Turning Fear Into Confidence
By Rachel Fisher,
My name is Rachel Fisher, I’m 23 years old and I was born with classic bladder exstrophy. My life began in New Bern, North Carolina in 1992. My medical experience started with an immediate closure, reclosure and bladder neck reconstruction. Unfortunately, at age four I developed blockages in my ureters. My doctor in North Carolina wanted to plug my ureters into my bowels because the blockages were damaging my kidneys, making a solution necessary and urgent. My parents weren’t convinced it was the best solution and starting researching doctors all over the U.S. and it led them to Dr. Gearhart at John’s Hopkins. I became a patient at Hopkins at age four when I underwent a major surgery that created a neobladder utilizing my intestines and a mitrofanoff utilizing my appendix. My stoma is located where my belly button should be and I was told to catherize every 4 hours. I then became the youngest patient of Gearhart’s at the time to cathertize myself in October 1996. This was my biggest surgery; I was in Baltimore for 6 weeks total and 4 weeks in the hospital recovering. I remember spending Halloween there, how hard it was to learn how to walk again after lying in bed for
weeks and staying at the Children’s House with other kids. After the major surgery I had two more within 9 months and my dad was frustrated with not being able to help me. I can’t imagine my parent’s experience. Honestly, everything I just said about my early years of life affected my parents much more than it did me. I have only a couple of memories of being in the hospital and never any of being in pain. Since then I have been healthy and happy, only having two minor surgeries, one in middle school and one in high school.
Outside of the times I spent in the hospital, I lived a completely typical childhood. When I wanted to do something, I never thought that I couldn’t because of bladder exstrophy. It might have been a concern for my parents but I was never aware. I never felt like I was treated differently than my siblings or my friends. I participated in a variety of activities such as gymnastics, dance and t-ball but committed to soccer and played my whole life on competitive travel teams.
Although I didn’t consider bladder exstrophy a huge issue in my daily life as a child, I still enjoyed bladder exstrophy picnics every summer in Baltimore was something I always looked forward to attending. When I was around 6 years old, I asked my mom “Why didn’t my brothers and sisters have bladder exstrophy too?”. She responded by trying to explain how rare the condition was. I immediately came back with “No you’re wrong! Didn’t you see all of those kids at the picnic?”. From the age of 6 I never felt alone.
I made friends there I still speak to on a regular basis. I even showed my friend Caelin at a picnic how I cathed when I was 8 and she was 7 years old. She was currently incontinent and my parents and I shared my success with a catherizable stoma and then Caelin had the surgery that year. Our parents were close and we all still keep in touch. I wouldn’t have the friendships I do with other bladder exstrophy patients
today if my parents didn’t make the effort to connect with other families experiencing the same thing. At the picnics every year, we break out into small groups and talk about issues we are dealing with. Most of the talks consisted on the topics of body image issues and romantic relationships. Opening up about our bladder exstrophy specific struggles was therapeutic for all of us. It was the only place in the world where everyone around me identified with me and understood why I felt uncomfortable in certain situations. One of my friends told us when people asked about her scars she just told them they were results from a shark attack.
During my teenage years I was angry with my parents for being grounded a lot, but I also became angry that I had bladder exstrophy, something I didn’t think about as a child. One of the hardest parts of growing up with bladder exstrophy for me was wearing a bathing suit in front of my friends. I always hated the moment I had to take my cover up off because my friends would see my scars. It was the only time where everybody around me knew I was
different. I wanted so badly to feel the same as everyone else. I didn’t think it was fair that I was born with bladder exstrophy and my friends were born typical. I wish I knew then that every teenage girl has self-esteem issues when it comes to wearing a bathing suit in front of her peers. It is a completely normal part of development. However, I still am not completely confident in a bathing suit but have made a lot of progress since my teenage years. Last summer was the first time I wore a bikini around all my friends. I wish I would have been braver and realized that the anxiety about people seeing my scars is so much worse than what actually happens. Most people notice it for a minute and move on and a few ask questions. Nobody is rude, and the more I talk to people about it, the more self-confident I have become.
