Am I stubborn? Maybe? I don’t know. Most people would say no. They think I am the nicest person. A few people called me an angel. However, my family has something to say about that. The correct answer is yes. Many of us think being stubborn is a negative thing. A lot of it depends on how we look at that word. Born with a physical disability, I have to be stubborn. Otherwise how am I supposed to get what I need or want? Without being able to fully communicate. 

Another way to look at it, babies keep crying until they get what they need. Caregivers and nurses think people with disabilities are too picky. If people don’t get certain things right the first time, how are we supposed to be happy when knowing we would be in pain later? Like putting shoes on the wrong foot. Luckily I was able to correct my family quickly. There were a few times when my personal items went wrong. I was in pain for a period of time. People are not always around to help. Who wants to be in pain for hours? They don’t realize that we can’t help ourselves when stuff starts hurting us. Same principle applies. I don’t want to do my homework twice because I listen to my parents instead of doing what my teacher taught me. 

There are nine words that made the biggest difference. In the early intervention programs, my parents were told, “never set limitations on what I would be able to do”. Since then, they never forget that phrase. It guides them in their decisions of letting me go to a regular school, play flag football, be a high school basketball manager, etc. If they hadn’t put me in a normal school, we would have never known how smart I am. It was the best decision they made. As I was going through school, I learned to stand my ground when everyone else is trying to tell me what I can’t do. Always figuring out a way to do certain things or make stuff better. Being stubborn not only helped me to get what I want, it also got me where I am today.

When people hear the words “physical disability”, they first think of people who can’t walk. There is so much more than just being unable to get up and walk. Even if they can walk, getting dressed and climbing in a vehicle is still challenging. Going places takes a lot of time and effort. When people are incapable of putting on their shoes and socks, it means they need help from others which require much patience. That is just one simple thing. 

What about those who are more limited? How much time do you think they wait around on a daily basis? If many people are like me, we would be averaging between two and three hours. Some days are longer. Waiting to get dressed or use the bathroom multitude times a day. Waiting for someone to give me a drink. Waiting until somebody makes a meal and feeds it to me. Even waiting for each bite. If I want one of my family members to set up my tv, that means more patience. I am always waiting. 

In my book, I had written a paragraph that fits along with what I have been saying. “Not everybody can pick me up. Have you ever found yourself laying hopeless in bed? I never want to wait for somebody to get me off my bed, so I can fully communicate with my device. I never want to wait to get up, so I can move on with my life. I never want to wait to climb out of bed, so I could go to work. It is all a part of living with a physical disability. I learned to be patient. Life would be less meaningful if I didn’t develop patience. “Tonia, you are the most patient person.” people commented. ‘No, Michael is the most patient person.’ mom informed them. Not being able to get up and walk is tougher than most people can imagine.”

There are so many questions about cerebral palsy. “What causes cerebral palsy? Where does cerebral palsy affect? Can cerebral palsy be cured?” A lot of questions have been answered, but some of the answers to questions are unknown. Some people who have CP are still able to walk and talk while others can’t. A few people can do certain things with their feet. Most of my brain damage appeared in the motor area. There are different muscles I can control better than others. In my book, I created a story to help to give everybody a better understanding. 

“Out in the middle of the ocean, visualize 650 navy ships line up as a stickman human figure. That is how many muscles there are in our body. A circle head. Long body with ten fingers and toes. The head captain on the first navy ship sends you out to an island located in the head of stickman. The island is like where our brain is located in the body. You put on a heavy radio backpack and climb into a small boat in the middle of a storm. A bunch of loud thunder and lightning. Once you arrive, you notice the radio broke. There is no time to go back to the ship and get another radio. After several minutes of messing with the radio, only certain channels work. Each ship has its own channel. Would you be able to transmit messages to all 650 navy ships with just a certain number of channels? There is absolutely no way. It would be nearly impossible. That is how the cerebral palsy brain works. Person ended up with a half broken radio. That explained why each individual with cerebral palsy is different. There are body parts I have more control over than others. My radio mostly works with the ships around the island. I can move my head, eyes, nose, jaw, and neck really well. The rest of my body, not so much. Some people with cp are lucky to have most of the channels working. Living in a body of severe cerebral palsy is like being stuck on an island with a broken radio.”

Growing up I have always been depending on others for my physical needs, mostly my parents. Getting me ready for the day. Feeding me everyday. I am always waiting for someone to help me. There is nothing I can do about it beside being patient. I could get frustrated, then nobody wants to be around me. The purpose in life is not just about gaining experience. Also to learn how to lift each other up. For this reason I wrote a song titled This isn’t the life I imagined. Most of the words came from my book.

This isn’t the life I imagined
Every time I see my muscles
Struggling to work together
Fighting against each other
Moving on their own
Having a mind of their own
Feeling like I am trapped in a broken body
Wondering how long I need to wait
Before my muscles start working together

Not much control over my body
Not able to take care of myself

Have you ever found yourself trapped?
Have you ever felt broken?

