More About Me: Living With Spina Bifida!

Reads: 275  | Likes: 0  | Shelves: 0  | Comments: 1

  • Facebook
  • Twitter
  • Reddit
  • Pinterest
  • Invite

More Details
Status: Finished  |  Genre: Other  |  House: Booksie Classic
This is a short entry I wrote that explains a little more in depth about my disability a birth defect, known as Spina Bifida, it also just gives a little more insight to who I am!

Submitted: November 02, 2011

A A A | A A A

Submitted: November 02, 2011

A A A

A A A


I will be honest I often feel angry, frustrated, scared, guilty, sad, and happy about having a disability! Words just cannot describe how I feel sometimes! I mean I don't blame anyone for the way I am, they say Spina Bifida can be caused by the lack of folic acid during pregancy, but noone really understands. There are times I wish I could be normal, whatever that is, lol. I hate being sick and having to deal with all the surgeries, and challenges of having Spina Bifida. I was often told as a young child and even now that I am more mature than others my age! But, I had to grow up! Having Spina Bifida puts a lot of strain on the individiual and their familes, it takes, dedication, courage, and faith.





 

I have faced many struggles, growing up with Spina Bifida. But, having Spina Bifida has made me the person I am today! I may be battling depression, anxiety, and OCD, but, I am also a fighter, and am kind, loving, warm-hearted, great with kids and love my family! Having Spina Bifida has definetely made my life "interesting" to say the least! I have had many ups and downs but I am just glad I have the support of my family and the prayers of my friends. Also, a loving mother who has been by my side through it all, the good and the bad! Boy, I feel sorry for her! Lol. Love you, Mom! Thanks for everything!






 

I do not recall every detail of my early life, but sometimes I consider that a "blessing!" I will try to tell you a little about my life and what exactly is Spina Bifida and Hydrocephalus? The one thing I do know is I have been through a lot and I'm still here!






 

I was born on February 21, 1984 at Johnson Memorial Hospital (JMH). I do not recall all of what occurred but I do know I was born with a hole in my back a result of the Spina Bifida and was a purplish, blue color. The hole needed to be closed immediately. JMH did not have the medical materials to handle such a critical case so my parents were told I should be taken to Riley Children's Hospital in Indianapolis. I remember my mother telling me a story about how it was suggested that my dad take me to Riley Hospital in his truck! I can picture my mom's face! She of course said that was crazy and they would get an ambulance to transfer me! I also, remember my mom telling me that they laid me on my back during the transfer and I am not sure of all the reasons why that was bad but with my Spina Bifida I should not of been laid on my back.






 

Most of what happened next I do not remember! So I will go on and tell you a little more about Spina Bifida and other issues I have as well! Someone born with Spina Bifida, also called "split spine," is born with an opening in the spine as I explained earlier. A healthy spine is closed to protect the spinal cord. As a result of the opening, the nerves are usually damaged causing paralysis below the damaged area. I am paralyzed from my waist down. There are three known forms of Spina Bifida. Occulta which is the least serious, I believe, the opening is covered by skin causing little or no problems. Another form called meningocele, meninges, membranes that cover the brain and spinal cord, push through the opening forming a fluid-filled sac. The person usually has no problems. The most severe form is myelomengocele, this is the form I have. The person is born with a sac protruding from the opening in the spine. This sac contains nerves and parts of the spinal cord. The person will most likely be paralyzed.

 

Hydrocephalus is another complication of being born with Spina Bifida. I have this as well! Hydrocephalus is referred to as, "water on the brain." Spinal fluid collects in the or around the brain. A shunt is placed to drain the excess fluid. A shunt is a device that is made of synthetic material. It allows spinal fuid to flow from the brain. There is now a type of shunt, called a "programmable shunt," which the doctor can adjust the flow or pressure. I do not have this type! Unfortuntely, shunts are supposed to last up to six years but can malfunction at any time. If they malfunction the person usually experiences, nausea, severe headache that worsens and refuses to go away, and dizziness, and something called sunset eyes, I believe. The shunt must be replaced imediately to avoid permanent brain damage and/or death. My shunt is the original shunt. I have had several revisions on the tubing and valve. Doctors sometimes call it "the miracle shunt" because it has lasted this long!! Individuals with Spina Bifida may also have trouble with their bowels and bladder. Some may wear diapers while others cathe and, for example, I have something called a MACE. Individuals with Spina Bifida may also receive physical, occupational, and speech therapy as a child! I did! Other issues they may face are social, mental, and possibly depression! Some individuals require more help. I am very independent for the most part!

