Disability

About My Disability | Sacral Agenesis

July 8, 2019 itsamandaburnett 4 Comments

I’ve mentioned my disability briefly on my blog and on my social media accounts. I’ve never really gone into full detail about what my disability is though! I thought I’d make a blog post talking about it more. So let me talk about why at 22 years old, I’m only 4 ft tall and use forearm crutches to walk!

Sacral Agenesis

I was born with Sacral Agenesis or other known as Caudal Regression Syndrome. I could try to explain what that means in all the fancy medical terms that doctors have given me over the years, but all of that even confuses me. To put it simply, the lower half of my spine failed to develop all the way when I was in the womb. My disability is pretty rare and only occurs about once every 25,000 births!

I was also born with permanently dislocated hips. That might sound pretty intense and painful, but it’s honestly not a big deal to me. Unless I stand or sit for too long in one spot then it can get pretty sore. Honestly, I didn’t even know my hips were permanently dislocated up until a few years ago. I was complaining about how sore my hips were from standing and my mom just said, “Well, it’s probably because of your dislocated hips.” Imagine my shock. I guess I’m still learning more about myself every day!

Surgery

When I was being delivered at birth, doctors noticed that my feet and legs were stuck in an outward position. To fix this, I had to have a correctional leg surgery to get them back to a normal position. The surgery happened right before my first birthday. I’m actually thankful for this because not only was it successful but I don’t remember a thing. Although, my mom does have a couple of photos of baby me in huge pink casts on both legs. The thing that I love most about those pictures is the huge smile I had on my face.

Today, my legs don’t bend all the way, less than 90 degrees, but I haven’t had many other complications. The worst part for me when I was younger was getting over the insecurity of the big scars on my legs. Now, I can wear shorts without even thinking twice. Scars tell a story and I’m happy to tell mine.

Fun Fact: Have you ever seen American Horror Story: Freak Show? If so, you may remember the woman with half of a body. Rose Siggens, who just died in 2015, was born with Sacral Agenesis. Unfortunately, many people born with Sacral Agenesis end up having to get amputations due to severe complications of the lower extremities. I am very blessed I was able to have that correctional surgery!

Learn More On My YouTube Channel

If you’d like to know even more about my disability, I have a “Living With A Disability” series on my YouTube Channel if you’d like to check it out. The videos explain how I deal with it and even how I get around the house on an everyday basis.

If you have any other questions that I didn’t cover in this post, please feel free to comment them down below.

Well, that’s pretty much the basics of my disability but there’s much more to my story. I’ll cover much more in future posts. For example, what it was like growing up, the challenges I face, and more. Thank you so much for reading and getting to know a little more about me.

What It’s Like Being Deaf In One Ear

April 20, 2019 itsamandaburnett 21 Comments

What Its Like Being Deaf In One Ear

Being Diagnosed

One thing that not a lot of people know about me is that I’m actually deaf in my left ear. When I was younger, doctors noticed that my hearing was declining in my left ear and it wasn’t improving. I don’t really remember when it all started but I just remember having to go get hearing tests every couple of months. For a while, I had a big bulky hearing aid. I hated that thing but I knew it helped me hear better so I didn’t complain too much.

I remember the day when I was sitting in the same doctor’s room that I was always placed in to get my ears checked. It was right after getting my hearing test done. The doctor came in, sat down, and just sighed. Uh oh. Then he told me, “Amanda, you can take your hearing aid out. You don’t need it anymore.” I happily took it out not fully understanding what he meant. I was around eight years old. I was just happy not to have to wear that thing anymore. Then I heard him explain to my mom that he could see from my hearing tests that my left ear was completely deaf and the hearing aid wouldn’t help anymore.

Living Life With A Deaf Ear

Being deaf in one ear might sound quite scary but it’s not that bad. There are days when I don’t even notice. Most of the time, I literally forget that my left ear isn’t processing sound. Then there are times when it does cause problems and lots of anxiety. Let me explain.

