Understanding the complications of Hydrocephalus

Hello, Jhana’s supporters! It’s your disability advocate and writer, Jhana. I started a new class on Tuesday and have nine more classes left until graduation. I am so excited! I am still working on my book, but it’s taking a while. I don’t know exactly when I’ll release it, but it’s definitely coming.

September is Hydrocephalus Awareness Month, so I want to talk about what hydrocephalus is, the different types, and my experience with it. I can only speak for myself and my hydrocephalus. 

What is Hydrocephalus?

Hydrocephalus is an accumulation of cerebrospinal fluid (CSF) within the ventricles of the brain. The buildup can increase pressure inside the skull, leading to various physical and neurological issues. 

Hydrocephalus can be congenital, meaning it can be present at birth, or it can develop later in life due to an infection, injury, or tumors. 

Common Complications Associated with Hydrocephalus

Hydrocephalus can come with a range of complications that affect both the brain and overall health. The complications will vary depending on age and the severity of the condition. 

Common complications can include developmental delays in children, learning disabilities, memory problems, and physical coordination issues. It can also lead to vision problems.

Neurological Impact of Hydrocephalus

The neurological impact of hydrocephalus can be severe. The pressure of hydrocephalus can damage brain tissue, leading to cognitive impairments and emotional difficulties. For example, people can experience problems with attention, problem-solving, and executive functioning. Hydrocephalus can also cause emotional and behavioral changes, such as mood swings, irritability, and, in some cases, severe depression. 

Physical Symptoms and Challenges

Hydrocephalus can present in a lot of ways. Common signs include headaches, nausea, vomiting, and balance problems. In infants, it can cause large head size, bulging fontanelles, and a downward gaze, known as ‘sunsetting eyes.’ 

Adults and older children may experience difficulty walking, urinary incontinence, and decreased mental function. These physical challenges can significantly affect daily life, causing individuals to require ongoing support. 

Long-Term Management and Treatment Options

In most cases, surgeries are required to manage hydrocephalus. The most common one includes inserting a shunt system that releases to another body part. This is the kind that I have. I have a VA shunt, and my tube goes from my head to my abdomen. 

Another option is endoscopic third ventriculostomy (ETV), which is a procedure creating a new pathway for CSF flow. Long-term management can include regular monitoring and follow-up care to address any complications or shunt malfunctions.  

My Hydrocephalus Story

I was born with Hydrocephalus as well as Spina Bifida. However, since September is Hydrocephalus Awareness Month, I want to focus only on this condition.

I weighed 2 pounds and 3 ounces at birth, and I also arrived two months early. Before I was born, the doctors gave my mom and the rest of my family the worst-case scenario. They said I wouldn’t be able to walk, talk, and essentially make it through life. My shunt was inserted when I was seven months old, lasting for 26 years. Then, I had to have a shunt revision in 2016 since my shunt stopped working. I was very lucky. The doctor said at least eight months’ worth of water (Hydrocephalus) wasn’t properly drained. If a few more months passed, I would have died. So I was very fortunate. Because of this disability, I have a learning disability and have to be taught differently.

If I were to give someone with Hydrocephalus advice, I would tell them not to stop fighting. You never know the outcome and how things might turn out. I would not change my life for anything or anyone. Just because you have Hydrocephalus does not mean you can’t do what you set your mind to. For example, I am a published author, and I am in school. I have a GPA above 3.0, and I graduate next year. So, everything’s possible.

Via Image Google

Conquering Embarrassment while Living with a Disability

Hello, Jhana’s supporters! It’s your disability advocate and writer, Jhana. I hope you’re all doing well. 

In this article, I want to talk about the embarrassment of having a disability when you’re around your family and how you can cope with that embarrassment. 

Understanding the Embarrassment of a Disability

Embarrassment can stem from a lot of sources when you live with a disability. Social stigma and misconception can play a role, leading individuals to feel self-conscious or ashamed of how their disability affects them. These feelings are a natural response but don’t make you less of a person.

On Saturday, I went to my nephew's second birthday party. Everything went great, and I had a great time with my family. I loved seeing my nephew smile, which brought me lots of joy. 

Finally, it was time to go home. My brother and sister-in-law drove up and waited for Rob and me. As I walked down the stairs, my little sister helped me because I had a tough time. I felt light-headed as I hit the last step. It was really hot, and I was sweating badly. 

