October is Spina Bifida Awareness Month.
I was born with Spina Bifida and it is only befitting that in the month of October I write a post on SB as I call it for short.
Spina bifida is a birth defect where there is incomplete closing of the backbone and membranes around the spinal cord. The associated problems of SB include poor ability to walk, problems with bladder or bowel control, hydrocephalus, a tethered spinal cord, and latex allergy. Learning problems are relatively uncommon. While these are some of the problems associated with SB, it is important to note that it appears differently in everyone.
Types of Spina Bifida.
- Occult Spinal Dysraphism (OSD)
Children born with OCD will have a dimple in their lower back. With OSD, the spinal cord may not grown the right way and can cause problems for the child growing up. A doctor has to check using special tools and conduct tests to make sure that the child has OSD as most babies born with dimples in their lower backs do not have OSD.
- Spina Bifida Occulta
Spina Bifida Occulta is often called the hidden spina bifida because 15% of healthy people have it and do not know that they have it as it does not usually cause harm and does not have any visible signs as the spinal cord and nerves are usually fine. It is often discovered when people have an X-ray of their back taken usually done for other reasons. A small percentage of people with spina bifida occulta will experience pain and neurological symptoms.
A meningocele causes part of the spinal cord to come through the spine like a sac that is pushed out. Nerve fluid is in the sac, and there is usually no nerve damage. Individuals with this condition may have minor disabilities.
- Myelomeningocele (Meningomyelocele), also called Spina Bifida Cystica
This is the most severe form of Spina Bifida as it happens when parts of the spinal cord and nerves come through the open part of the spine. It causes nerve damage and other disabilities. 70 to 90% of children with this condition also have too much fluid on their brains. This happens because fluid that protects the brain and spinal cord is unable to drain like it should. The fluid builds up, causing pressure and swelling. Without treatment, a person’s head grows too big, and may have brain damage.
I do not know which type of Spina Bifida I have as I have never asked my parents.
I proudly rock Spina Bifida but I have to admit some days it rocks me. Growing up I was never bothered by my disability, I have my parents to thank for this because they created a normal environment for me. However now that I am older in my late 20s, I won’t lie, at times it does bother me and it bothers me a lot. On some days especially the bad ones I wish I wasn’t born with Spina Bifida, on those days when I wake up with back pain or when I struggle to find a perfect position to sleep in. On those days when my disability bothers me I wish my feet were the same length because it makes shoe shopping difficult. Spending more than half an hour just looking for a perfect pair of shoes is not my kind of fun. On those bad days when I hate my disability, I wish my legs were the same length because it makes walking difficult as there’s always pressure on the right leg the shorter leg.
One thing that really sucks about having a disability is the stares from people. Everywhere that I go people stare at me and sometimes it makes me extremely uncomfortable. I hate it. I long for the day when I can walk in public without anyone staring at me. Then there’s the pity comments from people who think that having a disability is the most terrible thing that could happen to a person.
After all is said and done, spina bifida is the hand God chose for me so here I am still rocking Spina Bifida despite the challenges that comes with it. To all my fellow SBs (totally made that up) shout out to you amazing men and women, you inspire me to keep going.