October is Spina Bifida Awareness Month. It is a birth defect of the spine that I personally was born with.
Spina Bifida is Latin for "open" or "split spine" which means that the spine did not fully develop during the development of the baby in the womb. This happens within the first 28 days of pregnancy.
Spina Bifida occurs within 1 or 2 of every 1,000 births within the United States.
In further layman's terms, when a baby is born with Spina Bifida, there is a bump or a "bubble" that is seen on the back and inside of that bump is the malformed part of the spinal cord and vertebrae, and it is treated medically through surgery within the first days of the baby's life. But because of this surgery, this causes paralysis of the body.
So the baby is physically disabled for all of its life.
Most people do not know about Spina Bifida with the exception of two groups: those in the medical profession & someone who has a family member or close friend who was born with it. Otherwise, people are just unaware of it being in existence at all.
There are various forms of Spina Bifida and therefore that comes with varying degrees of disability. Myelomeningocele is the most severe form of the birth defect. And that is what I personally have.
Spina Bifida is Latin for "open" or "split spine" which means that the spine did not fully develop during the development of the baby in the womb. This happens within the first 28 days of pregnancy.
Spina Bifida occurs within 1 or 2 of every 1,000 births within the United States.
In further layman's terms, when a baby is born with Spina Bifida, there is a bump or a "bubble" that is seen on the back and inside of that bump is the malformed part of the spinal cord and vertebrae, and it is treated medically through surgery within the first days of the baby's life. But because of this surgery, this causes paralysis of the body.
So the baby is physically disabled for all of its life.
Most people do not know about Spina Bifida with the exception of two groups: those in the medical profession & someone who has a family member or close friend who was born with it. Otherwise, people are just unaware of it being in existence at all.
There are various forms of Spina Bifida and therefore that comes with varying degrees of disability. Myelomeningocele is the most severe form of the birth defect. And that is what I personally have.
Spina Bifida is often referred to as "the snowflake condition" because no two people born with Spina Bifida have the same kinds of disability or challenges in life.
I grew up as a child having mobility challenges by having to wear leg braces and using arm crutches. I have endured countless surgeries as I was growing. People born with Spina Bifida go through a lot of surgeries before they reach the age of 18. As I grew into adulthood, I now use a wheelchair all of the time for mobility.
I grew up as a child having mobility challenges by having to wear leg braces and using arm crutches. I have endured countless surgeries as I was growing. People born with Spina Bifida go through a lot of surgeries before they reach the age of 18. As I grew into adulthood, I now use a wheelchair all of the time for mobility.
Because of the fact that Spina Bifida is not very well known, I have gone through a lot of interesting experiences when it comes to deal with people, particularly when it comes to their curiosity getting the best of them.
I want to be very clear on a number of things:
IT IS OKAY TO ASK QUESTIONS. Generally speaking, if you don't ask questions then you will never know. Never be afraid to ask questions.
With that being said, when people ask a question and it comes prefaced by things like "I don't mean to be rude, but..."
Once you say something like that, we are going to automatically believe that you are about to be rude. STOP SAYING THAT! It's simple. Just ASK.
Another thing to know is that Spina Bifida is NOT contagious. You cannot catch it by being around other people who have Spina Bifida.
Through my teenage years, I went through so many times where people avoided me because they had that irrational fear of getting what I had. It won't happen.
In decades prior there were so many cases where people with Spina Bifida were put into mental hospitals and asylums because for one, society didn't know how to deal with them and two, society did not want the condition to spread.
Please stop asking about whether or not a person with Spina Bifida can have sexual relations or intercourse. Frankly it is none of your business. Save yourself the humiliation. But a majority of the time, the answer is YES.
If a person identifies as disabled, they are very much unlikely to be hired for employment.
People with Spina Bifida have up to seven times more financial expenditures due to having to pay for medical equipment that they have to use throughout their entire life, and that ranges from wheelchairs to catheters and everything in between.
People with Spina Bifida have bladder/bowel problem 100% of all cases. But adaptive medical equipment helps in those situations.
The advances in medicine and in technology have come a long way in the efforts to making life with Spina Bifida a whole lot better. People with Spina Bifida actually live productive lives on their own. Independent living has been a very important part for me in my own life.
Honestly, people with Spina Bifida live their lives similar to anyone else.
Because of the fact that there are varying degrees of disability, some people don't even appear to be disabled. Spina Bifida is often called "a snowflake condition" because no two people are affected the same way.
One thing that I will mention here is the fact that Spina Bifida affects all kinds of people in all kinds of life.
American country musician Hank Williams Sr. was born with Spina Bifida as well as American rocker John Mellencamp - and that is something you probably were not aware of.
Mexican painter Frida Kahlo has also been suspected to have been born with Spina Bifida.
I could go on and on and on listing people from world's history who either have been born with Spina Bifida or has been suspected but that would make for a much longer blog post.
