Tag: CEREBRAL PALSY

Disability

LOVE IN DIFFERENT SHAPE

OUR BEAUTIFUL CHALLENGES

For a long time, I believed something very strongly:
I didn’t want to fall in love with someone who had a disability.

Not because I didn’t respect people with disabilities—but because I was still struggling to accept my own. Loving someone else with challenges felt overwhelming when I was still learning how to live inside my body, my needs, and my limits. I thought loving someone without a disability would somehow make life easier.

What I didn’t understand then was that I wasn’t afraid of their disability.
I was afraid of facing mine.

Life has a way of gently—and sometimes stubbornly—teaching us what we need to learn.

Some of my earliest lessons about connection began during the Birth to Three program. While the children learned and played, parents gathered in another room, sharing fears, victories, and survival strategies. Disability didn’t feel isolating there. It felt shared.

That’s where I met George.

George had Prader-Willi syndrome, a rare genetic condition that affects growth, hunger, learning, and emotional regulation. As kids, none of that mattered. Our families leaned on each other, and for a while, our lives were deeply intertwined—until time and adulthood pulled us apart.

Years later, we found each other again in the most ordinary way—on a bus. Then again through the transportation company we both used. Conversations grew longer. Drivers teased us, telling me I should meet someone they didn’t realize I already knew.

We went on a date. We tried to be more than friends. But our disabilities were different, and romance never quite fit.

What did fit was the bond.

For more than twenty years, George has been one of the greatest loves of my life. We share a love of cars, motorcycles, family, sports, and showing up for each other—through big moments and small ones. He taught me that love doesn’t need romance to be real.

Later, after starting WOWCP—Workout With Cerebral Palsy—I met Thomas.

I had already read his story. I had shared it. And suddenly, there he was.

Thomas had cerebral palsy and was deaf due to complications from CP. Trust came slowly. Communication took creativity. Our phone conversations required a third person to relay between us. It was strange at first—getting to know a man through someone else’s voice—but connection found a way.

We fell in love.

Our relationship lasted several years, until COVID changed everything. Distance, life changes, and growth shifted us into something new. Ending the romantic relationship was painful, but what remained was deeper—a friendship rooted in honesty and respect. Thomas is one of my closest friends, and he always will be.

Then there was Lorenzo.

By the time he entered my life, I wasn’t running from disability anymore—mine or anyone else’s. I knew who I was. I knew what I needed.

Lorenzo didn’t arrive dramatically. He arrived naturally.

We’ve been together for four years now. We would love to live together. We would love to get married. But the systems meant to support us would take too much away if we did. So we adapted.

He lives in the apartment next to mine.

It’s not the dream I once imagined—but it’s the life that fits us.

Looking back, the truth is undeniable:
The three greatest loves of my life all live with disabilities.

Through them, I learned how to love deeply, patiently, and honestly.
More importantly, I learned how to love myself.

Gratitude, I’ve learned, isn’t about getting the life you imagined.
It’s about recognizing the life that shaped you.

And for every version of love that taught me how to accept myself, I am endlessly grateful.

Disability

MAINTENANCE CHECK-UP

OUR BEAUTIFUL CHALLENGES

I feel like a young kid lately. Typically, I go to physical therapy twice a year. Once, when winter turns into spring, and again when summer turns into fall. These are the two times of year when the temperature is so unpredictable that it throws my cerebral palsy off. I just need some adjustment—my twice-a-year maintenance check-up. 

I have been performing maintenance check-ups for about twenty years now. I’ve also had many surgeries, including the following:

1) to cut out some of my quad muscle because my spasticity got so tight that it made some of my quad muscle form into a knot. It could only be removed surgically. 

2) I broke my right leg, and because of my cerebral palsy, I had to have a few surgeries to put it back together.

3) Lastly, I had a knee replacement that went wrong, and not only did I break the new knee, but I also broke the femur bone, so it took two years to recover from this. 

Every time I went to therapy following those surgeries, it was always someone who worked in sports rehab. The therapists were always so great to me and became like family. They did everything they could to get me back where I needed to be. They also made my cerebral palsy comfortable. 

