Let’s break free from the shame. I want to hold my head up high and say…."
"Let me tell you something you already know. The world ain't all sunshine and rainbows. It is a very mean and nasty place and it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain't how hard you hit; it's about how hard you can get hit, and keep moving forward. How much you can take, and keep moving forward. That's how winning is done. Now, if you know what you're worth, then go out and get what you're worth. But you gotta be willing to take the hit, and not pointing fingers saying you ain't where you are because of him, or her, or anybody. Cowards do that and that ain't you. You're better than that!"
– Movie Quote from 'Rocky Balboa'
When I was first diagnosed with neurogenic bladder and bowel, I wanted to dig a hole and hide forever. I thought I was saddled with the most ostracizing affliction. While, to this day. I don't tip my hat to anyone who will listen, I feel good in my skin. I have a pen name because I work at a high school and I don't want to give others the wrong idea about my openness to share my health issues. With my writing, other emotions are flooding in. I am feeling less isolation and stigma. Because of all of you I am feeling accepted. A new world has opened up and you are all a part of it. Thank you for joining me on this journey of life.
My life is really easy when I work because everything is on a schedule. I get into trouble when I go out with girlfriends shopping or for really long walks. Recently I had an issue when I went to the Pumpkin patch with my family. Luckily I wore a long coat and we were close to home. The next day I was glad I went. My family had no idea and they never will. This issue of a bladder and bowel that misbehaves is private and needs to be quiet. I doubt I would be invited out if I made a scene. How many people out there with this affliction stay home and do not try to have a full life? My motto is to get out there and live life, we have but one, so we need to make the best of it.
Sometimes I feel like I am fighting, especially when I have trouble finding a restroom NOW! I even have a meeting with my administrator, next week, to plead my case aginst locked restrooms that have the prized sink. At times I have walked out of a larger handicapped rest room and gotten a not so nice look from a wheel chair sitter, waiting to use a larger public rest room. I say nothing, but in my heart I say, "It's all about the sink dear, handicap stall users come in all shapes and sizes.
The social stigma concerning toileting starts so young. No matter we have such a problem at times fitting in. When little kids wet the bed only family knows and the rest is kept hush hush, but why? Perhaps it would be comforting for the kid and family to know that many kids wet the bed for quite a while. Why all of the shame? Why do we as a culture have such a stigma associated with this? Is there a culture out there more open than ours?
I also want to point out that it breaks my heart to read about the isolation sufferers go through, because they want to be socially appropritiate and keep silent about their pain. We really need each other. The exchange of ideas is so great. LET'S JUST HOLD IT UP AND FIGHT! We have a good life to live.
I invite you to share your stories on getting out and strategies here. Trudy@writeme.com