It’s still the first month of a new year and, while I don’t usually make resolutions, I find this a great time to reflect on what I’ve experienced and learned in the past year and my hopes and goals for the new year.
An important part of my life, especially since my second diagnosis of early stage breast cancer in 2005, has been what I do as an advocate.
In the breast cancer world, an advocate is often referred to as a “patient advocate” or a “consumer advocate”. Neither of these terms, though they do have their uses, has ever really felt quite right to me to describe what we do in the fullest sense.
The verb “advocate” means “to speak or write in favor of; support or urge by argument; recommend publicly.” Advocacy, for me, started with learning how to be an advocate for myself, something that became necessary right from the start in dealing with my own health and breast cancer. Eventually, that led to sharing my experiences and advocating with and on behalf of others affected by breast cancer.
I think that the core of what we are trying to do as advocates is to bring about change. Many are dying from this disease and, most of all, we want that to end. Some of us are fortunate enough to have access to excellent medical care but many don’t have that and as a result don’t do well – we want to change that. And we want to ensure that our children, nieces/nephews and their children don’t have to deal with this disease at all.
2013 was a really exciting year for me as I finally started this blog, something I had been wanting to do for a long time. Through the blog and social media, I’ve already met and learned from many wonderful people who share those aspirations and who, for many reasons, I think of as true advocates.
Also this past year I’ve continued to review proposals for research grants on behalf of patients and others who have a stake in the outcome. I’m active as well with a breast cancer organization in my state that provides information and support to patients. Working closely with other advocacy organizations, many of us in our state organization meet with our representatives in congress and the state legislature to advocate for research funding and programs that ensure quality care is available to all.
Volunteer advocacy activities like these have been, and continue to be for me, tremendous opportunities to learn and grow. And it’s really what I’ve learned from these activities that has given me the inspiration to start this blog.
My hope for this new year is that meaningful progress can be made towards saving lives and ending suffering from cancer, including breast cancer. I know that our voices as advocates are important towards that end and in this new year I plan to keep working with my friends and colleagues and keep speaking out with hopes that we can together keep moving closer to that goal.
I know that sometimes the obstacles seem enormous. And when it comes to the need for legislative action, political realities can make progress difficult or slow. That shouldn’t stop us. When enough of us speak out–even if it’s as simple as an email or Facebook message to a representative, it does make a difference.
As I was working on this post, I happened to see an editorial by Gabrielle Giffords on advocacy. Though her cause is a different one, I’ll close with these words of hers which really spoke to me and offered a helpful perspective for those times when the obstacles seem all but impossible to overcome.
Our fight is a lot more like my rehab. Every day, we must wake up resolved and determined. We’ll pay attention to the details; look for opportunities for progress, even when the pace is slow. Some progress may seem small, and we might wonder if the impact is enough, when the need is so urgent.
But every day we’ll recruit a few more allies, talk to a few more elected officials, convince a few more voters. Some days the steps will come easily; we’ll feel the wind at our backs. Other times our knees will buckle. We’ll tire of the burden. I know this feeling. But we’ll persist.
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