I was also afraid to move on and see a new therapist. But now that I’m going to therapists who specialize in neuromuscular disabilities, I can see the difference. I will always be grateful for sports rehab and how it helped me recover from my surgeries, but I know I’m in the correct place for my needs now. 

I have always gone to see a neurologist for my cerebral palsy, but my friends in the cerebral palsy community would say, “Why aren’t you seeing a Movement disorder specialist?” A Movement disorder specialist undergoes the same education as a neurologist, with an additional one or two years of training that focuses on movement disorders, such as CP, MS, Parkinson’s, and other movement disorders. A movement doctor has additional training in various areas, including Botox, Deep Brain Stimulation, and clinical trial methodology. A lot of people assume Botox is just a beauty treatment, but its original purpose is pain management and helping the disability community.

The Movement disorder specialist I’m seeing now is delightful and listens to my concerns. She made sure I went for PT and OT so that I could get the Botox to work the way it should work. I wanted to go to the therapist I usually would go to, but they didn’t have the equipment I needed. Going to a new PT, I wasn’t sure what to expect because it had been years since I had gone to a new therapist. When I started, it felt a bit weird at first, but it also felt good because I was starting fresh. I quickly fell in love with the exercises the therapist had me do. She is currently helping me work on my own goals, such as taking one or two stairs so I can get into the house when I visit people I love.

My therapist focuses on things that help with my Active Daily Living. While I would work on those with my other therapist, she was more of a sports therapist, which meant she was working with people who had never lived with a lifelong disability. The therapist I’m working with now is trained more in brain injury. I feel as if I’m getting a lot out of it. I’m seeing a slight improvement in myself.

I now see the difference between sports medicine therapy and neurological therapy. At the same time, both have been beneficial for me. Right now, in my life, I need more neurological therapy. I’m so thankful to have a supportive community to help me reach my goals, and I appreciate the people who devote their education and profession to helping people like me live our best and most active lives.

Disability

WHY WAS IT SO IMPORTIANT FOR ME TO LIVE INDEPENDENTLY AS SOMEONE WITH CP?

OUR BEAUTIFUL CHALLENGES

 There are several reasons it is essential to live independently. The main reason was to prove to myself that I could live independently, and another reason was that the people around me would also see that I could live independently. Moving around my environment alone was the one thing that I felt would make me feel like I had reached independence,  not only as someone with CP but as someone who had been labeled all my life. 

At points in my life, many people have only seen me through a label. After many years of being viewed and treated as a label, you begin to see yourself as that label. I also began to see myself as a label, which caused me to try to do anything I could to escape that label. I lived with CP but did everything possible to look at it in the rearview mirror. All I ever wanted was to be more like my peers. 

What many people do not discuss regarding CP is the emotional component accompanying the disability. My family made me as independent as possible, but there were many things that I was unable to be a part of because of having CP. The other kids often did not want me to be a part of something because of the CP, or did not understand what I was ABLE to do even with my CP.  In return, I lost much of my childhood while being excluded.

In my 20s, when most young adults were starting to make their mark and begin their adult lives, I fell short of the same goal. I did my fair share of young 20s stuff, but I needed to expand my 20s experiences at that time. As I neared the end of my twenties, I began to notice the disparity between my emotional and chronological ages. Chronologically, I was ready to do everything everyone my age was doing. Still, emotionally, I felt ten years behind everyone my age, mostly because I lacked the experiences of social interaction that would have defined and shaped my adulthood.

I was unsure whether I would be able to live independently. I had to learn about life, act the age I was chronologically, and accept who I was as a person with cerebral palsy. It was then that I started to see a therapist.  When I first started, it wasn’t hard to open up and talk. However, talking about the hard things and why I was going to a therapist was difficult. The therapist’s first suggestion was that if it was going to be hard to talk about at that moment, I should keep a journal so that when we met, I could bring it. I would be able to read from the journal, and it would make it easier for me to talk and more manageable for her to help.

Once we got through the first couple of weeks, she started with cognitive behavioral therapy (CBT, a talk therapy). CBT returned my thinking about life and living with a disability. If I could teach any younger person with CP or another physical disability, I would tell them that just because our bodies don’t work like our peers doesn’t mean we can’t ‘live like our peers’; it just might take some time and some modifications. While I have learned so much during this time, I still see a therapist because living with a disability will always be challenging. 