 

I have faced multiple surgeries in my life. It is too difficult to name them all. People born with Spina Bifida also often have allergies to Latex, natural rubber, and some food allergies. I have a severe, life-threatening reaction to latex causing me to carry an epi-pen at all times! Knock on wood! I have never had to use it!

 

I am now 26 years old. I graduated from Indian Creek High School and went to college for a while but some health problems among other things I decided to stop. If I decide to go back I will change my major to Psychology or Social Work! I love helping others! And I especially love working with young children! They are rarely afraid of my wheelchair and crack me up! :) I am in a bit of a rut right now in my life but hopefully things will get better! I wouldn't say I have a big family but I am the youngest. I have two older brothers, a sister, and a sister-in-law! I have three nephews and three neices. They are the best things in my life! Even though some of them are teenagers and I do not see them as often as I wish I could and, well, their teenagers need I say more! Lol. But, I love them no matter what! I spend most of my spare time right now babysitting my youngest nephew, who is 3. He is the cutest thing in the world! But can be a little goober! His older sister is 8 and is in second grade so we do not see her quite as often as we used to but I cannot wait for summer break so I can spend time with her! They are my everything! I also volunteer once a week at the elementary school in the special ed. classroom. I like it a lot! There's never a dull moment! I am driving more and trying to look for a job! I am trying to get my life back on track. A slow process but at least I'm moving forward in some areas!

 

I have two loving parents, a grandmother who is also a red head like me, and you know what they say about red -heads! But she is also very loving and a great cook! I have learned a lot from her. My grandfather has passed but I am told I look a lot like him and I think I inherited some of his traits! He was very particular! Lol. My mother is the oldest of four girls! I have three aunts that I love very much and want only to see me succeed in life and not let my disability hold me back! I have plenty of cousins and extended family! One of my cousins just recently joined the Marines, God Bless Luke! Be Safe! I also have cousins that live in Washington State. They have one of the cutest little boys I have ever ment. He is so smart and absolutely adorable! Hi, Hunter Kai! I hope to see them again soon! Love you guys! That's all on my mother's side! On my dad's side I have aunts, uncles, cousins, etc. unfortunately I do not see them real often. My dad's mom has passed but I will always rememeber her in my heart and thoughts! She was so kind, and loving! I loved going to her house because she always made my favorite-chicken 'N' noodles, or as she got older my parents would order from Gray's. O.K, now I'm Hungry!!! :) She also had pet squirrels that she would feed out her bedroom window. I got to feed them once they were so cute! She also taught me how to look in a persimmon seed to predict the weather! I also loved playing cards with her and hide the thimble! :)

 

Well, there is a ton more stories I could probably share about my family and I'm sure I will add more later. But for now, well, that's about it! I hope you have enjoyed and learned something from reading this! I may have given you the impression that I hate being disabled or allow my disability to define who I am, and, maybe in a small part I do. But, I am glad to be different, special, an individual! And I may not have reached my full potential yet but that's one thing I still got is time! I do tend to keep my emotions bottled up inside but I am trying! I may have committed some wrongs in my life, I may have my faults, I am not perfect. I am human! "And if you cannot handle me at my worst than you sure as heck don't deserve me at my best." Tata. "I am who I am."


© Copyright 2020 Victoria Pauley. All rights reserved.

  • Facebook
  • Twitter
  • Reddit
  • Pinterest
  • Invite

Add Your Comments:

Comments