Happy New Year!!!  I trust everyone had a time of celebration and renewal over the holidays!  2012 is upon us and already it holds much promise for Ostomy Toronto!   The new year is a time to reflect on the previous year and to set resolutions and goals for the coming year.  As I reflect back on 2011, I’m so amazed by everything that has happened and wonder how 2012 can top it.  Earlier this year, the board began looking at some goals for the next 5 years for Ostomy Toronto.  This is still a work in progress and some of them will be challenging, but it is better to try and fail than not to try at all.  At a high level these goals include:

•         To increase Ostomy Toronto membership by 10% per year for the next 5 years

•         To provide better support to parents of children with an ostomy

•         To promote public awareness of ostomies and shatter negative stigmas

•         To improve our financial position by establishing 2 annual fundraising events and obtaining new sponsorships/benefactors

Some of the ways we plan to accomplish these goals include:

•         Partnering with hospitals, medical professionals,  ostomy suppliers, related non-profits and others to extend our reach within the ostomy community

•         To establish a new 20-40 group within Ostomy Toronto in 2012

•         To establish a youth program that will eventually offer a minimum of quarterly activities for youth aged 9-18

•         To encourage youth to volunteer and raise up young leaders for roles within Ostomy Toronto by establishing a youth committee reporting to the Board

• To partner with other organizations such as the UOAC and Sick Kids Hospital to support parents of children with an ostomy from birth to 18

•         Creating marketing/promotion materials  and holding public events aimed at promoting ostomy awareness.

So how are we doing?  Well in the 6 months since we did this first draft, we have made progress:

We are making progress and I want to thank our board for all their hard work.   However, we cannot succeed in these goals without you and we will be outlining how you can help in early 2012.

I usually don’t set resolutions but I know many do every year – how successful they are varies. Carolyn Arends wrote a song called New Years Day that talks about the idea of new years resolutions and the fact that we have a tendency to give up when we fail rather than starting over. She writes:

Each and every New Year’s Eve
I make myself a list
All the things I’m gonna change
Until January 2nd
So this time I’m making one promise
……
This will be my resolution
Every day is New Year’s Day
…..
One more chance to start all over
One more chance to change and grow

We all need to be less hard on ourselves – sometimes we stumble and fall short of goals, yet we need to get right back up and try again.   So in 2012, let’s remember how far we have come and celebrate our successes and not give up on our goals and instead strive to make every day New Years Day.  This isn’t easy, I personally have failed at this many times, but this song reminds me I need to learn to be less hard on myself.

If you’re in the 20-40 age range, don’t forget we have our first 20-40 group meeting in January.  Wishing you all the best in 2012!

Mary

When I last wrote, I was participating in the ECF campaign at work.  I was so glad I was able to do that and IBMers raised over $3 million for charities across Canada.  The campaign ended 2 months ago so imagine my surprise when 3 weeks ago, I got asked to present at my director’s Q4 All Hands Meeting on January 17 and it said “ECF – Ostomy.”  I figured 5 minutes, but it sounds like they want much more so debating now what to include/not include and how to talk to my first audience without any connection whatsoever to the ostomy community.  I’m going to reuse some of Carolyn’s slides from our June event and go from there.  It’s a fine line when you start talking about medical issues – particularly bowel issues, so got some ideas banging around in my head, but not at point I can just sit and write and write.  Hopefully that happens soon as I have to have this done on January 11 plus all my national reports need to be organized/written by the 15th along with a donor update.   And to add to my not liking public speaking, I agreed to do a one hour presentation on social media for the February Ostomy Toronto meeting – yep, in a moment of weakness , I volunteered myself to speak in February .

So what else has been up?  Well I’m struggling with some health issues that started earlier this year and came to a head at end of September.  I’m on meds that aren’t working very well but are keeping me out of emergency while I wait for a specialist appointment.  I’m fine, but frustrated and angry over repeated delays that resulted in my being forced to go to a community hospital 25km from my house instead of to Mt Sinai and that doctor said you don’t belong here, you belong at Mt Sinai and refused to examine me.  He is arranging CAT scan and ultrasound though, so that’s a start and he’s referred me to Mt Sinai but it sounds like I may wait up to another 6 months when this could have been done in October and I’d have a February appointment.  To add to my frustration, my wound, which has been healed over for several months, suddenly reopened and is now 3.5cm deep, .3cm deeper than September 2009.  That’s the third regression in a year and my wound specialist and I are now believing it’s connected to the other issues I’m having, if only it happened the week before so I could have told the specialist and had it included in my Mt Sinai referral.  At this point, I think I need to go back and see my surgeon, which I was hoping to avoid.  All of this is annoying, frustrating and discouraging as this wound is nearly 5 years old and it keeps healing/regressing and driving me nuts.  Good thing it doesn’t hurt.

I had a lovely Christmas brunch with my cousin and received some beautiful towels.  She also drove me the 25 km to my specialist appointment, kept me calm and talked to the doctor afterwards, which I really appreciate as she’s a very busy executive director in an accounting firm.  I’m so glad I have her nearby as even though we don’t see each other very often, she’s always there if I need her.

I think I will end here, I just wanted to give an update on what’s happening.  I just don’t feel much like writing right now as I do so much writing for other reasons.  I’ve also had some stuff going on at work and my role has been changing and evolving – I’m doing some new stuff and it’s going well, but I’m not sure where I’m going next.  It’s all good, I’m learning and making a difference with the work I’m doing.  We’ve had lots of good things happening at Ostomy Toronto including the addition of two new board members and a 20-40 group that’s starting in January.