After getting the emotional and mental help I needed, I could see that just because I have cerebral palsy doesn’t mean I couldn’t live the life I wanted. Now that I was getting back on a more positive mental track and could see life in a new way, I was ready to move on with life. 

I was excited about moving on independently, but I had a major setback; I fell and broke my lower right leg. Healing would take six months to a year. Still, because of the cerebral palsy and spasms from the cerebral palsy, it kept breaking, so two years after multiple surgeries and two years ago, I was back where I started. 

After about two years of being back on my feet, I got hit with PsA (Psoriatic arthritis). It took almost a year to realize I had PsA. While having PsA, I couldn’t do anything without help because it interfered with my cerebral palsy. After spending over five years struggling with PsA, I just wanted to give up. The PsA went into remission, and I got a knee replacement. Having a knee replacement is a story within itself. ( If I ever were to write a book, it would take up a chapter or two.)

Again, after all this, I questioned if I could ever live independently. I tried not to get down on myself again, but it was hard not to. However, now I had some therapeutic tools to help me through this dark period of my life.  Having a long recovery from the knee replacement and making it through this difficult time with much more emotional education about myself, I was finally ready to move on with life.

Only a short time after this, my parents were getting older, and they also needed to allow me to be more independent.  My parents ALWAYS told me to be independent, and knew they needed to let me move on. They were still there to help and support me, because no matter what point in their life, they would always be there for me and knew how important my independence would be to me and my entire family.  

In late fall 2019, I listed my name on a few housing sites for senior and disability housing. A few months later, the pandemic started in the summer of 2020. Just as the world was closing, my world was opening up. Less than a year after applying for housing, I received a letter stating that an apartment was available and inquired if I would like to visit to see if it met my needs. 

My mom and I went to check it out, and it had a mom-and-pop grocery shop in the driveway. Other than that, I had sidewalks leading up to the center of town where there were places to eat, coffee shops, banks, and more than I would need every day, and all I would have to do was walk less than half a mile. So I took it.

I was able to move in at the end of that summer. Seeing the world closed down, my idea of leaving wasn’t what I had in mind. When my family moved me in, it was as if they had left and locked me in to be myself. Due to the pandemic, no one could visit, so I was only with my family. I couldn’t have face-to-face contact with other friends, so I relied on social media and Zoom sessions.

The first year and a half of my life were tranquil due to the pandemic, and I could only have family members.  

I would have thought I would have felt lost being alone for that amount of time, but no, because all the CBT training had helped; I had a mental toolbox of tricks to use. One of my most significant activities was to return to my writing. When I started writing years ago, it was about things that did not matter or only mattered at that moment. I was able to do a lot of soul-searching and fully accept who I was, recognizing what I had overcome to get where I am today.
Life is a challenge for everyone, from start to finish. I have finally learned at this time in my life that I should not waste time worrying about things I cannot control. Instead, enjoy the moments I have to share with family and friends and make the most of them. Not to look at my life through my disability and limitations, but remember how far I have come and live my best life independently, never forgetting the people who love and support me, no matter what.

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

HELPING HANDS

OUR BEAUTIFUL CHALLENGES

The series

The word independent is a significant word to someone with cerebral palsy. The slogan of the community is “Life Without Limits.” This motto for a person with cerebral palsy and their loved ones becomes the ultimate goal, which is independence in our lives. There are four main classifications of cerebral palsy:

  • Spastic: 70-80% of the community is in the category with this
  • Dyskinetic: 10-20% of the community are in this type
  • Ataxic: 5-10% of the community have this style
  • Non-CP: about 5%, which means you have cerebral palsy, but someone can hardly see it 

If you are lucky enough (or not), you can have a mixture of two or all three. As for me, I’m mobile with the help of my walker, and am Spactic, Dyskinetic. As much as I can be independent and live life without limits, just like anyone, I have limitations (so part of me doesn’t quite believe in the “life without limits.” It just feels misleading to me); in a way, you do need help in life. Every person–with or without a disability–needs a hand in some way; it’s just about what kind of help a person needs to be independent. It should be “sky’s the limit” or “don’t underestimate us” because we want people to see us for who we are, not by our appearance.