Listen to the words I am about to tell you
Look at me and know that
Even though this isn’t the life I imagined
Learning to admire the world in different ways
Not letting my body drag me down
Holding my head up high
Looking past my troubles
Shining through my broken body
Smiling into people’s hearts
Letting them know even though this isn’t the life I imagined
Everything will work out
Trust me, everything will work out

This isn’t the life I imagined
Every morning I find myself
Looking up at the ceiling
Listening to footsteps down the hallway
Laying helpless
Limited by my abilities
Wondering how long I need to wait
Before someone can start getting me up

Always depending on other people
Always waiting for someone to help me

Have you ever found yourself laying helpless?
Have you ever felt broken?

Listen to the words I am about to tell you
Look at me and know that
Even though this isn’t the life I imagined
Learning to admire the world in different ways
Not letting my body drag me down
Holding my head up high
Looking past my troubles
Shining through my broken body
Smiling into people’s hearts
Letting them know even though this isn’t the life I imagined
Everything will work out
Trust me, everything will work out

This isn’t the life I imagined
Every mealtime I find myself
Staring at the plate
Smelling the food
Sitting helpless
Stomach growling
Wondering how long I need to wait
Before someone can start feeding me

Not able to take care of myself
Always waiting for someone to help me

Have you ever found yourself sitting helpless?
Have you ever felt broken?

Listen to the words I am about to tell you
Look at me and know that
Even though this isn’t the life I imagined
Learning to admire the world in different ways
Not letting my body drag me down
Holding my head up high
Looking past my troubles
Shining through my broken body
Smiling into people’s hearts
Letting them know even though this isn’t the life I imagined
Everything will work out
Trust me, everything will work out

Have you ever had moments where an idea came to your mind and you wanted to write it down? That was me at night during the first two months of writing my book. There were times I wanted to jump out of bed and begin writing, but I couldn’t. I had to wait until somebody got me up in the morning. The first month of writing my book, I had many sleepless nights. I had no idea what I was getting myself into. Getting new ideas to expand my chapters is exciting and exhausting at the same time.

Over time I slowly told my siblings about my writing, but I didn’t tell mom and dad for a whole year. A part of me wanted to see how long I could keep it a secret. With Christmas coming up, I figured it was the perfect opportunity to surprise my parents. By that time I had already written four and a half chapters. On the morning of Christmas, we finished opening presents and my oldest sister was about to give them a copy of what I had written. I immediately felt overwhelmed with emotions because I had poured out my feelings into my book. I hadn’t expected to be so emotional. After my mom finished reading chapter two to the family, everybody was in tears. It was the most touching moment.

Having severe cerebral palsy is really frustrating physically, mentally, and socially. Things go wrong every single day. As I kept writing, I was able to explain my deep feelings. Over time, my mom and my sister talked to me about how much negativity my writing contained. The purpose of writing is expressing our feelings. The more I thought about it, the more I realized my writing wasn’t representative of who I am. Everybody knows me as a positive and uplifting person. Growing up I had learned to bury my frustrations and look past myself. With my slow communication, I never got the chance to talk about my deep feelings. Over the last two and a half years, I have gained better ideas of how to express in writing the way I cope with my frustrations and live to the best of my abilities.

Next week I will share a song that I wrote about my everyday life.

I have never learned to like writing which is funny. I type all day long every day on my communication device. I was born with Cerebral Palsy. For many years I pushed every single word and sometimes words with my nose. Now I have been able to type with my eyes. When it comes down to writing papers, it takes me three or four times longer than normal people. I spend countless hours writing. Then I work with my parents on going back and editing papers. To me, it is a lot of work and time. Growing up, I have always wanted to make a difference. Not just in the community, also in other people’s lives throughout the world.

Back in January of 2019, I just came home from a trip. I was figuring out what to do with my life. That point of time, I had an associate degree and couldn’t find a job. Keep thinking what is next. One morning, the first paragraph of my book came to mind. With my poor writing skills and no experience of becoming an author, I began typing. How little I knew, it took me almost three years and a half to complete my one book. Not edited yet. If I had known it would take me this long, I wouldn’t have started. There were times I wanted to quit. What kept me going? Sharing my point of view of what it is like being in a broken body changed other people’s perspective, including my parents.

Once I publish my book, I believe it will have an impact on families, doctors, nurses, therapists, etc. Throughout my life, I have been around all kinds of disabilities. Most of them are not fortunate enough to speak their minds. I have been in their situation of being totally helpless and speechless. My goal is to educate people what it is like and how to better help them. I want to make a difference in their lives. That is what inspired me to write my book.

Over the next several weeks, I am going to share different pieces of my book through weekly email and on my blog. If you haven’t subscribed yet, I strongly encourage it. Also I will talk about other books written by or, written about people who have Cerebral Palsy. Especially the books My Left Foot by Christy Brown, and, Inside My Outside: An Independent Mind in a Dependent Body by Sara Pyszka. The most popular is Out of My Mind by Sharon M Draper. If you haven’t read them, I highly recommend them. Their stories bring back many memories to me and my parents. I will share some of our stories while my book is being edited.