I am going to try going back to more regular updates.  At least by writing this update, I’ve taken the first step.

Belated Merry Christmas and all the best in 2012!

After everything I’ve been involved in through Celebration of Service, I thought I was through for the year .  Imagine my surprise when I came back from vacation to a message asking me to participate in the ECF campaign as one of the ECF Heroes.  Each year IBM chooses several employees who give back to their communities to profile as part of the ECF campaign.  Each ECF hero has a poster that profiles their community work that is put up throughout IBM locations across Canada.   I was both surprised and thrilled to be asked.  One of the regrets I’ve had this year is that due to timing, I’ve only been able to tap into resources for Ostomy Toronto, yet I also volunteer with the United Ostomy Association of Canada.  While the poster is meant to highlight the work of the employee, everything I’ve done this year is about ostomy awareness to me.  I wanted to include both Ostomy Toronto and the UOAC in the poster, and when they asked me to write the first draft, I saw this as the perfect opportunity.   The poster turned out great, I’m not sure how well you’ll be able to see it, but here’s what it looks like:

ECF Hero Poster

The poster wasn’t everything though!  With this year’s focus on service, IBM Canada’s General Manager, Bruce Ross wanted to feature the ECF Heroes as part of the campaign kickoff video.  There are four of us from across Canada and we were each to be filmed talking about our volunteer work.  Two days before we were to shoot the video, they decided that myself and the other person who was local to Toronto, would appear in the video being ‘interviewed’ by Bruce.  We were told we’d get a script and would need to draft answers to the questions in it.  This made me very nervous and then we were given only a few hours to write our replies as they needed to be loaded into a teleprompter and translated into french for the subtitles.  I spent a lot of time memorizing what I wrote (I’ll never be an actor as it was only about 45 seconds ) as I wasn’t sure about this whole teleprompter thing.  I was very happy to hear my friend Dave would be there as that made me a lot less nervous.  I had a lot of fun filming it, though I’m told when they said I didn’t smile at all during my first time through except when I made a mistake, that they were being very kind.  Unfortunately I can’t show the video here, but I will say I didn’t cringe when I saw it, so I think that’s a good thing .

Much as I was thrilled to participate in the campaign, the most exciting opportunity for me was still to come!  The reason I have been quiet the month of September was because I was involved in helping out on a urgent issue at work and after working all day, I volunteered on this project evenings and weekends.  The first week, I worked til midnight on the Monday, a total of 16 hours, and I was exhausted, but just as I was about to log out, I got an email that had me bouncing up and down in my chair and shouting yes and then realizing it was too late to tell anyone about it LOL.  Ostomy Toronto was asked to display as part of the ECF charity showcase at the campaign kickoff breakfast at IBM Canada headquarters this Wednesday.  For me this is the most exciting opportunity as it’s another way to promote ostomy awareness PLUS this is the home office of myself and nearly all of the members of my Celebration of Service project and we get to take all the beautiful new materials they developed and show them off right in our office.  I think this is going to be a lot of fun, and I’ve encouraged all of them to come by if they are in the building that day.   I have something up my sleeve, if I have time to arrange it tomorrow .

So while I know I still owe at least one more post regarding my trip to Reno and the remainder of my vacation in August, I wanted to get this up before the ECF campaign started but I needed to wait until the campaign materials were out.  The posters are now up, my former second line manager saw me last Monday just after he put up all the ECF posters and yelled “there’s the superstar.” ROFL  The video is now up on the IBM intranet and a link to it was in the campaign kickoff email last week.

I’ve always enjoyed the ECF campaign activities and I’m so glad I’ve been able to participate this year.  I encourage everyone to “Give Where They Live!”  Just $1 a day can make a huge difference to an organization in your local community.

My last post was written during a delay leaving Toronto – it was not my last delay unfortunately.  I am still annoyed that when I got to San Francisco that they told me instead of 45 minutes to make my flight, I had 2.5 hours.  This turned out to be wrong and after being set aside and moved last of all passengers requiring assistance, this meant by the time I switched terminals and went through my first TSA pat down (no big deal), I missed my connection by 5 minutes as it had left on time .  I was stuck in San Fran for another 2.5 hours, so I made the best of it and got supper and then the 2 things everyone must get in San Fran – Ghiradelli Chocolate and Sourdough bread .  15 hours after I left my condo, I was at the front desk of the hotel checking in and had LeeAnn sneak up beside me and give me a hug!  This was the first of many old friends I saw during an awesome week of reuniting with old friends and making lots of new friends.

We had a great week!  It started with a fantastic tour of Lake Tahoe and Virginia City with Gayle Stowe, Peter & Donna Folk, Carol Bastille and others from the conference.  Gayle found a fantastic tour at a really great value!  Our tour was 10 hours and included lunch at a very nice restaurant in Virginia City where we could choose anything off the menu.  If you’re in Reno and looking to do a tour, I highly recommend Bayside Tours.  I paid twice as much for my tour of Lake Louise and Banff and it was terrible, I saw very little other than the two famous hotels and then 45 minutes in downtown Banff – it cost twice as much and I paid for my own lunch at a Banff restaurant I’d been to before.  Back to Lake Tahoe and Virgina City.

Our guide was very entertaining.  Our first stop was Squaw Valley, it’s amazing how tiny a place it is for having hosted the Olympics – it’s just the ski resort – where our bus was sitting had been the site of the arena, but it’s long gone.

