What I’ve learned living with Spina Bifida

I’ve had to live a long time with Spina Bifida; it’s been quite the journey.

I’ve had to deal with a lot of surgeries, hospital stays, pain trying to figure things out, all of that plus coping with personal issues as well. It hasn’t been easy at all.

I feel like, as a kid, I was going through the motions. I don’t know how to explain it other than going through the motions and, I guess, trying to be a kid with a disability.

One of the things that sucks about having Spina Bifida is the cognitive issues. I can’t get it sometimes, even today, and I’m 41. Back then, I didn’t get it, which delayed my development. It just absolutely sucked to struggle to understand what’s going on.

Another thing to deal with was my bladder issue, meaning that I was leaking at ages when normal kids were non-disabled; kids don’t leak and are typically potty trained. Still, because of my spina bifida, I leaked a lot and didn’t get treatment until after school ended. I could have used treatment while in school but ended up getting treatment after school. I can’t change it now. I lost friends or had difficulty making friends because of my bladder issues. I wasn’t always confident, either.

Luckily, when I was 36, I finally found a treatment that helps with leaking. Botox is a life-changer.

I also had digestive issues growing up and had to learn how to eat as a person with a disability. Unfortunately, when you have a disability, at least from my perspective, you can’t eat like an average person because it messes up your digestive system. You have accidents, and accidents are very embarrassing. I would rather have a bladder accident than a bowel accident because if you drink plenty of water, then your urine won’t smell, but if you have a bow accident, well, you know what can happen when poop is involved.

Growing up, I had only one sibling, my sister Crystal. It was not easy. She did not make it easy on me. I’m not saying I’m perfect or that I treated her perfectly at all. Still, it was hard because she was not born with a physical disability, so it was hard for her whenever my mom would visit me in the hospital and take me to doctor’s appointments all the time. I felt like she felt she wasn’t getting enough attention, so like siblings do, they take it out on you, so that was tough. We are both middle-aged now, and she has a 4-year-old girl which I rarely see. She doesn’t like to come to my apartment because she thinks I’m dirty, which is frustrating for me. After all, I love my niece. I want to see her before she grows up and does her own thing, but that’s life. I’ve learned that just because somebody is related to you doesn’t mean they will treat you as you should. Unfortunately, other people related to me make me feel like total shit, which hurts very much. Still, I don’t think about it, and I do my own thing. I don’t think about it because it hurts too much to think about it, so I surround myself with electronics and do what makes me happy.

When it comes to my other relatives, I don’t think they mean to treat me like shit, at least I like to think so, but I also believe they don’t know how to talk to somebody with a disability. I guess because I’m related to them, they feel guilty.

So, as I said in my previous blog post, I grew up without a dad, which affected my relationship with my father today. He lives in a different state and has a family of his own. I also have a half-brother and a half-sister from his side, but I rarely see them; I only see them every few years or so. They have kids. My sister has daughters that I’ve never met before.

So yeah, I’ve been through a lot in life, but at the same time, I think that’s made me the person I am. I think it’s made me see things clearly and not see things the way I want to see them, but for what they are, I’m a Loner, but that’s okay. I think it’s okay to be a loner because to be a loner, you do not see things all the time, but sometimes being a loner is a good thing because you don’t have feelings attached to anyone, and you can think clearly.