When you have cerebral palsy, there are all kinds of levels of independence. You can have the autonomy of someone who doesn’t need help, then the type of cerebral palsy where you can be independent with minimal support. Lastly, there is the type of cerebral palsy that makes us entirely dependent on other people for help. The type of cerebral palsy that I have means that I can live independently with minimal help. When it comes to applying for this kind of support, it can be  tricky. I have always been caught between a rock and a hard place because I have cerebral palsy, and I need assistance with being otherwise fully independent. Having to ask for help to live independently makes you feel like you can’t be independent or competent to live like other adults. 

Generally, people with a physical or mental disability or seniors who need help with specific everyday tasks use Personal Care Assistants (PCA) services. I knew I had to get a PCA to help me (a Personal Care Assistant/Aide is trained to provide a wide range of services to individuals in their own homes. Still, because I moved on my own right in the middle of the pandemic, I wasn’t sure how that would go; I had to trust that the people who helped me would be a good fit during this time). As much as my parents loved and supported me and did anything for me, they still helped me more than they should have.

After the vaccines became available, I started thinking about getting someone to help by spring. I wasn’t sure how to proceed, but luckily, United Cerebral Palsy had just started a new program and hired an inclusion advocate. The inclusion advocate helps the clients of United Cerebral Palsy live entirely independent lives in the community.

Along with my inclusion advocate, I started working on things to help me be more independent, such as applying for SNAP (food stamps) and looking for and applying to a program that would best fit me for a PCA. Applying for SNAP was a snap (LOL)  (SNAP). Using a PCA took a little more because it involved some research. What kind of help would I need? I had already spent almost a year on my own. 

For me, the central help I need is with heavy cleaning and going food shopping. I’m okay with ensuring the dishes are clean and the daily stuff is organized, but when it comes to heavy cleaning, such as washing clothes, sweeping, mopping, and making my bed, things can get tricky because of my balance. 

The ultimate goal was to make myself independent in the best and safest way possible. Community First Choice was the one that best suited my needs (Community First Choice – CT.gov). The application process was pretty straightforward. This program is excellent because it works on the PCA waiver (Personal Care Assistance | Connecticut)

When the CFC person interviewed me, she was impressed with my independence but could see how fatigued I could become.  A big part of cerebral palsy is becoming quickly fatigued. Every person with cerebral palsy has a level of fatigue; mine can be very severe at times because not only do I have CP,, but I also have psoriatic arthritis (in remission)  Psoriasis – Symptoms and causes – Mayo Clinic). I also have what is known as (Costochondritis – Symptoms and Causes – Mayo Clinic.)  When one of these health conditions acts up, it can debilitate me, let alone allow me to keep up with daily activities. At these times, I am grateful for the help that I have.

It took about a month for CFC to reply that I had been approved for 28 hours a week. The CFC program runs through my insurance, so unless I go over the 28 hours–at which point I would have to pay them out of pocket–all this help is paid for. 

The best part of the CFC program is because they work on the PCA waiver program, I get to pick who I want to help me. There are only two requirements: I can’t be married to the person or be dependent on them. See that either of these things don’t apply to me; I can hire anyone. It would be nice to fill the 28 hours with one person. It would be great, but that would be hard for one person. I have two PCAs, my sister-in-law, and a childhood friend.  It would be nice to add one more, but in time. 

Going through the process of becoming an independent person with a disability (from looking for a place to live to becoming an independent person with some help) has opened my eyes to the challenges of life. Still, there are programs to help people with disabilities be independent with a few good helping hands. 

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

ACCEPTED

OUR BEAUTIFUL CHALLENGES

 “Cerebral palsy is a group of disorders that affect a person’s ability to move and maintain balance and posture. It is the most common motor disability in childhood—cerebral means related to the brain. Palsy means weakness or problems with using the muscles”.  -UNKNOWN

Note: As I write about acceptance, I think about both the ones who have accepted me and those naysayers who have told me that I would not amount to anything because I’m only a disability. It can be so easy to believe in the naysayer rather than the cheerleaders on your side. Those negative people stay in your head, which we feed into. (When it should be the ones who cheer you on that stay in your head!) However, we are human and often dwell on negativity rather than positivity. I want to be able to tell my story in a positive light. Still, I won’t say people who live with a disability aren’t always positive, but it’s also not always negative. Disability or not, you, the person, have to choose how you will accept life.

