2012 in review

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 2,400 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 4 years to get that many views.

Click here to see the complete report.

Posted in Uncategorized | Leave a comment

The Bullying Must STOP!!!!!!!!!!!!!!!!!

Every time I hear of another bullying incident leading to a suicide, it brings back a lot of painful memories. I was bullied and had stories told about me that followed me right from elementary school through to high school. So were many of my friends, sometimes just for being associated with me, and worst of all, my brother, who was forced to change schools twice due to bullies. All I can think of when I hear these stories is but by the Grace of God go myself and my brother. This could have been either of us. Our bullies couldn’t do much when we left the school grounds (some did – more later). Today’s kids cannot escape simply by going home or even, like my brother did, switching schools. It is only through the help my parents got for my brother and my mom’s ability to put the fear of God into any principal or school board trustee, that it probably wasn’t one of us. I have no idea what we would have done in the age of Facebook and text messages, as I had stories about me follow me for I’d say 12 years, damaging stories, lies, passed from classmate to classmate even as we moved from one school to another. It made my life miserable right from Junior Kindergarten to Grade 13. It made me who I am today, both the good and the bad. It was the reason behind a major blowout I had with my mother over my refusal to apply to universities in Ottawa – a blowout so big my mom called and got my guidance counselor involved who convinced me to apply to one school to humour my mother.

I’m sure people wonder why I am such an advocate for youth with an ostomy and for the UOAC Youth Camp. It comes out of my own childhood experience. Some of my Facebook friends who I haven’t been in touch with from elementary school until recently may wonder if my ostomy is the reason for some of what went on in school. I am here to say it’s not- I only developed ulcerative colitis and had ostomy surgery 8 years ago. Kids are cruel, kids are crueler when someone is different due to health issues or birth defects. And it doesn’t stop with the kids, I had kids call my mom a hunchback – my mom whose spine was shaped like an S and fought tooth and nail to come back from the worst form of polio at age 14 and who had been told she would never walk again. They didn’t see that part of my mom, they just knew her back was deformed and she was different. Then there was me, this is my reason why the youth in our ostomy association inspire me. I was made fun of because of a birth defect – I had an enlarged bladder with pockets in it that would empty suddenly and without my ability to control it. The reason for these accidents was not discovered until I was 9 years old, and then only because the Kidney Foundation came in and gave urine tests to everyone in the school – it’s why my mom gave money to the Kidney Foundation for the rest of her life. By then the damage was done though. I was shy, withdrawn and very quiet when I started school – these accidents and the kids who tormented me over them made me even more so. I also had issues with my ankles that would cause me a great deal of pain when I ran or took gym – I hated gym, both for the pain and because it was just somewhere else kids could make fun of me. My parents talked to my doctor and I was excused from gym class. Unfortunately, this made the teasing even worse, compounded by the fact that someone I considered my best friend, was told of my test results for my bladder issue, and used that information against me later. The rumours went all over school that if I ran I peed my pants and that’s why I didn’t take gym. The kids were so cruel to me, that one of my mom’s friends confided in her that her son, who had major deformities in his feet since birth, and shouldn’t be in gym class, refused to not take gym because he saw how cruel the kids were to me. My issue was resolved with medication for many years until I outgrew the issue, but even though it didn’t happen anymore, that rumour followed my right into both my middle school (where someone asked me in grade 7 art class if it was true, causing me to scream at my former best friend who was the source of the original information, ending with both of us in the principal’s office) and high school and was spread to the kids who hadn’t gone to elementary school with me. So I’d get bullied and treated badly by a whole new group of kids. In high school it expanded to all the girls I was friends with – the boys at another table in the cafeteria, many of whom didn’t know me until grade 9, would throw food at us. I am forever thankful for Mrs Morgan opening up her classroom and allowing us to use it at lunch every day for the rest of high school.

