Tag: cp

“Confessions from Disability Limbo A Commentary on Society” A Book Review

A dear friend of ours wrote a book titled Confessions from Disability Limbo A Commentary on Society. His name is Kevin G Nuñez and he is based out of New Jersey, he is originally from San Jaun, Puerto Rico. Currently Kevin is the Vice Chairperson of the New Jersey Council on Developmental Disabilities. Kevin was born with Cerebral Palsy as well as his twin brother.

The book starts out with a short story, which if you are anything like me, you wish it kept on going. It was from the perspective of a young man with Cerebral Palsy who is working as a CIA analyst providing technical support. One morning he shows up at a friends of his from high schools house one morning to try and help their family. I do not want to give any spoilers away but, trust me, it is worth the read.

Kevin writes from real life experiences. It is refreshing and eye opening to read a book about disabilities from someone who is actually living with a disability.

Each person living with a disability has their own unique experience with their disability. Just because people have the same disability, does not mean that they have lived the same experiences, Kevin and his brother each have had different paths that they have gone down even though the both have Cerebral Palsy.

One of my favorite things about this book is how candid Kevin is about his experience living with a disability. He lived in Puerto Rico until he was four years old and would visit every summer growing up, he talks about how there is a lack of accessibility there and how that now prevents him from continuing to visit has he ages,. which is sad to think about the people who have not been fortunate enough to move to a place that is marginally better with accessibility.

Kevin spends a portion of the book discussing what he would do if he could spend 24 hours in a body that was not disabled and for him, it is the small things that able-bodied people often take for granted.

The most refreshing thing that I have read is when he talks about body image. We do not often see men speaking out about dealing with body image issues let alone men with disabilities.

I recommend reading this book if you want to have a bit of insight on what it is like to live with Cerebral Palsy, or just being disabled. It is well worth the read. If you read it and enjoy it, Kevin has a blog of his own as well (https://advocatekevinnunez.wordpress.com) check it out. He is one of the kindest and funniest people I have the pleasure of calling my friend.

Here is the link to purchase the book https://www.amazon.com/Confessions-Disability-Limbo-Commentary-Society-ebook/dp/B09B81DLZS?ref_=ast_author_dp

Spasms on vacation

Spastic Cerebral Palsy is the most common type of Cerebral Palsy. I have mild spastic CP where my left side is weaker then my right side of my body. I’ve always had stiff muscles and stretches have always helped, but it wasn’t until a few years ago that spasms started to effect me on a daily basis.

I remember the first time they happened vividly. Margaret and I were on our first vacation together in Boston in September of 2019. It was early in the morning and out of nowhere my legs just started flying up uncontrollably. Margaret woke up with me and went down to her car to get a heating pad and Advil to see if it would help because the pain was excruciating. She made a pit stop to grab food from the buffet but ended up dropping the entire bowl of cereal in the elevator, while the maid was in the elevator with her. I will never let her forget it. Anyways, after a few minutes the heating pad and an Advil worked and my spasms went away.

Following that vacation, spasms became a daily thing when my body is falling asleep, waking up, (especially during the winter and stormy weather). How do we deal with them you must be asking. Well honestly they are apart of our nightly routine now. Margaret does an amazing job keeping pressure on my legs often moving with me throughout the night so I can stay comfortable.

Margaret is not an angel, saint, or whatever else you want to call her for getting me through my spasms. It’s something that has become second nature to her and she wakes up with me each and every night to simply remind me she’s right here and that it’s only a few minutes of pain each time and it is not going to last past those few minutes. To be honest, not many people would be built for that, but Margaret has always been.

An Open Letter to Cerebral Palsy

Dear Cerebral Palsy,

For 26 years you have given me a rollercoaster ride on this journey we call life, from being three months premature, to graduating college to finding the girl of my dreams. Believe or not I think having CP has made me the person I am today. 

I don’t remember when I was diagnosed with CP but it changed my life and effects me everyday, from needing help getting dressed, to showering, each day has its challenges. When you have a disability, always try and have a positive attitude and believe that nothing can stop you. Overtime I’ve become more independent from doing most of my dressing with little assistance to learning how to put on jackets mostly by myself. Another piece of advice I would give is always push for independence and do what you know you can do. 

There are days when I feel like giving up, but I know there are always brighter days ahead. CP may slow me down but it can’t take away my love for life. It wasn’t until college that I opened up and got out of my comfort zone. College was the first time I didn’t have an aide with me so I had to ask people for help. It ended up being the best four years of my life, CP and all. I went to football games, went on trips, anchored countless hours of radio broadcasts for my college’s sports teams. A disability will only stop you if you let them, you are in control. 

Now to my favorite part, talking about my favorite person. As I said before people always asked me: how do you put yourself out there? In college everyone I liked was taken or they just wanted to be friends. I ended up on being on way too many dating apps and was convinced my CP made me undateable. That was until Hinge and coming across a beautiful girl who I knew I would do everything to keep. My CP was never a big deal to Margaret and she recently told me “you are so much more then your diagnosis.” Each day we take on everything together and often forget I have CP. I’m blessed to say at 26 I’ve found what people look for their whole lives. To anyone who feels like their disability has made them undateable, don’t give up, there is someone out there for everyone.

Cerebral Palsy will be with me for the rest of my life, and it is up to me to decide how much I will let it effect me. I am blessed with an amazing support system, who are always there through minor and major things. 

To those reading this, if you take away one thing, let it be this: always continue going forward, never stay in one spot, otherwise your disability wins. Put yourself out there, otherwise your disability wins. Swipe right or match with that guy or girl you think is cute, it could be the best thing that ever happens to you, otherwise your disability wins. Never ever give up even when you feel like you have hit your lowest point, otherwise your disability wins. 

Love, 
Charlie