Guest Post: In Your Shoes
LIVESTRONG leaders, Vanessa Reid (left) and Shu Milne
Today’s special guest post comes from my dear friend and passionate cancer advocate, Vanessa Reid. Vanessa is a LIVESTRONG leader and has recently returned from the third annual LIVESTRONG Assembly, which aims to promote the collaboration and exchange of ideas among the Foundation’s most important partners, advisors and constituents through small group meetings, presentations and social gatherings. In today’s post, she shares her experience at one of these sessions.
LIVESTRONG staffer Rebekkah Schear handed out envelopes *and told us to open them; mine said your results are normal but Scott who was sitting next to me, his said that he had cancer. The effect was immediate upon Scott, I could see him well up as we sat there. Such was the reminder of those words it triggered something still deep within him regarding his own past diagnosis of cancer. Others around the room reacted to the news depending on what they read.
I was starting to become emotional watching other people and listening to what they had to say. Rebecca split us in to 2 groups and asked those who had been given the positive diagnosis of cancer some questions. This was interesting as it elicited such a variation of response, not least when geography came in to play. So extreme is the lack of medical care in some countries that one man said that he would tell no one or go for any help as there really is no point as there is no treatment for cancer in his country for most people. Many people in the developed world said they would tell family and friends, but in some instances people said they would not tell employers. This was interesting as this topic came up during three different discussions I was involved in at the assembly. Earlier a lady had said “that we think there is no stigma left here in the US but this right here, not telling an employer well that is because of stigma.”
LIVESTRONG Leader (France) Shu Milne said that she had more of an emotional reaction this time reading that piece of paper than when she was given her actual diagnosis. It was such a powerful exercise; it was as if cancer arrived in to the room. It opened up the emotional wounds of a cancer diagnosis, it made us feel stigma and see treatment inequality too. Someone who read that their results where normal said it made them feel guilty. This concept of survivor guilt was another topic I heard being discussed a lot over the few days at the Assembly.
During the assembly cancer was never far from us as a topic but for these 30 minutes or so it was lobbed right in on top of us in such a way that we could feel its power to disrupt lives. It also illustrated powerfully to me when I observed Scott, Shu and others that cancer never does really leave your life, their emotional reactions to the words on that piece of paper acutely brought that home to me. I felt privileged to be there and this was just one of many outstanding sessions I took part in at the LIVESTRONG Foundation Assembly.
*This session was titled “In your shoes” and the exercise LIVESTRONG designed for us was to enable everyone to get the patient perspective – as LIVESTRONG say this perspective is the most important one.
Thanks Vanessa and Marie…I was sitting across from Scott and his reaction was so instantaneous it was breathtaking. And Shu’s brave admission broke hearts and was surely confirmation that “cancer may leave your body but it never leaves your life”. No one left the room unchanged.
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Thanks for commenting Marcia. I got chills the first time I read this so I can imagine what it must have been like to have been in the room!
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Thanks for this post. I’m appalled that some people even in the U.S. would still not now tell their employers of their cancer. Back in 1996 I wasn’t afraid at all to tell my employer. But then again, my employer was a pharmaceutical company that was doing cancer research. xox
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Marcia yes you are right it was instantaneous Scott’s reaction and that in of itself told us everything we need to know about the emotional power of this disease. It was so lovely to share the table with you too that day.
Marie I can’t thank you enough for hosting my piece, I really can’t.
Jbaird this came up so much at the Assembly, this more insidious stigma that is still there , even in our developed countries for people affected by Cancer. We have so much work to do.
Thank you !!
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Marcia yes it was instantaneous Scott’s reaction and it told us everything we need to know about the emotional power of cancer in a persons life. It was lovely to meet you properly at the Assembly.
Marie Thank you so much again for both your response to my post and for hosting it for me on your special blog.
Jbaird yes it came up many times this more insidious stigma that still exists even in our more developed nations. We have much work left to do.
Thank you !!
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I can understand how those emotions would be pulled back up by a piece of paper. As I read people’s experiences everyday, sometimes those emotions are triggers – the fear, the guilt, the stigma – to have it turned onto yourself, that’s quite the powerful exercise. I’m glad it created so much conversation & reflection. ~Catherine
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the account of this exercise made the hair on my neck stand up. but it also made me wonder if some sort of similar exercise, designed to make a mark on the empathy and consciousness raising factor that spans the emotional gamut, the stigma, the cultural aspects, fear, guilt, et. al. of medical and nursing students might be something to explore. the very fact that emotional triggers are so profound makes me wonder just how our future medical teams will be able to understand those nuances, and have some working knowlege of just how much they impact us.
than you vanessa and marie for reporting on such an extraordinary exercis. and please pass on our gratitude to all the participants. they should know that their responses are valued, and that we learned so much from them.
love, XOXO,
karen, TC
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Wow Karen this is an excellent point. This week there has been so much conversation within our social media advocate community about adding to the list of requirements for what constitutes effective care for survivors that improves their quality of life.
I am going to pass this comment on to LIVESTRONG. Thank you for making a comment and I am so glad this post gave you this reflection .
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My cancer treatments in the past have played a role in my losing two jobs over my career. Layoffs and re-orgs occur and who naturally ends up on the top of the ‘to go list’? Those whoa re viewed as a potential productivity liability and additional expense on the company benefits plan.
No wonder people still won’t tell their employers. Out here in the real world (beyond the yellow wonderland of big Livestrong parties/events), little has changed w.r.t. going through cancer treatment. A little yellow plastic bracelet changes nothing. In fact, over the last year, I’d say it has gotten worse.
I’m a cyclist, and dealt with cancer in many different roles/aspects and I now get many snide comments like “Oh so you are Lance Armstrong or something?”
I reply, “I’ll never support him or the organization he created ever again. I’ll put my support where it does real good, not just PR”
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