My brother was younger than me, and I’m not sure why he started being bullied, but I can tell you kids are cruel and many of the bullies not only got away with it, but it was us that had to leave activities we loved instead of them being kicked out. My brother and I went to Day School Gospel League, an after school program. You would think a Christian childrens’ group would not put up with bullying, but they did. One of my brother’s worst bullies in that school was in the group with us, along with his brother who was in my class and who I blamed for an accident that broke my front teeth. He made both of our lives miserable and instead of the bullies being asked to leave the group, my mom was forced to take us out of a group we loved. The bullies won, they got to stay. While today’s kids cannot escape their bullies very easily, not being in school didn’t stop some of the kids who bullied us. One bully, started with my brother than moved onto me and by association, my friends, in grade 9. The only thing he had in common with us was he shared a first name with my brother. He was a year older than me, so he was in grade 8, I was in grade 7 and my brother in grade 5. No idea why he wanted to pick on a grade 5 kid, but he did. So much so, that another boy in grade 8, one I had considered on of my bullies when I was in grade 5, held him down one day at the bus stop while I hit him over the head with my math textbook :). Ironically, the guy who held him down is now married to one of my childhood friends. This boy took the bullying outside of school – he once chased my brother and I on his bike up onto a neighbour’s lawn where we ended up on their front step to avoid being hit by him. He was awful. When I went into grade 9, he had failed a lot of courses. I shared all my classes with two of my best friends, who sat behind me in biology. He sat behind them and tormented them because of their association with me. My parents did everything they could to stop this guy, so did I, ending up in the vice-principal’s office several times complaining, he was NEVER punished! Not once! His parents’ showed up at my house. The father wanted to fight my dad – we then knew where he learned to bully, both his parents were bullies too. If we’d been harassed by Facebook and text messages too, I don’t think we would of survived. My friends and I still bear scars and bad memories of school due to bullies. We survived because two of our moms could put the fear of God in any principal they encountered – we laugh about this part to this day. One kid called my friend a prostitute when we were in grade 7 – she had to go home and ask her mom what it meant. Of course, her mom freaked and called the principal. I think they shook in their boots every time they heard our mothers’ names :).  Parents though can’t do as much about text messages and Facebook – going to the schools isn’t going to stop it. My parents learned that going to the parents doesn’t work either.

My mom hated Halloween because the brother of one of my brother’s ex-friends and his friends would do stuff to our house. They egged it and one winter they threw a big ice chunk at the window. My mom kept a baseball bat behind the door when it got late on Halloween and a light shining out our back window as we backed onto a field. My brother ended up switching schools twice, both times the year after I moved on to another school, as the bullying would get worse. I guess I must have kept some of it in check too :). At least for him, switching schools worked for several years. For me, leaving Ottawa after high school ended it all. In the age of social media though, things are not so simple. Things youth think nothing of doing, can come back again and again to haunt you (not that myself or any of my friends would have flashed someone). Stupid mistakes made as a child or youth can follow you forever. How do we stop this? At the very least, parents need to keep their kids off Facebook until the minimum age of 13 (I see 10 year olds on Facebook) and keep an eye on their accounts – it may not be a popular stance with some kids, but having your parents monitor your Facebook, blog etc. Some of these kids who committed suicide talked about it on Tumblr or other social media sites. It’s not that simple. I know it’s not. That’s why the bullying has to stop.

Over 30 years ago, my mom heard over and over again that the school and school board could do nothing because it didn’t happen on school property (they didn’t act when it was on school property either most of the time). It wasn’t an acceptable answer then, and it sure isn’t now. School boards and schools need to look at this issue and come up with policies on bullying from school that continues via social media. Bullies should be the ones paying, not the kids being bullied. Unfortunately, it’s still the bullied kids and their parents left dealing with the fallout. It’s been 25 years since I graduated high school and that hasn’t changed. It needs to change before another bullied kid commits suicide. A firm stance must be taken on this issue as even if a kid doesn’t commit suicide, bullying leaves scars, deep scars. Scars like those experienced by myself, my brother and my friends some 20-25 years later.

I just told a whole lot of stories I have never told most people. However, it was time. I survived bullying because my parents cared. My mom walked us to and from school for years. She spent hours on the phone with principals and school board trustees. She spent so many hours talking to the one trustee that she considered her a friend. This trustee said something once that summed up how my mom made sure we survived being bullied. She said to my mom one day “Mrs Penner, you’ve taught me something.” My mom asked her what and she replied “You have taught me that you can’t spoil a child with love.” We survived because my mom loved us and was tough as nails due to her own experience and wouldn’t put up with anyone bullying her kids. She had a voice and she used it, they couldn’t shut her up. She won a great deal of battles, but she also lost a great deal – we were still bullied, the bullies were never ONCE suspended or expelled from school or severely punished.

