Reflections on 9/22 – From Awareness to Action

shellyJ2014Tri-fect-a /trīˈfektə/ – a run of three wins or grand events.

September is an “awareness” trifecta at my house. September 22 is CML Awareness Day and the entire month is designated Leukemia Awareness and Childhood Cancer Awareness month. While I’m honored to have the privilege of guest writing the blog post for the National CML Society following a day as important as September 22, I will confess: I’ve never been completely sold on awareness months/days/etc. I’ve worried that promoting “awareness” as an end point could be the wrong approach. Of course I want people to be aware of the struggles faced by families of children with cancer, by leukemia patients, and by people like my own son, but what if awareness isn’t the issue? Do people really not know about cancer? I want the outcome to change. I do not want things to FEEL better. I want them to BE better.

It should come as no surprise to people who know me that I’ve always wanted to replace the word ‘awareness’ with ‘advocacy’ – but I know from experience it is sometimes very difficult to be an advocate. In my experience, when a cancer diagnosis comes, people are genuine and amazing and filled with the need to help. They want to fix it and make things better. They want to Jog For The Cure and Swim To Stamp Out Cancer, and they have the t-shirts to prove it. I love that this is true. Yet, I remember the bitter impotence of the early days post diagnosis and how much it helped me to be able to channel my energy. To feel like I was helping. To be able to DO something.

With everyone doing so many different things, multiple events happening, and people are searching for the cure, who fights for the patient? Who makes sure that lawmakers do not forget their needs? That they have access to the medication they need, the support they need and the information they need? You won’t get the commemorative photo mug after your petition to change a law is accepted. It’s not glamorous work. It is often frustrating, sometimes exhausting and yet amazingly fulfilling when you see the fruits of your labor.

There are unique challenges within the CML community. The numbers are few, patients are scattered, and the community is fractured. So how do you fight for patients you can’t rally? CML patients and caregivers are scattered across the vast expanse of the internet like the seeds of some digital dandelion. A few in this Facebook Group, some on that blog and others in a forum over here.

It takes a certain strength or stubborn tenacity to keep going. To keep trying to encourage passage of a federal law that has languished in committees for seven solid years, to keep trying to distribute accurate information when it’s not popular. Keep trying to bring people together in a time and place where it is so easy to drift apart. Please do not mistake my message, I’m thrilled that people are finding support, finding each other and making connections with other CML patients. But having a relatively small patient population scattered to the four corners of the internet makes finding a way to ‘rally the troops’ very difficult at times.

Ultimately, upon reflecting on this CML Awareness Day, I’d like to leave you with two things. A message, and a challenge. My message from CML Awareness Day 2014 is this: Together We Are Stronger. The sound of our voices lifted as one is powerful enough to change the outcome if we let it. We can make things better if we just work together. And my challenge is this: Support the efforts of your National CML Society. You can stay in the loop by visiting http://nationalcmlsociety.org. Once you’re there, join the email list, follow the society on social media accounts, and read about the latest news in the CML community. The NCMLS is the only CML specific organization in the United States. Become a member of Team 922. Encourage your friends and family to become members as well. Find out more here: http://nationalcmlsociety.org/team-922.html.

If not you, then who? If not now, then when? How many more must we lose? The voice on the radio tells me that what doesn’t kill me makes me stronger, but I think that the lyrics are off. What doesn’t kill me makes me tired. Tired of the struggle. Tired of the sickness, and tired of seeing friends lose the fight. What doesn’t kill me makes me TIRED. I bet the same is true for you. Let’s join forces and help each other.

~ Shelly Jackson has been active in the CML community since 2007 following a CML diagnosis for her son. She serves as the Nebraska NCMLS State Representative and a CML Connection Facilitator. A fierce advocate for anyone dealing with CML, Shelly has devoted countless hours of support for the goals and objectives of the NCMLS and we are grateful for her efforts.