Given the fact that I have noticed some trends and common threads among several questions I have received, I decided to create a page for “Frequently Asked Questions.” Of course, that doesn’t mean you can’t ask other questions. Ask away! If you’re curious or wondering about anything related to me or to spina bifida, please send me an E-mail at: firstname.lastname@example.org, and I’ll be happy to answer your questions to the best of my knowledge and experiences.
So, without further ado (as you’ll “hear” me say a lot!), I give you my personal answers to some questions:
Q: Do you walk or are you in a [wheel]chair? If you are in a chair, is it fairly easy to manage? Is our world easy to get around in while in a chair?
A: I am fortunate enough to be able to walk. I do use a manual (Quickie) wheelchair for college, malls, theme parks, and any other place where you would usually walk long distances. I used leg braces until I was about 18 or 19. Then I made the decision to stop using them, and probably not for the smartest reasons. Mainly, I was beginning to get VERY self-conscious of people staring at me all the time, even adults! (Well, what can I say when the adults are just as bad as the kids with this sort of thing?) I know it’s rude of them, and that their ignorance is not my problem. But, I started out by swearing off shorts, and then just decided to do away with the leg braces completely.
Also, I had other non-superficial reasons. First off, I found them extremely uncomfortable. Especially in the Florida summer heat (or in Puerto Rico!), it can be particularly aggravating to have the plastic digging into your lower legs. And, if I itch, I can’t scratch when wearing them. Furthermore (and I’m really working hard to build a solid case here!), I realized that my calves had stopped growing because I was constantly wearing those dreaded things. In the end, I figured it was in my complete best interest to stop wearing them.
That having been said, my legs do get a little tired occasionally, but whose legs don’t? I also use the wheelchair because my neurosurgeon had cautioned me many years ago that carrying my bookbag wasn’t good for my back. So, I began using my wheelchair almost full-time during school hours in middle school.
Q. Did you have difficulties in school with learning? I’ve heard math can be difficult.
A. Yes, I’m sorry for all you nerds out there, but math is a drag. (I consider myself a “journalism nerd!”) I didn’t really struggle with it too much until middle school, and then in college I made the classic mistake of signing up for College Algebra in my first semester. (I mean, that’s what you’re supposed to take in college, right?) Well, I slacked off a little, and then I grew very discouraged. I failed the first time, and had to take it again. Fortunately, my awesome professor (who I decided to take the class with both times) dedicated a lot of time to tutoring me, and I also got a guy to tutor me twice a week. By then, I was really motivated, and determined to pass. I did pass, with a “C.” Not too shabby.
Then, for some ridiculous reason, I opted to take Liberal Arts Math instead of Statistics, which is what I needed to be taking if I wanted to get into UCF! I dropped the course the day of the Add/Drop deadline after getting a string of “D’s,” and today there is no evidence on my transcript that I ever made that mistake!
Finally, I took Statistics and passed with a “C.” I’m guessing (if I learned anything AT ALL in that class!), that this would be my average if I continued to take math courses, which I obviously won’t.
So, to answer the question, yes, I have indeed struggled with math. My advice, for any parent of a child with spina bifida (especially if you’re kid is going to college) is to tell him/her to take full advantage of the free tutoring that many colleges and universities offer. Seriously, peer tutoring is God’s gift to the whining college student. Don’t take it for granted!
Also, college students: do register with the Office for Students with Disabilities, or whatever they call it. They can guide you in determining what accommodations would be best for your particular situation. Whether you need a note-taker so that you can just sit back and enjoy (yeah, right!) the lecture, or if you need extra time on tests, you have the RIGHT to be afforded the best-quality education possible.
Q: Do you cath? If so, at what age did you start doing it yourself?
A. Yes, I have had to be catheterized (that is, peeing with a catheter) since I was five. Before that I had had a vesicostomy (a tiny hole in the lower belly) through which I urinated. I had had that vesicostomy since I was a baby, but when I was five, the doctors and my parents realized I was having too many urinary tract infections, and they decided to close the vesicostomy. Unfortunately, the idiot that performed the surgery failed to tell my parents that, now that I had nowhere to pee out of, that I now depended on catheterization. So, I was sent home without instructions. They had to return with me to the hospital (with yet another UTI), when finally the nurses took the time to explain to my parents how to cath me.