Everyone needs to take a firm stance on bullying. The bullied kids should not be the ones forced to leave or change schools and no bullying situation should get to the point where the child feels the only way out is to take their own life. This needs to stop now!

Posted in Current Events | Tagged , , , | 5 Comments

A life cut far too short….losing one of our own

Nearly a year ago now, I wrote about youth being the future of our ostomy associations and I visited our ostomy camp in Alberta.  The youth I’ve met through our ostomy camp are amazing and while I used Kaitlyn as my example as she’d spoken at Ostomy Toronto’s event in June of last year, I was talking about all our UOAC campers.  Each of them are amazing kids who have overcome tremendous challenges at a young age. One of them was Alison Atkins, a beautiful 16 year old girl, who inspired by Jessica Grossman’s Uncover Ostomy campaign, did her own photo shoot showing off her ostomy at age 14.  Those pictures were my first contact with Alison, but I had the honour of meeting her and getting to know her family over the 14 months I was Ostomy Toronto president and last month I arranged her airfare to attend camp 3 weeks ago.  Sadly, just 3 weeks after returning from camp, Alison is gone.  Alison passed away this morning and her family has decided to donate her organs. Alison who gave so much in life inspiring others with her pictures and being a wonderful ostomy ambassador is also giving life through her death.

My heart breaks for Alison’s family today.  Her dad was the first parent I came in contact with after I became president.  He is a musician and had picked something up when working in LA for us to auction as a fundraiser.  Last month, after a very difficult period in my own life, her mom called to make sure I was ok, and just last week we had a long talk on Facebook about some changes in my life. Alison and her family have been wonderful ostomy ambassadors and her loss has hit our community hard, especially our campers and staff.  Please keep her family and all of campers and Ostomy Toronto/UOAC family in your thoughts and prayers at this time.

Alison’s dad emailed me some of his music a few months ago.  One of them was a piece of music he wrote after Alison came in the house from dancing in the rain, it’s full of pictures the way we all want to remember Alison, laughing and happy.  Alison had a difficult last year as she struggled with complications from her colitis and surgeries.   While she has left a big hole in the hearts of all who knew and loved her, she’s at peace now, happy and pain free.  Alison, the ostomy community won’t be the same without you and we will work to honour your memory and help others who travel the same road.  Rest in peace beautiful girl, we will remember you just as you are in your dad’s wonderful video.

Posted in Uncategorized | 2 Comments

Memories of…………….ORANGE AEROS!

I’m in Waterloo this week, staying at the Wilfrid Laurier University student residence near King and University.  I booked this two months ago for a lot of reasons, some of which I can’t share right now, but mainly so I could get away without spending a lot as all I wanted was a quiet place to reflect and work on my presentation for the UOAC conference as Janet is nearby in Hamilton and to also keep some UOAC commitments regarding the Parents of Children with an Ostomy Committee and the leader also lives in Hamilton.  Most of all though, I just wanted to reconnect with an area I love – after my parents died and until my aunt died in 2006, I spent every holiday here and often had 3 Thanksgivings in one weekend between her and some friends.  I went to school here, I graduated 20 years ago at end of May and that summer I spent much of my time here looking after my aunt who was ill and again in 1996.  I pretty much was here at least once a month for many years.  I miss it, I miss my connections here and while I didn’t do the writing I planned other than my one meeting about the parents network I’m helping with, I did get a lot accomplished.  Mainly rest, connecting with a few friends and thinking about some changes in my life. It’s been great, but far too hot so didn’t do as much wandering around as I hoped.  At one point I drove around town with someone a little older than me who grew up here going – remember, that used to be Harvey’s, what about the Hiway Market and Lulu’s when it was Kmart.  Was so much fun remembering the Kitchener of my childhood as I visited here regularly for the first 10 years of my life and my parents had planned to retire here as it’s my dad’s hometown from when he moved to Ontario.

