Disability

LEARING NOT TO FEAR MYSELF

OUR BEAUTIFUL CHALLENGES

Reflective, intimate, emotional, detailed

Fear has always been a quiet companion in my life. Some people meet fear like an opponent they can outrun. Others meet it like a wall that keeps them from taking another step. I’ve been both of those people. Living with cerebral palsy meant learning early that my life would come with challenges—and that each challenge would come with its own brand of fear.

I used to believe fear was something that happened to me. But looking back, I see that fear was also something I held tightly. It was familiar. Predictable. It felt safer to fear the unknown than to walk toward it.

The biggest fear I carried was one no one talked about. I was afraid of people who looked like me—people with cerebral palsy. I convinced myself that being around others with CP would somehow make mine worse. I didn’t realize that what I feared was seeing myself clearly.

That fear cost me years of connection, friendship, and belonging.

And then there were the school years—where my fear of not fitting in pushed me forward. I wanted so badly to be one of them, the “normal kids.” I tried to outrun my own body, my limitations, and the feeling that I was somehow on the outside looking in. But the truth is, the only person who feared me… was me.

It took time—years, really—to stop fearing my own reflection. To stop fearing the community that was always waiting for me with open arms. When I finally let myself be curious instead of afraid, I discovered something beautiful: I wasn’t alone. I had never been alone.

Now, I can look at fear with clearer eyes. It still shows up—it probably always will—but I no longer hand it the steering wheel. I know now that the fears we run from are often the ones we need to turn toward. Because on the other side of that fear is a part of ourselves waiting to be reclaimed.

Disability

PROTECTING YOUR PEACE IN A NOISY WORLD

OUR BEAUTIFUL CHALLENGES

“Peace doesn’t mean life is quiet — it means finding calm within the noise.”

Lately, it’s been challenging for me to write non-fiction. I’ve been doing more fictional writing because it takes my mind off what’s going on in the world. I’ve also been spending more time meditating — really, doing anything that helps me focus on something positive.

There’s just so much happening around us right now. So much information being thrown at us all at once, so many opinions and points of view. It can be hard to know what to think or where to stand. Sometimes, I even question myself — wondering if I’m being influenced by one side or the other. That’s how I feel about life in the world these days.

But this isn’t a blog about which side of the aisle I’m on, or an attempt to persuade anyone to see things my way. Because, let’s face it — that’s what makes the world go round. If everyone thought the same way, it would be boring. Whether we agree or not, we’ve all seen how what’s happening in the world affects each of us in one way or another.

For me, it’s about finding ways to protect my peace — to keep from being consumed by everything going on around me. When too much is coming at us all at once, we have to learn not to force ourselves to take it all in.

Here are a few simple ways I’ve found to quiet the noise:

Meditation: After a long day of listening to or scrolling through the news and social media, unwinding with meditation is a great way to decompress. It doesn’t have to take long — even ten minutes can help clear your mind and reset your energy.

Reading: A good book can take you anywhere you want to be — far away from the chaos of the day.

Music: Turn it up and dance out the worries. There’s something freeing about moving to your favorite song and letting the stress melt away.

Exercise: Sometimes, all you need is to sweat the day’s worries out. A walk, a stretch, a workout — anything that gets your body moving can do wonders for your mind.

I could make pages upon pages of ideas to help clear your mind from everything you hear throughout the day, but it all comes down to one thing: protecting your peace.

We live in a world where information never stops — it’s loud, fast, and sometimes overwhelming. But you have the power to step back. You can choose when to listen, when to unplug, and when to breathe.

Taking care of your peace isn’t ignoring the world; it’s preparing yourself to face it with calm and clarity. Because when you nurture your inner peace, you see the world more clearly — and you respond with love, not fear.

Disability

FIRE UP MONDAYS

OUR BEAUTIFUL CHALLENGES

Last week, I shared about My Path to Peace Starts at The YMCA. This week, I’d like to discuss Fire Up Monday. Mondays are a choice between two very different classes: Pilates Mat or AOA (Active Older Adult). Both occur simultaneously, and each offers its own benefits.

The AOA class is chair-based, but don’t let that fool you—it’s no easy workout. It combines cardio, weights, and stretching, and whether you’re sitting or standing, you’re moving your body in ways that make a difference. Out of all the classes I take, AOA is the one that gets my heart rate up the most. I’ve been going off and on for a while, and every time I do, I feel the impact. The only downside? It’s tough to get into because spots fill up so quickly. I wish I could take it more often.

The other option is Pilates Mat. I discovered this class almost by accident. One day, I came to the YMCA just to use the fitness center, but I ended up there early and noticed the Pilates class about to start. A trainer encouraged me to ask the instructor if I could join, and just like my Tai Chi experience, she welcomed me right away. She was quick to adapt the exercises so I could participate. Instead of being on the floor, I sit in a chair with a ball behind my back and between my knees to work the same muscles as the others on mats. After that first class, I felt like I had just finished a full hour of physical therapy—I could hardly move the next day, but in the best way.

I genuinely enjoy both classes. Each one challenges me differently, and both bring unique benefits to my mind and body. Mondays may start out tough, but they always leave me feeling fired up.

