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, long before the mother knows she is even pregnant.
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. The higher up on the spine this "bubble" appears the more paralysis the baby will deal with. The baby is therefore physically disabled for all of its life.
Most people in the world 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. This where I am coming in, to educate and to make awareness.
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 been 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, long before the mother knows she is even pregnant.
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. The higher up on the spine this "bubble" appears the more paralysis the baby will deal with. The baby is therefore physically disabled for all of its life.
Most people in the world 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. This where I am coming in, to educate and to make awareness.
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 been born with.
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. I was no different growing up. I lose count how many surgeries I've actually gone through and the best that I can do is try to remember and count the SCARS upon my body all the way from my back up and down both the legs to both feet.
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. I was no different growing up. I lose count how many surgeries I've actually gone through and the best that I can do is try to remember and count the SCARS upon my body all the way from my back up and down both the legs to both feet.
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.
There are those obvious exceptions though. I have always said to feel free asking questions, but I have the right to NOT give you a response if I feel you are being rude or too personal.
With that being said let's discuss some personal pet peeves.
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, I am going to automatically believe that you are about to be rude. Ask your question but PLEASE DO NOT START OFF WITH THAT! It's simple.
Another thing to know is that Spina Bifida is NOT contagious. You cannot catch it by being around other people who have Spina Bifida.
It is NOT a disease
It is NOT a situation
It is NOT something that I "suffer" from
It is a birth defect and therefore I know no different other than living with a disability.
I am going to abruptly distance myself from you if you say these things in my presence.
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 is not going to 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. This is pretty important in my mind to share but let us continue.
Please stop asking about whether or not a person with Spina Bifida can have sexual relations or intercourse. Save yourself the humiliation. Besides, it frankly isn't any of your business.
Yet since you already are so curious about that one, I am going to just say the answer is YES I CAN. And I will add "I have not had any complaints." (Now, don't you feel silly?)
If a person identifies as disabled, they are very much unlikely to be hired for employment as scientists have discovered. Most people with Spina Bifida do have the physical ability to work, but with some certain limitations. The problems rise from the employers who refuse to higher anyone who identifies as someone living with a disability. It's wrong, it's bullshit, it shouldn't be happening, but it does, and it's all true.
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.
I personally struggle with having enough money to feed myself month to month even though I am receiving certain benefits. The issue is that it is not enough to live on from month to month. And because nobody wants to hire me, I am stuck so to speak!!
People with Spina Bifida have bladder/bowel problem 100% of all cases. This is one part of it where everybody who is born with Spina Bifida all fall into the same situations. But adaptive medical equipment helps in those situations. For example, I live with a colostomy, others might have an ileostomy, or both. I also have to use catheters to eliminate waste.
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.
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. Both of these men were born with Spina Bifida, but they had varying degrees of immobility. By comparison as far as it goes with mobility and what I can and cannot do, I am "worse off" than these two. Sometimes the severity is so minimal that you cannot even see it with your own eyes.
Mexican painter Frida Kahlo has also been suspected to have been born with Spina Bifida. But I honestly and personally cannot say for sure. There's an entire list of people of influence and celebrity who was born with Spina Bifida and if you were to read that list, I can almost guarantee that you will be stunned to see who was 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 fact, a majority of educators that I had as teachers never once dealt with a student with Spina Bifida until I entered the classroom.
In third grade I was bullied by a group of GIRLS (not boys) from MY OWN CLASS. And I would imagine the disability only made it worse. And the teacher did nothing about it, because she had never had a student with a physical disability up to that point in her career.
High school and college were more of the same. It just got worse!
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 or send a message somehow.
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.
There are those obvious exceptions though. I have always said to feel free asking questions, but I have the right to NOT give you a response if I feel you are being rude or too personal.
With that being said let's discuss some personal pet peeves.
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, I am going to automatically believe that you are about to be rude. Ask your question but PLEASE DO NOT START OFF WITH THAT! It's simple.
Another thing to know is that Spina Bifida is NOT contagious. You cannot catch it by being around other people who have Spina Bifida.
It is NOT a disease
It is NOT a situation
It is NOT something that I "suffer" from
It is a birth defect and therefore I know no different other than living with a disability.
I am going to abruptly distance myself from you if you say these things in my presence.
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 is not going to 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. This is pretty important in my mind to share but let us continue.
Please stop asking about whether or not a person with Spina Bifida can have sexual relations or intercourse. Save yourself the humiliation. Besides, it frankly isn't any of your business.
Yet since you already are so curious about that one, I am going to just say the answer is YES I CAN. And I will add "I have not had any complaints." (Now, don't you feel silly?)
If a person identifies as disabled, they are very much unlikely to be hired for employment as scientists have discovered. Most people with Spina Bifida do have the physical ability to work, but with some certain limitations. The problems rise from the employers who refuse to higher anyone who identifies as someone living with a disability. It's wrong, it's bullshit, it shouldn't be happening, but it does, and it's all true.
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.
I personally struggle with having enough money to feed myself month to month even though I am receiving certain benefits. The issue is that it is not enough to live on from month to month. And because nobody wants to hire me, I am stuck so to speak!!
People with Spina Bifida have bladder/bowel problem 100% of all cases. This is one part of it where everybody who is born with Spina Bifida all fall into the same situations. But adaptive medical equipment helps in those situations. For example, I live with a colostomy, others might have an ileostomy, or both. I also have to use catheters to eliminate waste.
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.
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. Both of these men were born with Spina Bifida, but they had varying degrees of immobility. By comparison as far as it goes with mobility and what I can and cannot do, I am "worse off" than these two. Sometimes the severity is so minimal that you cannot even see it with your own eyes.
Mexican painter Frida Kahlo has also been suspected to have been born with Spina Bifida. But I honestly and personally cannot say for sure. There's an entire list of people of influence and celebrity who was born with Spina Bifida and if you were to read that list, I can almost guarantee that you will be stunned to see who was 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 fact, a majority of educators that I had as teachers never once dealt with a student with Spina Bifida until I entered the classroom.
In third grade I was bullied by a group of GIRLS (not boys) from MY OWN CLASS. And I would imagine the disability only made it worse. And the teacher did nothing about it, because she had never had a student with a physical disability up to that point in her career.
High school and college were more of the same. It just got worse!
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 or send a message somehow.
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