The mountains around Reno/Lake Tahoe are not huge, but they are very different from where I’ve visited in the Rockies and Alaska.  They are very barren, the small pine trees they have are, like I was told about the ones when I went above the treeline in the Yukon, over 100 years old and are the ones you get pine nuts from.  While the mountains may look very barren, they were not always this way.  Our guide said some thought that Nevada was divided from California by the trees, but Nevada had trees too, it’s just they were clear cut a very long time ago.  It looks dry and very desert like now.

Lake Tahoe is beautiful!  It’s one of the clearest lakes, you can see so deep you can watch the fish swimming which is exactly what we did at our first stop.  Our guide had some bread from our brief break at McDonalds and used it to attract the fish.  We walked around a bit and because people always complain I have no photos of me, I got Peter Folk to take one

Lake Tahoe is not a very warm lake, even in summer – it can be 39F under the surface.  In spite of that, at our next stop at a beach, there were lots of swimmers and people using personal watercraft etc.  The mountains around Lake Tahoe look very different than those just a short distance away towards Reno.

After the beach, we passed through a couple of the small towns surrounding the lake.  These remind me very much of Banff. We didn’t stop in any of them, but we did get around a good portion of the lake and saw a hotel that was owned by Frank Sinatra at one time – they even painted around his name on his parking spot so people could still see it lol. We saw the house Sylvester Stallone built in the area.  One thing we learned is that you can’t remove trees or change the landscape, so some houses are built around trees or with trees going through the middle of them and they just put up something clear around it and you can even see animals in the trees lol.  We saw where Tim Conroy lived for over 30 years, leaving 3 weeks after Dennis Rodman moved in next door (coincidence? we think not lol).  We also saw the residence Lucille Ball kept where she had multiple apartments in the building so her guests would have some privacy.  This is also the land of BONANZA! and the Ponderosa Ranch.  While you can no longer go up to it we did see where the ranch is located and our guide, who has every episode of the show, showed us various spots where scenes where filmed such as some of the opening sequences.

We drove through Carson City, the capital of Nevada, and onward to Virginia City, the old west!  We had some time here to have lunch and explore.  Lunch was included in our tour and we could choose anything on the menu at the restaurant!  I had a lovely pulled pork sandwich. Afterwards I explored the area, the first stop was the candy store with Gayle & Carol, but we lost Gayle!  I picked up some cashew brittle and some peanut butter fudge – good thing I did as in spite of getting a fridge for the hotel, I never left the hotel again to find a store and get drinks and snacks.  Carol and I wandered around, the wooden sidewalks were very difficult as they were not flat, they went up and down and were slanted.  Thankfully there was tonnes of seating.  I picked up a purse at a leather store where everything was $20 and under and I bought myself, Sonia and Michael a t-shirt – my only purchases in my 7 days in Nevada!

We drove through the hills and into a valley where there were large ranches, including that of the owner of our hotel in Reno.  We learned that the wind there blows fierce and hits the mountains and comes back to the houses, so they put big walls of soil around the houses to protect them, especially the windows that require sandblasting every couple of years.  Even with that, you can have windows break.

We headed back through the mountains to Reno and that night we had our internet gathering!  More on that another day!

One of items I am most proud of from our Reinventing Ostomy Toronto project are the projects centred around the theme that your ostomy does not define you.  Together with the stories of Embracing Life on our website, I believe this is what we need to encourage younger members to get involved, to show people that life goes on with an ostomy and to promote ostomy awareness/shatter negative stigmas.  I was determined that we would have a youth participant for this from amongst our campers and I was thrilled when 15 year old (she’s had a birthday since we started) Kaitlyn O’Brien agreed to participate.

When Kaitlyn agreed, we didn’t have the poster campaign designed, we just knew we wanted stories of people who are embracing life with an ostomy.  We didn’t even have the Healing. Learning. Embracing Life. tagline yet.  Kaitlyn did a great job on her story, it’s up on our website, it made me cry.  She’s made me cry a few times since, but it’s good tears .  Later, one of our brilliant volunteers, Stephen, was working with another volunteer Tanya and they were struck by the statement two of our board members made, that their ostomy does not define them.  They mocked up a poster campaign and one featured a track and field athlete stretching and it was “What defines me?  I am an athlete.”  When we needed a person to go on the poster, I thought of Kaitlyn immediately as she does long distance running for her school. I asked for a picture and as luck would have it, she had a great picture of her running in a meet the previous week.  Hence our first poster was incredibly easy to come up with!  We already knew Kaitlyn would be speaking at our event, so we decided to use the same picture for the invites I’ve posted previously.  The final poster ended up looking like this:

Kaitlyn O'Brien - What Defines Me? I am an Athlete.

I hadn’t met Kaitlyn when all this work was done, and just before our event, her mom sent me her speech.  I read it and it was so great, it fit in perfectly with our theme of embracing life and it made me cry.  As I said in my report on our event, it was the highlight of the night and Kaitlyn got a standing ovation.  I’ve been wanting to put Kaitlyn speech and poem from that night up in my blog, and since my flight to Reno is delayed, I’m doing it now.  I thought as I take off for over two weeks to attend the UOAA conference and UOAC meetings, that this was a good topic for today as on August 17 Kaitlyn will be giving me a tour of the Canadian Ostomy Youth Camp in Bragg Creek, Alberta!  It may take me a couple of days to get my next post up, but in meantime, here’s why Kaitlyn got a standing ovation!  (Thank you Kaitlyn for letting me post this!  Can’t wait to see you at camp!)