I can’t really tell that I’m deaf in my left ear when I’m in a room with just a couple of people because sound travels. It’s not like I never hear anything on my left side. Somebody could sit to the left to me and as long as they’re not whispering, I can hear and understand them without a problem. The problem comes in when I’m in a loud and busy place. For example, stores. The reasoning is, if there’s chaos to the right side of me, that’s all I’m going to be able to hear.

Being In Public

There was a time that I was at the mall with my friend and she was to the left of me talking about something dramatic so I was making sure to pay close attention. When we were in the parking lot and when we first walked in, I could hear her just fine. Then all of a sudden, the only thing I could hear was all of the chattering and noises to the right of me. I looked to my friend, her lips were moving but I couldn’t clearly understand what she was saying anymore so I stopped. I kind of laughed and was like, “I can’t believe I forgot to tell you this, but I’m deaf in my left ear and I can’t hear you because it’s so loud. Can you stand on my right side?” That was a great storytime. Even I forgot until that happened.

The Struggle Of Being Sick

The scariest part of being deaf in one ear is when I get sick. You know when your ears get plugged? Well, I only have one good ear so if that goes down, I’m pretty much deaf. I was a very sickly child and always had ear infections which now that I think about it, is most likely the culprit for going deaf in my left ear.

There was a day when I was sick and I wanted to go watch tv with my family. When I sat down, I couldn’t hear the movie. I asked my mom to turn it up and I noticed that I could barely even hear myself. My mom kept turning it up but it didn’t really help. I lost my mind. I started freaking out because I thought my hearing was gone for good. My mom assured me that it was just because I was sick and I would get my hearing back.

Dizzy Spells

I also get dizzy spells. It happened more often when I was younger but the doctors said its most likely just because of the imbalance in my ears. They can get quite severe and in the most random times. They don’t happen as often anymore, thank goodness.

I still have to get occasional hearing tests for my right ear to make sure that side doesn’t start to lose hearing as well but so far so good! I do want to start learning sign language though just to be safe. It’s one of those things that if the worst does happen, I want to be somewhat prepared even though I don’t think one could possibly be prepared for that.

That pretty much sums up my life with one deaf ear! If you have any questions, let me know! I also made a youtube video summarizing what it’s like. I’ll leave it below so you can check it out!

That’s all for today’s post! Thank you for reading. ♥

Xoxo,

Amanda Burnett

Would I Choose Not To Be Disabled?

April 10, 2019 itsamandaburnett 2 Comments

The Question

When people ask me about my disability, the questions vary. A couple of easy to answer questions that I get all of the time are, “What’s the name of your disability?” or “Is it painful?” Then there are harder questions that I don’t know how to answer right away. Can you imagine being asked, “If you were given a choice, would you choose not to be disabled?” when you’re just trying to hang out with some friends? I don’t even mind when people come up to me when they are curious about my disability and I’m usually very willing to talk to people about it but when I was asked this certain question, I had to walk away because how am I supposed to answer that? Why would you even ask that? Then I thought…wait, would I?

I shouldn’t have let this question run through my mind for so long. I should have just ignored it and never thought about it again. This question was really frustrating for me at first because the reality is, I know that I will never wake up one day and not have my disability. Nobody can wave a magic wand for me. It just doesn’t work like that. But theoretically, if I was given the chance to wake up one day and not have my disability, I honestly don’t think I would.

My Answer

Would it be 100% easier without my disability? Absolutely. There are countless things that would make life a little bit less difficult but I’ve never been one to take the easy way out anyway. People have told me that I’m strong and I completely believe that I’m so strong because of my disability. I have struggled with various things in life but I fight hard to overcome each obstacle that I encounter. I never tell myself or others that “I can’t” without trying everything to find a solution for the challenge I’m facing. My disability has truly shaped me into the person that I am today. So who would I be without it?

So to provide a solid answer to that question that I’ve pondered for many years, the answer is no. I wouldn’t choose to not be disabled because I wouldn’t be me. I wouldn’t know who that person is. The biggest reason of all though? I’m happy with who I am and how I was made. This is the person I was meant to be and I would never change that.

Never forget that you’re perfect just the way you are.

Xoxo,

Amanda Burnett