Then, I needed help getting in our van. I tried every way to get in. First, I tried stepping up to the van. Then, I tried scooting my butt up to the seat. I even tried to put my knees on the van’s floor to lift myself to the seat, but nothing worked. After 10 minutes of sitting on the van floor, Rob helped me walk to the curb. I was still dizzy and had difficulty walking, so my brother and Rob were helping me walk towards the van, ensuring I made it inside before we left. My brother turned the AC directly towards me so I could cool down. That worked a bit, but I still felt dizzy when we got home. 

Your disability can contribute to embarrassment if you don’t accept your faults and don’t think positively. But if you understand your difficulties, you won’t feel embarrassed about what you can’t control. 

Building Confidence Through Self-Acceptance

Self-acceptance is an excellent step in building confidence and not feeling embarrassed when unforeseen circumstances happen. Accepting your disability for what it is can be empowering. My other half often says to me, “Your disability is not who you are; you make who you are.” This goes to say that you should acknowledge your strengths even though you have a challenging disability day. That's just it: It’s just another day that your disability has a bad moment. Like many say, “I’m having a bad Spina Bifida day.” 

You should practice self-worth by being positive about your disability. It’s also a good idea to cultivate flattering self-talk so you can embrace your unique qualities. Another thing worth doing is practicing self-confidence as often as you can. This shift in mindset can improve how you look at yourself and help you respond to challenging days more effectively. 

Practical Tips for Handling Awkward Situations

It’s nearly impossible to avoid awkward situations. So, arming yourself with helpful strategies might be beneficial. For example, you can practice responding to others when you have embarrassing moments. This can reduce anxiety and help you be comfortable with your interactions. 

You can also use humor as a way to cope with embarrassing moments. It’s okay to make light of an awkward situation and set boundaries. That way, you can let others know what makes you comfortable and what doesn’t.

Leveraging support Systems and Resources

Support systems like friends, family, and disability advocacy groups are crucial. They help support you emotionally, giving you a shoulder to lean on. Personally, I don’t ask for help because I usually get easily embarrassed. So, I’m still working on it myself.

There are so many other resources you should also take advantage of. These include support groups and online communities, among others. These resources can guide you and introduce you to others who share your difficulties. 

Celebrating Personal Milestones and Growth

You should celebrate your achievements, no matter how big or small, as it leads to a more positive outlook on life. You should applaud your progress even if no one else does. 

Lastly, acknowledging your growth can boost your self-esteem and motivate you to strive for your desired goals. Every milestone is an opportunity to try harder, so keep being determined.

Via Image Pexels

Overcoming Obstacles: Finding Love with a Disability

Hello, Jhana’s Supporters! It’s your writer and disability advocate Jhana back with another article. I will try to write and upload an article once a week. I will publish my articles every Thursday at 10 AM or 1 PM HST and write my articles on the weekends. The reason behind this change is that I’m usually busy with school on weekdays and don’t have enough time to write. Coming up with a title is easy, but the actual writing is hard. This is why I’ve also decided to look for content on HubSpot as a guide and rewrite it to make it my own. I hope that will help me with writing inspiration every week.

Today I want to talk about how you can overcome obstacles while finding love with a disability.

Challenges of Dating with a Disability 

Dating is always challenging, but it can be even more complicated for those with a disability. Having a physical disability has its own challenges. For example, you might not feel like being sexually active or you might feel insecure because of your physical appearance while being sexually active. Individuals with disabilities often face a lot of stereotypes and discrimination that can change their dating experiences. The fear that you might be discriminated against because of your disability can stymie your willingness to open up to potential partners. There’s also the issue of actually telling your partner about your disability and when it’s the right time to do it. It takes courage to tell your partner about your disability. It’s also the one with a disability who will need to educate their partner about their struggles. 

Building Confidence and Self-Esteem while Dating with a Disability

Developing confidence and self-esteem takes time and practice, especially when you are in a relationship with someone who has a physical disability. Focusing on self-worth involves strength and understanding that love has no limitations. That is what I am learning in my relationship.

