How We Give Back

I’m Linda Reinstein. I’m the co-founder and president of the Asbestos Disease Awareness Organization, known as ADAO. We’re an independent nonprofit dedicated to preventing all asbestos-caused diseases. Alan was my soulmate and my forever one. We had been married for over 20 years, so when I heard a slight persistent cough, I knew something was very different. With a little bit of humor, I said, ‘Alan, you need to go in and get that checked out.’ He came home; he was checked out, but we didn’t have any answers. That was back in 2002. They thought maybe he had TB. Could he have AIDS? They went through a myriad of different tests. There was a pleural effusion on his left lung. The surgeon came out and said, ‘Are you alone?’ I knew enough to know that wasn’t a good sign. He said, ‘I think Alan might have mesothelioma.’ I’d never heard of it and couldn’t pronounce it. Still, using some humor, I guess it’s dark humor by now, I said, ‘But it’s a kind you can treat, right?’ He said, ‘I can treat it, but I can’t cure it,’ and with that, I realized that our lives were going to change. Alan was diagnosed; pathology confirmed mesothelioma. He elected to have an extrapleural pneumonectomy. They removed a left rib, resected and removed his lung. They stripped off his pericardium, the lining around his heart, and they surgically replaced his diaphragm. We called it the shark bite. He was sliced from left to right, all the way around. It was a devastating surgery. I think the anxiety from having your lung removed took Alan quite a while to even adapt. When the cancer came back on Alan’s right lung, it had been almost a three-year battle. He had chemotherapy, and the options were very limited. I’ll remember that moment like it was just yesterday. Emily was then 13, and Alan had actually been hospitalized with what they thought was aspiration pneumonia. Emily and I were heading in one rainy morning in the LA area. Emily, then 13, and I looked at Alan. He was a very different Alan. I tell the story because I want people to understand the devastation that the family and the patient have to endure. Alan had a demand mask on, covering his entire face. As we walked in, his eyes barely opened, but I could see that he was listening. Emily, at 13, tells her dad as we hold his hand, ‘Dad, you won. You’re a champ. You never gave up.’ I’m resting Alan’s fears and telling Alan that we’ll be okay. As I look to the right, the heart monitor begins to flatline. Nobody moved; they were stoic. That was the moment I knew Alan had died when the staff didn’t respond to the heart monitor. Every step that I had to learn, I learned the hard way. Saying goodbye to a father, a friend, a husband — it stinks, and it’s all preventable. I think that part of Alan’s treatment and ultimate death has fueled my fight for 20 years. I don’t want other people to have to go through what I have. I had it tough, and I’m not the only person that’s had it tough. We’ve been working for the last seven years on the Alan Reinstein Ban Asbestos Now Act. It’s named after my husband, but not for Alan; it’s for the hundreds of thousands of Alans. Anybody who has suffered or died from this disease needs to feel part of that bill. The bill would stop imports and use, which is the first step to mitigating this man-made disaster. MesoHero is just a great community event. I love Simmons Hanly Conroy; they are so genuine. After all of these years of working together and knowing the firm, I’ve developed some friendships that make it a really sweet trip out to Alton, Illinois. It’s mixed with old friends, new friends, and always a new discovery. I meet someone who usually teaches me something, and that’s an exciting part. So, MesoHero has been an amazing resource. For one, it raises awareness; you bring a community together, and we talk about our stories so they understand. They can connect the nearly invisible dust to the damages, the impact on our families. Two, we can take home facts and stats and share with others. ADAO’s mission has always been to use education, advocacy, and community to do our work. Three, the funds are remarkable. They help us to put on our annual conference, staff briefings in Washington, DC, and various other things that help us to continue our 20-year mission of preventing exposure to eliminate all asbestos diseases. I’m very honored to do this work for Alan and the hundreds of thousands of Alans. I hope everyone will join our campaign to ban asbestos now.