Just as many things have changed, so much has stayed the same.  I walked up the other night to 7-11 for a few things and was suprised by the cost of a chocolate bar so I wandered around thinking surely they have some on sale.  That’s when I spotted it!  An ORANGE AERO BAR!!!!  I’d seen on tv the night before an add for Orange Aero Holes, but I had no idea they’d brought them back.  I picked up two (that reminds me I should eat the other one :)) and ate one after I finished my supper.  The memories of Orange Aero came flooding back, from both my childhood and another time right here in Waterloo.  Did you know they used to always have Orange Aero?  It was my favourite chocolate bar as a little girl.

When I was young, my dad often took us to church alone. We went to an inner city church in downtown Ottawa though my parents had moved out of downtown when I was 6 months old.  After church, my dad would often take us to buy a chocolate bar.  My brother would buy this strangely good bar that was actually a light brown colour and I think was more caramel than chocolate flavoured and I would get an Orange Areo.  I couldn’t have been more than about 6.  I was heartbroken when they disappeared from store shelves.  Fast forward 15 years and I’m studying Computer Science at the University of Waterloo.  My new best friend/roommate tells me about Terry’s Chocolate Orange – her favourite chocolate.  I was like oooooo, I love chocolate orange, I haven’t found anything like that since they got rid of Orange Aero. She looks at me strangely as she’s never heard of orange aero but I told her they had them.  A few months go by and one day we slip into the front row in our hellish computer science class we had that term, and she says she has a surprise for me.  She pulls out an Orange Aero!  She had been home in St Catharines and gone into a Scottish store with her mom and saw them there.  So she bought one and we sat in that awful class and split the Orange Aero bar.   It was delicious.

After that, they did bring Orange Aero back to Canada for a bit and it’s back again now as a limited edition.  Funny how I found this out on Monday, my dad’s birthday, and at the store where we used to sometimes go to buy candy.  I love orange aeros, I love my dad for all the wonderful memories he left me and I love Waterloo – I had a really hard time with school, I cried a lot of tears here, but Waterloo is the closest thing I have to home.  So this week has been full of memories, mostly good as I never even got on the Waterloo campus.  I’ve enjoyed seeing how they’ve completely transformed Uptown Waterloo into something I enjoy more than Yonge & Eg and marvelled that it costs more to live in Uptown Waterloo than where I live now.  I’ve connected with old friends, visited Stratford, got some much needed rest and realized I need even more.  And I got to taste that Orange Aero again and be enveloped in memories of a Computer Science class 23 years ago and of my dad’s little rituals after church.

It’s been a great week.  Tomorrow and Monday will be interesting. I hope I can return to Toronto re-energized, though I certainly don’t think I am right now.  If you like chocolate and orange, go out and get an Orange Aero……………..for a limited time only!


Posted in Uncategorized | 1 Comment


are inevitable.  At some point you’re going to have one, no matter how reliable your ostomy system.   You can’t let the fear of having one though keep your from enjoying your life.  Keeping as calm as you can, dealing with it and going right back out there is best. It’s not always easy, I had a couple that freaked me out for a number of days, only because I take transit and I have no idea how I would have gotten home without the help of my winter coat and the fact it was one of the few days of the year I actually had a ride with a friend.  In the end, if you tell your story, even if it’s to vent, usually be the end you’re either laughing or realizing that one day you will laugh about it.   All of this is a summary of a conversation I had today on Facebook.  It reminded me of my BEST story – this one is great because not only was it my worst nightmare come true right after I returned to work with my ostomy, but because in the end it’s what taught me that the worst nightmare can have the BEST ending!

Let me set the stage.   I’d been back at work about a month, I was still taking accessible transit and I using the cane I use outside to this day.  I work in cubicle city – each module consists of row after row of cubicles and the washrooms are half way between each set of modules, so not exactly close.  On top of that, I sat in a 6-plex of cubicles across from a 4-plex of cubicles, all open to each other, with all of my male coworkers, so no privacy at all. I had returned to work with a duffle bag full of supplies including an emergency clothing change.  That first morning, I called my three male coworkers into a room and explained why I’d been off 6 months and that I had an emergency kit under my desk and if I ever went to the washroom and returned wearing different clothes, I jokingly said to take me for a coffee as I’m having a bad day.  My coworkers were great, particularly Adam who said “Mary with a bag is better than no Mary at all.”  Their reaction helped me as I became more open about my ostomy surgery over the years.

