Tag: writing

Disability

HOW PEOPLE SEE ME…BUT WHO I TRULY AM

OUR BEAUTIFUL CHALLENGES

What I am not is the first thing you see.

What I am not is the six legs I used to walk around.

What I am not is the handlebars I hold onto.

What I am not is what you see when I walk into a room.

What I am not is the way you see me on the outside.

What I am is a person who is just like you.

What I am is someone with self-worth.

What I am is someone with intelligence.

What I am is someone with dreams.

What I am is someone with hopes.

What I am not like another person with a disability that you know

What I am not is the label that I was born with

What I am not is your inspiration

What I am not the only person in the room with a walker.

What I am not is taking up space in life.

What I am not is letting my disability stop me.

What I am not is letting my disability affect how I live life.

What I am not is allowing myself to give up on myself.

What I am not is letting my challenges get in my way.

What I am not is letting my fears get in the way.

What I am is a creative person.

What I am is someone who gives love.

What I am is someone who receives love.

What I am is someone who loves life.

What I am is what you see, what you see in me. That is what is called judging what you are visiting with your eyes. When you judge with your eyes, you miss out on life because life is much more than what you see on the outside. When you remove the walker and the disability, all that is a person, just like you.

Disability

THE CHALLENGES INBETWEEN OUR CHALLENGES

OUR BEAUTIFUL CHALLENGES

I want to encourage everyone to love themselves. To love ourselves and our lives with disabilities, we need to understand our disabilities and how to work with them, not against them. Even though you see your disability as a weakness, it should be one of your best friends. You will be companions for life. Even the best roommates sometimes quarrel, but you work through the challenges.- Marie W.O.W.C.P.

A question I often get is, “How do I do all that I do?” Then they explain they wouldn’t know if they could do what I do if they had my challenges. I tell them that they will find a way to do their best, and you can go beyond that, just because I don’t mean I want to give up the life I was given because of your challenges. Something my family instilled in me is the strength they have. There are times when I would like to give up. When I feel like I want to give up, I kick myself in the behind.  I was taught never to give up on myself. I was also taught that if there is a challenge in my way, never give up on myself or the challenge. 

The challenges I was given have been the fuel that has kept me going throughout life. Yes, there have been times when I have forgotten to add fuel. I try not to fear life and strive not to give up; what helps me is my spirit. My fighting spirit has also seen me through my challenges. Not many people have a fighting spirit, but I was born with one.

If someone had asked me years ago how to describe my disability and the challenges that it gave me, I would have said it was the one part of me that I wished I could get rid of. If you asked me today what I would say about my disability, I would say it is the one thing that empowers me. So what happened between then and now? 

Life is challenging with cerebral palsy, but what about the challenges that arise between those challenges? Such as adding the life stressor that everyone experiences, whether they are disabled or not. These are the most challenging times for me. I am equipped for life with a disability. Still, it’s the life challenges that are woven into those everyday challenges that I wasn’t prepared for—the aging with CP, getting other genetic disabilities, and illness. Then there are life stressors, which I know none of us are ready for, but for those who already have stressors of their own, the added ones I wasn’t equipped for. I have always been equipped to handle the things that came with having CP, such as the challenges of the spasms, learning to walk, the falls, the breaks, the surgeries, the therapies, and making sure people know I’m more than my disability.

 I needed to learn how to control my emotions. People don’t talk about the emotional side of having CP. While people with CP have normal mental abilities, there are times when it doesn’t seem like it to me. As much as my parents never held back from events, it was still because there were milestones that you have as a child, a teen, or a young adult that I missed out on due to CP or being sheltered from things in life because of the CP. Those times added to my stress because they were the times when I felt different.

Adding unnecessary stress to myself not only made me feel different, but it also made my CP act up, which caused it to throw me off balance and make me fall.  

Sometimes I can’t help but feel stressed by things like ensuring I have enough money to live on, reading or watching the news, and having the PCA I need. As much as I love being independent, the challenges weren’t what I thought they would be.

With all the small challenges between the more significant ones, it’s still worth knowing that no matter what challenges I might face, they are still worth overcoming.

Disability

SELF LOVE JOURNEY

OUR BEAUTIFUL CHALLENGES

I want to encourage everyone to love themselves. In order to love ourselves and our lives with disabilities, we need to understand our disabilities and how to work with them, not against them. Even though you see your disability as a weakness, it should be one of your best friends. You are going to be companions for life. Even the best roommates sometimes quarrel, but you work through the challenges.- Marie W.O.W.C.P.

