Alice Ambrose’s First 20 Years With Bladder Exstrophy

Alice Ambrose is a role model and peer supporter for the ABC community nationwide.

Editor’s Note: Bladder exstrophy is a rare congenital birth defect that causes part of the bladder to be present outside of the body. Treatment includes surgical correction, but often leaves the patient with long term urological issues.

Alice Ambrose was born with bladder exstrophy and was left with an ostomy. She hid this from her peers for 20 years, but eventually told everyone after reconstructive surgery and an extended hospital stay. Alice has learned to be brave and honest when it comes to her condition and sets a great example about living a positive life. Part 1 of a 5 part series.

I was born in Seattle, Washington with bladder exstrophy. I grew up in Bellevue, a suburb of Seattle and had a very happy childhood. My mom and dad were loving, supportive and made sure I lived a normal life. I participated in the same activities as other kids and never felt singled out.

Since I’d never known life without bladder exstrophy, I didn’t feel different, despite the fact that I had worn an ostomy since I was 2. When I started going to sleepovers and pool parties in elementary school, I realized that my friends didn’t have an ostomy like I did.

At the time, I wasn’t old enough to change my ostomy bag, but as I got older, I learned to take care of it myself so I could enjoy more extracurricular activities without worrying. My mother helped me find pajamas that hid my ostomy and sewed me a swimsuit with panels so that I could swim and enjoy pool parties.

Alice hid her condition from her peers for 20 years.

I had to deal with several issues during school like a leaky bag or not participating in gym class because I was embarrassed to shower in front of my peers. None of my friends or the other students I went to school with knew about my condition. I never wanted my ostomy to slow me down or prevent me from doing what my friends were doing.

However, when I was 20, I underwent reconstructive surgery. I hadn’t had surgery since I was 4. Once I finally told my friends about my condition, I had a difficult time because I’d never had to face the fact that I was different. I still struggle with this realization.Explaining bladder exstrophy is a challenge, but I was ecstatic when my friends offered support and didn’t treat me any differently.

I did have an issue with a past boyfriend who didn’t know about my condition. When I told him, and mentioned that bladder exstrophy may prohibit me from having children, it changed our relationship. I realized that he wasn’t worth it because it’s important to be with someone who will accept me for who I am. 

My dad always shares inspirational quotes and thoughts with me. One of my favorites is, “Successful people search for challenging opportunities to change, grow, innovate and improve.” (author unknown).

Another is “Attitude: The longer I live, the more I realize the impact of attitude on life. Attitude is more important than facts, than the past, than education, than money, than circumstances, than failures, than successes or than what other people think or say or do. Attitude is more important than appearance, giftedness or skills and will make or break a company. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our pasts, the fact that people will act in a certain way or the inevitable The only thing we can do is play on the one string we have, and that is our attitude.  Life is 10% what happens to you, and 90% how you react to it. We are in charge of our attitudes.”

Editor’s Note: Because Alice understands the challenges that children face with their peers when they have bladder exstrophy, Alice remains involved in a national association called the Association for the Bladder Exstrophy Community. As part of this organization, Alice helps offer summer camps for the families and children who belong to ABC.  Here’s a video from one of last year’s summer camps:

Next: Alice Ambrose Says Life Is All About Being Grateful For What You Have

About the Author: For the last 12 years, John E. Phillips of Vestavia, Alabama, has been a professional blogger for major companies, corporations and tourism associations throughout the nation. During his 24 years as Outdoor Editor for “The Birmingham Post-Herald” newspaper, he published more than 7,000 newspaper columns and sold more than 100,000 of his photos to newspapers, magazines and internet sites. He also hosted a radio show that was syndicated at 27 radio stations; created, wrote and sold a syndicated newspaper column that ran in 38 newspapers for more than a decade; and wrote and sold more than 30 books. Learn more at http://www.nighthawkpublications.com

Dr. Scott Rains Realizes He Can Be A Ski Instructor Even Though He Can’t Walk

Editor’s Note: The real key to success is taking your disability and turning it into an advantage- it’s about what you can do, not what you cannot do. In the story of Dr. Scott Rains, a consultant on travel and disability, you’ll see that his wheelchair has become his marketing tool. Dr. Rains, “New Mobility” magazine’s Person of the Year, is known worldwide for opening up many countries, businesses and vacation sites to physically challenged individuals and has enabled these places to become more inclusive. Part 3 of a 5 part series.