So back to my leak story.  I went to the washroom thinking nothing was amiss, how quickly I discovered I was very wrong!  I realized I had a very serious leak. I also realized I needed my supplies which were back at my desk.  Remember, down the hall, into the cubicle maze, though thankfully not too far.  I panicked, I had only had one public leak, and it was nothing like this, and I had to risk meeting people I knew getting back to my desk.  I went to empty what was still in the bag, and in my panicked/freaked out state, I dropped my bag resulting in the contents going all over the floor.  Great, not only did I now have to clean up the floor before I could go back, but there was someone in the stall two doors away!  All I could think of was thank God I didn’t see them on my way in and could they hurry the hell up and leave so I could clean up and get  back to my desk.  They left, I cleaned up as best I could, and headed back to my desk.

Now remember, just walking was a challenge for me, but I sprinted as best I could sprint, back to my desk dove my hand under and grabbed the duffle bag and hiked it back to the washroom.  I must have been gone 40 minutes as it wasn’t the easiest task and I was still pretty slow at it at the best of times.  I managed it though and got headed back to my desk having managed to at least keep my blouse from needing to be changed.

I must have looked pretty frazzled when I returned hauling my duffle bag.  My coworker Adam and I sat back to back in the six plex and he’d noticed I’d come back for that duffle bag.  As I returned to my desk, he turned his chair around and said “Are you ok?”  to which I slowly replied “Yes.”  Then he said “Can you take a joke?”  I again said “Yes.”  He said “What do people say when something bad occurs?”  I thought about it, but I was so frazzled I couldn’t think of anything so I just said “I don’t know, what?”   With that he said in a very determined voice “SHIT HAPPENS!” turned back to his desk and continued working.  I burst out laughing.  All the bad and embarassing things that had just happened faded and it was all ok.  I tell this story often and tease Adam that he’s famous in ostomy circles.

It’s this experience that taught me I can survive any leak – it may not seem funny at the time, it may freak me out a bit for a few days, but in the end, I’ve learned I can laugh it off and share it with my ostomy friends as one of my “war stories.”  It also taught me that I had no reason to fear sharing about my ostomy with those who cared about me.  Adam rocks.  So do all of my coworkers who have supported me.  IBM prides itself on it’s history of accepting people from all backgrounds and all abilities – they are leaders in diversity.  Every IBMer I’ve worked with who I’ve told a bit of my experience, has demonstrated this in spades, starting with Adam and my coworkers who supported me when I disappeared without warning for 6 months due to illness to my manager who hired me knowing I was about to have surgery and made me laugh through a difficult second 6 months off to our corporate citizenship manager who gave me some amazing opportunities last year to the volunteers on my project who are still supporting Ostomy Toronto and the UOAC to my current team who gave me the opportunity to speak to all my coworkers in 4 countries about my experiences.  It’s what’s great about being an IBMer and I hope they all realize that not everyone has had this experience in the workplace.  It’s helped me with my confidence in talking about my ostomy and knowing that people will accept me no matter what.  If they don’t, they didn’t really before they knew.

So remember, leaks happen.  You need to deal with them and move on. Tell your war story to your fellow ostomates if you need to vent.  Even if not immediately, one day you’ll look back and realize you got through it, you’ve moved on, and maybe, just maybe, you can tell the story with a laugh.

Posted in career, health, IBM, ileostomy, ostomy, Ostomy Toronto, UOAC | Tagged , , , , , , | 3 Comments

A personal appeal…..

Dear Friends

Each of you mean so much to me and have been such a source of encouragement over the years, particularly as I faced serious health challenges over the last 8 years.  I can’t believe it’s been nearly 8 years since I was went from diagnosis with ulcerative colitis to emergency surgery to remove my colon and form an ileostomy to fighting for my life due to sepsis within the space of a month and finally learning to walk again so I could return to my life.

Returning to my life was my biggest challenge.  I didn’t know how I would go back to life as I knew it with an ileostomy.  I felt things would never be the same and the nurses who looked after me did little to relieve my fears.  Their comments and instructions made me think I would never be able to look after my ostomy in a shared washroom and I wondered how I could ever return to work.   The only people I’d heard of with an ostomy were so much older than me, I thought I was the only 36 year old who had had this surgery.   I felt so alone and while the nurses and all of you tried to encourage me, you hadn’t been there yourselves.   I didn’t even have access to a computer to try to do my own research.  I had no idea how I would be able to return to my life.

