Friday, June 10, 2011

Living with Spina Bifida

I was born with Spina Bifida, a neurological condition that is usually heredity- based, which means it can run in your family.If you and your brother both have blue eyes, it could be because of your heredity. Heredity is a trait that you have in common with someone else in your family. Spina Bifida occurs when the fetus is just forming, and something causes the cells to stop growing. It occurs during the first few weeks of pregnancy and almost always effects the spinal column. There are a few types or degrees of damage. When the spinal column stops growing top to bottom, the growth of the fetus is also effected from left to right. Often, the area that grows around the tummy to the back stops growing when the spinal column stops growing from top to bottom. Sometimes it just causes a small cyst-like area, but most times it causes an opening or hole to be somewhere on the back. During pregnancy, the fetus is in amneotic fluid and when there is a hole, the fluid can "flush out" nerve endings outside of the body. These nerve endings can tangle and cause alot of nerve damage. So, depending on where the defect (hole) is can determine how much damage is done. The higher the hole (on the spinal column) the higher the damage is located. For example, if the defect is just below the skull, then your arms and lungs and parts of the upper body can be damaged or restricted. If the defect is lower on the back, then your legs and digestive areas can be damaged. My defect was low on my back, so my legs and feet and all of my digestive system was damaged. I have been confined to a wheelchair since I was 5 years old  and I have both bladder and bowel incontinence, which means I have to have help to go to the bathroom. This is pretty common for folks with Spina Bifida.

    I have alot of physical limitations. I cannot run or walk or even stand alone, but I can do most things from my chair. I can dress myself and feed myself and I enjoy alots of things that other kids my age enjoy. I can go to the movies and restaurants with family or friends, but I often need help getting in the doors or getting up close to tables. Except for not being able to walk, I can do most things that you can do. I have friends over for sleep-overs and we can do other fun things together. I just need help sometimes.

   When you are born with Spina Bifida, you have to have surgeries to help stop more damage to the nerve endings. I had my first surgery when I was just a few hours old. The doctors did an operation to close the hole in my back. They also had to put a shunt in my head to keep spinal fluid from gathering in my skull. The shunt is very small and looks like a perfume sprayer/tube. It drains the fluid into a tube that takes it down my body and empties into an area near my stomach. The fluid is absorbed into the body and is released as sweat and things like that. Placing that long, small tube inside my body was another surgery I had as a new born baby. But it doesn't hurt me and it doesn't show. It just helps keep me from getting sick again. I have had over 20 surgeries in my life, but they were done to keep me alive and to help me have a better life. I take a few medicines every day to help me stay well. In most ways, I live my life the same way that you do.

   When I was in school, I went to classes just like the rest of my friends. I also went to special classes to help me when I needed more help to understand what the class was teaching me. Lots of kids without Spina Bifida go to those types of classes too. I had special P.E. classes too, because I could not do alot of the exercises or games the other kids did, but the teachers helped me to do things that I was able to do. I couldn't run around a track, but I could wheel myself around the track in my wheelchair. So, we would modify or change parts of an exercise so I could do it while in my wheelchair. I did finish High School and now I live with my parents out in the country. We made changes to our house to make it easier for me to do daily chores. For example, we took out the bathtub in my bathroom. We made a large shower area and I have a special wheelchair to use in the shower. I roll into the shower in my shower wheelchair and I don't have to step into a tub. We made the doorways larger so that I can push myself thru the doors in my wheelchair. We put some drinking glasses in a lower cabinet so that I can reach them by myself and things I use in lower sections in the refigerator. I have a special seat in my car that moves outside of the car and lowers down so that I can transfer, or move myself, over from my wheelchair into the carseat. Then I push a button that makes the carseat move up and back into the car. That keeps my Mom or Dad from having to lift me in or out of the car. I call it my "Princess Ride" .

So all in all, I have a pretty sweet life and I am enjoying life. I just tried to give a  simplified description of Spina Bifida, its causes and its effect in my life. As with any other condition, there are many other variations or complications from this form of birth defect. Everyone is different . My relative was born with Spina Bifida about 13-15 years before me and you can't tell she has Spina Bifida. She walks and does things like any other person. She even had 3 children!! None of them have Spina Bifida, but they could be carrying the defective gene that causes Spina Bifida in the first place. So, when they begin their families, they will need to be watched carefully. Medical technology has come so far since I was born that they should have many advantages now and can do alot of things to lessen the damage that can be caused by Spina Bifida. If anyone has any questions, feel free to contact me and I will try to answer them.

3 comments:

Connie said...

Hi, Randee!
My name is Connie and my 27 year old son has Spina Bifida, too. Your description of SB is awesome...you explained it very clearly and it is easy to understand.

You and John Mark have had many of the same experiences, except he does not use a wheelchair.

You encouraged me with your explanation of your disability and how you don't allow it to place limits on how you enjoy your life. I appreciate that!

So, God bless! Thanks for posting...I will definitely come back to read more in the future!

Randee said...

Mrs. Connie,
I'm so glad that you found this post and wrote to me. On the post though. I didn't write it. I asked my wonderful Mom to help me word stuff. So , she ended up typing it all for me while I was sitting next to her. We tried towrite it so people at all ages could read it. I think that she did an absolute fantastic job. I couldn't have done it without her. She's my attendant too. She and I just sat here and read some of your posts about John Mark , He's 1 yr. older than me. I just turned 26 yrs. old on May 15th. My Mom asked me to give you her Name & e - mail address. Her name is "Elaine" , her E - mail address is jdandemc@koyote.com & My name of course is "Randee" , My e - mail is monkeevillegrl19@yahoo.com . Have a great day. HAPPY B - LATED BIRTHDAY JOHN MARK! - Randee

Tiffany said...

Hi Randee! Wow, thank you for sharing your story. You are an inspiration and your honesty and integrity is something to admire. I look forward to reading more of your blog.