Hello everyone! I have been getting a lot of questions about my disability and often the questions start out with "Can I ask you a personal question?" Every time someone says that, I know they are going to ask me about my disability. I really don't mind talking about it. That's why I decided to write this blog. There are a few personal things that I don't like to openly share about having Spina Bifida, but everything else is fine. Sorry if this turns out to be a long post. There is a lot of information.
Spina Bifida is a neural tube birth defect and it is the most common birth defect in the United States. The word Spina Bifida means "split spine" and it happens when a baby's spinal column does not completely close while it is still in the womb. I was born with Myelomeningocele (Milo My Ninja Seal), which is the most severe type of Spina Bifida. There are three types and you can find more information on them here. The severity of Spina Bifida depends on where the hole is in the spine. Mine is between the L2-L4 (Lumbar) region of my spine. No one was aware that I was going to be born with Spina Bifida until I was actually born because the doctors did not have the technology and appropriate tests that exist today.
I walk with braces and crutches and I use a wheelchair when I have to travel long distances. I can't walk without holding onto something. I don't have feeling on the back of my legs and, as a result, it causes pressure sores. Luckily, I have never had any major problems with the pressure sores on the back of my legs, but I do have to be very careful. I also don't have any sensation on my feet and they are paralyzed. I have poor circulation on my feet and they turn a lovely shade of purple sometimes lol.
I have a secondary medical condition called Hydrocephalus, which means "water on the brain." My spinal fluid got stuck in my brain when I was born and I needed to be shunted when I was a day old in order to drain the fluid out of my head. I still have the same shunt that was put in when I was 6 years old. I will have a shunt for the rest of my life. In total, I've had about 14 operations. You can read more about Hydrocephalus here.
From Kindergarten to the 12th grade, I went to public school. I was always the only kid with a physical disability in the entire school and I did get bullied for it in the younger grades. I didn't have a problem making friends, though.I had an aide help me get to my classes and carry my books until I was in the 10th grade. I decided that I wanted to be more independent and I did everything on my own from 10-12th grade. For those two years, I had student aides assigned to me on different days just to help me get my books out of my locker and help me with my wheelchair at the beginning and end of the day. I walked with a walker from Kindergarten to 2nd grade and I started using crutches from then on. I still remember the day that I used crutches for the very first time. When I was in high school I walked with crutches and I used a wheelchair, too. Academically, I struggled with reading comprehension and mathematics. This is very common in individuals with SB.
I had a Physical Therapist and an Occupational Therapist come to school for an hour to meet with me once a week from Kindergarten to 12th grade. The Physical Therapist helped me work on strengthening my arms and legs and Occupational Therapist helped me with my fine and gross motor skills. I no longer have PT or OT. I just go to the gym a few days a week to keep up the walking and strength training.
As much as I struggled, it was all worth it. My parents did have to push me to do things and push other people to do things, but I am so grateful for it. I would have been so much more limited had they not pushed....and pushed....and pushed. The way I look at it is that I wouldn't have experience things if it wasn't for Spina Bifida. I don't know what it's like to not be disabled and I wouldn't change any of it.
Well, I think that about covers it! lol Sorry it is so long. I tried not to ramble too much, but I had a lot to talk about. I hope this clears up some things and if you have any other questions, you can always ask me or visit the Spina Bifida Association website :)
love the titlw
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