I always credit Linda Reinstein from the Asbestos Disease Awareness Organization (ADAO) with giving me my voice. Four years ago, it was Linda who started me on this crazy journey of speaking and sharing my story with others when she approached me to speak at her conference.
Heather Von St. James
Courageous Mother, Wife and Survivor of Mesothelioma
Every year, 3000 people are diagnosed with mesothelioma.
In 2005, I was one of them.
I had never worked with asbestos, but my father did, and secondhand exposure as a child was enough to make me sick decades later. I was lucky, able to make a miraculous recovery through surgery. But I experienced for myself the fear, pain and suffering this disease can cause, and I believe I’ve found my calling fighting for victims of mesothelioma and other asbestos diseases.
Eight years. I still find it hard to believe sometimes.
That first year—the one-year mark of Lung Leavin’ Day—it was just Cams and me, outside by a little bonfire on a freezing cold night, writing our fears on a plate. Mine had everything to do with cancer, since surgery was so fresh in my mind. I didn’t read his plate; they’re his fears to smash, not mine. When we were finished writing we both took a breath and shattered our plates in the flames. With that, a tradition was born.
November brings out the best in many people. The spirit of Thanksgiving is everywhere; on social media, friends are posting 30 days of thankfulness. I love this idea and have participated in it many times since I have much to be thankful for. But to me November is not a month I look forward to; in fact, I pretty much dread it every year since 2005. November means winter is starting, the days are shorter, it’s colder, it’s grey and dreary, and if we don’t have snow, we have rain and fog. My yard is all soggy, brown and depressing-- quite a change from the colorful summer and fall with all my many flowers blooming.
September happens to be one of my favorite times of the year-- not only because the weather is usually picture perfect and the leaves start turning, but every year my mom and I go to New York City for Mesothelioma Awareness Day. This was our 3rd trip and each year we love it more and more. It’s becoming a tradition for my mom and I to arrive a day early, enjoy a nice dinner and get ready for the bright and early wake up time of 4:00 am to get to the plaza of the Today Show by 5:30. We get there so early to secure a good place around the barriers to be seen by the hosts. NYC at 5 in the morning is amazing, it’s actually quiet with the occasional roar of a truck engine in the distance. By the time we are allowed onto the plaza for the taping of the show, there is a line down the block of people wanting to get noticed. All of us who were there for Mesothelioma Awareness Day were dressed in our bright yellow “Cure Meso” t-shirts and grouped together so we would be noticed when the hosts of the show came around. Strength in numbers!
Dying to be Heard is a statement that perfectly illustrates what is happening to mesothelioma victims.
Each year, 3,000 new people are diagnosed with mesothelioma cancer. Of those 3,000 victims, only a small percentage will live to celebrate 5 years of survival. Most live a mere 10 months past diagnosis and, during those 10 arduous months, they are dying to have their voices heard—by asbestos companies, medical research organizations, potential victims, and those who don’t know about this disease. Mesothelioma is a completely preventable disease, yet asbestos is still not banned in the US.
My daughter Lily just celebrated her 8th birthday this month. Eight years old! At times I find it hard to believe she is already 8. Other times it seems like she should be older because she is so wise for her age. Of course we had a HUGE birthday party to celebrate, because I like to make a big deal about birthdays. I have since her first birthday, quite simply because I didn’t know if would be around to see her turn 1, let alone 8!
The thing about cancer that no one tells you is that you are thrust into a world not only of endless doctor appointments, countless labs, CT scans, being poked literally hundreds of times until you're bruised up and down your arms, but also into a world of some of the most amazing, resilient and inspiring people you will ever know. There is also the really, really hard part very few people talk about-- the fact that a lot of those amazing people don't make it. I’ve had to say good-bye to more people in the last 7 years than I ever imagined.