My Sister and I (Aug. 2014)
Not long ago, I took a friend of mine out to lunch. She had just lost her husband to Lou Gehrig's disease. It was the first time we had a chance to talk since the funeral.
As we chit-chatted, as girlfriends do, she asked me what I was up to. Up until recently, I have not told others about my bladder and bowel dysfunction, nor about this blog. This blog has been written to and for YOU, my kindred spirits, my fellow new friends that also deal daily with bladder and bowel dysfunction.
But . . .
Because I have a book in my future, that is due to come out this next year and I plan to sign my real name to it, I have decided that I need to "come clean" with all of my friends about this blog, as well as all of you, before the book actually publishes. So, I told my neurogenic bowel and bladder story to her for the first time.
She then shared with me how difficult it was for her husband when he lost control of his bowels. As his illness progressed, they became more and more house-bound. He was frantic to keep his new problems secret. With tears in our eyes, we shared the truth of our struggles.
There are products to flush out bowels . . . I told her too late. She and her husband were too embarrassed to ask anyone. But, of course they were . . . aren't we all? And look where it got her. . . isolated with their pain and suffering.
What is with all of the secrecy? Why are we so afraid to talk about this?
I will now share something with you with which I am quite ashamed: Just prior to my diagnosis with a flacid bladder, my sister was fighting her own battle with breast cancer. In my head, I understand that people die of cancer; that it is very serious. But at that moment I wanted to have someone to talk to about my issues. She was free to talk about hers, but I felt as though I was being suffocated with my self-imposed isolation. I remember feeling quite sorry for myself, a devastating diagnosis that I couldn't share with others. As sisters often do, I had a feeling, a short twang, if you will, of pure jealously. "If I had breast cancer I could tell others. Just who can I tell about this?", I thought, with my self-pitying, unbecoming attitude.
Yes, I was grieving . . . I know you understand.
Then it occurred to me . . .
When I was young, women with breast cancer had the same shame — of isolation and silence. Tata's were not even on the map; just as bladder and bowel are still taboo today.
We have the power to change things up. "Shed the shame and live life better," I say.
You might consider telling a friend about your health situation. Imagine if people talked about this!There are no jokes about breast cancer. Perhaps, if people heard our stories, we could make Bladder and Bowel sufferers better understood. Knowledge is power. We need to feel free to ask for help and not feel ashamed of the ailment we have just because those body parts happen to be our bladder and bowel.
More later . . . .