Mount Sinai Hospital – Ostomy Toronto June 15th, 2011

Good evening everyone, my name is Kaitlyn O’Brien and I’m 14 years old. It’s an honour to be here tonight.  Being able to tell you my life journey and how I’m a prime example of someone with an ostomy who embraces life. I have chosen to embrace the life I was given to its fullest because I don’t know any other way to live.

My life was very difficult when I was younger.  Not only was I in pain but I can imagine my parents were as well. Seeing their newborn baby go through such a rough time. Taken out of my parent’s arms right after birth I was immediately rushed to SickKids in an ambulance. My parents knew I would be in good hands. The year that followed was extremely difficult, like a roller coaster one might say. The first year in the hospital I spent hooked up to all sorts of machines recovering from many surgeries. At first my intestines didn’t work so I got a colostomy.  Eventually things were repaired and reversed and now I have a cecostomy.  Later, my body wouldn’t let me eat properly so I got a g-tube which is a form of an ostomy that was put in place to enable me to get the food I need and to this day I still have it.  A few years later I had problems with my bladder.  They solved that by creating a mitroffanoff which is a channel made out of my appendix that is connected to my bladder to allow me to empty my bladder but due to some complications it had to changed to a monte which is channel made out of my bowel that is also connected to my bladder and this is how I empty my  bladder currently.   Both a monte and a mitroffanoff are ostomys. My 3 ostomies are in the shape of a triangle on my tummy:)  Ostomies are given to patients with various different abnormalities.   I have VACTERL syndrome. VACTERL is an acronym meaning each letter stands for a different abnormality. Vacterl syndrome is an illness that does not have a cure therefore I will never get better but these ostomies allow me to live a better life.  I may seem normal on the outside but I am different in many ways on the inside.

Social media has impacted the lives of many people. Facebook and blogs like Uncover Ostomy spread awareness and help people connect and seek help. Many others also share their stories knowing they will not be judged. Knowing there are people out there makes me feel like I’m not alone. Ostomy Toronto’s website is another great resource.

My life is filled with many extracurricular activities. I’m most passionate about running. I am on my high schools cross country and track team. I also enjoy swimming and cycling with my family. For almost 9 years I did ballet. I recently started swimming to help improve my posture. During the winter I downhill ski with my school team and friends and family.

Most people would think it would be hard talking about your intestines and bladder and well you know what I mean in front of strangers but I know a few people here tonight from a place I have gone three times but it made a impact that will last a life time. This is a place where people with similar medical issues go for a week in the summer. This year Easter Seals camp Horizon ostomy week is in August and I can’t wait.  I’m sure some of you here who are going can’t either.  Many of the others who have no idea about it are probably wondering why we are so excited so I’ll try to tell you.  It’s a week in Calgary, Alberta with many children and teens that also have ostomys. A week where we are all with people we can relate to and share our problems with.  A week where we are encouraged to participate in numerous activities such as rock wall climbing, hiking, swimming, white water rafting and my favourite a giant swing Without the help from Ostomy Toronto and their amazing support team, and provided funds I would not be able to attend camp.  Without my ostomys I would not be well enough to go to camp.

With all my medical issues I have, I spent many long periods of time in the hospital where I have a lot on my mind and need to just relax although that is quit hard sometimes.  But with an amazing social worker, by my side I can achieve anything so I decided to take up poetry.  I want to share with you one of the poems I have written it is called I AM I hope you enjoy.

I am courageous and brave
I wonder if I will ever get better
I hear the strength in my brother’s voice
I see the pain in my parent’s eyes
I want every child to be well
I am courageous and brave

I pretend that my life is not difficult
I feel the beat of my heart
I touch my long strands of bravery beads
I worry about getting too sick to be cured
I cry when I’m in pain
I am courageous and brave

I understand that the doctors are trying their best
I say live each day like it’s your last
I dream about getting better
I try to believe in my self
I hope organizations like Ostomy Toronto are always around
I am who I am

Living with my ostomies has changed my life and has given me the ability to embrace life and nothing will hold me back.

So on behalf of Ostomy Toronto, I thank you all for coming here tonight.  Ostomy Toronto has been there for me and perhaps it will be there for you some day in the future.
Thank you

Are you crying yet?  I am   Now you know why Kaitlyn got a well deserved standing ovation!!!!!!

So let’s see, a year ago I anticipated my new adventures to be:

• Stepping onto the Board of Ostomy Toronto as a Director
• Returning to school to study Finance & Accounting at Ryerson
• A career change from Asset Management where I felt I had been painted into a corner, to Finance and Accounting
• A trip to Sydney to attend the UOAC Conference

There were a couple of other things going on I didn’t mention, like I’d been asked to run for the Board of Directors of the United Ostomy Association of Canada, but I was seriously considering turning it down because I didn’t think I could handle it and school.  I felt I had no choice but to throw myself body and mind into returning to school in order to continue my career.  I hadn’t said no to this position, but I had said ask me again in April after I’ve finished 2 terms of school.  I also didn’t mention in that first post that while I was in Sydney I would be adapting my Wings of an Eagle story posted here under “My Writing” for publication in Ostomy Canada magazine.  And I had no idea that IBM was turning 100 years old the next year and what doors my story and IBM’s Centennial would open for me.  I was also under the impression that I was being asked to work at a national level and thus would never take on the role of President of Ostomy Toronto……………something I did just 8 months after my first post.

