Spina Bifida Awareness Month Ends Today, But Not Spina Bifida

October is Spina Bifida (aka, SB) awareness month. I had high hopes for advocating and creating awareness for it this month, after all, it's the disability I was born with. I started off the month strong, posting blogs and posting on all the different forms of social media. I even had celebs to retweet my blog! Then halfway through the month, I travelled to my hometown and was pretty busy for more than 2 weeks...then I came down with a horrendous sinus cold that I still have. All of that hindered me a great deal from spreading awareness. That saddens me. Because SB is still overshadowed by other disabilities and more well known afflictions. Yet, Spina Bifida occurs more frequently than Muscular Dystrophy, Multiple Sclerosis and Cystic Fibrosis....more than all three of those----COMBINED.

So, while my educating for a worthy cause dear to my heart stopped, the SB didn't. I still have it. It didn't go away. It never will. I will have SB and be in a wheelchair for the rest of my life. And, quite frankly, Im okay with that. I don't suffer from SB. It suffers from me. 

But just for shits and giggles, let's discuss what SB is and how it affects me. The short answer is that it doesn't really affect me at all. Anyone that knows me, knows that I am one badass chick. But, I digress. Here's my SB story:

I am 39 years old and was born with myelomeningocele ( thats pronounced as Milo, my ninja seal) at the L1, L2 region of my spine. This means that the Spina Bifida lesion on my spine is in the lumbar region at the 1st and 2nd vertebrae. 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 in 1991 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 actually, my wheelchair gives me a certain level of speed and  independence that braces never did.

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 a Ventriculoperitoneal Shunt(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 and a few latex related foods.

I went to school just like everyone else and had someone assist me in getting to my classes and with carrying 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 common with SB. In fact, I was an A & B honor roll student with the occasional C in math, which actually COULD be contributed with some of the SB comprehension issues. 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, of which I will not go into detail. 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 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.

So, now that you know more about Spina Bifida and ME, does it change how you see me or feel about me? Do you have questions concerning something that I didn't cover here regarding SB, disabilities or life in a wheelchair?

Now for that picture of what my back looks like today. I almost decided not to post it, but I really think it's important for you to know what we're talking about here.