My other half told me he doesn’t care about physical appearance but inner beauty instead. He said, “Yes, women can have beautiful faces, but if their hearts don’t match that, they are really ugly.” For a while, I did not get what that meant. But now I realize he meant this: “A face can change and be wrinkly, but a beautiful heart will always remain the same.” So, it’s about embracing a disability.

Another thing I’ve learned is how beneficial couple’s counseling can be for a growing relationship. It fosters communication and understanding of each other's needs and desires. Additionally, self-assurance and self-advocacy are crucial in a relationship ― expressing your needs and desires will help your relationship grow stronger. That said, if you communicate well with your partner, you will learn about them. This will also allow you to set healthy boundaries. Here is an example: For years, my other half and I surrounded ourselves with people who only cared about what he wanted. People would always ask me how Rob was and not how I was. 

One time in church, another woman once tried to take him away from me because of my physical disability. She used to flirt with him and follow him around like a lost puppy. One time, this girl stuck her ass in Rob's face when he was trying to eat lunch. I did nothing. Neither did he. He used to flirt with her too sometimes. It was about how he looked at her and the way she behaved. She was beautiful and thin with two children. But she had a husband, which made this whole thing worse.

We were always fighting about her. I was jealous, and it showed. I didn’t see it then, but my whole attitude changed. I kept having panic attacks and always felt like he shouldn’t be with me because I have a physical disability while he has an invisible disability.

When COVID-19 hit and after two years of putting up with that, Rob and I decided to save our relationship. I tried talking to the pastor, but he said I was exaggerating. So, we stopped going to church. We left and haven’t looked back. 

Discriminating against someone with a disability doesn’t only include verbal insults. Discriminating against someone can be silent, like walking away when someone with a disability tries to sit by you, flirting with a person because their partner has a disability, or giving you a bad stink eye for no reason.

The Role of Communication and Honesty in a Relationship

During that time, I kept my anger inside. I fought with Rob all through church, and after a while, everyone noticed. I couldn’t keep my feelings hidden anymore. Being in that environment was toxic for my relationship. That was when I found out how helpful couple’s counseling is, and I encourage everyone in a committed relationship to seek help if they want or need to. A civil conversation will help your relationship grow, and you will understand what you and your partner want. 

Additionally, the resources I’ve mentioned will help you better understand your relationship. You should find someone who will always listen to you without judgment. Besides couple’s counseling, individual counseling can also be beneficial. That way, you can each work on your feelings on your own terms. If you feel comfortable, support groups are also an option. Personally, my fiancé and I don’t go to support groups, but that doesn’t mean there’s something wrong with them; they’re just not for us. 

At the end of the day, noticing one's faults can empower individuals with disabilities to overcome barriers and have a better relationship with their partner.

Image via Pexels

Breaking Barriers: Our Journey of Unconditional Love and Disabilities

Hello, Jhana’s Supporters! It’s your writer and disability advocate Jhana. I’m sorry for posting so rarely recently. To be honest, I’ve been having writer’s block. Unfortunately, it’s very common for writers and other creative people.

Now that I’m getting back into the writing groove, I will try to post articles once a week. I am still in school and graduate with a BFA in Creative Writing next April, so studying takes the bulk of my time. Luckily, time flies, so the quicker this year goes, the faster I’ll graduate. Now, let's get into today's blog. 

Today, I want to talk about what it’s like living with a disability and being in a relationship. Each person has different opinions about their disability and being in a relationship. So, I want to be clear that I’m talking about my relationship with my other half. Generalizing would be unfair to others with disabilities who surely have different experiences.

Having a relationship of any kind can be challenging. But having a relationship when you have a disability comes with its own struggles. It can be you who lives with a disability, your partner, or both of you. But in this case, I will talk about having a relationship when you both have a disability. 

Physical Disability vs Invisible Disability

First, let’s start with defining the difference between physical disabilities and invisible disabilities. 

Physical disabilities limit a person’s ability to do things like walk, talk, hike, climb the stairs, carry items, and lift things. A person with a physical disability may also have learning disabilities, which means they might need to be taught in a different way than everyone else. Their thought process is a little slower than others. 

Invisible disabilities, also known as non-apparent or hidden disabilities, aren’t visible to the naked eye. These are physical, mental, or neurological conditions that you can’t really see. Someone with hidden disabilities can have trouble moving, speaking, and walking, but the full extent of their disabilities often goes unnoticed.

