Spina Bifida Awareness Month Begins Today

October is Spina Bifida Awareness Month. So I wanted to share my story again. Read on: 

I was born with myelomeningocele (pronounced "Milo My Ninja Seal") Spina Bifida at the L1, L2 region of my spine. You can read all about the different forms of SB here. This means that the Spina Bifida lesion on my spine was in the lumbar region at the 1st and 2nd vertebrae of the lumbar region. I am paralyzed from my knees down. I use to walk with leg braces and crutches until they started to cause pressure sores, or blisters, on my feet. So I decided at the age of 12-13 to just use my wheelchair permanently. I don't regret that at all. For me, it is what it is. Braces or wheelchair---for me, it doesn't matter how I get around as long as I do. And, truthfully, the wheelchair gives me a certain independence and speed that leg braces just could not do. 

In 1975, they didn't really have the technology they do today with ultrasounds and such. So no one knew that I would be born with SB until I was actually born. I still moved around inside mom's belly just like my brothers did before me. They don't have SB, by the way. At birth, the lesion in my spine was repaired as much as possible and my back was sewn shut. I developed hydrocephalus when I was 10 days old and the VP Shunt was put in place on the 11th day. It was revised again before I was a yr old and hasn't been revised or used since. I still have the same shunt today and it's still not in use. In all, I have had over 50 operations in my life. Literally from head(the shunt) to toe(to straighten my big toe) and everywhere in between. However, I don't have that many scars. Some of the surgeries were redone. Because of so many hospital stays and doctor visits, I am severely allergic to ALL latex products. 

I went to school just like everyone else and had someone assist me in getting to my classes with my books until my senior year when I chose to go at it alone. I never had any of the comprehension or learning issues that are sometimes common with SB. In fact, I was an A & B honor roll student with the occasional C in math. No one ever ostracized me or teased me because of my disability(that I know of, anyway!) and I always had a ton of friends...still do to this day. Socializing is something that has always come very easy for me. 

Now for all the yucky personal stuff related to Spina Bifida. YES!!! I CAN have sex. I have been told that women with SB have multiple orgasms easier and more frequently than women without SB. I don't know if it's true. I only know of my experiences. All my life, I have dealt with the urinary and fecal incontinence that is so common with SB. Urinary incontinence is most often controlled by using a urinary catheter and inserting it into the bladder to empty it of the urine. I do this every 4 or 5 hours. Fecal incontinence...Ugh.....no one likes talking about shit, right???? Oh well, Its a must in this case. Yes, I suffer through it as well. People with SB often lack the ability of being able to "hold it" when they have a bowel movement. So "accidents" do occur. Yes, it can be embarrassing and it can fuck up your entire day....but Shit Happens...You deal with it and move on. I am, however, very careful about what I eat when I'm around friends and family that have not dealt with this issue to spare them of it. I do the same if I'm out somewhere and they don't have wheelchair accessible bathrooms. 

Now for all the important information and statistics to tell you exactly what SB is now that you know how it relates to me. There is no treatment or cure to get rid of it. Once you're born with it, you have it for the rest of your life. And it affects your life and that of your loved ones in a way that you can't imagine unless you do have it yourself. Its a lifetime financial cost of $532,000-$1,000,000....much of which hasn't always been paid by insurances because of the "pre-existing condition clause" that use to be in effect before Obamacare. It's urinary and fecal incontinence for most. It's pressure sores and shunts. It's deadly infections. It's a lifetime of surgeries, specialists and doctors' visits. It's deadly allergic reactions to latex for most. It's kids suffering ostracism from their schoolmates for "being different". Its mental and social issues for some. Its a minimum of 166,000 living with this disability in the US alone. Its abortions because moms cant handle dealing with these issues. In fact, according to a recent Wayne State University study of several countries, the study found that 64% of the children diagnosed in utero with Spina Bifida were aborted. 64%!!! There is no KNOWN cause. There are only hypothetical guesses as to why it occurs. It's an average of 8 babies per day in the US born with Spina Bifida or a similar defect of the brain or spine. Its that Hispanic mothers are 1-1/2 times more likely to give birth to a child with Spina Bifida than non-Hispanic Caucasians. It's the most common permanently disabling birth defect in the US--its more common than Muscular Dystrophy, Cystic Fibrosis and Cerebral Palsy(which are all well known and advocated for disabilities) combined. Currently, there are about 3.5 MILLION people with Spina Bifida in the world. Folic acid MIGHT HELP prevent it by as much as 75%. But there is no guarantee. 

So----what is "it"????? Spina Bifida is a neural tube defect that occurs when the spinal structure fails to form and close properly. This occurs in utero during the first 2-4 weeks after conception, before most women even know they’re pregnant. There are 3 main types of Spina Bifida: Occulta, Meningocele(pronounced like "my ninja seal"), and Myelomeningocele(pronounced like "Milo my ninja seal"). Occulta and Meningocele are a less severe form of Spina Bifida. People with these types of Spina Bifida may have minor disabilities or no problems at all. Myelomeningocele is the most common and severe form of Spina Bifida. Most people that have this form are almost always in a wheelchair. It is also the form of SB I was born with. This occurs when the meninges of the spine and spinal nerves actually come through the opening in the spine. This form of Spina Bifida can cause the most nerve damage resulting in disabilities. Spina Bifida isn't a birth defect of the poor, the malnourished, or the underprivileged. It knows no geographical or socioeconomic boundaries. The country with the highest rate of SB occurring is Ireland. Anyone with SB has the chance to live long lives, just like anyone else.