At times, I didn’t know how to accept myself. Accepting who you are will be easier to share on the outside, but consistently believing in yourself on the inside can take your whole life; it’s a process that needs attention daily. This entry started as something else, but it didn’t sound like the story of acceptance when I reread it. It sounded like me whining about my life. I don’t want the story of my life to sound like that because that is not who I am and what I want to be known for. I’d like my life story to be about how I chose to look at my challenges, how I decided to see myself without a disability, and how life made me see myself with a disability. Having a disability makes you look at life differently. 

The story of accepting who I am should have begun from the day I took my first breath. To the outside, it was, but to get myself took almost half my life.

I’m one of 17 million people who have cerebral palsy. I have talked to and mentored so many people with cerebral palsy around the world. I have read many books and blogs about the cerebral palsy community. I have been to multiple talks and conferences about this disability. I have even been the guiding force behind discussions and seminars about cerebral palsy. I never get tired of sharing my life’s story with cerebral palsy, no matter how often I do it. The more people who know about what I think is one of the most misunderstood disabilities (cerebral palsy), the more the world and people can see that cerebral palsy is much more than the assistive devices we use to make us as independent as possible. It has taken me so long to see that within myself, so how should I expect others to accept who I am if I don’t get who I am? I’ve learned over the years that the key to acceptance starts with yourself. 

My journey of accepting myself started in my mid-30s. My body was being invaded by an autoimmune disorder (Psoriatic arthritis). Psoriatic arthritis is (Psoriatic arthritis – Symptoms & causes – Mayo Clinic.) As anyone with PsA knows, it is an excruciating disorder when you add it on top of cerebral palsy, which, at times, can be very painful. My life was in chaos for a few years. I have published two essays on  The Mighty: 1) What It Is Like Having Both Cerebral Palsy and Psoriatic Arthritis and 2)What It Is Like To Have Psoriatic Arthritis.) These few years were some of the most painful and frustrating ones since I already despised myself because of my cerebral palsy.

I remember lying in bed one night, thinking I was at my lowest point. I felt like I was at a crossroads. I already hated having cerebral palsy, and I always have PsA, so what do I do now? I thought that I needed to accept one of these two disabilities or both. I chose to accept cerebral palsy because I, at some point, believed that the PsA would go away, but the cerebral palsy would always be there. 

I found an online United Cerebral Palsy (UCP) program for adults with cerebral palsy. From that point, my journey to accept who I was began.

Over the last ten years, between UCP and social media, the journey to understand who I am as a person with a disability has had its highs and lows. The disability community is incredible as a whole. However, when I entered the cerebral palsy community on social media, I felt more judged than in the able-body community, and I still do. It’s a community where I think they aren’t heard when they speak their mind. I also think just because they have cerebral palsy, they feel like they know everything about the disability. If you realize anything about cerebral palsy, you understand that there are different types of the condition/disability. So, having cerebral palsy doesn’t mean you mirror another person. While we all have the base of whatever type of cerebral palsy we have, people bring their uniqueness to their cerebral palsy; this is one way that I feel the cerebral palsy community can be judgemental. The other way I feel like the community can be judgemental is that many appear to believe that they are better than each other. No wonder why I feel like the community doesn’t get respect. Part of me thinks that the community doesn’t deserve respect. Still, I end up with myself and the other people in the community who understand that just because you have cerebral palsy doesn’t mean you have been a know-it-all or judgmental to others in the community. I have been doing this for many years.

I was judging not only the cerebral palsy community but also the disability community. I didn’t want to be associated with either community for many years, not that I thought that was better than them. I felt if I were near someone with a different cerebral palsy from mine, I would catch their cerebral palsy. As for not wanting to be a part of the disability, I didn’t think the word disability suited me. I thought disability didn’t decide who I was. I wasn’t sure what word would suit me, but it wasn’t “disability.” For me, I saw the phrase disability as being for those people who were in a wheelchair, which made people feel sorry for them, who saw the world in a negative light because of their challenges. The way they saw life wasn’t the way I saw life. I saw life as a challenge, but I overcame most of those challenges, and that was who I was. Looking back on my life, I know that I was accomplishing something and that those people were just being negative about my disability.

