WARNING – Same as before!!! Brutal honesty that might upset many individuals!!!I
As I scroll through these Spina Bifida Facebook groups, I find many issues with certain post, comments, and advice. It fascinates me how many people post questions about medical situations that they find themselves in but never mention going to see the doctor. They try to connect anything and everything to SB! The comments and advice are even more fascinating as it seems everyone gives advice but yet most of them do not mention going to the doctors. While I know some of them work in the medical field as RN’s and in other positions, their advice is pretty actually relevant and coming from their background in the designated fields. These are not the people that I am fascinated with, those are the people that they should be listening to!
Spina Bifida, no matter where your lesion may be, comes with so many other medical issues. Mobility, urinary, and bowel issues are major problems. Other diagnosis could include (but not limited to) Tethered Cord Syndrome, Hydrocephalus (which may or may not require a shunt), Chairi Malformation, neurological problems, orthopedic problems and some learning problems especially with math. However, again this all is determined by the severity of the particular Spina Bifida that someone has (there are three types) and where the lesion may be on the spine. Also, just to state this, the medical community still does not know why SB happens. It happens so early in the pregnancy (around 28 days) that most people don’t even know they are pregnant. So all of this Folic Acid stuff is not a guarantee that the baby will not develop SB.
So back to my fascination with these post. It seems like everything from a sore throat, a cold, a funny shaped mole, to even personality they want to relate back to SB. Now understand I am exaggerating a little, however when you see these post it tends to get annoying. There are going to be a lot you encounter in life, but trying to relate all of this back to SB is absurd to me. It seems like some of these people do not want to take ownership for issues in their lives. You can’t go through life saying that your negative attitude is because of SB. You choose how you want to live with the cards you have been dealt. You choose whether or not you want to be positive or negative in your attitude and towards others. Spina Bifida does not choose for you!!!
I understand having SB is hard and we go through so much medically and psychologically, however it is what you do with that experience that makes you become the person who you are today. I am not going to let the surgeries, the “no we can’t help you”, and the “you can’t do this” effect my outlook on my life. It also isn’t going to stop me from proving doctors wrong. SB is definitely not going to make me so thin-skinned that I get hurt by something someone might say about me or if they tell me something I don’t want to hear!
I just want to tell these people to take ownership and stop blaming your disability for the things you can control. However, if you can’t take ownership then maybe you need to speak to a professional about those issues. I promise that a negative attitude and blaming certain things on your disability will not get you very far in life. If you want to be respected and looked up to, please stop complaining and asking for pity. Take a stand and be a better version of yourself. Start a new chapter, a brighter chapter that will lead to a brighter, happier future!
Christina Shuffle 
Nice post. The great thing is, that when one takes responsibility for their life, we get to take responsibility for our own successes. That also means we are responsible for our failures. Accountability goes a long way.