Eventually I got out of hospital and went online and discovered an entire community of people with an ostomy.  I learned that people of all ages from newborn to senior citizen had ostomies and that many people my age were living very successful lives and that an ostomy was not and end, but a beginning.   I also learned that their were ostomy associations across Canada, including one right here in Toronto, and that they offered a visiting program for new ostomy patients.   I wondered why I had never been offered a visitor. I went through so much pain and depression as I struggled to come to terms with what had happened to me, a visitor my age would had helped me tremendously.  I wished I had known that Ostomy Toronto existed and could have been provided a trained visitor while I was still in hospital. It would have done so much for my recovery.

As I fought to return to life as I knew it and get back into my career, I wanted to help others with an ostomy, but I felt I could only do so online.  Not only was I still struggling after learning to walk again, but their meetings took place over 20km from where I lived.  So I devoted myself to the online community.  I had nearly died of sepsis, the doctors had given up, yet God had chosen to spare me and I knew there was a reason for it.   Fast forward 5 years and I found it.  I had moved to Yonge & Eglinton and was finally living near where Ostomy Toronto met. I began attending meetings and met so many people who had successfully transitioned to life with an ostomy and also those who were just beginning their journey with an ostomy.  I saw the wonderful work they did through their ostomy resource centre, support meetings, visiting program, sponsorship of inspirational youth with an ostomy to attend our amazing Canadian Ostomy Youth Camp, publications and other services.  I wanted to do more, I knew I’d found the reason I had survived.

In the 2.5 years since I joined Ostomy Toronto, I have had some amazing experiences and been able to help so many people.  After a year I joined the Ostomy Toronto board and undertook a project with 6 of my amazing colleagues coming in as volunteers to reinvent Ostomy Toroonto.  A year ago this week, in the midst of the project, I was appointed president of Ostomy Toronto, a position I never aspired to, yet it feels right.  It’s been an incredible year – our project was very successful and we have a growing membership in the parent/youth/20-40 age range.  We have more and more nurses asking for our new materials and referring patients to us, we’ve distributed thousands of brochures.  I cannot believe how far we’ve come in just one short year.  However, I need your help.  Ostomy Toronto cannot continue to expand its services and offerings without you.  Running our resource centre, sponsoring youth to attend camp, holding our support meetings and offering parent/youth/20-40 related programming all costs money, as does the distribution of our new materials that nurses are now regularly requesting more copies of.

The work of Ostomy Toronto is invaluable to new ostomy patients, I wish I had known of their services after my surgery, it would have gone so far to help in my recovery.  Our new marketing materials, created by our volunteers and printed by our sponsors, are opening doors for us and helping us to expand our services.  I want to continue to make Ostomy Toronto a valued resource for patients facing these surgeries.  Won’t you help me to continue my work?  Every little bit helps and it would mean the world to me if you would support the efforts of Ostomy Toronto.  I am honoured to serve as the president of an organization that provides much needed services and resources and want to make sure that people who are where I was 8 years ago are helped to transition from healing to learning to embracing life.

I embrace life every day, please consider helping me help others to do so. You can make your donation online through Canada Helps, http://www.canadahelps.org/GivingPages/GivingPage.aspx?gpID=17878.   If you are uncomfortable donating online, you can also donate by sending a cheque to the Ostomy Toronto office at 344 Bloor St West, Suite 501, Toronto, Ontario  M5S 3A7.

Thank you for considering my request.  For more information on the valuable work of Ostomy Toronto, please visit our website: http://www.ostomytoronto.com


Posted in Uncategorized | Leave a comment

Long time no post……..”Let’s be heard”

