Despite the fact that I felt sick to my stomach since late last night, and therefore couldn’t go to UCF today, I think I got a lot done! Since I was very little, I have had to deal with intestinal problems. It’s just yet another thing that goes with the spina bifida territory. It’s not uncommon at all, but it is incredibly frustrating and painful, especially for someone like me, who can walk. It’s a trade off– I was born with little nerve damage below the spina bifida lesion, but as a result, I feel every single thing that happens to my stomach. In other words, what I basically lost was function, not sensation. That can get to be very inconvenient.
Since my early teens, I have been hearing of a procedure that they call “ACE,” for antegrade continence enema, in which a urologist surgically creates a tube using tissue from either the patient’s appendix or intestine. The surgeon will make a stoma, which is an opening, either in the navel or in the lower right side of the belly. This allows for the insertion of a catheter that passes through the stoma, into the bowel. The idea is that through this catheter, a normal saline solution can be used to flush the bowel, therefore solving the problem of incontinence. Of course, it’s not guaranteed that, after enduring all this, that it will work as planned.
This is why I have not elected to have the surgery. Maybe it’s just a psychological thing, but I feel that someone is tampering with my internal locus of control (any psych majors, feel free to post the definition!) when I think of my incontinence. To me, having the surgery would be the equivalent of surrendering to the evil nemesis of mine that has been spina bifida. At age 22, you would think I would have more intellectual concerns than whether or not I am “potty-trained.” That’s why “Laura the college student” and “Laura the girl with spina bifida” struggle to inhabit the same body. To be seen as an individual with spina bifida is to be seen as someone who carries all the baggage that this brings.
That being said, I don’t wish to discourage any parents or people with SB who are considering having this procedure. Honestly, it seems to work well for the majority. This is simply how I feel, and I don’t mean to suggest that, if anyone is having serious problems, that they should ignore the symptoms and not have surgery.
But, I think we’re good with that biology lesson for today (she said, as she rubbed her stomach, once again in pain).
In other news, I owe a very big “thank-you” to Daryn Kagan, former CNN anchor who established www.DarynKagan.com. This incredible Web site serves to share uplifting stories, and she actually wrote about my request to Bill Hemmer that he be “our hero” on her personal blog!
I sent Daryn an E-mail, urging her to keep in touch with me, and hopefully she will continue supporting our cause by spreading the word. As Bill’s close, personal friend, I can’t imagine that she would do otherwise.
As athletic as she is professional on-camera, Kagan has raced for the annual “Toyota Pro/Celebrity Race” which takes place in Long Beach, Calif., and raises funds for “Racing for Kids,” a nonprofit benefiting children’s hospitals in Long Beach and Orange County, Calif. I really hope that she will able to help us mobilize others for our cause. And, I’d like to share that I spoke to our mutual friend Bill Hemmer today! We have been exchanging ideas through E-mail, and he called me (YAY!) to put our heads together. It’s clear that he really wants to help us out, in whatever capacity he can. Needless to say, I was thrilled to hear from him, and it is reassuring to know that he doesn’t just want to be a bystander of the spina bifida cause.
Before I sign off, I want to share a link to a great blog that was started recently by my new friend, Andrea. Her precious daughter, Rowan, has severe hydrocephalus, cerebral palsy, and epilepsy. Andrea is documenting Rowan’s struggles and triumphs, as well as advocating the search for a cure for hydrocephalus. Here’s her site: http://andreajunelleb.blogs.gabrielslife.org/. Please follow and support it, as it is a great, worthy endeavor! I’m rooting for you, Andrea and Rowie!
And now, here’s a special treat that got me through the day– that is, until Bill called! I found this great video on DarynKagan.com, and it seriously made me crack up, and elicit strange noises that I never make when laughing. I’m going to try to teach some dance moves to my little yellow parakeet, Soleil. (Right now, all she does is ring a bell and make dolphin-like noises when angry.) Here’s the video. Enjoy!