Pain

Ever felt worthless? I do every single day.

Don't feel like getting out of bed? Never do.

Wonder why you have friends? Every day.

Feel like giving up? All the time.

These are things that stay with me all the time, 24/7, 365 days a year. Some days seem impossible. But I try; I keep pushing. I keep trying because I know there are a few who care about me. I know there are some who want to see me, ones who look forward to seeing me. I do it for them.

If I were to give up I wouldn't be getting rid of the pain I would just be giving it to someone else. This doesn't really have anything to do with spina bifida, but I know some who may share this pain. I want you to know I understand. I am right there with you. I fight the same fight. If you want someone to talk to I will be here. It doesn't have to be about the pain. It could be anything. Your goals, dreams, family, friends, whatever. Just to help you forget the pain for a while. I am here.

Editor: Esmé Nicolson-Singh (redsbreadslady)

Top 10 questions people ask

Anyone who knows me will tell you that I don't mind answering questions about my disability. However there are a few questions that are a little annoying and just a bit inappropriate. So here is a list of the top ten questions people ask me.

10) What is wrong with you?

I don't really have a problem with this question, only the phrasing. It is very rude to say that something is "wrong" with someone. If someone were to ask, "Why are you in a wheelchair?" then I wouldn't be offended.

9) Do you wish you could walk?

I understand why some people ask this, but sometimes it almost feels like people want me to feel bad. My answer to this question is no, I don't. Why would I want something that others complain about? I do not feel like I am missing out on anything.

8) How do you (insert simple task here)? 

I usually hold back my laughter when someone asks me this. I say so because it is always something that doesn't require the ability to walk. For example, "How do you open a door?" If I am in a good mood I usually answer jokingly.

7) Do you know so and so? They are also disabled.

No, no I don't. Despite what you may think, not everyone disabled knows each other. That would be no different than me asking if you knew someone because they are the same ethnicity as you. There aren't many questions I discourage people from asking but, please, stop asking this one.

6) Aren't you afraid to be out in public? 

No, but I probably should be, considering where I live. This is one that has caused me to really think because I live in a dangerous city. I have learned to take care of myself so this wasn't something I thought of until it was brought to my attention.

5) Can you walk at all?

 I can with crutches. That's it. I wish I had more to add to this, but I don't.

4) So if I stab or shoot you in the leg you won't feel it?

 Why? Why is that the first thing people think of? Every single time I tell someone I can't feel below my knees that is the first thing with which they reply. Another question that gets annoying. The nerves are damaged so, no matter what, I will not feel it.

 
3) How do you use the bathroom? 

  

Another one I will never understand. Why do you want to know? Besides, it is not that hard to figure out. If I can't stand, what other option is there? Think it through.

2) How do you take a shower? 

WHY. DO. YOU. WANT. TO. KNOW?!?!! I want people to stop asking this. Just to let others know, there are shower chairs.

1) Wait, so you can't feel your crotch? 

This is the next one that comes up after I tell someone I can't feel below my knees. My immediate response is "Do you know the male anatomy?" My crotch does not swing below my knees. 

So there it is, the top ten questions I hear. I hope this helps you understand what you should and should not ask. Have another topic for me to discuss? Let me know in a comment or message me on Facebook. :)

Editor: Esmé Nicolson-Singh (redsbreadslady)

To the Parents

I have talked about my feelings and what I went through growing up. However, I haven't talked about what my parents went through during that period. I am the youngest of five kids; I have three sisters and one brother. All of them are able-bodied. So, you can imagine the shock my parents experienced when I came along. 

It's tough having a disabled child. Even more so when you have four other children who are fine. I imagine such questions came to mind such as, "Will I be able to communicate with my child? Will he live long? Will he be able to keep up with his sisters and brother?"

Back then they didn't have the technology available now, so my parents did not know my condition until I was born. Be glad for those of you who find out ahead of time; at the very least there is time to prepare mentally. After I was born, I stayed in the hospital for a month or so that was 45 minutes away from my hometown. You mothers, I want you to think about that: You can't hold your newborn in your arms for at least a month. The only way you can see them is through glass, as they are connected to all kinds of wires to monitor health. I don't know what my parents asked the doctors, but I know one had given my parents the best advice he could have given them: "Don't make his disability your disability. Treat him just like your other kids." As a parent you may think that's crazy. 

With everything your kid goes through, disability or not, you want to instinctively protect them. However, you can't protect them forever. You need to let them learn on their own. And that's what my parents did for me. I don't know if my parents knew of the challenges I would experience growing up, if they thought of what would happen as I got older, but they wisely handled each problem encountered. It is because of them that I am the person I am today. Because of them I show others that I can adapt and do things that others can't. 

I will admit there is a downside. I seem to fall in between being disabled and not, as discussed in a previous post. When I need to be seen as disabled and need assistance, I seldom receive the necessary help. Then when I don't need help, I am seen as helpless. All because I can socialize, I know how to speak to people. So, my advice to parents who worry about what your child's life will be like, don't worry so much. Just be a parent. Let the kids figure out what they can and can't do; they may surprise you! Talk to them like you would any other child. Discipline them just like everyone else. Remember, they are disabled, not unable.

Editor: Esme' Nicolson-Singh (redsbreadslady)

Daily Struggles

When it comes to Spina Bifida what daily struggles come to mind?

Someone who doesn't have SB may say simple tasks such as using the shower, cooking, or making the bed. While that may be true, sometimes the daily struggles include things such as paying bills, grocery shopping, and even transportation. Since I have become an adult those tasks have been a challenge.

There hasn't always been an easily accessible bus stop, and I have lived in an area so dangerous that I can't stroll down to the bus stop. So what did I do? Signed up for online banking and online billing. That has been a great asset. As for groceries, I still have to get rides from friends and family. That will change soon, as I am a few steps away from getting my driver's license. That is a story for another post.

I will admit due to these challenges, some may perceive irresponsibility on my part. They don't understand the hoops I have to jump through to get the simplest things done. I do get down at times, but I think back to where I was and realize I have come a long way.

You may think, "What about having a social life? Hasn't that been a struggle?" For me, it hasn't. Sure, when I was a kid I got picked on but who didn't. I learned to stick up for myself, become more sociable and because of that, I now have great friends. I will share more about my childhood in more detail in a later post. Please keep in mind, I am not pushing for things to be done a certain way; I simply wish to share my journey.

Have any other ideas? Comment below or message me. I'd love to hear your thoughts.

Editor: Esmé Nicolson-Singh (redsbreadslady)