If someone had asked me years ago how to describe my disability and the challenges that it gave me, I would have said it was the one part of me that I wished I could get rid of. If you asked me today what I would say about my disability, I would say it is the one thing that empowers me. So what happened between then and now? 

To understand and appreciate who I am, I had to go through a self-reflection and self-respect journey, which ultimately brought me self-confidence, self-compassion, and self-love. Three things that I thought I already had, but I didn’t. I wasn’t even close. It took me ten years to determine what I needed and wanted. It took me ten years to realize what life wanted from me. It took me ten years to realize that the one thing I saw as a weakness in my mind, body, and life was the one thing that was my greatest strength and empowerment in my life. 

From the moment I was born, my body challenged me, but what showed on the outside to the world wasn’t what I felt on the inside. What I felt on the inside was fear, imperfections, and the sense that I couldn’t be more than what my body showed the world. What I didn’t realize was that I was showing internalized ableism. 

Internalized ableism was challenging for me to understand and grow out of. (I have explained what internalized ableism is in a past blog post. So I won’t get into it. Please feel free to go back and read it if you want to know what it means.) I had to tear myself apart to build myself up again. I was feeding myself all the negativity that others were feeding me, and after a while, I started feeling and thinking I was all those things. I also added more to it because I was afraid of going near others who had disabilities. Most of all, I was scared of being with others with cerebral palsy. It was a hard pill to swallow when all I wanted was for others to see me without a disability, but then I was doing what others were doing, too, and I was only seeing disabilities in others. 

I always felt as if I was superior to the cerebral palsy community. I felt like I was in three parts: the woman side of me wanted so badly to be on the same page as other women her age, such as wanting a job and family. There was the Cerebral Palsy side of me that I feared would overshadow me, even though I didn’t know who I was at the same time. And lastly, there was me, who I thought I knew I was. I felt I could be like everyone else and have everything I wanted. It sounds silly, but I felt that if I didn’t see myself as a “disabled person,” then I wasn’t one. I knew what I wanted and what I was capable of, and it was always hard when other people brought me back down to reality by seeing my disability instead of the version I saw.

It wasn’t until I was alone during the pandemic that I had to reflect on who I was and wanted to be. Three months after the pandemic started, I could move into my apartment. This was my first time alone, and I didn’t expect it to be under these weird circumstances. My computer became my best friend. I found myself writing down all my thoughts and goals and reflecting on my feelings in the past.

Spending a year and a half with little contact with the world taught me my journey in life and how my challenges helped me become who I am today. By sharing all of this, I hope to inspire people to live in the moment and realize that we are a collection of our past, present, and even our dreams for the future. We can’t know who we are if we don’t spend time with ourselves, good and bad. 

I invented an exercise that helped me. I sat in front of my mirror, and at first, it was about looking at the physical part of myself, but then I realized it was about looking inside myself. I needed to sort out my life like a crowded attic full of dusty boxes. I needed to unpack my life story to figure out what I needed to throw out or polish up and keep. Doing this helped me grow.

Disability

MUSIC IS MY DRUG

OUR BEAUTIFUL CHALLENGES

Music is the sound of silence in a room full of noise. It is a friend when you need a friend. Music isn’t a movement that makes sense. Music can help you through any challenging, sad, lonely, or joyful time in life. It can make your heart light or heavy. Having cerebral palsy, music is the constant friend that I can lean on when no one is around.

Not only does the community have a hard time seeing past disabilities, but at some point in the life of a person with a disability, they will have trouble seeing past their disability. As people with a disability, we fight so much for others to see past the disability. We focus on making people see past the disability and forget that we are more than the disability. I had forgotten I was more than CP in the last few years because I wanted to see what CP was like as an adult. As a kid, I was in the back seat as my parents were in the driver’s seat doing so much to advocate for me, but I needed to support myself as a competent adult. I ran from my CP for so long that I needed to devote myself to knowing what CP would be like as an adult. 

When you devote your life to something, you forget about other parts of yourself. This part of my life is over. At the beginning of this chapter of my life, both sides of me were two separate parts of life; it was more that I wanted to intertwine these two sides of me. There was who I was; then there was the CP side. I was never sure if I wanted the two sides to be one because I saw my CP as my weakness. Once I devoted this period of my life to getting to know my CP. I learned that CP wasn’t my weakness but my strength. That was when I felt comfortable making these two sides become one.

