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My Story: How I live with Spina Bifida

Written by Natalie Samara

Edited by Jocelyn Wang


Hello everyone! This article is a personal piece by our writer Natalie Samara, which shares her personal experience living with Spinal Bifida.

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When you think of a child who is in a wheelchair, people tend to assume that “they must have been in a car accident,” or “it’s just a temporary condition.” In some cases, that may be accurate, but for others who are wheelchair-bound, it's not just temporary. My story is different, because I have lived with a neurological condition called spina bifida. Spina bifida is a neural tube defect that affects the spinal cord and brain. Additionally, I have a shunt, which is a type of catheter that drains the extra cerebral spinal fluid (CSF) from my brain to the pelvic area.



Not many people know that there are three types of spina bifida which are myelomeningocele, meningocele, and spina bifida occulta. The most serious type, myelomeningocele, is the one I have. In this type of Spinal Bifida, the sac of fluid that comes from the brain to the spinal cord creates an opening to the baby’s back. In my case, this occurred, and the function of my legs is different compared to a normally abled body. Additionally, the nerve damage, since the neural tube does not fully close along the structure of the nervous system, prevents the spinal cord, nerves, and meninges, which is the membrane that covers and protects the spinal cord and brain from developing completely. The other two types of spinal bifida that are less serious are meningocele and spina bifida occulta. Meningocele is similar to myelomeningocele where the sac of fluid is around the baby’s back, but the spinal cord is not in the sac of fluid. Spina bifida occulta on the other hand is different from the sac of fluid since it would not show an opening or sac on the back of the baby. This type would not be discovered until later into childhood or even till adulthood.



For me, since I have myelomeningocele, my legs are not able to stand up on their own or and I have to be sitting in a wheelchair. That was not always the case, when I was 3, I did use a walker to move around and did have some mobility of my legs to go around places. As I was moving around, my legs started to get tired more and more, then when I turned 6, I began using a wheelchair. I still to this day have mobility in my legs, such as I can move from my bed to the chair, or from couch to couch. I also can do some physical activity such as swimming, running but wheeling very fast, and do things at home like cooking, cleaning around the house, and some of the things that normal people would do. There are a lot of things that are difficult and very challenging to do, such as reaching for things up high, putting clothes in the washing machine, and so many other things.



Through the years, I have learned how to adapt to those challenges and learn a lot about my disability and condition. But I learned that I am not the only one who goes through these challenges, I have seen adults with the same condition or other disabilities go through them and learn how to adapt to those challenges as they go through life. As a young adult, I have become more independent and not so reliant on my parents when it comes with my medical needs such as the equipment, medications, and more. I have also learned how to be on my own in transportation, jobs, and other things that young adults do on their own.



Now as I have become a young adult, people sometimes do see me differently and others see me as a person and not as a disability. The world today still makes assumptions to the disability community about our disabilities, and I believe people should see us as someone who does go through challenges whether it is physical or mental, but we are human and should not be treated differently and be looked down on.


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Thank you for reading this article on Spinal Bifida! We hope you learned about this condition, as well as what it is like for individuals living with a disability. It is important that we treat one another as equals, regardless of disabilities being present, since we all are equals.


If you enjoyed reading this article, check out our last article on Abortion Rights, by Arushi Neravetla.


See you later,

Natalie and the Writing Committee :)


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