Sunday, November 4, 2007
From the Grown-ups with Exstrophy
I've asked all ages of people to contribute to the blog and I've been hearing from many adults about their experiences growing up. They have offered their stories, their advice and their hope freely to me and to my son. This is where you can find their posts! Feel free to add your own...
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I remember it distinctly. I was walking down the lane on our farm. The afternoon sun was shining and it was a warm spring day. I felt good. Maybe it was because I had a new set of shirt and trousers on. I said to myself, “I am nine years old. I am nine…years…old.” I felt wonderful. Everything was alright in my world.
Those feelings came once in awhile, but I didn’t always have that confidence. I was born with bladder exstrophy and I had surgeries, medications, occasional illness, and also some despondent feelings that came with not knowing what to expect at times, or how to deal with an urgent situation in the company of other classmates—something you don’t really want others to know about. I felt it’s too private, personal, and maybe upsetting to share with others. I’m talking about the need to go to the restroom and how you must execute that personal duty without letting on there is something different.
I had a ureterosigmoidostomy at the age of three, which is not a usual procedure anymore in the U.S.A. It means I have to sit on the toilet when I use the restroom. I can’t use a urinal. When I was in school I needed to use the restroom between almost every class to avoid leaking. At first I used the same stall, until other junior high classmates noticed the same pair of shoes in the same stall every time. When they started commenting about it, I changed my way of doing things; I ran up to the senior high restroom on the upper floor. Often it was frustrating to have to resort to the hurried way I had to deal with a personal issue, but it helped lessen the stress of expecting unwanted comments or teasing.
Other students did not know what I had to deal with in school. Still, I guess I acted like a victim and that invited trouble. There were a few bullies in class that made things difficult, but I had friends who stayed by me, without knowing anything about me, other than what I shared with them, and that was very little.
I worried about gym class. I did not want the other kids to see scars and anything unusual about me that would be seen. I was able to have a doctor’s excuse since I was not able to do anything strenuous. A fellow classmate was excused for religious reasons. He thought I had had the same kind of excuse. He came from a very conservative family so it was allowed for him. We were friends throughout high school but I never shared personal information other than a reason for having to do things differently—like needing to use the restroom more often, for example.
In gym class the teacher had me do light exercises in my regular school clothes. If I needed a shower, I was allowed to use a private shower. This was back in the late 50s and early 60s. Procedures may be different now in the way teachers handle things.
One thing I regret about school—I quit in the 11th grade, much to the chagrin of my teachers. I was a fairly good student. Quitting was a big mistake on my part. Looking back, I feel that I would feel a lot better if I had graduated with my class. I received a General Education Diploma five years later.
After I left school I had some pretty good jobs which gave me a satisfactory income—in the agricultural field. It was rather grueling work at times, in a chicken processing plant, and later in a beef slaughter house. When someone suggested I could become a U.S.D.A. inspector, I took the Civil Service test and got a 99.7% score. I became a poultry inspector for one year until I decided it was not something I would like to do for the rest of my life. The next step was getting a job for a printing company and I stayed with it for almost 25 years.
Meanwhile, I acquired some personal skills that brought its own rewards to help with self-confidence. Some would engage in sports, which is an admirable endeavor, but I played the piano and took lessons on the accordion, entered accordion competitions, brought home trophies, and generally had a following of fans when our church group put on public concerts twice a year. There I played the accordion, in addition to singing in the 60-voice choir.
Even throughout those experiences, I occasionally would resort to my despondent feelings. It helped when I saw minor flaws in the people I associated with, just to help me feel better about myself; not to be critical. Maybe it was an unusual way to handling my self-esteem but it helped me acquire some self-respect.
I was 46 years old when I finally met another person who had the same medical history. That is too long a time to live alone with a problem you feel so abandoned. When I started associating with others in a support group, I saw how others handled their personal lives. Maybe some didn’t handle it too well, but you wouldn’t know it by looking at them. Others acquired the talent to act normal, be normal with extraordinary steps to take to appear that way, and to not go on the defensive in the face of unusual circumstances as they appear to others. It helps when the parents take on the attitude of their child being normal, and not to think of them as invalids, patients, or less than normal. Such an attitude can easily transfer to their child.
