On Wednesday I gave a speech on behalf of the Canadian Centre for Male Survivors of Child Sexual Abuse. I was asked to present my approach to living with cancer as a means to help others understand the challenge of dealing with shitty things that may happen in your life.
It was probably the first time I was really really nervous about presenting in front of an audience. It wasn’t the 300 people that made me nervous, it was the topic. I’ve given lots of speeches, I’ve done hundreds and hundreds of pitches, but each one of them had an object I was speaking on. Sometimes it was sponsorship, other times creativity, could be on Village or Evans Hunt, could be Best of Calgary or any other combination of topics. But they were always me speaking on behalf of something else, this time it was me being raw and speaking about my own personal journey.
Leading up to it I vacillated back and forth on what to say, what to include, what not to include…and each time I came to the conclusion to just tell my story.
And 99% of the time when I do well at a presentation it is because I don’t bring speaking notes. I simply pick 3-5 bigger ideas and think about them as guideposts. I fill in the rest as I stand up in front of the audience. This time, and partly to make Tracey comfortable, I wrote out my speech. It was going to be one of the first times she was going to watch me as a keynote and I think she was nervous that I hadn’t put anything on paper yet. It’s a difference of style but in my ongoing efforts to try and reduce stress that I put on her I decided to write out my thoughts and sent them to her. I think it helped…except for the parts she didn’t necessarily agree with or understand. But that’s not the story today. The story is that I finally wrote a speech. And here it is.
Oh, and I probably only said about 50% of this. I love the impromptu elements that come about when under the pressure to perform on stage. I may even have made a few laughs happen at my own expense, and Dave’s.
Hello everyone, hope you are all feeling awesome today. Super humbled to be standing in front of so many friends, family. All have been so supportive and caring. Everyone should be as lucky as me.
I believe my purpose up here is to talk about living with a challenge. Mine happens to be terminal cancer. But could be early onset of Parkinsons, mental health issue or living with the memory of being sexually abused at an early age.
I received my most recent catscan results last Wednesday. Stable in some spots, new and increased growth in other spots. I’m sure you could look at the news as positive or negative. I’ve chosen both. Good news and bad news.
I believe it all comes down to how you are able to deal with the challenge. I’ve been blessed to have a ton of support so it’s easy for me to say this of course. And I’ve always been a positive open-minded guy, or at least I thought I was.
Until one day I received a text.
Let me explain. First of all I’m going to tell two personal stories today. I’ve chosen these two as they were significant moments that changed how I approached living with cancer.
I want to start with a story to put this in to perspective- this is the moment where I discovered my path and my approach to living with a disease.
I received a text from my friend Avnish Mehta as Tracey and I were sitting on our bed digesting the news that my cancer had metasticized with 15 lesions in my lungs. The cancer was back and in an aggressive way – I had just been told I had Stage IV Terminal Renal Cell Carcinoma. The Oncologist was giving me 12-24 months. Tracey and I were having the expected challenge of dealing with this timeframe and the news so when Avnish sent this text I paid attention.
We talked at length about how he brought me into a healing session in his mind after having me pop up many times in his mind. In the healing session he identified the dark clouds and he did so without knowing that I was meeting with my Oncologist to review the scans. He identified my cancer before the medical industry could.
Digest that!
Since that moment I have had many conversations with Avnish and he has given me tons of advice and guidance. He’s a great man and he changed the course of how I live with cancer.
After the discussions I was open to taking a mindfulness course, I took Qi Gong (a healing meditation with movement – think of people in parks doing Tai Chi). I started this blog as a means to share what I was going through, I felt it was the best way to help others and myself along the way. We are all connected and we share a collective energy, Avnish was the one to show me the way.
Avnish opened my eyes to the connectedness of all of us. This shift allowed me to be more open to new ideas, open to being vulnerable, open to accepting energy from others. And the deepest of all, having more gratitude for all I have each and every day.
You see I am way more comfortable giving. I think that may be true for many of us.
And while I’m not a researcher, a doctor, a psychologist, heck I have no professional designation so what I am about to say isn’t based in fact, it’s simply my opinion.
I personally believe being more mindful, being more open, sharing your challenges with others and knowing you have the ability to manage your own destiny are arguably the most important factors to living a healthier happier life.
This is but one mans opinion, an expert in living with cancer mind you, I should see if I can get a professional designation for this, is that how you approach it up here has a seriously significant impact how you manage the physical and mental challenges that come with the big storms of life.
Before I tell another story on how I feel I took control, and this is after I learned from Avnish the importance of mindfulness, being more open, and impact of sharing, receiving and gratitude, I want to give another piece of my belief system.
I think we need to be careful of chasing happiness solely for happiness sake. I think North American culture of wanting perpetual happiness is causing bigger issues. It doesn’t allow us to actually live each day when we set the bar to be only happy. We need all the emotions we need to be down so we appreciate the up. We need it to be difficult so when easy happens we appreciate it.
Not sure how many of you have read ‘A Brave New World’ by Aldus Huxley. Let me paraphrase my interpretation- in this novel the pursuit is for a society to only be happy. To indulge their every passion and want. A very utopian thought right. Society should be doing everything so their citizens are happy. To do so they remove all the negative moments, thoughts and ideas, everyone gets a dose of (soma) and everyone feels happy.
But they’re not. They’re automons, they’re robotic and it’s not in human nature to live this way. They are not truly ling. Eventually they figure it out but only by understanding that death, disease, dying are part of what makes us human.