So did I have new adventures?   Yep I did, far more than I planned!   Did I have a career change, no I didn’t, at least not much of one.  The reason I thought I needed to change careers disappeared, at least temporarily, as after 10 years of trying, I find myself working in the Asset Management area and in a team lead level role for the first time.   That joke was on me, as I started my path back to school after being given impression there would be no future for me in the AM area.

I think my blog has documented my unplanned adventures pretty good lol:

• I did return to school and I loved it in many ways – and I did prove I could do it, I was the top student in my class
• I learned I was very good at Accounting & Finance and thought maybe I might have a future in it, though I still wasn’t sure it was for me
• I enjoyed my time as a Director of Ostomy Toronto and working with the board, though my time as director was shortened when I became Acting President of Ostomy Toronto!!!! That was completely unexpected LOL.  A month later I was elected President
• I started doing some work for the UOAC and with school going well, I had decided by October I would run for the Board – good thing as I was asked if I would by 4 different people .  I step onto the Board 3 weeks from today!
• My story got rewritten as planned while I was in Sydney and was very well received leading to some incredible opportunities to raise ostomy awareness by sharing my volunteer work at IBM
• I made more presentations and did more new things than I ever could have anticipated – for someone who is naturally very shy, hates public speaking, and has done TWO formal presentations in her entire career, both in last 18 months, I now find myself doing many presentations and public speaking is becoming a necessity
• I made a lot of new friends within the ostomy community and at IBM
• I not only associated my professional life with my blog, I blurred the lines between my volunteer work and my professional life by leading a team of 7 incredibly talented IBMers in a project for Ostomy Toronto – I seriously could never have anticipated this and if you had told me I would actually do this and be good at it, I would have thought you were crazy
• I watched as Ostomy Toronto not only embraced the 2012 conference theme of “Caring in a Changing World” but reinvented themselves to better serve their community and promote Ostomy Awareness – I had thought we’d be learning how to do this at the 2012 conference, now I’m hoping we’ll be part of that session as a leader
• I quit studying Accounting & Finance and picked up the area I said I would rather study, Non-Profit and Voluntary Sector Management, though today I made the decision to postpone this at least one term to focus on learning my new job

So what does the next year hold?  Well I’m a UOAC Director now and Ostomy Toronto President and a year from now it will be exactly two weeks before Ostomy Toronto hosts the 2012 UOAC Conference.  I can’t wait!!!!  I’m going to Reno and looking forward to not just promoting the UOAC Conference but meeting up with friends both old and new!   I have a few presentations to make between now and end of October. I have a new job that I really haven’t done yet as I’ve been busy “fire-fighting” so as soon as I’m back from my trip I will be working on learning 3 additional accounts that are not as new as my current one and working towards doing my actual role and transitioning what I have been doing to others.  I am going to the Grand Prix of Figure Skating in Quebec City in December. I will be starting on some communities at national level – not sure what yet, though I got some hints today.

That’s what I know right now.  Based on my track record since last year, I’m sure there are all kinds of new adventures awaiting me and I am just going to sit back and enjoy the ride!  I hope you will continue to follow my journey…………..

Ostomy awareness is something we need to promote as persons living successful and productive lives thanks to having received this life saving surgery.  As the press release says, this is often a very secretative surgery, no one wants to talk about it.  Bathroom habits are still a taboo topic; recently a billboard promoting colon cancer screening using the tag line “What’s up your butt?” in the Buffalo area got so many complaints it was offensive that it was removed.   I’m sure if the billboard had used a similar sentiment for promoting getting screened for breast cancer, the complaints would not have happened.  This needs to change – we can talk about getting your breast, prostate and even testicles screened, but not a lot gets said about our colons.  In November here in Canada we had people growing moustaches for Movember for prostate cancer awareness and a guy in Toronto living in his boxers for a month for testicular cancer, both of which received tremendous media coverage.  However, ostomies, colon cancer and IBD don’t get the same type of coverage – we are lucky to get any.  No one picked up Ostomy Toronto’s joint press release with IBM and my appeals to media didn’t get anywhere either.  Colon cancer is one of the leading causes of death from cancer in Canada.  People need to get screened and they also need to know that an ostomy is not the end of the world, that they can live successful lives post-ostomy surgery.

Media and tv mentions of ostomies, when they occur, are often negative.  You just have to look at the 2009-2010 television season where Gray’s Anatomy mentioned ostomies negatively  in both the season premiere and season finale and Mercy did in their season premiere as well.   There was also a very negative article in the Halifax paper where a doctor suggested that his patient was young and single and basically suggested it would negatively impact her sex life.  I watched a local story about a young man starting a new UC treatment using very powerful drugs and saying that if he had to have ostomy surgery, it would mean an end to his active lifestyle – TOTAL BS!!!!!!!!!  Coverage like this spreads much further than the positive images that the UOAA, UOAC and people like Jessica Grossman and Rob Hill promote. How much media coverage have you seen of Uncover Ostomy and Rob Hill’s 7 summits climb?   Yet a guy living in his underwear for a month and letting everyone watch gets covered by all the local media outlets and Movember was everywhere.