As years passed, my fear of those two words (disability and cerebral palsy) got worse, and then it turned to total denial of being labeled with either word at one time; I won the Yes, I Can award (more about the Yes, I Can award later.)

During my journey of accepting myself, many times along the way, I realized  I still wasn’t accepting myself. It was still up to me, but I was just shocked when I went on social media to read how others with cerebral palsy were living life to the fullest. Yes, I was living my life to the fullest my way, but still, the way others lived with cerebral palsy was just something that I was scared of within myself. I thought about things, but that were people living what I was dreaming of, and I was just living within myself, dreaming about life. 

I feel like there is an unspoken part about this disability that one takes seriously and it’s about the mental health aspect! When it comes to doctors, they only focus on the physical side of cerebral palsy, which is what they need to do because it’s a physical disability. Living with cerebral palsy, I can say most of my mental health issues stem from cerebral palsy. It’s not that we are born with mental health issues because of cerebral palsy; that’s not what I’m saying. It’s well-documented that the community has a high risk of depression, but yet the medical community doesn’t address this area of the community.  

 The cerebral palsy community has a high risk of depression for many reasons. Cerebral palsy is a visible disability to everyone. The sad thing is that the world judges by first appearance, so when you see someone with a physical disability, remember that people judge on what they see at first appearance. I suggest not trying to because you wouldn’t want them judged at first sight if it were a loved one!

For many years, judging on my first appearance was what I was all about, but, at the same time, I didn’t want to be judged on my first appearance. In the end, I was doing the double standard because I wished to change, meaning I didn’t want to accept anyone with a disability, but I wanted people to accept me. 

About four months after I started to put myself out there on social media, I met a guy who not only had cereal palsy but was also deaf from cerebral palsy. (As a Couple With Disabilities, Our Relationship Has No Blueprints (themighty.com).) I never wanted to be with anyone with a disability, but when I met him, I was in AWE because of his story, and we ended up dating for about four years. In our four years together, he taught me much about life, disability, and love. We aren’t together anymore because of distance, Covid-19, and the challenges of our disabilities. It was a challenge at first. I wanted to join a friendship, and he was just not ready to let go. It took a while, but it turned out that we were better as friends. 

During COVID-19, my next stage of learning to accept myself was when I became independent. I moved out on my own at this time. It was during COVID-19 that I faced new challenges that I never expected to have when moving out, but I had no choice but to be trapped in my new apartment.

Other than sitting in my new apartment thinking this wasn’t what my life had come to, I started writing about everything I did and thought about my life with a disability. By doing this, I began to heal and accept who I was and a life with a disability. Writing gave me peace and made me see my disability is not my weakest point at all; it’s my strength- A strength that I might not otherwise have if I didn’t have cerebral palsy.

 It has taken me a long time to accept myself, and I’m still not done because life is constantly changing. Who I am is always who I am, but if I want to be taken seriously in the world and not just looked at as a disability, I have to accept myself. I have learned so much from this self-acceptance journey! It made my life less challenging. I know I will always have challenges; that’s just life. Still, I see now no matter what disability you have or what challenges you have in life, if you resist those challenges, that brings more challenges to an already challenging life.

Disability

WHAT TYPE OF PERSON DO YOU IDENTIFY

OUR BEAUTIFUL CHALLENGES

A few years ago, when I was in a dark place and trying to figure out who I was as a person with a disability, the “Me Too” movement suddenly came out. People say, “If you are a woman, you should get behind this movement. I feel I didn’t fit into this new way of life for women. Being a woman is only one part of me. After seeing how “Me Too” changed how women are looked at, I got thinking. I may be a woman, but if I identify as just a woman, I’m just a woman. As much as I need to say I’m a woman. Being a woman is only part of me.

