LIVING LIFE IN SPITE OF A DISABILITY, NOT FOR IT…

I’ve been so fortunate to be married to someone I’ve been with for over a decade. The story of how my husband and I met is fairly simple – at a party. It was way before tinder days. I can’t imagine what life would look like for me if I were to start dating again in this day and age. I have friends who are currently single. They tell me what I call their ‘horror dating stories’, and every time I listen to them, I just keep thinking of my husband and telling myself how lucky I am to not have to deal with all the dating, specifically online dating, nonsense.

My husband and I met at a merely young age. We practically grew up together. Not in a literal sense as we were already in our 20’s when we met. But we lived a carefree life together and continued growing together as the years went by. I consider myself to be very lucky and and fortunate that I found love at an early age, especially considering my own life’s my circumstances. I have cerebral palsy. Not many people who have cerebral palsy can say that they found their ‘happily ever after’. In fact, not many people who have cerebral palsy can say they have what is considered to be ‘normal’ lives as a whole.

Everyone, of course, has their own definition of what normal is. Therefore, it’s hard to judge. My definition of normal is living independently with my husband in a place that isn’t owned by my parents, running my own business, cooking, cleaning, doing chores around the house, My normal is also doing a lot of travelling. My husband says that in the years we’ve been together, We’d done more travelling than most people do in their lifetimes. I’m just fortunate enough that I’ve been able to do so, both financially and physically; but mostly physically. I think that the most treasured ability I obtained as a person who has cerebral palsy is being able to drive, though. That was the most liberating experience. Even though I hated driving, just having the ability to do that was so important to me. All in all, my definition of a normal life normal life is just being able to do what other able-bodied people do.

For those of you that don’t know what cerebral palsy is, according to CDC, it is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles. CP comes in many shapes and forms. There isn’t just one way to describe how cerebral palsy affects people, both physically and mentally. And yes, cerebral palsy isn’t just a disability that affects people physically, but mentally as well. In fact, another name for cerebral palsy is mental retardation.

Mental retardation is just another term to describe cerebral palsy, and I completely and utterly understand that. But I’m anything but mentally retarded. If you look at me and you realize I have a disability, you might call me a disabled person. On the contrary, I’d describe myself as a person with a disability, or multiple disabilities as I have epilepsy as well, instead. I believe wording counts when you describe yourself as it affects how you perceive yourself in the future. And for those of you that don’t know what epilepsy is, according to CDC, it is  a disorder of the brain. A person is diagnosed with epilepsy when they have had two or more seizures. A seizure is a short change in normal brain activity. Seizures are the main sign of epilepsy. Some seizures can look like staring spells.

My disabilities don’t define me. Those around me who I find out define me by my disabilities are cut out of my life completely. I’m very protective of myself and my well-being, and I never compromise or sacrifice my self-worth, my happiness, or my well-being for anyone. There are plenty of examples I could include here where people mistreated me because of my disabilities , but I’ll only include a couple of them.

I was hanging out with a friend, and at one point, I took out my lip gloss. She asked me if I needed help putting it on because she assumed I couldn’t do it myself due to me having cerebral palsy. When I confronted her about it, she seemed to understand it. But some time later, there was another instance where she’d ask me if I needed to do the basic things such as put on a seatbelt. At the end of the day, though, I had to do what was best for me, which was cut her out of my life. Her asking me consistently if I needed help to do the most basic tasks got a little too much. It wasn’t much of a friendship anymore, but rather a care-taking situation that I needed to get out of immediately.

Years later, I had another friend who randomly texted me about a product that she came across on Facebook that she thought would be good for me. It was a special chair that she then realized was for kids who have cerebral palsy and epilepsy. This friend’s intentions were pure, but those good intentions can become toxic when they’re implied. And they did with that specific friend over the years. She attempted to ‘help’ me and give her two cents to everything I said, even when those two cents weren’t asked for and on topics she knew absolutely nothing about. When I confronted her about it, she got offended. I apologized for offending her, but I had to let her go as a friend. This type of friendship became really unhealthy for me.

It’s not to say that there aren’t people out there who have cerebral palsy and/or epilepsy that do need that help. I was friends with people who did, in fact, need that type of help. But that was never me. And believe me, I feel for them. They live their lives that way because of something that is simply beyond their control. I feel very fortunate and grateful that I didn’t end up that way. My whole life, for as long as I can remember, my goal in life was to never depend on anyone but my own damn self. I know people who have cerebral palsy who still live with their parents, never had significant others, and never had worked because their disabilities were in their way. Me, on the other hand… I’m married, I live independently with my husband, and I own my own business. I couldn’t ask for a better life than I already have.

Some people just like telling people what to do, and they love it even more when these people do as they say, because they love the control. Other people want to feel like they’re needed by those around them. They crave that feeling. It never was, never has been, and never will be my responsibility to do as other people say and fulfill their needs just to please them. I’m not here to live up to other people’s expectations. I’m here to live my own life – my own definition of a normal life. My definition of normal is living a happy, carefree, and successful life despite my obstacles such as my disabilities. At the end of the day, my life isn’t defined by them. My life is defined by what I do in spite of them. Everyone has their own obstacles in their lives that doesn’t revolve around their disabilities. If it’s not one thing, it’s anther. Life is worth living regardless without judgement or fear.