All of this means many people are very private about the fact they even have an ostomy.  I’ve become much more vocal this year as I have had both my volunteer work and the Ostomy Toronto IBM Celebration of Service project profiled by IBM including joint press release  and in the IBM corporate press release about Celebration of Service and in at least 3 related videos.  Thousands of people in IBM have heard about the Ostomy Toronto project, have read about my volunteer work and heard top executives in IBM Canada say the word ostomy.  I even let my volunteer project link be sent to all the members of old and new teams at work. I’ve had people talk to me about their own struggles with IBD and colon cancer as a result.  Not everyone is as open as me, and some have had negative experiences when they have been.  I have not, everyone has been very supportive, but, I also keep things very very general unless I’m asked specific questions.  I have marvelled at how the 7 people I worked with on my project all completely embraced and talked openly about ostomies, understood when we talked about the negative stigmas and not wanting to be defined by our ostomies and did tremendous amounts of research and read a handbook for new ostomy patients cover to cover which goes into great detail about life with an ostomy.  No one ever seemed uncomfortable and they came up with amazing ideas for logos, posters and our tagline.  Would I have normally done this?  No, probably not, but as I said when I was asked to do a profile of my volunteer work, if it means even one person who eventually has someone in their life facing ostomy surgery learns that an ostomy is not the end of the world and that Ostomy Toronto, the UOAC and UOAA exist to help ostomy patients transition to life with an ostomy, then it will all be worth it.  I had no idea at the time just what this would lead to, but it’s been an amazing opportunity and I have to thank my friend Dave for encouraging me to do it and Carolyn for coming on board and getting so completely involved in Ostomy Toronto.  So many people have been made aware of ostomies in a positive way through our Celebration of Service project!

I had an online friend who had an ostomy for over 50 years, got married and had kids and he went to his grave having never told anyone outside his immediate family he had an ostomy.  While I understand that people do consider it private, what more wonderful an example of someone living successfully with an ostomy would you have as this man was a very successful professional.   We need people who are “embracing life” with an ostomy to speak up and be heard to shatter the negative stigmas associated with ostomy surgery so that when faced with this treatment option, people don’t say I’d rather die than have a bag.  Look at Farrah Faucett………….and where is she now?

So whether or not you have an ostomy, please help spread us promote ostomy awareness and shine ostomies in a positive light!

More on my blog anniversary and my trip to the UOAA conference in Reno/my vacation tomorrow!

I’ve hummed and hawed a lot this week about taking my computer, even taking my *work* computer and catching up on the hundreds of pages of reading I should really have done by Monday at 10am.  However my soon to be former team lead said “Noooooooooooooooo” and the transition manager for my account said he placed a curse on me and if I take my work computer, that I’ll get rained on .  So home it stays and I’m not taking my own either.  Perhaps a few days away from regular computer access will help me gear up for the next 8 business days before my vacation.

So what have I been up to and what’s been happening in my life since my project wrapped up?  Let’s see:

• I did very little Ostomy Toronto work – only a few time sensitive items like appeal letter and getting stuff done for my trip to Reno
• My new job picked up a lot and it’s been rather overwhelming at times, but I am getting the help I need now, I’m actually making sense in meetings and I’m starting to check stuff off my list of items I need to accomplish instead of continually adding to it
• I saw my wound doctor with great hopes that I would soon be healed – no such luck, my wound regressed to 1.1cm deep and if everything else wasn’t going so well, I’d have a good cry as that’s the second time in 6 months I’ve had my hopes up and got the wind knocked out of my sails
• I had a lovely trip to Kitchener with my friend Rica and a great visit with Vidya &
  Gwen, always nice
• I got a phone call 2 weeks ago tomorrow saying they are realigning accounts in my area and I am moving to a new manager who is based in Montreal – very few of my team, maybe 4, are  based in Toronto, so that will be different – I will have my first real conversation with him one on one on Monday
• I found out today I’m getting 3 more small accounts to work on, ones that are “steady state” ie BAU so that I can start learning my real role as my large account is still in transition – I’m looking forward to it, but I also thought I had enough to do in the 8 business days before my vacation lol – thankfully it will be mostly shadowing/learning this month
• I’m seeing my friend Karla regularly, which is always very nice and I got to say goodbye to my happy wanderer friend, I think I said he was a bum/hobo before lol, Mike – can’t wait to hear about his new adventures!
• I have been trying to get out and about at lunch and in the evening as working from home all the time can be claustrophobic – I can’t work from Starbucks anymore as I spend anywhere from 2 to 6 hours a day on the phone!
• I ready4 books in a week!  That’s at least 3 more books than I’ve read all year!  I’ve been taking books with me when I go on my little adventures plus when I do take the subway or a bus for any length of time

So where am I off to tomorrow.  Well, I’m very excited as I’m going to see my best friend Sonia and we have lots of fun events planned!  Friday night we will see Josh Groban in concert we have floor seats and one of her friends is coming.  As Sonia says, he’s easy on the eyes .  Looking forward to that.  I’m also looking forward to spending time with my little honoury nephew, her son Michael.   If you’ve read my story under “My Writing” called “The Countdown.”   You’ll know Michael has autism.  He’s very high functioning – a very intelligent, loving, socialable little boy.  And he’s not so little anymore!  He’s nearly 10 years old and he’s very very tall, over 5 feet tall now!  I wrote an update about him about couple of years ago in my old blog, and I suppose it’s getting near time for another. I love him very much and we are going to take him to see Winnie the Pooh!  I love Winnie, so looking forward to that.  Hopefully I’ll also get to see some old friends and visit my parents graves.  And just to show it’s also business, I have an appointment with my Financial Planner Friday afternoon.  All of this should fully occupy my weekend!

