“Hidden Secrets. Simple Truths.” by Linda Reinstein

Posted on February 12, 2013

An important part of the Asbestos Disease Awareness Organization’s (ADAO) mission is to be the Voice of the Victims of asbestos disease. Our Share Your Story campaign is near and dear to my heart. So when Janelle and Jan invited me to share my story with them, I couldn’t say “no” and yet, I felt a little uncomfortable being in the spotlight. But when they explained that they wanted to inspire and empower other cancer patients, I was all in. As President Abraham Lincoln said,  “We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses.” 

At ADAO, I talk openly about my husband’s death from mesothelioma, but I rarely mention that I am a cancer survivor myself. I am one of the “lucky” ones. I had melanoma in 2006, which was treated with surgery, and I have not had a recurrence. To speak of cancer and empowerment in the same sentence is hard to wrap my brain around because nothing can make you feel so powerless as cancer does. I was terrified. Was my daughter Emily going to become an orphan at 13?

But, as Eleanor Roosevelt said, “A woman is like a tea bag – you never know how strong she is until she gets in hot water.”

The power I found came from my commitment to ADAO, a bigger cause. Here was a cancer that could be prevented. Here was a cancer that could be completely eliminated if people were aware of the danger of asbestos and how to protect themselves. The cause of many cancers will always remain a mystery, but not mesothelioma. I had to continue the fight to save lives.

My inspiration came from the brave Mesothelioma Warriors all around me. People like Janelle and Jan. People like my husband Alan. Throughout their illnesses, when others would have taken to their beds, they fought for a better world — a world free from lethal asbestos.

 “Mes•o•the•li•o•ma: Can’t Pronounce It, Can’t Cure It”

I want to share a bit about the personal side of my journey with Alan. Not for sympathy, but so you can better understand the motivation behind ADAO and our work. In 2003, our daughter was just 10 when Alan was diagnosed with mesothelioma. I had never heard of the word, couldn’t pronounce it, and then learned there was no cure.  I felt alone, isolated, and paralyzed as I began this journey with Alan and he chose to undergo an Extra-Pleural Pneumonectomy (EPP) — a surgical procedure that removed his left lung, pericardium, and replaced his diaphragm — in hopes of having more time with his family.

Is it my maternal instinct, optimism, or anger that fuels social action?  Maybe it’s all three.  As a mother, what could be more horrific than burying your husband? .

“The Inconvenient Truth: Asbestos Kills”

Fueled by my intense grief and anger about Alan’s mesothelioma diagnosis and that asbestos had not been banned in the USA – I knew I had to turn my anger into action – so I co-founded ADAO.

In 2006, Alan lost his fierce battle with mesothelioma. Since establishing ADAO in 2004, we have exponentially grown and become the largest asbestos victims’ organization in the United States dedicated to education, advocacy, and community to prevent asbestos-caused diseases.

 “Together, Change is Possible.”

When I testify and speak on Capitol Hill, I often repeat this hard, but truthful line: “For every life lost to asbestos, a shattered family is left behind.”

The technical revolution has changed our world forever. Social networking platforms such as Facebook allowed us to instantaneously connect, share, and comfort each other. Patients, families, and friends from around the world are able to share hope, strength, and resources. No one needs to be as alone as we were. Sharing our stories has enabled asbestos victims to unite around the world and embrace solidarity to prevent exposure, raise awareness and build a support community.

Our stories are shared and remembered. Our lives are effortlessly connected. Our voices are heard.  As Margaret Mead said, “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”