Both are very valid disabilities. Unfortunately, our society only views physical disabilities as more worthy of our support and attention. Many people consider these to be more “believable” than invisible disabilities. 

True Love vs Unconditional Love

When discussing disabilities in relationships, it’s also important to differentiate between true love and unconditional love.

True love means loving someone regardless of physical intimacy. It can also mean understanding your partner’s wants and needs. Unconditional love, however, means loving someone with no limitations. 

My fiancé and I met on Facebook. He was living in Massachusetts, while I was in Hawai’i. When I told him about my disability, he immediately looked it up. I was worried that he would want nothing to do with me after learning details about my disability. Boy was I wrong. Some people told him he shouldn’t come to Hawai’i to be with me because he wouldn’t know how to handle my spina bifida. They thought he would have to take care of me like a doctor cares for patients. But that’s what unconditional love means: loving someone regardless of their disabilities. He came to Hawai’i four months later. It’s been 6 years since. 

How people treat me and my fiancè 

Because I have physical disabilities and my fiancè has a mental, or an invisible or hidden, disability, they don’t think we should be together. Most people who look at him don’t believe he has any disability because of how good-looking he is. He’s also able to do more things than I can with my physical disabilities.  

People have tried to break us up before, telling him about other girls without any disabilities. But he does not listen. He is the first guy who sees the real me and does not look at me any differently. When he looks at me, he sees the real me instead of pitting me. And that is a great thing to have. 

So, I want to give you a little piece of advice today: You are allowed to be happy with someone regardless of your disability. Don’t let anyone tell you otherwise. 

https://www.pexels.com/photo/a-romantic-couple-on-the-beach-7699052/

What is Disability Pride Month

Hello Jhana’s supporters, it’s your disability advocate and writer Jhana. Before I get to this blog, I have some good news to share. You know that I am in college right? Well last month, I had a class called Project and Portfolio 3 and in that class, we had to come up with our long and short-term goals that were in our action plan that lead to our project for the month. I am a self-published author in that being said my long-term goal is to be published traditionally. And my short-term goal is to boost my brand, “Jhana’s Writing  Journey,” off the ground. Which is recreating my Facebook page, Instagram, YouTube and making a website. I also wanted to turn my script that I wrote in one of my classes into a Flash Fiction story or Novella. My instructor for the month said I should narrow my short and long-term goals down. He told me that it is kind of hard to achieve my dreams without a website. So, I’ve decided to make myself a “Jhana’s Writing Journey,” website. I will put the link to my website at the end of today’s blog. Now let's get into today’s blog. 

On July 26th 1990 is when George H.W Bush signed into law that the Americans with Disability Act would be given a fair chance and not be discriminated against. Because of that law, it is official that July is Disability Pride Month. There is still a lot of work to be done. For example, they should be more accessible. I live in Hawaii, and there is very limited handicap Accessibility. People with disabilities now have to pay for the handicap parking Meter. This happened a few years ago. I’ve also noticed that handicap parking is very limited. If there is handicap parking, it is 20 feet away from where you need to go. And even though there is a handicap spot where I live, people with disabilities are not allowed to park there. 

Why should you celebrate Disability Pride Month?

I know you might ask, “Why should I celebrate Disability Pride Month when I have the disability all year round?”  I don’t have the answer but I think you should celebrate it because that is when the bill has been passed. I know most of you don’t like to celebrate your disability, but rather you want to dwell on it. I remember when I dwelled on my disability. I know what it is like to feel sorry for myself. I was the queen of that. I found faults in myself because of others. 

What I found is that if you dwell on your disability and find faults because of your disability, then you will always be mad and hold on to grudges that you can’t control. To be honest, you shouldn’t be embarrassed about your disability because like I said, you can’t change it no matter how hard you try. So the best thing you can do is live your life to the fullest. 

So that is why you should celebrate your disability, at least you’re alive. I’ve learned to appreciate my disability and not run away or hide from it. If I can do it, so can you. So continue to celebrate your disability and be proud that you are alive and healthy. Remember, someone is always worse than you.

www.jhanamatthews.com

Your label is not who you are

Hello and welcome to my blog article “Jhana’s Writing Journey.” I am your writer and disability advocate, Jhana. I am trying to keep up with my blogs on a regular basis which is every Thursday. However, I don’t have a set date and time that I would be doing my vlogs yet it’s on a random basis. But thank you for all of your support and patience. So let's get started with this week's blog article. 