On the most personal of notes:
I use a wheelchair to rely on mobility. I have paralysis from the knees down. I also have no feeling or sensation from the knees down.
I have had dozens of surgeries throughout my lifetime. I had had countless of hospitalizations throughout my life.
My teachers were terrified of me when I went through grade school. I found out later in life that the reason why they were so terrified of me was because they had never had a disabled student in their classroom before.
In third grade I was bullied by a group of girls from my own class. And I would imagine the disability only made it worse.
High school and college were more of the same.
I survived it though.
As an adult I realized that there will always be someone that I will come into contact with that won't know anything about my disability and I will have to explain and educate.
And today, I do all the things that everyone else does in daily life. I just do them differently.
I travel, I go out and enjoy things in life like live music, I speak several languages, I sing, I write. I do it all. I breathe in and breathe out and then repeat.
I realize that this blog post is scattered but I did not want to forget anything that came to mind that I wanted to say. But I know that there will be things that I will forget.
As it is October, this blog post serves as a tool for awareness for Spina Bifida. The colored ribbons commonly used are either yellow or teal.
As I write this, it is the 25th of October which is World Spina Bifida Day. I am wearing teal.
I hope that this has been helpful for you. I hope that it creates an open space for you inside of your mind. Leave your questions in the comment section below if there is something that you would like to know about my life with Spina Bifida.
I want to be very clear on a number of things:
IT IS OKAY TO ASK QUESTIONS. Generally speaking, if you don't ask questions then you will never know. Never be afraid to ask questions.
With that being said, when people ask a question and it comes prefaced by things like "I don't mean to be rude, but..."
Once you say something like that, we are going to automatically believe that you are about to be rude. STOP SAYING THAT! It's simple. Just ASK.
Another thing to know is that Spina Bifida is NOT contagious. You cannot catch it by being around other people who have Spina Bifida.
Through my teenage years, I went through so many times where people avoided me because they had that irrational fear of getting what I had. It won't happen.
In decades prior there were so many cases where people with Spina Bifida were put into mental hospitals and asylums because for one, society didn't know how to deal with them and two, society did not want the condition to spread.
Please stop asking about whether or not a person with Spina Bifida can have sexual relations or intercourse. Frankly it is none of your business. Save yourself the humiliation. But a majority of the time, the answer is YES.
If a person identifies as disabled, they are very much unlikely to be hired for employment.
People with Spina Bifida have up to seven times more financial expenditures due to having to pay for medical equipment that they have to use throughout their entire life, and that ranges from wheelchairs to catheters and everything in between.
People with Spina Bifida have bladder/bowel problem 100% of all cases. But adaptive medical equipment helps in those situations.
The advances in medicine and in technology have come a long way in the efforts to making life with Spina Bifida a whole lot better. People with Spina Bifida actually live productive lives on their own. Independent living has been a very important part for me in my own life.
Honestly, people with Spina Bifida live their lives similar to anyone else.
Because of the fact that there are varying degrees of disability, some people don't even appear to be disabled. Spina Bifida is often called "a snowflake condition" because no two people are affected the same way.
One thing that I will mention here is the fact that Spina Bifida affects all kinds of people in all kinds of life.
American country musician Hank Williams Sr. was born with Spina Bifida as well as American rocker John Mellencamp - and that is something you probably were not aware of.
Mexican painter Frida Kahlo has also been suspected to have been born with Spina Bifida.
I could go on and on and on listing people from world's history who either have been born with Spina Bifida or has been suspected but that would make for a much longer blog post.
On the most personal of notes:
I use a wheelchair to rely on mobility. I have paralysis from the knees down. I also have no feeling or sensation from the knees down.
I have had dozens of surgeries throughout my lifetime. I had had countless of hospitalizations throughout my life.
My teachers were terrified of me when I went through grade school. I found out later in life that the reason why they were so terrified of me was because they had never had a disabled student in their classroom before.
In third grade I was bullied by a group of girls from my own class. And I would imagine the disability only made it worse.
High school and college were more of the same.
I survived it though.
As an adult I realized that there will always be someone that I will come into contact with that won't know anything about my disability and I will have to explain and educate.
And today, I do all the things that everyone else does in daily life. I just do them differently.
I travel, I go out and enjoy things in life like live music, I speak several languages, I sing, I write. I do it all. I breathe in and breathe out and then repeat.
I realize that this blog post is scattered but I did not want to forget anything that came to mind that I wanted to say. But I know that there will be things that I will forget.
As it is October, this blog post serves as a tool for awareness for Spina Bifida. The colored ribbons commonly used are either yellow or teal.
As I write this, it is the 25th of October which is World Spina Bifida Day. I am wearing teal.
I hope that this has been helpful for you. I hope that it creates an open space for you inside of your mind. Leave your questions in the comment section below if there is something that you would like to know about my life with Spina Bifida.
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