Mondays remind me that strength comes in many forms. No matter which class I take, I walk out stronger than when I walked in—and that’s what keeps me fired up.

Disability

MY PATH TO PEACE STARTS AT THE YMCA

OUR BEAUTIFUL CHALLENGES

Fridays have become my favorite day of the week. At the YMCA, I get to spend two hours in Ta-chi and meditation—a time to let go, breathe, and recharge from everything the week has placed on my shoulders. Living with cerebral palsy doesn’t take away the fact that I face the same stressors and responsibilities as anyone else. In fact, stress can weigh heavily on me because it can cause my CP symptoms to flare up. That’s why this Friday routine has become such a vital part of my life—it’s my anchor, my reset button, my peace.

When I first heard about Ta-chi, I never imagined I would be able to participate. But with the proper modifications, I found my way in. I sit in a chair, moving as best I can, and still receive the same benefits as anyone else—just in a different way. By the time class ends, my body feels so light and relaxed, like a bowl of jello, and my mind feels clear.

What makes this journey so special is the support I’ve received. Many instructors have been willing to adjust the movements so I can fully take part. My Ta-chi instructor, especially, has been a true gift. She always makes sure I have a version of each movement that works for me. Sometimes, she’ll even pause to show me an alternative before continuing with the class. She recently added a second Ta-chi and meditation class that’s more chair-based, blending gentle movement with mindfulness. To me, it feels like pure balance—movement for my body, calm for my soul.

Fridays at the YMCA remind me of a powerful truth: wellness looks different for everyone. What matters most is finding a way to nurture your body and spirit—no matter your limitations, no matter your challenges. With creativity, support, and persistence, peace is always possible. And if I can find it in my own way, so can you.

Disability

“Living independently with a disability is not easy, but it is absolutely possible—and it’s worth it.”

OUR BEAUTIFUL CHALLENGES

For years, I dreamed of saying the words: “I live on my own.”
 Now, five years later, I can proudly say that I do—and for the most part, I couldn’t be happier.

Independence with cerebral palsy is not easy, but it is possible, with a team behind you helping and cheering you on.

Like any adult, I have bills to pay, housework to do, and never enough money or time. But with a disability, those responsibilities multiply.

For me, “keeping my cerebral palsy in check” is part of daily life. That means:

  • Managing stress so it doesn’t physically overwhelm me and knock me down.
  • Watching my diet and health so I can stay strong and independent.
  • Reminding myself to be consistent, because slipping backward is always a risk.

One of my most significant responsibilities is supervising my PCAs (personal care assistants).

On one hand, I’m proud of this role. Not every person with a disability gets to manage their own care, and having that control is empowering.

On the other hand, it can be stressful. Picking a PCA is never easy. I find myself asking:

  • Are they the right fit for me?
  • Can I trust them?
  • Did I make the right choice?

What I’ve learned is this: you have to be true to yourself. If you’re not honest about your needs, the arrangement simply won’t work.

Yes, living independently with cerebral palsy—or any disability—comes with challenges. But it also comes with pride, growth, and freedom.

The best advice I can give is this:
👉 Be yourself.
👉 Choose people who support your independence.
👉 Always put your safety and well-being first.

Because independence is not just possible—it’s worth it.

Disability

SPEEKING TO MYSELF WITH KINDNESS

OUR BEAUTIFUL CHALLENGES

The way I would speak to myself with kindness will tell myself that I’m who I am. I have my mind, I can make my own choice, and I can live independently. I may have cerebral palsy, it may limit me at times, but it’s not who I am. My disability is only a disability; it’s a part of me just like my curly hair. Yes, I will never use my disability as an excuse for who I am. I have chosen to speak to those parts of myself with kindness, as much as I have spoken negatively in the past.

It has been and still is a challenge to speak to myself with kindness. Having a disability can be seen as a weakness. At this time in my life, I view it as a strength, but it wasn’t always this way. I grew to see that my disability was my strength. Until I learned to accept who I was, talking to myself with kindness was the one thing I hated doing the most. 

The negative talk from people paralyzes my sense of self. It wasn’t until I was so unhappy with who I was that I had an awakening of how if I kept these negative thoughts and talked myself into such a negative way, it stopped me from living. So, how did I change my thoughts to be kinder to myself?  

It took decades to destroy myself with negative talk, so why did I think it would take me a snap of a finger to switch my thoughts to positive ones?  It has taken me years to start changing my thoughts to a more positive outlook, so I can treat myself with the kindness I deserve. I only saw the weakest because of what people were filling my head with. I understand that other people were also telling us positive things, but we all know it can be hard to accept both the positive and the negative. Unfortunately, if you had to pick one over the other to stay in your mind, most likely it would be the negative things that people tell you that stay with you.

When those negative comments from people get into your mind, it can be easy to force yourself. All these negative thoughts detract from who you are and who you aspire to be. It can break how you speak to yourself. It also makes you believe you’re worthless. That is how I felt about myself.  