Scott Rains has always been passionate about travel.

I grew up in Seattle, Washington and spent a lot of time in the mountains hiking, camping and skiing before my injury. When I was 13, I had the opportunity to work at a ranch in Wyoming for two summers, and I enjoyed that a lot. Then my Spanish teacher invited me to join in an exchange student program in Guatemala, because I was doing well in Spanish. I had such a wonderful experience that I went after a scholarship to go to Brazil in 1971, but at the end of that school year, I was paralyzed.

Although I was only 17 when I became paralyzed. I was a teenager who already had traveled a good portion of the world, and then I found myself stuck in a wheelchair. I realized I wouldn’t fulfill my dream of being a ranch hand after I graduated from high school. The Sunday before I went into the hospital for my operation, I was approved as a ski instructor but didn’t learn about that approval until 2 weeks after my operation. I thought then, “Oh, this is great. I can be a ski instructor, but I can’t walk.” When I read the sentence on the letter that said, “By the way, I own a ski school, and I want you to be one of my instructors,” I started laughing hard. I began to think about what I really wanted to do with my life, and what I could do. I had 50% of my body that I couldn’t use, which meant that 50% of the things I wanted to do, I couldn’t do. Next I listed all the things that I could do, and the longer my list got, the more I realized that there were an infinite number of things I could do.

Scott Rains thinks about what he can do, not what he can't do.

I decided, “Ok, even though I’m in a wheelchair, I’m going to live the rest of my life doing the things I can do. Perhaps I‘ll have to do them a little differently, however, I’m not going to worry about the things I can’t do.” I knew I couldn’t be a ski instructor, but I found out I could ride a zipline between one state and another state in Brazil. Since that time, I’ve been on all types of adventures in many other countries and really have enjoyed life.

I decided after my injury that for 10 years I wouldn’t leave this country. I got an undergraduate degree in linguistics. The languages I could speak were Spanish and Portuguese, but I also studied German, Italian and Tamil.

Scott Rains is fluent in several languages. This must make it easy for him to make friends in other countries!

After I got my undergraduate degree, I started a graduate program in linguistics, and I found that there really wasn’t a job that I was likely to get as a linguist. With that much study in language, I could have been a translator for the CIA, but they didn’t have much need for a translator, and traveling for me was difficult. That’s when I decided that I wanted to prove at least to myself that I still could travel. Once I learned there wasn’t a job I wanted to do in linguistics, I decided to stay in this country and work for non-profit organizations. I started my career in New York working for an organization called L’Arche, that helped disabled adults and people with Down Syndrome to live in group homes. I was running a household, cooking, cleaning and helping people get to their jobs. I also did some accounting.

Scott Rains wants an accessible world, where anyone can achieve great things.

I decided to go back to college and went to Santa Clara University for 6 years where I was a campus minister. I was invited to become the director of university ministries at Benedictine University outside of Chicago. Then I worked for a company called SeniorNet that set up free computer centers for senior adults. Most of my work was with technology and working with technology companies. However, while working for all of these different companies, I also started working in the field of travel and instability. Sometimes I’d work full time consulting on this issue, and at other times, I would only work part time. For the last 18 months, I’ve been working for Benetech, a non-profit company that creates accessible books for the people with print disabilities for a project called Bookshare. For the last 10 years, I’ve been working on travel and disability projects.

To learn more about Dr. Scott Rains, visit his blog.

Next: Dr. Scott Rains’ Success In Helping Others  

About the Author: For the last 12 years, John E. Phillips of Vestavia, Alabama, has been a professional blogger for major companies, corporations and tourism associations throughout the nation. During his 24 years as Outdoor Editor for “The Birmingham Post-Herald” newspaper, he published more than 7,000 newspaper columns and sold more than 100,000 of his photos to newspapers, magazines and internet sites. He also hosted a radio show that was syndicated at 27 radio stations; created, wrote and sold a syndicated newspaper column that ran in 38 newspapers for more than a decade; and wrote and sold more than 30 books. Learn more at http://www.nighthawkpublications.com