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Well, here I am, in my 30's, and now, for the first time, am sharing "my story." That is, the story of
Anyway, I realize now, that perhaps this is all part of God's plan for my life - to share with you this story, and to encourage those with limitations to never underestimate themselves, and to have faith, even when we are faced with limitations or challenges, similiar to what I'm about to share with you now. So, let me begin...
I was born with Spina Bifida, which is
Latin for "open spine."
Spina Bifida is a birth condition characterized by an
incomplete closure of the vertebrae surrounding
Although spina bifida has different forms and varying degrees of effect,
The causes of spina bifida have not been 100% determined; however, it is believed to be most prevalent in women with a decreased amount of folic
acid in their bodies at the time of the development of the fetus's spinal
cord and vertebrae. Therefore, most OB/GYNs will now recommend that women wanting to become pregnant take increased oral
doses of folic acid prior to conception, along with eating foods rich in the
nutrient. Spina bifida is not rare. It occurs in two of every 1,000 children born.
spina bifida, and how it has (or hasn't) affected my life. Interestingly enough, when I first began
creating my website in 1997, the thought never occurred to me that I might share this story in an effort
to help others. In fact, for most of my life, I've lived as "normally" as possible, preferring to blend into the woodwork rather than to call any attention to myself. I didn't want my disability to define me...and it doesn't. 
Before I go on, I must add that I credit my mother for enabling me with those every day, normal life opportunities while growing up. Once my 3 younger siblings were born, there really wasn't time to treat me with any special care. I was and always will be, just one of the gang, and for that, I'm grateful.
the spinal cord.
Where the vertebrae fail to close around the spinal cord, the cord
protrudes outside
the body of an infant at childbirth. During
delivery, particularly those who are born vaginally, damage
occurs to the unprotected and protruding portion of the spinal cord.
Since the spinal cord contains all the nerves that control every
function of
the body, there may be varying amounts of muscle paralysis,
bladder and
bowel problems, loss of skin sensation, and spine and
limb problems
anywhere below the level of the spinal cord anomaly. Most
babies with spina
bifida also develop hydrocephalus, the
accumulation of fluid in the brain.
most babies born with the condition will need surgeries to correct spinal,
foot or leg problems; shunt surgery to drain fluid from the brain;
application of techniques to control bladder and bowel
function; and braces
and other equipment to assist in walking. With the
help of parents and a team
of doctors, therapists, teachers, and others,
persons with spina bifida can
achieve independence. 
pushed out in a section of the spinal column; and myelomeningocele, where both
the spinal cord and its coverings are out of position.
Okay, all that being said (basic textbook version)...here is how spina bifida has affected me specifically...
I was born with the "myelomeningocele" type that you read about
above. I was one of the lucky ones, actually. I did not have the
hydrocephalus (water on the brain) that over 95% of the babies born with
spina bifida usually have. Therefore, I did not have any learning/cognitive disabilities. In fact, I was always pretty smart, making the Honor Roll throughout all my high school years, and was typically a "B+" student in college.
I have complete feeling in my legs going all the way down to my feet. However, I have no feeling below my ankles. So, if I stepped on a nail or burned myself, I wouldn't feel it. Interestingly enough, I wouldn't turn down a foot massage because I can feel pressure...just not sensation. I can move my legs, bend, squat, kneel, crouch, etc. About the only thing I do not have the flexibility to do is sit "indian style." I believe this is because I had dislocated my hips while being born (breech) and when my hips were surgically "relocated" they became permanently inflexible. I walk without my crutches around the house, although I always use them in public. Without them, I am not very steady on my feet, and I lack good coordination. Walking with crutches comes easily to me, and I have plenty of agility and balance to go up and down steps with ease -- I'm just a little slower. I'm fiercely independent and, unless I look like I'm really struggling, please don't ask me if I want any help. Of course, if you're a gentleman, you WILL hold a door open for me, due to the mere fact that I am a woman and that's the polite thing for a man to do.
Orthopedic problems: Well, I finally broke down and started wearing small, plastic braces (AFO's) to keep my feet straight. My ankles are not very strong and my feet were turning in awkward positions more and more as the years have gone by. I put this off as long as I could, because it's difficult to find braces that are cosmetically appealing to me and that I would be able to wear with a decent-looking shoe. Because of my stubbornness and desire to not call extra attention to myself in the form of added "appliances" on my body, I chose to walk without the braces far longer than I should have. As I am getting older, however, I've changed my stance on this, and realize that proper foot positioning is better than vanity. I've been blessed with a very patient and understanding orthotist who has designed braces that are acceptable to me. (I was a little nervous at first, because I didn't think I'd ever get him to crack a smile), but truth be known, he really helped to make an uncomfortable situation a much more pleasant experience. In any case, the task of finding decent shoes has been a little more difficult, (I swear I'll never wear "granny shoes"), but with some patience, I think I'll eventually settle into a few pairs of something suitable.
