I just attended a four day conference put on by a national young adult cancer organization. I have gone in the past and found it isolating and irrelevant to my situation, struggles and place in life.  I chose to go again this year because they made an effort to include a space for metastatic/advanced cancer patients. I wanted to support that. I also wanted the opportunity to publicly address my voice in the young adult cancer community. To bring awareness to the fact that cancer isn’t only about inspiration, positive thinking and personal growth. There are those of us that are constantly struggling with its dark side. I wanted to share my perspective in the hopes that it will bring about change and end the feeling of isolation that happens in events like this.

I was careful to pick and choose where to put my energy. I did not attend sessions where I felt I could not make an impact or that were not relative for me. One of the sessions I did attend was called “Living Your Legacy”. As a person who is looking at the end phase of life, I have given a lot of thought to the idea of legacy. I question myself constantly on how I can make my short life have impact on the people and world around me.

I sat quietly and listened while the speaker presented his argument. Legacy is not defined by your monetary estate, it is defined by how people think about you. We were told to write down one word that we could use to described what people felt about us.  Our family, friends, coworkers and as a bit of levity, our bankers. Then we were asked to voice these words. I felt the familiar pin of emotion in the pit of my stomach. This is wrong, I thought.  On the surface it seems right.  I do believe that legacy is the impact you make on others but, this way of looking at it just didn’t sit right with me. I put up my hand.  I introduced myself as someone with metastatic disease. I described how all my hopes and dreams for my future have been stolen by my terminal diagnosis. I described my dream of creating a house as a legacy for myself and a way to love my family after my passing. The room was silent. The presenter thanked me for sharing, complimented me on being brave and returned to his exercise of defining legacy as one word defined by others.  By doing this he unintentionally dismissed me and silenced my point of view.

I agree legacy does have something to do with how you impact others. But why is it acceptable that as a cancer patient I have to be content with that? Why can we not talk about tangible things that extend beyond just how we are defined by others? Why is it we have to accept the lowest common denominator? Why does my story make him uncomfortable?  I don’t want my life to be just about the love I share with the people around me. I don’t want my legacy to be boiled down to the fact that my coworkers think I’m a hard worker. That is, just not acceptable. I want my talents, my dreams, my ambitions to become part of the fabric that makes the world. I don’t want my life to be boiled down to a group of single words.

I believe the disconnect between the presenter’s take on legacy and mine revolves around my advanced diagnosis.  My impending death has given me an urgency to make my life meaningful.  Most of the people in the room have their whole lives to find and create their legacies. Still, something does not sit well with defining my life through the opinions of others.  For me, that is not an empowering way to live life.  I want to live my life on my terms.  I want my life to matter.  I want to contribute and make a difference to the people close to me and to society as a whole.  Talking about legacy is hard because we then have to face what to many of us is devastating, our mortality. This is not a topic that the cancer community in general likes to address.  But, it is always there, sitting silently in the closet.  To look at our legacy in a tangible way is facing a world that will go on with out us.

For me I’m going to build my legacy.  I’m going to build a house.  That house will speak of my love of architecture, of the natural environment and most importantly it will speak of my love for my family.  Through this house I am going to give voice to my potential as an architect, as a mother, as a wife and as a member of my community.  I am going to use my voice to advocate for myself and other advanced/metastatic/chronic cancer patients who stand beside me and will follow after me.  I am going to face, head on, the consequence of leaving this world before I’ve had a chance to live a full life. I am going to do whatever I can to make a lasting impact on my family, my friends and my community.  I am going to fight to create something meaningful and real in the world that extends beyond those whose lives I directly touch.  My legacy is not only defined by the opinions of others, it is defined by my voice.  By my dreams.  By my goals.  By my ambition to leave the world a better place after my passing.  What is your legacy?