So you may or may not hear from me that much.  We’ll see.  I think being unplugged will be a good thing, but if I find a little spare time I may use my friend’s computer.  Only time will tell.

For now, I’m going to kick back tomorrow afternoon on the train and enjoy the first class service with some wine and wonderful food and the goal of finishing “The Time Traveller’s Wife” by the time my trip is over.

So why the change?  Well I was painted into a corner when I started studying Accounting and Finance and since everyone kept telling me I’d be good at it, I gave it a whirl.  It turns out I was good at it, I was top of my class  and I did enjoy my studies and thought I would continue.  However, I really can’t see myself working in Finance still.  Your life is not your own and with the change to global accounting standards, this work can be done from anywhere too, so not sure it’s much different than staying in IT in that regard.  I also know I’d be at a distinct disadvantage as I never plan to pursue a designation.  The classes also seem more like work and they require weekly assignments and the workload just increases.  Weekly assignments were difficult in old job, in new job I think it would be impossible as I’m still learning and it’s a much bigger role.  I just don’t think Finance is for me, just because I’m good at it, doesn’t mean I’d be happy doing it.

So that’s why I’m not studying Accounting & Finance, but why non-profit and voluntary sector management?  Well, if you follow my blog or have had contact with me in the last 6 months, you know I’m passionate about my volunteer work.  This is a certificate I’ve been toying with the idea of doing for years, before I even got involved in Ostomy Toronto as I always hoped that one day I would work part time and volunteer 1-2 days a week.  I figured this would never happen, but it was a dream and one I might be able to make a reality when I am at retirement age, who knows.  Well now that I’m president of Ostomy Toronto and about to become a director of the United Ostomy Association of Canada, and I’m in a new job that is extremely busy, I still want to go to school, but I want it to be something I enjoy and will be useful to me outside the realm of my professional career.  Since studying photography is too big a commitment, this seemed like a good idea .  It will feel less like school and I can learn stuff I can apply to my volunteer work and one day, a long time from now, when I am looking for something to do after IBM, I plan to devote my time to non-profit work.  My involvement with the ostomy community is only going to increase and I believe these courses will be of tremendous value to me.

So if you’re going to make yourself horribly busy between a new IBM job and 2 volunteer positions, you should do something you love, so thus I’m following my heart and studying something that will never pay the bills, but has far greater rewards .  As I’ve said before, my work with Ostomy Toronto and the UOAC, doesn’t feel like work, I am inspired by the people I meet and their stories and they keep me going and doing what I’m doing.  I’m hoping school will be the same experience.  Only time will tell………………..

Sitting at Ostomy Toronto Booth Before Event

I think I’m finally ready to reflect on June 15.  It was such an amazing night, it went exactly as I had hoped and better!!!!  I wasn’t even nervous by the time we started!  I need to thank Les Kehoe for that though Rica played a big part helping me Sunday.  I hadn’t let anyone who was going to be there read what I’d wrote, other than Rica who read it as an editor and she is new to Ostomy Toronto and UOAC.  When I arrived I was hoping to rehearse by myself but I didn’t get there early and then we had to wait for Di.  When I got up there Les was there and volunteered to listen to me rehearse, which made me nervous, but was great as he had good advice and positive feedback – in fact, without consulting each other, he said we’d written things that complemented each others thoughts – we couldn’t have planned that ROFL.  The funniest thing was that as I was speaking, more and more people kept walking in and sitting down which made me nervous – finally I got to my very last paragraph, at an incredibly important point and this woman walks up and says we have the room booked!!!  We set that straight as we needed time to set up and I found out later we’d thrown out some emergency executive meeting (they told us too late) oops .

Ostomy Toronto Booth with one of our new banners

We got all set up and the A/V guy wasn’t there when we were going to do some sound checks so we didn’t do them.  I was thrilled when I went out after being in auditorium for a while and found the lobby a hub of activity with people walking around display and eating and quite a bit of noise.  It looked like a great turnout and in fact we had difficulty getting everyone into the room as they were enjoying themselves too much .  I knew an AP photographer was coming for IBM but wow, they set up lights and everything – but  he was good as except when Carolyn presented me the cheque, I never noticed him and he shot 333 photos from many angles!!!  I’m so glad that sending the photographer prompted Carolyn to get Paul to create the 8′ x 3′ banner of the Ostomy Toronto logo as it looked so awesome behind the podium as a backdrop for all our photos.

I was in the auditorium waiting for them to round out people and as people starting coming in, it was overwhelming to see all my friends and supporters come in and stop to talk to me and give me a hug.  It meant so much.  My friends Andrea, Susan and Karla came.  My home nurse, their ET and another nurse came and gave greetings and then two of my favourite nurses, Les’ wife Eileen came up and then Monica my ET, I was so happy to see them.  Michelle Wan came up and said hi, I’m sorry I didn’t get to see her afterward.  Just so many people, it made me feel so good.  I thought it might make me even more nervous – I think I was more nervous about the people I knew hearing what I was going to say rather than the strangers!!

Welcoming everyone to event

Les reminded me to slow down and I think I did ok.  I got through without stumbling, I don’t look up that much and when I did I couldn’t really see anything as my glasses slid, that might have been a good thing lol. I had a little trouble with slides as I never use them normally unless informal presentations. I got through introducing the evening, the project, an overview of all of Ostomy Toronto offerings and then the sponsors – I even added Dr Zane Cohen on the fly as Les had suggested.  I could see Carolyn a bit as she was in front and I sensed it was going well.  I got my laugh for her intro about ostomy being mentioned more in IBM Canada than in any other non-healthcare related organization.  She said like her intro .  I’m glad she did as it was her intro that kept me sleepless Sunday night until I got up and wrote it lol.  She presented the cheque to me and the photographer got his photos .

