Tag: HEALTH

Disability

HEALTHY YOU, MORE INPENDENT YOU

OUR BEAUTIFUL CHALLENGES

I have been working on my weight and mental health for the last few weeks. I have also been going to a nutritionist for the previous few months, and it has been going well. But, I can do a lot better.  When you have cerebral palsy or anything else that impairs your mobility, the less you weigh the better your mobility becomes. I have been battling my weight for what seems to be my whole life. I’m now at the point where if I don’t do anything about it, I’m going to lose my mobility, which means that I will lose my independence. When you have mobility impairments, your hopes and dreams revolve around becoming independent, no matter how that looks for you. 

For many people, independence means living alone, with or without PCAs or aids. For others, independence means getting to live their own life while sharing a home with family members. However it looks, having as much mobility as possible can enhance how much you’re able to do.

I have always been independent, and my family and friends have always encouraged me to do things for myself when I can. Four years ago, that independence became the ultimate freedom when I moved out of my family house and I started living independently in my own place. Living independently has always been my ultimate goal. Now, to keep my independence, I need to be in shape physically and mentally.  

My independence looks like having PCAs five days a week to clean and help maintain the apartment. I have a medical alert bracelet and use accessibility programs like Siri and a video doorbell to help me along the way. I also have an accessible shower that’s adapted to my needs. I take public transportation when I need to get out, and make the most out of accessible vehicles that can accommodate me. 

Moving out during the pandemic lined up with new ways to be independent even with limited mobility. We saw a surge in programs like DoorDash and curbside pickup. People also began to socialize via video chats, bringing the world to us.

For the first year and a half to two years, I was shut in because of COVID-19. This was one of the best times of my life. When I say it was the best time of my life, I don’t mean because the world was in crisis. I just mean that the world became more available to us at the touch of a keyboard.

Now that Covid isn’t on the news all the time, people talk about positive changes that came from it, including the accessibility of food delivery and pickup options, as well as maintaining video chat with loved ones and friends. I’m a silver linings person, so I agree. 

But like with all good things, there are risks. With all the easy access to food, it’s easier to get nutritious food, but it’s also easy to get the junk food I’m craving with a few swipes on my phone. However, I was doing well for the first two years, and now I need to get back on track in the new year. I was able to lose forty-fifty pounds at the start of the pandemic. Now, I’ve put that back on with interest.

I don’t want to give up my independence in favor of yummy snacks like donuts and chips and popcorn chicken. I’m also dealing with the fact that I’m more social now that the pandemic is over, and when I get home, I’m too tired to meal prep, so I grab what’s quick and usually deep fried.

I need to balance my independence with healthy eating and make meal prep a priority. My independence is who I am. I’m at the point where I’m the only one who can help myself with eating the right things. I am trying, but I know I can do better. I have lost close to ten pounds in the last month. I have also been going to a nutritionist. I like going to her even though I usually don’t like visiting a nutritionist. This nutrition is just there to listen and make goals with me, and that’s what I want because she is not forcing anything on me.

I need to force myself to eat better. I know I can sometimes get lazy and don’t want to make the effort, but I need to do it so I don’t lose my independence. That is the one thing in my life that I worked so hard to gain and that I don’t want to lose. In my life, I have worked so hard to overcome so many things, but for some reason, losing weight is probably the hardest thing I have to overcome. I have overcome weight before. To lose weight, I needed to work through this block in myself that says that I can’t do this. 

I know what will happen to me if I don’t lose weight, but I also know what will happen to me if I do lose the weight and know what happens if I keep gaining weight. If I keep gaining weight, I will lose my independence. I will have to rely on more people for help; I will be in a wheelchair or worse. If I do lose weight, I will gain more independence. I won’t have to rely on others that much to help me.

Everytime I lose weight I get obsessed with number on the scale. At this point in my life, it’s not the number I should be obsess over. It’s about mobility and range of movement.

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.

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.

Disability

WHAT IS INTERAL ABLEISM?

OUR BEAUTIFUL CHALLENGES

Now that I have discovered what ableism is and how it relates to my life, let us break down what internal ableism is. A  person consciously or unconsciously believes in harmful messages they heard about their disability and applies themself.

I can think of internal ableism in two ways. Internal ableism is what people have put upon you,  saying you can’t do this or that in life and questioning if you can do something. Then there is the internal ableism you place upon yourself about what you think about the community you belong to.

First, let’s take the internal ableism that people place upon you. My PCA said I was slacking off on my activities and more tired. Then she asked if I could live on my own. When she said this, it upset me. I didn’t want to tell her at the time, but I felt she was ableislizing me and making me think that I wasn’t capable when I had been living on my own for almost three years and the first year and a half was all on my own because of the pandemic. 

She watched videos of others with CP and felt like I was not as independent or pushing myself as much as they were. It is hard for anyone to understand that no CPs are alike and that everyone with CP has their limits and internal ways of pushing themselves. 

I have been fighting this all my life. For many years, I have internalized these assumptions put upon me about having a disability and cerebral palsy.

At this point in my life, I shouldn’t feel this way or let other people make me feel this way.

Now, to the internal ableism that I placed upon myself.

For many years, I was scared of my disability and socializing with anyone in the cerebral palsy community. If I associated with others in the cerebral palsy community, I might not have internalized my fear of the cerebral palsy community as much as I did.

When I was very young and going for physical therapy at the rehab center, feeling if I went near others with more involved CP than I had, I would somehow catch their CP. Growing up, I had a group of friends with disabilities, and I was okay with them.  

As I got older, the internal ableism about myself and CP only grew more aggressive. I was in college, and others with CP would come up to me and want to be friends or ask me on a date; however, I would just run the other way, not wanting to have anything to day with another person with CP. I would make every excuse to say I didn’t want to get to know the person. When the truth was, I wasn’t comfortable with who I was, a person with a disability.

The way I felt about myself and my disability was just getting worse over time. Family and friends would say I should change my outlook on my disability, or else I  would not get anywhere. 

It wasn’t until I got hit with an unwanted disability. At 35, I ended up with PsA (Psoratic Arthritis). When you are born with a disability such as CP, you hope you don’t have any more challenges with your health, but unfortunately, when you have one disability, it doesn’t stop you from getting other health issues. When I developed PsA, I wasn’t sure where my life was going.  

One night,  I was at a fork in the road; if I didn’t pick up my life, I would not return from a dark place.  Looking at my two disabilities now, I needed to accept one. I knew the PsA would go away at some point, but the CP was, is, and will always be a part of me. That night, I began my journey to discovering who I was with CP. 

After many years of internal ableism, my disability I taught myself that just because my disability makes me seen as different, my disability and what people say or think about me shouldn’t stop me from being who I need and want to be.