It was a really difficult decision for me to stop working due to mesothelioma. I loved my job but I was so sick, I would sit around in pajamas most days feeling sorry for myself, having my own pity party. I needed to work on something besides my own daily medical battle. I couldn’t just sit around and do nothing anymore. I decided I was going to try to get Meso Awareness Day Sept 26 passed in NJ I had no idea about politics or rules, or what legislative people to see or how to contact them. My friend June told me to make an appointment and she would come with us (I got my husband involved too). I realized I could do this on the days I felt good. I consulted with June on how to get the attention of my politicians. I can hear her mantra, “call them, write letters, call them again, send them emails, make sure they know you. Go to the politician’s home offices when they are not in the capital on both state and federal level and tell them your story about dealing with mesothelioma, stand on their doorstep if you need to get their attention.”
Our first stop was a NJ state senator’s office. My husband, our daughter, June and myself met with his aides as constituents (his voters) and put our cards on the table and so did they. We spoke on mesothelioma and asbestos and finally reached a deal to get the stalled bill out of the committee and onto a floor vote. (Note here that I didn’t know what a constituent was, a committee or a floor vote, I was totally politically ignorant).
I got my meso information and asbestos patter down to 15 minutes, and started contacting all the representatives I could, and visiting those from my district, and some out of my district. I got to know their aides and their names, I called to update them or just to say “hi” so they would remember me. We would go to speak to any politician at any state, or town fair as they were shaking people’s hands. I had decided we would be tenacious. I found out about deadlines and the way to find out timeframes for a bill to be introduced and acted on. If we didn’t find out on our own what those dates were, we lost the ability to get the bill introduced or voted on at each level and had to start all over again during the next election year, contacting the many layers of Democrats and Republican levels of aides to get a bill noticed and passed.
Maybe that’s why our government is failing, so many aides, so many levels, so many people to contact about a bill.
A girlfriend who was a Rotary member asked us to speak at a monthly meeting. We found other Rotary members we knew and asked if they were interested in having us speak to their group. I met a Rotary member at our tiny town fair and told him about mesothelioma and on asbestos dangers and facts, and got another speaking engagement. I was on a roll and started emailing those program chairs to speak. I try to space them out for when I feel well in between multitudes of doctor appointments. I start up conversations in the grocery store while in line, or any other place and find people are amazed, that mesothelioma is not just a word on the television and that asbestos is still imported into the USA. During September I go to every business in town with posters for Mesothelioma Awareness Day (MAD) and speak to every store owner about it. We drop off MAD posters to all our district politicians. We set up a table at our little township’s Veteran’s Day parade. Thank goodness it was overcast, as I can’t take heat and sun. The weather is what stops me from setting up tables at every fair. My numerous illnesses prevent me from holding events. But I can talk.
By meeting so many people we were able to work with our state Work Environment Council, a terrific nonprofit that has helped us spread the word. Then this past December I was told I was being honored by this organization along with some pretty impressive people. After the awards speech, leaders of every major union in our state came up to me, everyone had tears in their eyes from what I had to say. Not only did all these leaders learn about our dealings with mesothelioma to bring back to their groups, but our state teachers unions took notice and helped me tell every educator in NJ about mesothelioma. I have come to realize we all have a part in teaching others about mesothelioma and asbestos. The more people know the closer we get to people acting on these subjects, and hopefully enable more research.
One sentence leads to another, one meeting leads to another, one person leads to another, one story…your story told by you, your spouse, and your friend can make all the difference in educating others. If you are home, all you have to do is pick up the phone and call to make that first appointment, send a group email to all your friends to make an appointment with their politicians. After all, it’s about talking the talk that makes the difference to show everyone that we have walked that walk, and we don’t want others to have to do that.