Carolyn Presenting the IBM Community Grant Cheque to me

Dr Maunder spoke and he was great as he spoke about the role of the spouse/family but also other supports such as ostomy associations.  It fit perfectly with our theme.  Karen Bruton was also wonderful, speaking about how ETs, Ostomy Toronto, industry connections like IBM etc all helped and she had a great quote from Brock Masters about how much the support he got from the UOAC & SBH organizations had meant to him.  It was then time for Les to speak.  I had thought he was only going to do a minute or two of greetings  from the UOAC but he informed me in the afternoon that he was also there as a member of Ostomy Toronto and he wanted to speak about how much Ostomy Toronto had meant to him.  I was so touched as I know he doesn’t normally speak very long and I thought he’d try to keep his UOAC hat on.  Well I was in for a surprise, he spoke so beautifully about what he had gone through and what a support Ostomy Toronto had been to him, it was just what we needed as he’s been a member much longer than our other speakers.  And it did fit right in with what I had planned and I am so glad he got the Board to stand as I hadn’t put that in my remarks.  It was perfect, exactly what was required and it fit in so beautifully with everything I had written.  It made my night .

Laeeq showing off our new website

I then introduced two of our volunteers, Tanya who worked on communications and Laeeq who did our awesome website! (Make sure to check it out! – http://www.ostomytoronto.com)  Tanya and Laeeq did a terrific job and  we shared some laughs over the fact that the Facebook feed on our homepage came up as “Inappropriate URL” due to Mt Sinai’s blocking Facebook!  Oh well, he had some pictures .  Tanya talks with hands a lot, I didn’t notice how much until I saw the photographer’s photos.  Everything looked so great, it was wonderful to see all our work go up on the screen!

Explaining our new poster campaign - What defines you?

Laeeq introduced our first Ostomy Toronto reference, Aaron Wolkoff.  Aaron did a great job and then it was time for me to introduce Kaitlyn O’Brien.  I hadn’t written anything for this, I knew what I was going to say, and I’d read Kaitlyn’s speech that morning at the hairdresser and I was a mess of tears, I read it three times.  I cried each time and I read it the last time to my hairdresser whose brother has Crohn’s and I said what do  I do if I’m in a total mess and I have to do my call to action right after her, she said go up and give her a hug, it will buy you some time.  Kaitlyn’s speech was so beautiful and moving, she even wrote a poem.  I’m going to ask her if I can post at least the poem here, as it is wonderful.  Kaitlyn spoke so fast at first I don’t think she was breathing, it was cute , but she slowed down and by the time she read her beautiful poem, she had many in tears and got a standing ovation.  I held together pretty good – which was good as I hadn’t thought I’d be sitting facing the entire audience .  I was in the corner behind Kaitlyn and I did wipe away a few tears but I was just so happy to hear her and then when finished she got a standing ovation!  At that point Kaitlyn seemed overwhelmed, and I did go up and give her  a hug but I was all smiles and I told her how well she’d done.

Kaitlyn reacting to her standing ovation

I then did my call to action and I followed Kaitlyn’s wonderful story of how much camp had helped her with a short appeal regarding sponsorship of kids for camp.  I wasn’t sure what would come of it, but we had one group  sponsor 3 kids for camp (!!!) and a few other donations afterwards.  I got through my call to action, it was the easiest part to write, and it went over well.  I couldn’t believe I got through everything with barely a stumble .  And I linked everything back to the original vision for the project and it was over.

Thanking our volunteers

I was so psyched by the end as it went better than I  could have imagined.  Everyone was, said it felt like we should go out to celebrate at a bar afterwards – not very likely with Centennial the next day as Carolyn was in charge of that .  I ran off to the washroom as soon as I could and that’s where I was found by the communications person wanting more photos lol – I couldn’t hide even in a stall .  We got lots of photos of the IBM volunteers with the banner – it took 23 photos to get it straight lol.  It meant  I didn’t get to see that many people and we didn’t get any pictures of the Ostomy Toronto board, which I regret, we will take some in the fall.

Kaitlyn and me after event

I got to walk around the displays a bit and grab some food (I’d missed supper) and talked to a bunch of people.  It was an amazing experience, I will never forget it.  It was an incredible night for Ostomy Toronto as well as for my IBM volunteers and me – it turned out exactly as I envisioned it, I wouldn’t change a thing.  I am in awe of everything we accomplished in just 3 months and even of what I myself accomplished as I never dreamed I’d lead a project such as this or end up the President of a non-profit.  I know Ostomy Toronto has a bright future thanks to the work of our volunteers from IBM and the Board and everyone who participated to make this an incredible unforgettable night.

IBM Volunteers Angela Lee, Laeeq Sameer, Carolyn Knott,Tanya Liblik, Mary Penner, Stephen Burns, and Dawn Raider-Kaplansky stand for a photo following the relaunch of Ostomy Toronto at the Mount Sinai

So that’s my report on the actual event.  I have taken nearly a month to write it as I was exhausted and didn’t want to write another sentence plus it took so long to process everything that happened that night.  I hope I did it justice.