Now, who is Josephine without? I’m Josephine, (I am) an average person who likes to do average things. One of the things I lost when trying to find who I was as an adult with CP was my passion for music. When I was born, my mom said they had put music next to me in the incubator crib from day one of my life. Music has been the one friend that has always been a comfort, and it’s a friend that I can turn to get my mind off of the CP.

The frustration of having limitations because of my CP has always been my source of anger and depression. Throughout life, music has always been the getaway of the pain, depression, and frustration that comes when you live with a disability that gives you limitations. The music comforts me when I’m down and pumps me up when I need a pep in my step.

Music is like a drug I can’t get enough of, like a bird to a birdfeeder. Music, for me, goes much deeper than the lyrics or meaning. It’s one thing that makes me feel free in a way that I can’t feel free. I think the rhythm throughout my body. When my cp is out of whack, I can pump the music in my ears, and the cp relaxes. I’m unsure why this happens, but I can’t explain its power over the CP. When my CP goes out of whack, it craves a specific genre of music. When my body is out of whack because of anger, my body craves punk rock such as Blink 182, Nirvana, and Collective Soul; when my body feels mellow, I go to contemporary such as Matchbox20, Andy Grammer, Jason Marz. I can feel the music from big bands to jazz, rap to country. Finally, R&B and the ’90s gave me the energy. When I go to a concert or somewhere with loud music, I feel like I’m in a pool, swimming freely to the point my body is unaffected by the CP.

Another aspect of music that interests me is how the pieces are put together. The skills and talent involved have always fascinated me. Growing up, I struggled a lot in school because I had many learning disabilities; I just learned what I needed to get by in life and never really explored other things. 

My dream was to be a DJ. When I started college, being a DJ, you needed steady hand skills, unlike nowadays, which is more digital. My dream of being a DJ didn’t come true; however, my passion for music still gets more profound love. I study and read about music as much as I can. I love the side of music: how people put the music together, what goes behind the song, how the song comes about. I’m not sure why I’m drawn to this site, but I find it attractive. 

When I realized my dream of being a DJ wouldn’t become a reality, music again had a new meaning for me, and I started to study it independently. I read books about what made artists appear in the music industry and how they got involved in music. Not only do I read about the artists and the music industry, but I also enjoy reading about what music does to the brain.

 I am fascinated by how the brain works because of my CP and its power on the body. I don’t like taking medicine if I don’t have to. I can get by just listening to music for the pain to go away; I find that music is not only influential on me as a person but is also influential on my disability.

Disability

GETTING READY IN THE MORNING

OUR BEAUTIFUL CHALLENGES

For me, getting ready for the day is a whole different experience from anyone without disabilities. Getting ready starts the night before; I make sure I have everything prepared for the following day, including whether I have to pack a bag, my clothes, enough bus tickets to get on the bus, and something in mind for breakfast. If I need to pack a snack or lunch, I need to prepare that, most of all, making sure I have a ride for the morning. I have to make a ride 5-7 in advance to ensure I have a ride to take me where I need to go.

In the morning, there is another mental checklist I have to follow. I set the alarm for 6:30 to 7:00 am to get out the door by 8:45 am to wait for my trainspation. Before then, I needed to get myself up, but as I age, it’s getting harder to pop out of bed like a toast from the toaster, so most day I have to set my alarm 30 minutes earlies so I can stretch out my body from a long night of being curled up in bed. Then I get up, wash up, and get dressed. This can take up to 45 minutes, depending on how I feel in the morning. It’s getting more challenging to get my socks and shoes on. I’m so thankful my boyfriend doesn’t mind helping me when he’s around. My socks and shoes have always been a challenge, but now more because I’m overweight. My weight is something I’m working on, but we will talk about my weight in another blog.

After getting dressed and washing up, I have under an hour to get breakfast and grab things I might need for the day out. I bring a bag with things I will need for the day, or if I’m going somewhere and need my computer, I’ll bring that. I try to be out in the hall 10 to 15 minutes before the bus gets here so I can be waiting. Most days, I just go to the YMCA, but when I  get there, I feel like I have already had a workout.

