Stories

It started in October of 1978. I got really, really sick with an upper respiratory virus. No matter what they did, they couldn't treat it. Then I got pneumonia, I got bronchitis; they were throwing antibiotics at me and they weren’t working. I just was sick that whole time. I'll never forget it, April 23rd of 1979, I woke up and was seeing spots. So I went to the doctor, I got there, and they looked in my eyes, and my doctor asked, “Did you drive here?” I said, “Yeah.” And he said, “You need somebody to come and get you.” I asked, “Why?” And he said, “You’ve got to go to the hospital. Both of your retinas are inflamed.”

My mom came and got me and took me up to Bronson Hospital. I was there two-and-a-half hours before they would diagnose me as being the first in the United States with multifocal placoid pigment retinopathy. There was a woman in Spain and a woman in Canada with it. The lady in Spain died of upper respiratory complications but the lady in Canada recovered full eyesight. They told me that I was going to lose my eyesight within 24 hours. I asked if it would come back, and they said they didn’t know. Their other concern was my respiratory health because it was just playing havoc and whatever it was had obviously started in my lungs and moved up.  

I felt like somebody had dumped cold water all over my body. I just couldn't believe what I heard. The ophthalmologist said, “You have to stay within 15 minutes of a hospital at all times.” They started me on massive doses of steroids. In 24 hours and 13 minutes, I went blind. Totally blind. There’s no way you can prepare for that. I mean, if you're born and you never see, you don't know any different.

I spent the next four months going almost every day to Bronson Hospital. They were running me through so many different tests because they didn't know what caused it. They didn't even know what to do. Basically, they were depending on the University of Spain to kind of guide them through. I look back on it all now, and I have to tell you, as scary as it was to go blind, they always say that something good always comes out of something bad.

I was 19 when I went blind, and I am still legally blind. My goal in life was to be a neurosurgeon, and that was all gone. The only doctor I ever got to become is a doctor of naturopathy because everything else requires eyesight, depth perception. So, my dreams, in a way, were taken away from me.

I look back on that and I knew something had to be horribly wrong. How could I be the first in the United States? What was there about me that was different? I asked that question. Now I look at my health history: I think we're up to probably 16 different diagnoses now. I'll be 66 on December 2nd. I know that every year since 1979 it feels like there's a different diagnosis, or sometimes two or three.  

The hardest part of all that is to sit there and they don't know what to do with you. They don't know what to do. They tell me they're sorry. I'm sorry, too. I'm not angry. I'm not angry at what's happened.

When Mary Zack held the first community town hall meeting about local contamination and its health impacts, I didn’t know if I wanted to go. My mom said, “Well, you need to just go and listen.” So, I went with a few friends. I got to meet Mary. When I walked through the door, the energy that was coming out of her was just amazing and I felt like I needed to stay there and listen. When Dr. Eden Wells stood up and asked if there was anybody in the audience that had any rare diseases or disorders, I just sat there. My girlfriend said, “If you don't raise your hand, I'm raising my hand for you.”  

I didn’t want to talk in front of all those people, but I raised my hand anyway. The doctor called on me, and she asked me what my rare disorder was, and I said my eye disease, and I was surprised she even knew what it was. I told them I was really, truly there because Mary had inspired me. She inspired me by showing the passion that she had, not only for what we would all find out later was her story, but for so many others. After the meeting was over, Dr. Mark Johnson from the CDC and others pulled me to the side and said they wanted to talk to me.  

Two-and-a-half weeks later, Dr. Johnson came to my office. He spent two hours with me and asked me to bring any medical records I had. He's reading down through it and he just told me there was no way that anybody could possibly have all of these things if they weren't contaminated. I never even thought about being contaminated living there. I just knew it stunk. Mark said when he sat down with me, “This is cold, but it's true: your days on earth will be cut short.” I felt like somebody kicked me in the stomach.

As a little baby growing up, I lived right over here on the river on Court Street, right next to the police department, so we were getting it in the wind. Then we moved to Plainwell, out on Old 10th Street. Menasha laid the road binder down there that we all walked barefooted on all the time. Then the field across the street from us, we used to all go over there and walk barefooted. It looked like the desert where Menasha had laid their stuff, the ground would crack and this powder dust would come up. We played in it all the time. When it would rain, the water would run down the hill and run down in our front yard, probably to the well.  

After I left home, I moved out to 106th there right beside Menasha in that little teeny tiny brown house where I say my whole world changed. I called Menasha twice because the water looked like Coca-Cola. They promised that they would come and they would test, but they never did. I couldn't figure out why these pipes were coming over from the lagoons onto that parcel that was between our little bitty house and the mother liquor ponds. Well, come to find out, my landlord disclosed to us that Menasha was paying him to dump in that space,  but I didn't know at the time.  

It looked like paper. It looked like wet pulp. So, when it would dry up, we were burning it. We would rake it and burn it. When I told Dr. Johnson from CDC that, he about had a heart attack, but we didn’t know. EGLE later came back and Dan Peabody went through the records and looked at the aerial views. Well, they had been cited for discharging into the river, so then they just would dump it on the property. That would have been 1978. I left there from that house on Christmas Eve of ‘78. 

Some people would say to me like my internist did, “Well, do you think Menasha knew what they were doing?” Well, if you read their response to the EPA, they openly admit they did it. They knew exactly what they were doing. They were trying to save money.

My dad worked at Plainwell Paper as a pipe fitter. He retired from the waste treatment division; they were discharging in the river. My dad went to the union and said, “I'm not doing this anymore. This is going to make people sick.” The union came after him and said, “Bernie, shut up, because we're going to lose our jobs. They're going to shut this place down.” Half of the union turned their back on my dad. In his last year that he was there, he was constantly trying to work with the people that came in with the chemicals to find safer things. And they just said, “Well, Bernie, this is the practice. This is what they do.” But it bothered my dad and he spoke often about it.  

I finally decided I wasn't going to just sit back and shut up. So, I started bugging EGLE to let me come out sampling with them when they were doing soil sampling or water testing. We took pictures because everybody hated EGLE, right? And I thought, well, we'll go see what they do. The part that really surprised me was so many doors we went to; people came with shotguns and told them to get off their property. I could not believe they didn't want to know. And I kept thinking, “What is the matter with these people?” Well, they were afraid that their house would be contaminated and they could never sell their house.  

Property values are just one thing. What of all the lives that are gone? There's only so much you could do to reverse it, and it wouldn't matter even with all the money in the world, whatever dollar sign you want to throw on it. It won't change anything about me. You can't give me back my eyesight. You can't give me back two babies I lost. You can't give me a new liver and a gallbladder and ovaries and everything else.