I have been very neglectful of my blog, my last entry was December 31 and it was just a copy of my January president’s message for Ostomy Toronto.  Unfortunately, that’s all that’s going to happen this time too – I’ve had a lot going on in my life including a health scare that occupied my mind for last 6 months and now has been taken care of by test results that came back normal and meds to make the issue go away until we can arrange day surgery.   Work has also been tough – I enjoy my work, but my transition into my new job did not go smoothly and in last 2 months, I’ve given up some work and taken on a whole bunch of new work that keeps me more than occupied.  I’m even filling in for a coworker who is on leave for a couple of months.  2012 has been treating me well; though it has been a little scary while the health stuff sorted itself out.  In January, I received an incredible opportunity at work, I got to present about my voluteer work and being selected a IBM ECF Hero to my entire area, everyone reporting to my 2nd line manager including employees in Mexico and Argentina. It went incredibly well, I got lots of great feedback – they said it was very interesting and held their attention.   Which brings me to the second part of my blog title, “Let’s be heard.”  This is the theme of 2012 World Ostomy Day and for my February blog message, I wrote about getting to speak to my coworkers about having an ostomy and the ostomy association and how we could all “be heard.”   So I must run, as now I’m 4 days from my second presentation in a month – a presentation on social media as the speaker for the February Ostomy Toronto meeting.  I will do a better job of blogging, I just need to get through the next few days, I haven’t even written my March president’s message and it was due on Friday!  I have no idea what to write about.  So for now,here’s my February message.

Whether you’re enjoying the Canadian winter, or the warmth of the sun in Florida or some other destination, I hope you’ve stayed well.  While I’m not fond of winter, I am looking forward to February and not just because it brings my birthday!  February’s support meeting brings a topic near and dear to my heart, social media. I am passionate about using social media to expand our reach within the ostomy community.  Whether you use social media or not, I hope you’ll come out for this month’s meeting to hear how social media is making a difference in the lives of persons with an ostomy and hear some of the success stories we’ve had.  Of course, this means I have a presentation to write, and I have not just one, but two that I need to finish in the next couple of weeks!

On January 17, I will be speaking about my involvement in the IBM Employee Charitable Fund and my work with Ostomy Toronto and the UOAC.  I spent a lot of hours on New Year’s Eve/Day, preparing for this presentation – my first to a completely non-ostomy community audience!  It’s a struggle to balance using these opportunities to promote ostomy awareness with people’s discomfort of discussing what goes on behind the bathroom door.  A year ago, I thought it was very brave to agree to have a profile of my volunteer work go up on a wall outside our cafeteria that told everyone that I had an ostomy.  Little did I know that a year later, I would be much more open than I ever imagined.  Even though I am comfortable talking about ostomy surgery, speaking to my coworkers about this subject is intimidating, especially when it will be on a teleconference where I cannot see audience reaction.

While I have chosen to be open about my ostomy, I know many are not.  How open you choose to be about your ostomy is a matter of your own comfort level and preference.  I met one man online who had an ostomy at age 20 and went on to get married, raise a family and have a successful professional life. This man went to his grave after over 50 years with an ostomy having never told a single person outside his immediate family.  While this goes to show that no one knows unless you tell them, it also speaks volumes about people’s fears and the negative stigmas surrounding ostomy surgery.    While I consider this man a wonderful example of someone who embraced life with an ostomy, it saddens me that he felt it necessary to hide the surgery that had enabled him to lead this very successful life.  It’s for this reason that I identify strongly with the theme for 2012’s World Ostomy Day of “Let’s Be Heard.”

It is time that persons with an ostomy are heard and that we do as the UOAA’s conference theme said “defeat the stigma.”  While I recognize that each of you have varying comfort levels surrounding what you tell people, there are many ways you can be heard.  One way that everyone can help is simply by showing up at our monthly meetings and being there for those who are new or may be struggling.  We need people to come out to meetings and be positive examples of embracing life with an ostomy. Another way you can be heard is by becoming a trained visitor – we will be holding visitor training on August 14.  While you don’t need to speak in front of groups or shout it from the roof top that you have an ostomy, you can help shatter negative stigmas by talking positively with others about your experiences with ostomy surgery and what it has meant in your life.  You can also participate in the online community which has the benefit of being as anonymous as you wish.  Whether your ostomy has allowed you to continue to be there for your family, has given you back your life after years of chronic illness or has allowed you to accomplish things you never dreamed possible, each time you tell your story in a positive manner, you are not only heard; you help to defeat the stigma.  So in 2012, let’s all be heard!  If you’re interested in helping plan our World Ostomy Day Celebrations, please contact me.



Posted in Uncategorized | 5 Comments