October is Spina Bifida awareness month. I was originally going to write this as a “Facts you may not know about Spina Bifida” post. But there are so many of those online and they’re pretty impersonal. So instead, here are 5 Facts About My Spina Bifida.
- I have myelomeningocele, which is the most severe form of Spina Bifida. This means that before I was born, my spinal cord grew out of an opening in my spine.
- Most people think that Spina Bifida and Hydrocephalus always go together but that isn’t always true. In fact, I have SB but not Hydrocephalus but my half-sister has Hydrocephalus and not SB.
- I have had innumerable surgeries and procedures for my Spina Bifida. I have had my spinal cord untethered twice. I’ve had numerous surgeries on my feet: my arches adjusted, my toe tendons cut, and my ankle bones fused with staples. I’ve had the muscles around my bladder tightened. As well, I’ve needed about a hojillion ultrasounds of my kidneys.
- My spinal lesion is at the L5 vertebra. The impairments I experience include bladder and bowel incontinence and widespread numbness below the knees. My right side is much more strongly effected than my left. Despite the numbness in my legs, I am able to walk. Sometimes on my bad days I use a crutch on my weak side. If it’s going to be a long day out I will take my wheelchair.
- The public perception seems to be that people with this condition cannot lead normal lives. While everyone’s impairment is different, in my case this is 100% untrue. I attended various gifted programs throughout school. I attained an associate’s degree at the age of 17. I’ve been married for 16 years and have raised 2 wonderful, able-bodied children. I have an awesome job that I love, as well as a home business I am incredibly proud of.
For more information, you can check out the Spina Bifida and Hydrocephalus Association of Canada.