Let's Be Heard: Great Comebacks Award Winner Mary Penner Speaks Up

I had an interesting experience this week. While I’ve been very open about my ostomy at work in the last 18 months by leading a team of 7 IBM volunteers to reinvent Ostomy Toronto, having my ostomy and volunteer work talked about on a poster that went up all across Canada for the 2011 IBM Employee Charitable Fund campaign as one of their community heroes, and getting to speak to all of my 2nd line manager’s direct reports, this was yet again a little different experience. Last year I displayed with Ostomy Toronto at the ECF breakfast. We didn’t have a lot of visitors and I only explained what an ostomy was a few times. This year, since I’m no longer part of Ostomy Toronto, I nominated the United Ostomy Association of Canada to be part of the breakfast. The displays were a little different and I had many more visitors who needed to get me to stamp their passport to win a prize. I also wore my Ask Me About My Ostomy shirt and was asked many times what an ostomy was and I gave my usual definition and then talked about some of the issues facing persons with an ostomy that we are working on, including the one I’m keenly involved in, public awareness, and the one that will affect my retirement, ostomy supply reimbursement inequity across Canada, particularly Ontario where I reside. People were really interested in hearing about everything and my comments regarding visitor training, negative stigmas, and the reimbursement issue really seemed to get them, as did talking about another favourite subject, our youth camp. I also talked about the Great Comebacks awards and some of the recipients - including that I was the winner for Ontario region and the national recipient for Canada. Everything was as I expected until a woman around my age, obviously dressed for appearing n front of clients, approached the booth and said colostomy, ileostomy, urostomy, I know about ostomies, I have one. She said her only issue was working out, she worried about her bag. I explained that there were belts available and she thought I meant the regular ostomy belts, but I said no, a stealth belt or other belts and that I also knew a woman who was a competitive fitness model and part of a group called Girls With Guts. I didn’t have a chance to tell her I was an IBMer. I flipped through the Ostomy Canada magazine to see if I could find an example of a belt she could use and I mentioned Facebook and that I could introduce her to Charis Kirk. Suddenly she said it was too personal and turned and walked away. I wish I had her name or had a chance to give her mine. She was going to google stealth belt but I felt I missed a real opportunity as the more we talked, the more I realized she wasn’t as confident as she first appeared.

Both my experience in meeting many IBMers who knew nothing about ostomies and in meeting this woman who had one but wasn’t very open about it, are examples of the reason I do what I do. We need to be able to be open about our ostomies without fear of negative reactions or it affecting the things we love to do. Having an ostomy is a very personal thing, the woman I met is right, but it is also something that if we don’t get the word out about the positive outcomes of ostomy surgery, people facing ostomy surgery may never have heard of one or if they have, only in a negative manner. Each time one of us puts our story out there, no matter how personal, we are helping people who may face ostomy surgery in the future, or those who are still having difficulty with having an ostomy. This is why the world ostomy day theme of “Let’s Be Heard” is so important, not just for one day every 3 years, but every day.

No matter what your comfort level sharing about your ostomy, you can help others. You can be involved online and/or in your local support group. I encourage everyone to do both, as they are not mutually exclusive. When you’re alone and scared in hospital, as I was, with no computer access, your online support fails. Online is a great way to start if you want to be anonymous. As you get more confident, I encourage you to get involved in your local support group, speak to family and friends about your experience in a positive manner and yes, maybe one day to coworker or complete strangers. Whatever your comfort level, you can find a way to ease the transition for future ostomates, promote positive awareness of ostomies, and demonstrate that you can live life to the fullest after ostomy surgery.

Mary Penner **Mary Penner is a Director of the United Ostomy Association of Canada and Past President of Ostomy Toronto. She maintains her own blog at muggins7.wordpress.com. Mary is the Renaissance Great Comebacks Award winner for Ontario region as well as the national recipient for 2012. The opinions expressed in this blog post are those of the author and do not represent those of IBM or the United Ostomy Association of Canada and its member chapters.**