And now...the potentially embarrassing stuff -- regarding other problems mentioned in the "textbook"
explanation of spina bifida...I have what is called a neurogenic bladder, and also occasionally tolerate IBS (irritable bowel syndrome). Sounds lovely, huh?! For the urinary system to work right, the muscles and nerves must work together to hold urine in the bladder and then release it at the right time. Nerves carry messages from the bladder to the brain, letting the brain know when the bladder is full. The nerves carry messages from the brain to the muscles of the bladder telling them either to tighten or release. In a neurogenic bladder, the nerves that are supposed to carry these messages do not work properly. This affects people in varying degrees, but for me it basically means that it is necessary to take medication on a regular basis. The medication is called " Detrol LA " and it enables me to keep my bladder from leaking at inopportune times. I take one pill twice a day and it works like a charm 99% of the time. On a lighter note, I'm probably the only person who can tell you where every public bathroom is located between here and Pittsburgh! (Okay, so I'm being a little fasecious here, but I've learned that sometimes humor can ease the pain of embarrassment!)
Spina bifida is not life-shortening. Most people with this disability live a normal life span, can give birth to children, and lead fairly active lives as long as they take care of themselves and not let the medical problems that they are born with deteriorate or cause additional problems. People with spina bifida can have professional careers in the working world, as long as they are able to manage their bowel and bladder limitations in a way that does not interfere with their job responsibilities. Sometimes modifications can be made on the job to allow people to work from home when need be, or otherwise have a more flexible schedule. In some facilities, such as where I am currently employed, employers suggest intermittent family medical leave or FMLA when a person's disability may result in more absences than what the facility deems acceptable. This is meant to protect the employee from suspension or termination of employment, however, the FMLA documents must be updated by a physician quarterly. This can be an inconvenience and frustration at times, especially since chronic conditions related to spina bifida are just that...CHRONIC...and never go away, yet we must continue to "justify" that the disability exists. It is important to note that people with disabilities tend to be the most loyal employees who take their jobs seriously and do the best they can. Excessive absences are most likely due directly to the disability and not due to the employee's lack of interest or responsibility. They will do all they can to work in a professional setting with as much dignity, class, and grace as possible. Of course, there are always going to be one or two out there who defy this theory, but overall, employees with disabilities tend to be the hardest workers and will be loyal to their employer at all times. Many people born with spina bifida are wheelchair users because of more limited mobility. I have been blessed with the ability to ambulate, and have been walking since the normal age that most kids learn to walk. Only difference is that I learned to walk with little crutches. I did wear full length, aluminum leg braces during the early part of my life to assist me with learning how to walk and to help straighten and strengthen my legs and muscles.
Like most teenagers, I learned to drive when I was 16, and passed my driver's test the FIRST time. I did, however, learn to drive with hand controls, which can be purchased and installed on any kind of car with power steering. The hand controls do not replace the foot pedals on my car, which means that an able-bodied person can also drive my car the "normal" way.
Though I didn't date before I turned 18, once I DID start, I seldom had a difficult time finding something to do on a Friday or Saturday night. In my younger years, dating was a pleasure, and not something I generally had problems with. Were there men that DIDN'T want to date me? Sure there were! I'd be kidding you if I didn't tell you that I knew of men who wouldn't ask me out because I had a disability. There will always be men out there looking for a tall, svelte, blonde "bombshell," but that will never be me. Although it used to annoy me, from my "more mature" perspective, I consider it a blessing, because it weeds out the jerks from the nice guys. Why would I want to date a guy who only wanted a hot looking babe on his shoulder, when I could really date someone who liked me for ME, exactly the way I was? As we all eventually come to learn, outward appearances fade, but the personality and heart of a person are usually what stay with us throughout our lives. Truthfully, there were men who wouldn't date me for other reasons. It sometimes was like a double-edged sword. One man once told me years after the fact..."Jennifer, I always thought you were too beautiful for me. What would a woman with your beauty want with a man like me?" "Too beautiful" for some, "too imperfect" for others. Ain't it funny how life works?! As it turned out, I was blessed with a handsome and amazing husband, William, who loves me just the way I am. He is my light and inspiration. We currently reside in the beautiful State of Idaho with our son, Justin.
If you have any questions about spina bifida or disability, in general, the world wide web is full of an enormous amount of information that can help you. If you are looking for more specific or "sensitive" information, please contact me and I'll try to help. If you are a new parent of a child with a disability, and are interested in hearing what other parents of disabled children thought and felt at the time they learned of the diagnosis, please click here to read a wonderful story illustrating the feelings of one parent.
Earlier this year, I was asked to write an article for a local publication called "Sweet Charity." Click here to read it.
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