every other great man and woman out there. Fighting for our freedom every day, having to leave their families for months at a time to protect the freedom Americans take for granted.
I wanted my boots on the ground, I wanted to take the fight to them and show people that the United States doesn’t give up without a fight, but sadly, one day I looked in the mirror. Wheelchair and all, I began to see what people talked about every time I said that I wanted to serve my country. I remember clear as day, like it was yesterday, being in one of my classes and someone from the military comes in to talk about career opportunities and such. At the end of that hour I went up to him, told him what I wanted to do. He asked me a few questions about my disability which I happily answered correctly then he says, “I’m sorry but with dealing with that you wouldn’t be able to join in the way you’re looking to.”
I completely understood but I was still heartbroken. I had two things going on in my head that day. The “I’ll prove you wrong” attitude and the “yeah okay sure” attitude. I went with the “Yeah okay sure” attitude. While I still haven’t given up completely on that dream I have gone for things within my reach for now.
I’ve done so many amazing things in my life but every day I wake up and feel like I could be doing more for the people I love. It is good to stay within your comfort zone but if you want to join the Navy SEALS and help the world one day, don’t let anyone stop you from trying to do so. Fight for what you believe in and what you want out of life, don’t give up.
Since the day we stopped talking, after Grandpa passed away, I’ve missed you. After we lost him I had a hard time talking to you because I no longer saw the spark in your eyes, I no longer saw that happiness; I suppose that happiness left when Grandpa did. Nonetheless I couldn’t handle seeing you so heartbroken… it broke me. And because of that I had to stay away from the house, but then I lost you; it was really hard to say goodbye. I really didn’t get a chance to. Today, I carry regret for not being there like I should have been. You were my rock, I should have been yours and I wasn’t. I carry more regret at the fact I had so much to say and didn’t, now I’ll never have that chance. It’s been about three years since I lost you and that regret gets heavier and heavier every day. I’m carrying the regret because it’s all I have left of you and Grandpa, the memories are fading away and I can’t stop them, it’s like I’m losing you all over again. I can’t handle that. I think what bothers me the most, other than the regret itself is that I put it on myself, I didn’t really choose for it to happen. I wish I could in a way put it down and walk away but what if I do and forget you and Grandpa? I know it can’t happen but the fear is still there; carrying this regret and fear is really hard on me. It’s really hard in my day to day life. It mentally drains me of almost everything, without it though I’d feel lost, it’s all I have left of the both of you. Say “Hi” to Grandpa for me.
Your “Angel”, Cassidy
I already wrote a letter to Grandma, but I thought I’d write one to you even though I don’t know what to say, or I have so much to say I have no idea how to do it. I guess, this is more for me then you, because like I told Grandma I haven’t really gotten past the fact that you’re gone. I miss you. I’m lost in my own head, I don’t know what I should say here, and dealing with your death was really hard because just a few months before we lost you, we lost my Mom’s Dad. In a way I feel like I’m not over your death because of the way I left Grandma alone after.
I grew up thinking nothing could kill you, I grew up calling you Superman. The whole family thought of you as Superman. Once we got to the house I tried to lighten the mood and said, “I guess Grandpa found his Kryptonite.” I got a few smiles out of it. I know this isn’t as long as the letter I wrote to Grandma but it’s always been hard talking to you. I never knew what to say, but that doesn’t change the fact that I miss you and I love you.
I remember sleeping over and the house every once in a while, it seemed every time I did I had a spelling test and you would quiz on the drive to school and you kept going until I got most or all of them right. It’s because of that I’m really good at spelling and doing really well in my book.
Anyway, I love you. I miss you.
Okay, it all started with the battery not doing so well. Draining faster than it should, having to be charged more often. Things that happen when it’s cold or if a battery is getting old. I could live with that, seeing I only use the thing at school I didn’t see much of a problem. But as we all know things tend to happen in threes.
Once the battery started acting normal again another part of my chair started acting up, one of the things my chair can do is lean back like a recliner; only without having your legs out in front of you. For safety, the chair as to be at the right angle to drive or you could possibly tip it over, so here’s how that day went:
I go to school with my chair like every other day, go to class to take my ACT’s, lean my chair back enough so I’m comfortable for however long it was going to take. Few hours later- after my testing, I go to put my chair down to the safety angle to drive and no matter how I put it, the chair still thought it was tilted and wouldn’t allow me to drive. So I had to get my teachers to push me around in it until the Wheelchair repair guy came (which took all day) and if I said having my teachers push me around in my 365lbs chair wasn’t embarrassing I’d be lying to you.
Anyway, so the guys comes, does a few tests then does a work around so I can drive but no longer tilt. Okay fine by me I just want to go home. The next day they came and put in a new part so all that was fixed.
Now I’m not sure where in the line of problems this happened but, the lift on my Dad’s car, the one I use to take my chair to and from school broke. So now my chair is sitting at school 24/7 until it’s fixed. I don’t think it’s really a problem because before I got the lift, my chair would stay at school anyway, but I can tell that the people involved in this problem seem to be a little stressed and I can’t blame them, having that lift for me got me a little bit more independent. I could actually go out with friends and not have to worry about being back at school before the classroom door was locked. Even though I face all these problems, I still manage to keep my head up. Even on bad days, I really hope my story can help you of those around you. Life can be hard for everyone but for those with disabilities it can be just that much harder. I really enjoyed writing my story, and even though I’m ending it for now doesn’t mean the story has to be over.
Life keeps going and it can be hard to keep up, that’s why I’m here to help if you need. I’m no therapist but I do know how hard it can be even with a supportive family and a great group of friends. I’m looking to help those who don’t have that or maybe they do and they just need someone who understands better. You’re not alone I promise! Thank you to everyone in my support system!