Another issue that comes up for me frequently is the problem of forgetting my catheter. Every time I forget it, or lost it, I become very angry because I have to go home or get a ride to my car where an extra was located. I think the anger comes from being mad at myself for forgetting it but mostly because it a reality check that I am different. Nobody else has to worry about if they have medical equipment to pee. They can literally be anywhere and can pull down their pants to relieve themselves. I wish I had that freedom. I wish I didn’t feel so helpless when I left my catheter somewhere and couldn’t use the bathroom until I located one. Looking back on it, I could have avoided many of those situations by placing extra catheters everywhere. Storing multiple catheters in my purse, car, and friends’ houses is very necessary and something I’m still learning.
Telling people about bladder exstrophy has been difficult but I am getting better at it. I have known most of my friends since early childhood or middle school. I told most of them when I was so young it was before the embarrassment of being different set in. When I tell
people now, I usually tell a shortened version and I am not ashamed anymore, if anything I am proud. I fill them in on how my bladder was exposed when I was born and random surgery stories but I typically leave out how I use a catheter. The last new friend I told was in amazement, in a good way. We were at a party and she wanted to go to the bathroom together, like girls do, and I thought to myself “Whatever I’ll just tell her, I have to pee and don’t feel like making something up to avoid using the same bathroom as her”. She thought it was so cool that I could pee through my “belly button” and was so honored I told her. She knew that I trusted her because I told her and our friendship became stronger after that night. I was reminded once again, the anticipation of sharing information or showing my scars to people is so much worse than what actually happens.
I was very lucky to have grown up in a small town with so much support from my parent’s friends and my friends. I felt safe knowing most people that knew me growing up knew about my condition. My best friend since we were babies was always concerned about how often I needed to use the bathroom or if I had a catheter or not. For example, we were involved in a car accident
when we were 16 and rode in an ambulance together to the hospital. We had both been knocked unconscious and were delirious during the ride. The EMT’s were asking us questions like “Are you allergic to any medicines?” and “Do you have any pre-existing medical conditions?”. I answered “No” to both questions. My best friend, on the stretcher beside me, says very loudly “yes she does! Rachel, tell them about your bladder!”. This is a perfect example of why you should let your friends know so they can help you.
My dad passed away my senior year of high school. I have a very specific memory of him that embodies how much he built my self-confidence. We took a family trip to beach when I was young, maybe middle school, and I wore a regular bikini, so my scars were all showing. I remember my dad telling me “That’s my girl” and “I’m so proud of you” with a huge grin on his face. I will never forget that feeling of making him proud for not being ashamed and wearing whatever I wanted. I still think of that every time I feel insecure about anybody seeing my scars. I was raised a brave, confident girl and will continue to be one.
I strongly believe the best two things my parents did for me was constantly increase my self-esteem and connect me with the bladder exstrophy community. I cannot say enough how confidence building and support from my family, bladder exstrophy friends and friends from home, has helped me cope with every new difficult situation along the way.
I have developed a passion over my lifetime for traveling and helping others. I have had two jobs working with individuals with special needs. I lived and volunteered in Peru for two months and participated in sometimes-dangerous experiences, such as the rock-climbing and paragliding. I have found helping
others and living life to the fullest is something I have in common with the other BE young adults that I’ve met over the years. I think each person I’ve met with bladder exstrophy is uniquely empathetic because of our experiences and are overall incredible people. I would love to be able to work with children with medical conditions and continue to contribute to the bladder exstrophy community. I gave a speech at the Association for the Bladder Exstrophy Community International Exstrophy Conference in Seattle, WA in August 2015. It was an amazing experience to be able to tell my story and feel as if it gave some of the parents hope about their children. I received my bachelors of psychology and am currently a foster parent for a non-profit organization, Casa de Esperanza de los Niños, in Houston, Texas. I have cared for seven children so far and fell in love with all of them. I have recently been accepted to the masters program for social work at the University of North Carolina and will be start to pursue my degree in August!
© 2016 Rachel Fisher & Courage to Shine™
E-mail Rachel at email@example.com
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ABC Medical Interview in Houston, TX posted April 23, 2016
4 Comments Add yours
Thanks a lot Rachel for posting your experiences and how you went through thick and thin of ur life. Its encouraging story for me as I am also suffering from this disorder and I am in my teenage years also.
Thanks rachel for sharing your experiences and its inspiring for me as I am also a patient of bladder extrophy and in my teenage years also
Congrats for your text. Fantastic. Your write helped me to remember my life. Success !
I have exstrophy and no one to
Help me as an adult. I have a monti cath doesn’t work and leak so bad 20 pull-ups a day help pls