Have you ever met someone and you told them your name multiple times but all they could remember about you was your label which is your disability? For years, the way people remember who I am is the girl with no neck, the girl who dresses funny, the girl who has four eyes, the girl who shakes her head uncontrollably even if it is a habit, or the girl who has balance issues. I was never Jhana. I was never a person aside from my disability.          

Learn to accept your disability

What I learned about having a disability is that it’s not your fault. You didn’t ask to have a disability, you were either born with it or you had a traumatic experience that caused your disability. No matter how you got your disability, you should not feel guilty for having it. 

To me, embracing your disability means accepting your disability for what it is and not changing who you are for someone's approval. I am not really religious but when I used to go to church, I made a testimony about my disability. I accepted my disability for a little while, but still felt out of place. Long story short, I was not accepted there and I felt like I had to be someone who I was not. They tried to split my Fiance and I up because they felt like he shouldn’t be with a disabled girl. But they failed to realize that he has a disability too. It’s just invisible unlike mine. So my Fiance and I left. 

Ever since we left, there were no negative people left to insult me and my relationship. I’ve learned, if you don’t surround yourself with negative people then you would have a much better mindset. And when you have a good mindset, then you would accept and embrace your disability and not hide from it. Because hiding from your disability won’t let you be who you are. What my Fiance said to me and I would like to share with you is, “Your disability is not who you are. You make who you are.” What does that mean to you?

If they don’t remember your name but only your label, then they are not worth your time. You are worth so much more than what everyone perceives you to be. So if you don’t like the way someone treats you then you have the power to change it. Trust me, you’ll be happier. I am not saying that it will happen overnight because it took me a while before I had the courage to say enough is enough. If you don’t like the label that everyone gives you, then create a new label that someone can call you instead. For example, I love writing (if you can’t tell), my label is being a writer. What’s your label? What makes you, you? 

References

Corbin, Dakota. “Woman walking beside the wall with the best gift is your graffiti photo – Free Quote Image on Unsplash.” Unsplash, 21 February 2017, https://unsplash.com/photos/woman-walking-beside-wall-with-the-best-gift-is-you-graffiti-xh4mG4cqHGg.  

 

You are not cursed because of your Disability

Hello Jhana’s supporters, It’s your disability advocate and writer Jhana. I am sorry that I haven’t posted a blog article in a while. Coming up with articles is hard to come up with. But I will just try to make them on a regular basis. I want you all to know how I appreciate every single one of you who supports me. 

Last week, I posted a meme on Facebook that reads, “there is currently no cure for Spina bifida, but people living with it can survive and thrive.” I posted on my Facebook that I am head admin. It’s called, “SB & Hydro WARRIORS.” When I posted the meme, a friend that I want to keep anonymous; let’s call him Joe. Joe said that his Spina Bifida seems like a curse not a disability. The reason why he said that was because he is paralyzed from the Waist down. That’s when I decided to do this blog. 

Embrace your disability

For years I’ve always thought of my disability as cursed. I always cared about my disability. I always wanted to be like everyone else. Everyone who does not have a disability that is. I felt like people who do not have a disability, have more to offer the world. But when my Fiance came to Hawaii in 2018, I started to accept my disability because he accepts me for who I am and he does not want to change me to someone I am not. 

Having a disability does not make you less than anything. Having a disability makes you who you are and you should embrace it. Having a disability does not mean that you are cursed. It just means that you are different from everyone else. But who is not different? Everyone is different in their own way. That’s what makes you special. If you are the same as everyone else, then the world would be boring, don’t you think? As my favorite artist Demi Lovato says, “Be who you are because everyone else is already taken.” What that means is, you are already perfect just as you are. And you don’t have to change who you are for other people’s approval. Just because you have a disability, does not mean you have a curse. You should be proud of your disability because you are still alive. My Fiance always said to me, “Your disability is not who you are. You make who you are!” And who you are is so much more than a disability. You are special in your own way. And that is what I hope that you will get out of my blog today. 

Thank you for reading, I plan on making blogs more often but it is hard to do.