Published on July 21, 2016
In my last blog, I had an aha moment where I realized that I am becoming an advocate. I have had many titles over the years: daughter, sister, wife, mother, military spouse and volunteer. In all of those titles, I also realized that I tend to be a little controlling and driven. But never once did I associate the title “advocate” with who I was.
Today, I’m learning what that new title means as I try to figure out how it is that I evolved into this new role. Being an advocate is sort of like being a mom. One difference is that the voice I've used to yell and scold my children with, I’ve now toned down to speak to others. Another thing I’ve noticed is that I’ve become more informed on what lung cancer is and isn’t. As a mom, I could play Answer Grape [a colloquial phrase that refers to a "know-it-all" that started as an animated character to answer questions about wine. Today, it is used to answer a child’s questions]. I could be very creative in my responses to the kids. For example:
Child: Why do I have to wash behind my ears?”
Me: Because if you don’t, your ears will eventually end up sticking out from the side of your head!”
Today, as an advocate, one of the first questions I get asked is: “Did she smoke?” Now I have to be calm, use that question as a teaching moment, and remain calm. Instead of a blaring and annoyed “NO!!!” I’m learning to return the question: “What made you ask that question?” Today, that’s followed by "Can I tell you a little about lung cancer?“”
Turning into an advocate was not a path or job I would have taken on my own, nor is it one I think my family would have chosen for me. Up until Jillian’s diagnosis, I held many jobs. One of the jobs I worked part-time at was a hardware supply store figuring out the nut from the bolt! Each piece depends on the other to make a connection. It’s a great metaphor for lung cancer. A very basic and simple look at this would be to think of lung cancer, or any cancer, like this: the tumorous cancer cell needs many things to make its connection: blood, other cells, a sleeping immune system…in order to grow, mutate, metastasize. Nuts and bolts—the necessary connection. Or look at it like this: researchers need to think about tumors and clinical trials outside the box—to be innovative and figure out how to separate the nut (healthy cell) from the bolt (cancer cell). Yet another way to think of this metaphor: researchers, patients, survivors, oncologists need advocates to help make the connections they can’t do on their own. We are the nuts (no pun intended); they are the bolts.
As advocates, we have unique opportunities to use our voices to educate, raise awareness and fundraise for our cause. Right now, my cause is lung cancer. It’s hard to believe that it’s been three years since losing Jillian to this deadly disease. It’s bittersweet. Seeing so many more survivors who are thriving because of new therapies and treatments which have come about because of the nuts and bolts: the researchers; the oncologist and the patient.
In the last few months, I’ve attended and participated in two lung cancer conferences. LUNGevity hosted the first. The first day was an advocate track. For the first time, I was asked to speak to other advocates about my journey. In retrospect, it was an opportunity to talk about my whys: Why me, Why Jillian’s Dream, why now, why lung cancer. The short version is that as her mom, I had to be the one to talk about her, what happened to her and how unfair it was. Jillian’s Dream was started as my way to raise awareness and to educate people, to put a face to lung cancer that had nothing to do with smoking and to follow in her footsteps and help find a cure. Why now? Well, that’s simple…John Lewis once said: “If not us, then who? If not now, then when?” If I couldn’t be her voice who would be? And if I waited any longer to do something, say something, then how could I expect any change? That’s pretty much what advocacy is right? Although my speech didn’t go as I planned, and I got more emotional than I wanted, it was well received, because another lesson I’m learning as an advocate is that when you speak from the heart, it reaches the heart.
The second conference I attended was from Free to Breathe. In creating Jillian’s Dream, I thought I had established an innovative fundraiser that would and could be repeated with better results. One thing I didn’t take into account was the need to become that “leader” who knew how to delegate, motivate and lead. So participating with this group gave me the tips, tools and support. I’m very fortunate to have organizations to turn to not to mention all the friends I’ve made and can lean on.
Advocacy takes time—getting known and communicating a clear message takes time. Nuts and bolts. Advocacy is hard. You need to be strong and passionate, not overly aggressive, have a community behind and beside you, and a firm commitment to make a difference one person at a time, one day at a time. I didn’t grasp that quickly. For advocacy to work, and to work well, it needs all of us and the roles we play for a purpose. It’s not done single-handed. It needs collaboration, sharing of information. Nuts and bolts. I’ve come to learn that. While my story is important, so are all of yours. We are a part of what makes up the nuts and bolts of lung cancer, and I, for one, am honored to be a part of the hardware.
Stronger than lung cancer,