It’s a gift to be able to allow yourself to be just like everyone else and not be upset by the extra steps you take to appear normal. To acquire it, just take the upper hand in your emotions. Don’t let on your secret feelings to the public at large. (Although, I recently learned of a stand-up comedian in England who talks about his personal issues in comedy. He was born with bladder exstrophy.)
Take charge of your life and let others see that you have everything in control. If you need to confide in your parents, or trusted friends, talk it out with them. Occasional talking helps to release the pent up emotions.
Even as an adult I had some personal issues I wanted to air out to someone. I finally had a few sessions with a mental health counselor who finally told me that I was not mentally ill; I don’t need the counsel, but I could have more sessions if I felt the need. I told him everything that was secretly bothering me, and he helped put things in perspective, and understood the need for me to present it to an understanding person. I haven’t had a session for over a year now.
The question of the future can be very strong in the minds of a person born with exstrophy, especially in their teen years when they see their friends going separate ways for one reason or another. That is the time to talk it out with someone who knows what’s probably going on in your mind. I’ve met a few people who got married, had children, and had a relatively normal life under extraordinary circumstances.
I got married at the age of 50. I told Lucy that I should have met her 30 years before. Who knows whether we would have a family by now if I had the courage to take that step at that time. Since I attended a number of support group meetings, I had the confidence to take the steps I finally took. In spite of some struggles now and then I don’t regret it.
Believe in what you perceive to be impossible and the impossible can happen. Don’t think of failure even when failure comes. The confidence you acquire is from the successes you make for yourself.
I was born with bladder exstrophy in the 1970. Although, I am 37 now, I just wanted to let you know how wonderful it is that your are showing your son that he is not alone with this birth defect , and having others help in the process. It put a smile on my face when I got your letter in the mail today. Bladder exstrophy is such a rare birth defect, I have been doing some research over the internet to try and comprehend how this happens in the womb. Does your son still have his bladder? I was born with it on my belly, but it didn't work. So when I was 9 yrs old, I had to have a urostomy. The only thing I can think of as in any advice to your son is, don't let kids tease or put you down. You are special and god made us this way to show other people that we are strong. My mom and dad had no clue as to how to raise a exstrophy child. I have 1 sister who is younger than me, she is healthy. I grew up thinking "why me?" and boy "this sucks". But as I got older, I learned to realize that there is more to life than feeling sorry for my self and live my life the best way I can. So in closing, I wish the best for you and your son. My heart goes out to the both of you, sincerely.
I am a 65 year old female who was born with bladder classical exstrophy July 24, 1942 in Michigan. I was born in the "dark ages" (ha) at a time when treatment for bladder exstrophy was often ureterosigmoidostomies (ureters transplanted into the sigmoid colon so the urinary system and intestinal systems are mixed).
I have lived with this diversion all my life. Treatment for bladder exstrophy was MUCH different then that is the usual in "today's" world.
I finished high school, became a Licensed Practical Nurse, and later completed a year of secretarial training and did Medical Records in various hospitals. I also married in 1969 (we have now been married 38 years).
That is the "brief" version. I could, in reality, write MANY pages of the experiences of my life.
One piece of advice I might offer is to emphasize the "positive" as much as it is possible. It's important to emphasize to a child what he is able to do.
I'll give you an example of what I mean. When I was a child I once overheard my mother say "there is nothing worse then bladder exstrophy". In the first place, it is not true, but in the second place even if it was true, she didn't need to make such a statement in my hearing. Children DO remember such statements made,---even from a very young age.
Far better to emphasize the positive, such as "you have normal legs and normal arms" (if true). You can see normally and hear normally (if true). Also "you are not paralyzed or in a wheelchair" (if true). Always make such statements cheerfully (not as if you are scolding your child if you think they have a bad attitude). Encourage a child to be active doing as many things as possible as he/she CAN safely do.
It is of the most extreme importance that a child with exstrophy have a healthy sense of self esteem. (I know because as a child I was criticized a great deal). I'm not saying a child shouldn't be disciplined!!!!, but when a child DOES do something right--thank them/him, or say "good job" with a pat on the back--whatever.
OK I am no psychologist !!! I am offering my input only as an adult exstrophy patient. Emphasize the positive.
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