- Posted October 17, 2012 by
This iReport is part of an assignment:
Lance Armstrong speaks out
I have worn a Livestrong band since 2009
For me their philosophy and beliefs about it being all about people and the needs of the individual when they are facing in to a diagnosis of cancer and trying to find a way to live through it and on afterwards really resonated. I had been very ill myself and felt mystified at times by how to navigate through it and I was also observing the frustrations and fears of my own father’s cancer diagnosis and the impact on him and our family.
As I found out more about them I wanted to get involved and so I signed up to be a Livestrong Leader. This provides us with a platform in our own communities to get involved with advocacy and other work on behalf of the cancer community. We receive education from Livestrong and as I discovered more about their core values and their focus on survivorship it pulled me in further. The medical community tell us that “people live with disease now”. We find ourselves in a situation where more and more people live with disease for their whole lives, and there are some very hard to solve questions that have been thrown up because of the advances in medical science creating more survivors of cancer.
Livestrong focus on serving, educating and empowering survivors and also by partnering with some of the best brains in this world they try and wrap their heads around these hard to answer questions. They convened a meeting in Washington DC in 2011 and put a lot of these big brains in one room and from that a report was developed called the “ essential elements of survivorship”, this report contains within it key elements that need to come in to fruition to help improve the quality of life of cancer patients and survivors.
Livestrong have many wonderful partners and some of them are flitting through my mind now. One person who sticks out for me is Princess Dina Mired of the King Hussein Cancer centre. This is some woman. Again without Livestrong I would never have happened upon her. Livestrong asked all of us to petition our leaders to make sure they attended the ground-breaking global summit on NCD’s, of which cancer is one, in New York last September. I was very intrigued by the end of their campaign and I tuned in to the live stream of the summit. This was also the first time I really saw what Doug Ulman meant about the power of social media, and ever since the summit I have used twitter a lot as an advocacy tool. Princess Dina Mired spoke at the summit and I was riveted. She hates cancer but her hatred of it is expressed in the most powerful intelligent words you can imagine. I have followed her ever since and she is in my top ten of inspirational women.
I got to visit Austin Texas in March and I finally got to meet face to face all of my fellow leaders I mostly knew via social media, and many great Livestrong staffers. This was a powerful couple of days. I had already met Doug in Dublin Last November when he was here for the Cancer Leaders’ Summit. The UICCC Global cancer leaders signed a treaty here in Dublin that represented how to take the next steps towards the agreement reached last September in New York, to try and cut preventable cancer by 25% by 2025. Doug is on the board of the Union of International Cancer Control. I met Doug for a quick drink while he flew between meetings and I was immediately struck by his energy. He is an intelligent and compassionate person. I enjoyed every minute of my conversation with him and came away thinking wow what a guy and how lucky are they to have him at the helm.
Doug is young as well and he recognises the need for innovation when it comes to this war on cancer. We live in cash strapped times and we need to find ways to get really clever in the way we go about things. He also realises the power of technology, the influence of social media. Doug said to us in Austin last March that they never wanted to grow “big”, in terms of physical expansion. They see themselves as staying small as a physical organisation but making strategic partnerships that create an impact and crucially staying nimble and not weighed down by the overheads that accrue from expanding too much. Another friend of mine in the cancer community, someone embarking on her journey creating a survivorship foundation called a fresh Chapter wrote about a poet who said “live the questions”. This makes me think of Doug now. We need leaders who live the questions.
Their work is both simple but complex and deep. They keep the outer layer simple and the messages simple but their work beneath the surface is anything but. I have done my digging and I am truly inspired by what I keep finding out whether I learn about another partnership they have with a centre of excellence, another initiative they are developing or another approach they deploy in their core focus of service, education and empowerment.
Last night I found out that a teenager I was also lucky enough to meet through Livestrong is about to embark on his third round with cancer. It was actually due to this boy that I got much more serious about my own advocacy work for Livestrong. Tara Williams from Livestrong HQ forwarded me a letter he had written to them that was for our representative to the UN here in Ireland. In it he said that we must listen to Livestrong as they speak up for cancer survivors. It really hit me hard the truth of this. Livestrong inspired Donal and that piece of advocacy he was involved in enabled him to feel more empowered. I love that Livestrong tell us that it is our involvement in both our own health and in the cancer fight that is the most important. My fellow leaders are testament to this.
When I was very ill no one ever told me that it would make me feel better if I tried to take some control by learning about my treatments and what was happening to me and keeping my own health records. The Livestrong guide book is precisely the epitome of that saying “information is power”. Also what about open discussion of illness? There is nothing as isolating as societies fear and lack of understanding about illness when you are ill, or even in some cases when you are dying. Joan Didion writes in her book “the year of magical thinking” that she learnt more about grief from a book written by Emily Post at the beginning of the 20th C than she did from any one around her, because she said that in some ways we just don’t “do “death very well anymore. I read somewhere that Livestrong have become proponent s of this “fight like hell” and you can overcome anything including dying with mind over matter. They could not be further from that. What they promote is information and education that makes people in both society and those experiencing cancer becoming less afraid of what they are going through, so they feel more in control and more empowered. Lance himself said “no one loses their fight with cancer; they simply run out of time.”
The picture that I have chosen of my Livestrong band represents everything I have come to hold dearest to my heart in terms of what I believe is the best way for us all to try and tackle this difficult business of both living and trying to find the answers to very tough questions, or maybe actually never getting the answers but just getting through the best we can. This is my hand with Shu Milne and Henrike Hirsch’s hand circling some of our favourite words from the Livestrong manifesto, “Unity is power”; they are fellow leaders and we were in Austin at the time when that picture was taken.
I know that my Livestrong band is never coming off. I know that there is a lot of work to do for all of us very committed to our work in the cancer community and I know that Livestrong has a very important role to play in that global community, a global community full of many other wonderful organisations, there is no argument from me that there are not lots of other equally great organisations out there, but the more I study them as I do Livestrong I realise that all of them have their own unique and important role to play in this giant jigsaw that is being created of a force for good in this world that is trying to answer some big, hard and unwieldy questions. I also know that when these events settle down as my mother said today to me, Livestrong’s survival will answer a lot of these hard questions being asked right now about them.