 Having a disability is a part of me, also. When an individual has a disability, we don’t want to be known as a disability. Still, in a way, we have to let people know we have a disability so we can get the modification we need so we be apart can be a part of life.  I will never deny my cerebral palsy.

 Being a woman with cerebral palsy is one of the significant components of my identity. However, there are many other components of me. I like to picture myself on a painting canvas. Years ago, when I was trying to get out of a dark place in life, I stood in front of a full-length mirror for a few minutes a day for a week or so; at this time in my life, I honestly didn’t like who I was. So, being the person I am, I got in my head that if I stood in front of the mirror and saw the physical reflection and stood there long enough, I might be able to see what people saw in me. After a while, it worked, and I could see everything that made me.

What I saw in that mirror wasn’t just a woman and wasn’t just cerebral palsy; it was so much more. What I saw was what people saw in me, what made me: My kindness, my compassion for others. The strength within me is to work past my challenges and so many other things.  At that moment, I started to see what I thought was my weakness was my strength.

When I have a disability, there are times that I can feel that all I see is the disability, as I think that is the only thing people see in me. In many cases, that’s not the case; there can be a handful of people who will only see me as having a disability, but then I see that there are more people who know that I’m more than my disability. It’s just that sometimes, the negativity wins out more than the positive. It’s just that when I hear something negative about myself, it gets in me, and that’s all I hear. When I keep hearing all the negative ideas about my disability, it gets to me, and I end up in a dark place. 

After I saw who I was in the mirror, I saw what people saw me. People see how strong I am and so much more than my disability and being a woman; that is why I call myself a human canvas. Other than being a woman with a disability. I’m also a daughter, a sister, an aunt, a niece, a friend, a girlfriend, a writer, and more. 

No matter how I identify myself or how others identify me, there is one thing we all have in common: no matter what, we recognize that when we all bleed, we all bleed red.

Disability

WHAT AM I AFRAID OF

OUR BEAUTIFUL CHALLENGES

A question like this is tricky. I shouldn’t be afraid because I lived when I shouldn’t have lived. When I was born, so many people didn’t think I would live. However, I’m human, so I am scared of many things. I’m afraid my fear of my disability will take over, and I will quit living. I’m worried that I will gain so much weight and lose my independence. I’m scared of losing people that I care about. I’m afraid after my parents are gone, none will be there to help me with my life. I fear that I’m so scared of not leaving a mark in the world because people just see me as having a disability. Yes, while disability may be part of me, my disability is not who I am. Disability is just a word. Suppose you take the “DIS” out of disability. In that case, you have “ABILITY.” no matter who I am or who you are, we all have our own unique “ABILITY” to live in a world that is made of all different kinds of uniqueness, and the disability community is just one.

For so long, I was afraid of not being an independent person because of my disability. If I wasn’t going to be independent, it wasn’t going to be because of my disability. It would be because of my stubbornness. I never wanted to accept myself as a person with a disability. There was a time in my life when it was a challenge for me to admit that I had a disability. I wanted so badly to forget the disability and be like my other peers. I was okay with my disability growing up, but I never wanted to socialize with others with disabilities. My family, friends, and teachers would always try their hardest to get me to be social with others with disabilities, but I was so stuber I wouldn’t go near or get close to anyone with a disability; it just got worse as I got older. It wasn’t until I had no choice but to push myself out of my comfort zone and grow up that I forced myself to see what it was like to socialize in a community that I belonged to but was too scared or was being discriminated against in a community that was a part of who I was. I was now more afraid of being in the disabled community, and I was ready to run back to the able-bodied community. 

I was afraid of not being accepted into a community that I never received. When I decided to stand up and be part of it, I thought it would be accessible for the cerebral palsy community to accept. The community just accepting me wasn’t the case. Some people welcomed me, but sometimes, I just wanted to return to the able-body community. I didn’t know the purpose of staying in the cerebral palsy community, but over time, I realized what the purpose was: for me to grow. With every new step I took in the cerebral palsy community, I made myself more substantial and more accepting of a community that I was not accepting of.

It’s been nearly ten years since I took my first steps to accept who I am entirely. Life has fallen into place in the last ten years and brought me to where I need to be. By accepting it, I got what I wanted and my independence. I also got over my fear, which was the fear of who I was.