It forces, or should force us to live. To actually live. And to actually live you need to be open to the lousy stuff. You have to embrace the lousy stuff and realize it’s an equal part of the game. You need the downs to feel the ups, the darkness to revel in the light.
And if you can find a way to share when you are in a bad spot then others can help pull you out. It’s the most amazing thing when you open up, are mindful of all that is going on, both the good and bad and then allow others to be a part of it. It makes it so much easier.
I had a big network of friends prior to my cancer journey, and I can honestly tell you that by opening up and sharing, which was a big part of who I have always been, gave me the biggest surprise of my life. Not that I should be surprised, but the amount of support, giving, baking, things like #Jimsocks, tub talks, stickers…all these things came about as a result of being a part of a bigger thing. A shared responsibility for each other. And I’m the lucky recipient. I was just surprised at how much capacity there was to give.
And you should realize you are not alone, you can find support. This is the purpose of today. To make you aware of an issue and to fund opportunities to build support systems for men living with the trappings of having been sexually assaulted at a young age.
This next story is the moment when I realized it’s up to me. It’s different than what Avnish taught me. This is when I regained control of my own destiny psychologically.
Let me set the stage.
I’m at the family cottage. I’m on a drug called pazoponib. It’s toxic and powerful and the side effects are like nothing I’ve experienced before. This was my first treatment. I was in a lot of pain, had hard time bending joints, mouth was full of sores, couldn’t taste good and it hurt to eat anyways, big headaches, had something called hand and foot disease (where hands and feet are really sensitive and get easily irritated so you wear gloves et). Actually lots more but I’m disgusting myself as I tell you all this. But it’s important to know I was getting beat up.
I’m super social, love being around people, and this was only time in my life where I hated talking to people, being around them was a drag, and I was way more comfortable lying in bed staring at the ceiling or sleeping.
It wasn’t until my most loving, caring, brilliant partner and wife came in to the room, sat at the end of my feet and said those words husbands hate to hear. ‘Honey we need to talk’.
She proceeded to say Jim I think you are depressed and we should find a way to help you out.
Pretty easy honest words right?
Well as an individual that was spiralling downwards and only saw the negative in everything I naturally lashed out and said ‘you don’t know, I’m in this all alone’.
‘You don’t know, I’m in this all alone’
Tracey had a tear role down her cheek and at that very moment I was outside myself looking back and I realized I wasn’t Jim. I was my cancer or I was my cancer drug. But this was not me.
That courageous woman and that single solitary tear made me realize I needed to get control of my own destiny.
Tracey left, I lay there pondering the precise I had averted. I put on my pants, a tshirt, two pairs of gloves and went out to do chores with the rest of the family. Couldn’t bend my legs, wasn’t much help, did my work away from everyone else and was in my own thoughts. I was taking control. I stopped taking the drug, it wasn’t for me.
I apologized to Tracey and thanked her. A shadow of Jim was back and he was looking to bring the rest of him along.
Till the next day when I woke up to a 104 degree fever. I had an infection, we went to the emergency, I got 4 or 5 bags of saline and a bag of IV antibiotics.
Came home and lay in the couch to watch, and this is where it gets seriously inspirational, came home to watch the last concert of the Tragically Hip. Watched Gord Downie singing his last songs as he was dealing with terminal brain cancer and this was his last hurrah.
I was in awe. I was inspired. I listened to courage and I built up courage. I watched him screaming at the end of grace and it was like he was screaming for me. What a moment in time.
Tracey and Amanda were on the other couch and they had gotten up to go to another room. You see my daughters best friends aunt had died of cancer two days prior. She was quite emotional and for good reason, cancer, death and dying were all around her. She obviously knew I was struggling, she knew I was just back from an emergency visit, her friend was grieving and we were watching a terminally ill man sing his heart out.
The gravity of that moment, the culmination of the two days, the inspiration of Gord. Wow, I was alive. Seriously all this happened in the span of 36 hours and I was transformed. That night I sat, and excuse me I’ll make this as delicate as possible, I sat on the toilet all night, barely ever made it to the bed. And I was happy, so very happy.
Try and imagine any time you spend on the toilet at night in distress and consider yourself happy.
Well I did. I was in control. But I needed the magnificent Tracey, I needed to stop a drug that was impacting me psychologically, I needed a visit to emergency to get past a physical challenge, I needed Gord and I needed to see my wife and daughter going thru a tough time. I needed to get better for them and I needed to get control for me.
Those are the two big moments in my cancer journey, for those are the two big moments where I made a difference in how I approached living with a terminal disease that often throws really complex challenges at me.
In wrapping this up, I think my purpose in attending today was to share my stories with the hope that you have a bit of a different perspective on how to deal with shitty situations. We all have them. We’re all trying to live great epic lives while riding the rollercoaster. But it’s that isn’t it, the rollercoaster of life is better when you realize it’s the ups and the downs that make it all worthwhile.
Thank you everyone I appreciate your time.
Jim
My last quote before I hand it over to my pal Dave.
‘Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming "Wow! What a Ride!’
Quote by Hunter S Thomson
After the presentation I felt quite happy. I felt I was helpful and I felt that I didn’t embarrass the family name too much (although I did swear a couple of times in front of the Her Honour, the Honourable Lois E Mitchell, Lieutenant Governor General of Alberta - yikes).
But to be really honest, my favourite part without a doubt was watching Tracey get a standing ovation from 300 people. The whole crowd fully understood her role in getting me to this point. The caregivers are often forgotten, but it seems this day my sweetie got her due.
And that made my heart swell 1 3/4 times bigger.
Here are some Neil Zeller photos. Another great man.