Getting ready for the day can be so exhausting, but it’s worth. Just because I’m disabled doesn’t mean I should stay in the house and waste my life away. That isn’t what I was put on this earth for: I was put on this earth to enjoy the life I was given.  For some people, such as me and others who are disabled, it is a struggle, but those struggles should empower you every day to live life.

AWARENESS, CEREBRAL PALSY, CHALLRNGES, DISABILIATIES, Disability, EMPOWER, HEALTH, LIVING MY BEST LIFE, PHYSICAL DISABITY, SELF-AWEARNESS

FORGIVENESS

OUR BEAUTIFUL CHALLENGES

Everyone says I have a fantastic story to share about life. When people say I say it’s just what I was given, I had to make the best of the life I was given. However, I want to tell my story, but I have a lot more to learn about life and about myself. During the Pandemic, I started the journey because I was forced to be locked in my apartment. I moved out of my family’s home for the first time and it was six months into a 4-year Pandemic. I could only visit with a small pod of people for the first year and a half, leaving plenty of time for me to become best friends with my computer.

My computer became the best friend I needed, and it didn’t judge me. I would sit at the computer most of the day and write what was on my mind and in my heart. Some of the stuff I would write about was hard to face, while others were fun to remember. The writing was therapeutic for me. I learned to talk about my challenges, even if I was just just talking to my computer.

While talking to the computer, I was able to put different parts of my life into perspective. I saw that being afraid of who I was hindering myself from reaching my full potential. 

A lot of people would expect my life to get harder during the pandemic with such limited help, but instead, it opened me up in many ways, even though I was shut inside. Even though the Pandemic made my challenges even more difficult, it didn’t make them any less beautiful.

Challenges can be beautiful in many ways. It can be hard to see how beautiful challenges can be if you are the one with said challenges. For example, I was living on my own for the first time, and I was managing my own place by myself. Even though I had limited help, I had unlimited creativity. I was able to make my apartment my own style. I could plan my own meals and cook them in my own pots and pans, and do my own laundry. It was challenging, but I grew to love who I was and what I could become.

For the first time in my life, I was able to fall in love the right way by getting closer with a good friend of mine. I used my computer for this, too. This is just one of many ways my computer helped me. I was able to use it to travel all around the world. I got to know what the pandemic was like in different countries.

The challenge of the pandemic was made beautiful by giving me a new way to explore the world online. My world became so much more than I ever thought I could have. While learning about my beautiful challenges during the pandemic, I also saw how to forgive myself. Even though I never showed it, I held it in my mind that my disability would stop me from having the life that I wanted.

During this whole journey, I learned that whether you are born with a disability or acquire one in life, challenges are beautiful. Once I saw myself, I took a turn in life, making me accept who I was. I know how difficult it could be looking past our negativity, but there comes a time when we must look beyond what we see in ourselves, and what other people see in us. Every obstacle we overcome has a purpose and a meaning.

When overcoming a struggle, I don’t see it as anything significant. I just see it as part of life. Whether you were born with a disability or acquired one in life, believe it or not, our challenges are beautiful. It took me a long time to see that in myself. Once I saw that in myself, I took a turn in life, making me accept who I am. I know how difficult it can be to look past our negativity, but there comes a time when we have to start looking beyond what we see in ourselves and what people see in us. Every obstacle we overcome has a purpose and meaning. When overcoming a struggle, I don’t see it as anything significant; I just see it as a part of life. As a kid, I used to fall, then just get up and move on like nothing happened. People used to ask me how I could do that; I would just say it’s a part of life. It’s not that I don’t see my challenges or seek help for them; I just try not to let them get to me. If I try not to let my difficulties get to me, then when people meet and get to know me, they don’t see my disability. They see the person I am, and isn’t that what you want people to see in the long run?

Challenge means: A call to participate in a contest or a competition, especially a duel. When I look at this definition, I think about what I was like in the past. I thought I was competing with my peers.  I realized I wasn’t competing with my peers. I was competing with my disability. By competing with myself, I lost more time than if I just went with the flow and my challenges.  Yet, I would not change a thing.  Whether they were the challenges I was born with or the challenges I added to life, they made me who I am.  

Results may vary based on the life you’re living. Your challenges won’t be identical to mine, but there are ways to make them beautiful. I invite you to look at ways to broaden your horizon even if you don’t or can’t leave the comfort of your own home.