And how to treat myself with kindness and gratitude for who I am. “Romo wasn’t built in a day.” It took me years to destroy myself; why would it take me one day to rebuild? It took me years to rebuild myself, and still today, I  don’t think I’m 100%. 

I have to face my reflection every day. I have to remind myself every day that I am strong enough to face life.  When living with a disability, there are days I just want to let the disability take over. There are days when I know that it’s going to get more challenging as I get older, and I don’t want to be the teacher the rest of my life. However, I want to live life to the fullest, and if that means practicing kindness with myself every day, then so be it.

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

PAVING THE WAY

OUR BEAUTIFUL CHALLENGES

When you have a disability, you miss out on a lot in life, but you also gain a lot too. You’re a part of things that you might not be a part of if you weren’t disabled. I am lucky enough to be part of a community that is dedicated to helping and paving the way for the future generations of people who have disabilities. I feel fortunate to be born at a time in life that I was blessed enough to have witnessed two laws that made it possible for me and others with disability to be treated like others: The 504 Act of 1973 and the ADA Act of 1990. 

The 504 or Rehabilitation Act gives people with disabilities the right to be in public, including in public schools and public buildings, which must be made accessible for us to enter.

Although the 504 Act gave us the right to be in public, the ADA Act ensures that all public buildings are accessible (including wheelchair ramps, working elevators, lowered curbs, and accessible bathrooms). To this day, all public buildings must be ADA compliant. This bill was signed into law in July 1990, which is why July is recognized as Disability Pride Month.

As much as it made it possible for me and others with disabilities to be among society, it took a while for society to realize the disability community is here to stay. Being so young at the time, I didn’t fully understand or appreciate the impact of my presence. I was making it easier for the next generation to be understood. 

My mother was a teacher’s assistant in the school system I attended. When I was in school, I recall the frequent arguments my parents had so that I would have a fair chance of the same experience and education as all the other students. The teachers and even the lunchroom monitors didn’t think I had the right to be there. The teachers thought I was just there, taking away resources from students they felt were more worthy of an education because they were non-disabled. My parents fought for me to be a fundamental part of the school, because even the parking lot wasn’t accessible. But once my mom became a teacher’s assistant and advocated for me, the teachers who initially discouraged me all changed their tune. Even though the law protected my right to be there, there was no law to change the minds of teachers who were set in their ways and stuck in the past.

I recall my parents contacting the state to report a shortage of accessible parking spaces, curb cuts, elevators, and ramps. The town was cited for not being accessible and had to make necessary upgrades. When I was in junior high school, classes were delayed for two weeks so that an elevator could be installed properly.

Hopefully, the current disability community and future generations can enjoy these accommodations without having to fight for the same rights everyone should have. 

Nowadays, looking at what disabled kids have in school humbles me. I know that I was one of the pioneers to accommodate kids like me, even those who weren’t born yet. 

It inspires me to keep fighting. If something isn’t accessible now, I speak up, keeping the same spirit that my parents had for me. In a way, kids with disabilities are all our kids, too, and we have a responsibility to advocate for them. I’m not just a student but also a teacher. I teach people how to accept people with disabilities and how to treat us (hint: we’re just like everyone else!)

Disability

EMBRACING THE WEAKS PARTS OF MYSELF

OUR BEAUTIFUL CHALLENGES

I have been working on myself for the last couple of months. I know that the more weight I have on myself, the more the CP takes over, and the less independent I become. I hate to admit it, but I did go on a drug to help with another health issue, and it helps with my hunger craving. While this isn’t the end-all to my weight issues, being on the drug has slowed me down from overeating.

My weight is one of the weaker parts of who I am. I want to acknowledge and improve the areas of myself that need improvement, and strengthen them. My cerebral palsy was the weakest part of me. I thought I was stuck feeling that way for the rest of my life. Then, something clicked in me: If I befriended the weaker parts of myself, I could start to trust and embrace them. The first place to start was my disability. I had to merge who I was with who I wanted to be. It took me most of my life to realize that I had to overcome my challenges. Once I found strength, I started to feel free. By embracing my disability, I became best friends with this side of myself. I would now like to become friends with my weight.

It didn’t take overnight to become friends with my disability; it was a long process, just as it will be a long process to be comfortable with my weight. I know I need to be a healthy weight to help me maintain independence. I have lost a small amount already because I can get dressed better and my clothes are more comfortable; this is a small step. Steps are better than a big leap because no matter how long they take, they build the foundation for the outcome.

After building the foundation for losing weight, I also need to create a foundation for living on a budget. Life is getting so expensive, and like so many on disability, I live on a small budget. 

I have never been good with money. The next diet I need to go on is a financial diet. I’m now trying to learn how to make a budget that I can stick to. It has been hard because it means cutting out luxuries that make me feel happy, like going out to lunch or getting an iced hot chocolate. Although I miss these things, the real reward is that I’m saving money and I’m cooking at home, making healthier choices.

It’s not just about one thing here and there, but about all of these things added up. Every day that my clothes fit better and I have more mobility is a success. Every day that I can enjoy a walk (for free) or cook a meal at home is a success. Over time, all of these small victories add up to give me control over my life.