Love Without Limits: Dating with a Disability

Hello, Jhana’s supporters! It’s your disability advocate and writer, Jhana. I hope you’re all doing well. I’ve been swamped with school and had to pull a few all-nighters the last couple of weeks. Even though I set a time to write and post my articles, it is still hard to keep up with the schedule because one of my classes requires me to turn my assignments in on Saturdays and Sundays every week. Luckily, I only have two more weeks of this class. Lately, I’ve been working on my articles when I have time. That’s why it’s more random, but I will still try to post every Thursday at 10 AM. Now, let's get to today’s topic. 

In today’s blog article, I want to talk about the importance of having no limits when you have a disability. 

Understanding the Landscape: Dating and Disability

Being in a relationship can be frightening for everyone. But being in a relationship with a disability is even more frightening. A disability can create a fair amount of challenge. To understand dating with a disability, you have to be aware of the stigma and misconceptions that come with it. It’s crucial to create a space for a partner with a disability and find ways to connect with them. That’s why finding someone who sees past your disability is crucial. 

Being in a relationship with someone who has a disability means educating others about it. Every person is different, so what might be a non-issue for one person could be a significant obstacle for another. It’s essential to be open-minded when in a relationship. You should approach dating with openness and understanding, no matter who you’re with. 

It took me a while to open up about my disability to men. In high school, I gave a guy a glimpse of my disability. I never really told anyone about it besides that. It wasn’t until I lived with a first guy who was much older than me. When I had a shunt revision in 2016, he realized he didn’t want to deal with someone with a disability and did not want me to get the proper care I needed even though I had symptoms. In his head, I was seeking attention. So, he got mad when one of my PCPs wanted me to see a neurosurgeon. Since the guy didn’t want me to see one, my doctor told him that I had to because I had my shunt for 26 years, and it was time to get it replaced. He wasn’t all that pleased, but I had my shunt revision anyway. After that, he did not want to take care of me. That all changed when I met the guy that I am with now. Before he came to Hawaii to live with me, he looked up my disability. And that’s what makes a good relationship. Being in a committed relationship means loving unconditionally and educating yourself on the other person. 

Breaking Down Barriers: Communication and Misconceptions

What makes a great relationship is communication and understanding. You have to be there for each other regardless of any flaws. It also involves breaking down barriers and being open about your wants and needs. You also need to be a good listener and be understanding. It’s all about creating a great space for a relationship. Plus, being honest about your disability may boost your self-confidence. 

Many non-disabled individuals have misconceptions and think that people who have a disability should not be with someone who is “normal” like they are. What I mean by the misconceptions is that society thinks people who have a disability should be with someone who also has a disability. Also, when someone doesn’t have a physical disability, society sees them as someone without any disability. They choose what they see as a disability. On the bright side, through open communication, couples can build a stronger bond based on mutual respect and understanding.

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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.

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