In 2003, Linda Reinstein’s husband, Alan, was diagnosed with pleural mesothelioma, a rare cancer of the lung lining caused by asbestos exposure.
As she coped with the grief of her husband’s diagnosis, Linda co-founded the Asbestos Disease Awareness Organization (ADAO). Her goal was to prevent more people from suffering from avoidable yet devastating illnesses by urging policymakers to ban asbestos in all its uses.
Now 20 years later, Linda continues to fight on behalf of her husband, who sadly passed away in 2006, and the millions of people affected by the dangerous carcinogen asbestos.
Mesothelioma Hope asked Linda questions about navigating the grief of losing her husband to mesothelioma and starting the largest asbestos advocacy organization. Here’s what she shared about her story of heartbreak and advocacy.
What was your reaction to Alan first being diagnosed with mesothelioma?
After enduring 9 months of symptoms and multiple visits to doctors, my husband, Alan, was diagnosed with pleural mesothelioma in 2003.
When the doctor told us what was going on, I was paralyzed with grief, fear, and disbelief. Our daughter Emily was only 10 — just a baby in our eyes. We were a typical American family — trusting that our government would protect our air, water, and soil from toxins — but that’s false.
What treatment methods did he undergo? What were those like, for him as a patient and you as a caregiver?
He underwent multiple surgeries and chemotherapy, including the radical extrapleural pneumonectomy (EPP) — a surgical procedure that removed his left lung and lining around his heart and replaced his diaphragm.
These were incredibly painful, for both himself and for Emily and me. Watching someone you love in pain is torture.
While treatment gave us a few more years with him, mesothelioma is a cruel and deadly cancer. He died in 2006 with us by his side.
What’s a favorite memory about your late husband Alan?
It’s impossible to choose a single favorite memory of someone you love. But I will never forget the softness of his hand on my cheek or the gentleness of his voice, his profound wisdom, and the many adventures we shared, including marathons and climbing Half Dome in Yosemite National Park.
How did you deal with the grief of losing your husband?
People sometimes don’t know how to talk to you when you are grieving. They want to help, but they also want you to be okay within 6 to 12 months.
What those who haven’t lost someone don’t understand is that it changes you forever. Cancer, suffering, and death are not something that you can ever “shake off” or move on from. I was bewildered, angry, and depressed.
My community was incredibly supportive and there for me for many months after I lost Alan. My family was the sweet nectar for each day. My playfulness, humor, friends, and faith helped me.
My daughter is the one thing that kept me focused, kept me present. Without her, I would have been lost. She and I changed together, and came out the other side different people.
Lastly, co-founding ADAO in 2004 gave my pain and grief an outlet. We are now people who are dedicated to making sure that America bans asbestos so that families don’t have to suffer like ours did.
What advice would you give to someone going through the same thing with their loved one?
There are four things I tell people who learn they have an asbestos-caused illness:
- Build your medical, financial, and legal plan — and share it with your loved ones.
- Invest in self-care.
- Find something good in each day.
- Surround yourself with family, friends, and top mesothelioma doctors.
These are small steps you can take to begin to understand what you need to do.
Also remember you are not alone. There is a very large community available to asbestos victims, and there are so many resources to help people navigate the illness and potentially keep people from ever getting exposed in the first place.
How has your work evolved since the founding of ADAO, and what are your hopes for the future?
ADAO started with just two people, myself and Doug Larkin. Slowly but surely, ADAO grew as more victims, families, and communities affected by asbestos joined us. Thanks to volunteers, interns, supporters, donors, patients and their families, leadership, and our national spokesperson, Jordan Zevon, ADAO has been able to continue to grow.
ADAO is now the largest United States-based independent asbestos victims’ organization. Our network includes over 50,000 individuals eager to live in a world without asbestos and engages in several annual speaking engagements to educate people about asbestos exposure.
The organization has spoken in front of Congress, challenged — and beat — the EPA (Environmental Protection Agency) in court, created a Global Asbestos Awareness Week.
Additionally, ADAO started an Annual International Asbestos Awareness and Prevention Conference where world-renowned experts and asbestos victims present the latest advancements in disease prevention, global advocacy, and treatment for asbestos-caused diseases.
Last, but not least, ADAO has created a bill called the Alan Reinstein Ban Asbestos Now Act (ARBAN) that seeks to ban asbestos in all its uses. The bill has support from both the House and the Senate.
As we look forward, ADAO will continue to work toward preventing asbestos exposure and eliminating asbestos-caused illnesses by urging lawmakers to ban asbestos and supporting the community of individuals whose lives have been devastated. Our goal is a world without asbestos and without asbestos-related diseases.
What advice do you have for someone who wants to become an advocate in the fight to ban asbestos?
First and foremost, I recommend educating yourself. There is so much information about asbestos that people do not know simply because corporations hid the dangers for years.
The 18th Annual International Asbestos Awareness and Prevention Conference on September 9, 2023, could be a great place to get started in your advocacy.
Centered around the themes of Art, Advocacy, and Academia, both virtual and in-person attendees will be able to see the human impact of asbestos as well as the current efforts in global policy and treatment.
Beyond that, I recommend everyone in this fight to:
- Live courageously.
- Believe in yourself.
- Nurture others.
- Celebrate the milestones — small and large.
Mesothelioma Hope: Fighting Alongside Linda Reinstein
Linda’s work toward an asbestos-free future is beyond valuable. All of us at Mesothelioma Hope thank her for her dedication and vulnerability in sharing her story. It is stories like hers that inspire our team at Mesothelioma Hope to keep providing support and resources for victims and their families.
As Linda said, you are not alone. Whether it’s connecting you with the best mesothelioma doctors or providing free legal help for your asbestos exposure, Mesothelioma Hope is here every step of the way.
We are committed to sharing stories of hope, which is why we’ve compiled a free Mesothelioma Survivors Guide that includes inspiring stories from patients detailing how they found treatment, financial assistance, and emotional support.