Posted in October 2011
We have been touched by asbestos in individual ways, yet we are joined together by a common bond of community. As a testament to the strength of our global family, Asbestos Disease Awareness Organization (ADAO) is highlighting the courageous stories of our members with the “Share Your Story” feature on our website.
This week, we would like to honor the story of Alan Reinstein, former President of Asbestos Disease Awareness Organization (ADAO).
We encourage you to submit your personal stories by clicking here and following the simple instructions on the page. In sharing, comes healing. Remember, you are not alone.
ALAN’S STORY
(shared by his widow, Linda)
Name: Alan
State: California
Time of 1st Symptoms: Summer 2002
Time of Diagnosis: June 2003
Diagnosis: Pleural Mesothelioma
Treatment: Multiple surgeries and chemotherapy, including the radical Extra-Pleural Pneumonectomy (EPP) — a surgical procedure that removed Alan’s rib, left lung, pericardium, and removed and replaced his diaphragm
1939 – 2006
In 2003, our world shattered. After months of unexplained symptoms and countless doctor visits, my husband, Alan, was diagnosed with mesothelioma – a word I couldn’t pronounce, a disease I’d never heard of, and one that doctors couldn’t defeat.
Before this devastating diagnosis, Alan and I loved to run marathons, hike Half Dome, ski black diamonds, and sail. We were adventurous, full of life, and never imagined how quickly it could all change.
The mesothelioma learning curve was steep and painful. While searching for answers and medical treatments, I made a horrifying discovery: asbestos, the deadly chemical responsible for Alan’s illness, had not been banned and was responsible for one of the most significant man-made disasters in history, killing tens of thousands every year in the United States and around the world. We naively believed our government safeguarded us from toxic threats like this. How wrong could we be?
Alan fought a hard three-year battle against mesothelioma with incredible strength and resilience. His asbestos-caused illness forced our 10-year-old daughter to witness her father’s slow, painful decline from what we would learn was an entirely preventable disease. Our story, heartbreakingly, is far from unique. In his final year, Alan was tethered to supplemental oxygen, like a dog on a leash, fighting with every breath.
I yearn for Alan’s return – my soulmate, my daughter’s hero. Grief, I’ve learned, is just love. It’s all the love you want to give but cannot. But in the face of great loss, I’ve found a new purpose. I’ve vowed to weaponize my voice to end the deadly legacy of asbestos that stole Alan from us. Through ADAO’s 20 years of education, advocacy, and community support efforts, I honor Alan and our family’s loss. Alan’s story drives me to fight tirelessly against the continued use of this deadly substance so no family ever again has to suffer the pain that we have experienced.
Every life lost to asbestos leaves a family fractured by grief. Every voice raised brings us closer to a world where no one suffers as Alan did.
For Alan, our daughter, and every family at risk, I won’t rest until asbestos’ deadly reign of illness and grief is ended. It is the honor of a lifetime to have the most comprehensive proposed legislation of our time, the Alan Reinstein Ban Asbestos Now Act (ARBAN), be named after my late husband and for all the Alans who have lost their lives to asbestos exposure. The fight continues on.
U.S. Geological Survey, Mineral Commodity Summaries, January 2011
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