Until the age of twelve, my Mom would always have to go to my school after lunchtime to cath me. Either she did, or the female nurse at the school cathed me. Try as I did, I couldn’t learn how to self-cath until the sixth grade. In the seventh grade, I finally felt confident enough with a catheter that Mom stopped coming to school every day. I was emancipated.
Q. Along with bladder management, do you have bowel issues as well? If so, how have you dealt with those?
A. If I could do away with only ONE of the effects of having spina bifida, it would be bowel incontinence, no question about it. It is perhaps the one aspect of SB that makes me feel that I’m not yet self-sufficient, and over the many years, I have tried different remedies for it.
I’ve tried milk of magnesia, but I figured out that the taste is actually worse than the incontinence itself. I took “Cascara Sagrada” for several years. It’s a natural supplement found in health food stores to alleviate constipation, but it never really worked for me. (And I didn’t like that it often had the totally opposite, extreme effect.)
Lately, I’ve been using “stool softener.” It’s over the counter, and the generic name is ducosate sodium or something like that. I’ve been okay on it so far, but, as always, I could be better. I know I should be walking more often, and getting more exercise. I’m definitely working on it, and I try not to rely on my chair when I don’t need it. Around age 18, I made yet another decision on a whim that would affect the way I live my life: I stopped using “training underpants” (do NOT call them “diapers,” or I will personally hunt you down). It was something I felt I needed to achieve in order to consider myself an “adult.” My life has always been about learning to take back control. But, everyone can choose what areas in your life to take control of, and my life is certainly not a textbook for you to follow. (I will offer this sound piece of advice: do NOT go “commando.” That doesn’t help anybody, least of all whoever does your laundry!
Q. What kind of surgeries have you had along the way?
A. If I haven’t mentioned this already (I honestly don’t remember if I did!), I have had a total of 19 surgeries. The first one, of course, was the closing of the myelomeningocele. You can read about that and see a picture of my very first surgery in the “My Personal History” section of my Web site. After that, I had a few surgeries on both my legs and feet, to straighten them out. Then came the initial shunt insertion when I was about a week or two weeks old. The first shunt I had drained into my heart cavity, and it failed. So, many revisions followed after that. My current shunt, which I’ve had (fortunately!) for almost the past five years, is ventriculo-peritoneal (VP), which means that it drains into my abdominal cavity.
At age ten, right before Christmas, I had one of the most grueling operations of all– a bladder augmentation. As the name suggests, this procedure is meant to make the bladder bigger, thereby preventing constant wetting and infections. The way my urologist did this is he took tissue from my intestine and used it for the bladder. The recovery for that particular surgery is long and painful. I was in the hospital for a total of eight days, and almost the entire time, I was not allowed to eat or drink anything. The night before the surgery, my bowels were completely flushed. I had a tube inserted down my nose (while I was conscious!) and I gagged. I lost about ten pounds on what I like to call the “malNutriSystem.”
As if that weren’t enough, I had three foley catheters (meaning catheters with a bag attached) in me, and I was peeing pure blood into every single one of them.
To this day, I don’t know if my parents and I made the right choice in consenting to that surgery. Sure, my infections are no longer as bad as they used to be, but I still get them all the time. Now, add to that the fact that, since the surgery, I haven’t been able to urinate without the aid of a catheter– at all. Hopefully, all of you reading this who may need to decide whether or not to have the surgery sometime in the future, will at least have a little more information with this testimony, so that you can decide for yourself if the pros really do outweigh the cons.
Around age twelve, I had a tethercord release. Tethercord is a condition that usually occurs in people with SB during puberty. As the body is growing, the spine is stretching, but attached on the inside to the skin, causing the person to hunch over. Eventually, if not operated, it can lead to paralysis. Needless to say, I didn’t want that to happen. I remember I had that surgery on an October 27th. I was discharged from the hospital on Oct. 31, with strict orders to stay in bed. I went trick-or-treating in my wheelchair that night, with a massive headache and backache.
Again, you can probably see the recurring theme in my life about “taking control.” Sometimes, taking control is about breaking a few rules. I’ll admit, I get a huge sense of cocky satisfaction whenever I [successfully] disobey a doctor’s orders. It’s important to remember that, while your doctors usually have your best interest at heart, they do not live with you, and you know yourself better than anyone else does.
If you have questions, please send them to: email@example.com.