Tag: AWARENESS

 “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.