S.T.O.P. Victims’ Conference
Madison, WI
July 25-27, 2003

Turning Grief into Action, Nancy Donley

You know, I have been speaking to various audiences for nearly ten years and, still, I never know how to begin. When talking to industry or governmental groups, I generally say that I appreciate their inviting me to be there. But am I happy to be there? Heck no. Even being here with you all, some of you whom I’ve known for years now and have truly come to love as my family, am I happy to be here? No. Because the simple fact of the matter is that I’m here for one reason only…because of tragedy. The very reason most of you are also here today.

I think it’s probably safe for me to say that everyone here would rather be home with their family and friends enjoying a beautiful summer weekend. But for some of us here, our family as we once knew it, is gone; forever shattered. There’s an empty chair at the table, never again to be filled by our loved one. We can never go “home”.

Everyone in this room is a “survivor” of foodborne illness. We have all been impacted by food poisoning in some way, shape or form. Some, like Laura Day, have literally and personally survived the death spiral of food poisoning. Others, like Laurie Girand and others who have survived, alongside their deathly ill children, the horrors of FBI. And still others, like Roni and Barb & Mike and myself, survived the deaths of our children from contaminated food. All of us, family and friends alike, have suffered the pain and horror of foodborne illness, whether experiencing it directly or vicariously in a second or third-hand way.

When my only child, my six-year-old son, Alex died from E. coli poisoning, almost exactly 10 years ago, a part of me died with him. The part of me that “survived” was, and indeed still is, seriously broken. That happens when you have to stand helplessly by as your child suffers a brutal illness and death. It’s every parent’s worst nightmare; a nightmare that has no end.

After Alex’s death, I figured I had two options. One was to get into a fetal position in a corner and “survive” until the end of my time. The other option was to come out swinging against the entities that sent my child to his grave. I chose the latter.

My dear friends and family were my catalyst. They rallied around me wanting somehow to help me through my grief by channeling it into something “therapeutic”. I joined S.T.O.P. and, with their urging, started The Friends of Alex Chapter in Chicago. They kept me busy by organizing an annual “Bike-n-Hike For Life” fundraiser for three years, which if memory serves me correctly, raised approximately $25,000 for S.T.O.P. We also put on a beautiful cocktail party/silent auction affair that raised another $8,000. They encouraged and supported my numerous trips to Washington over the two years of development of the Pathogen Reduction/HACCP Regulation. They saved my life.

S.T.O.P. began because of Roni Rudolph Austin’s friends rallying around her, outraged and horrified and grief-strickened over the death of Lauren Beth, the first fatality in the JITB epidemic. Donna Rosenbaum, S.T.O.P.’s first Executive Director, joined Roni in refusing to accept Lauren’s death as an accident or as a cost of doing business.

I’ve seen the same thing happen to Barb and Mike. Loving and supportive families and friends reaching out to them saying, “What can we do?” and “How can we help?”

I want to tell all of you friends and family out there, “thank you” for sticking with us, for being there for us. You too have witnessed the horrific experience of foodborne illness.

And I don’t want to forget what I refer to as the “saints” out there either. The saints are people like Felicia Nestor, an attorney for the Government Accountability Project, who works with meat inspector whistleblowers who have the guts to come forward and report instances of egregious food safety problems going unchecked by companies and by our own government. Felicia could probably earn 5 or 6 times what she does if she went into the corporate world, but instead practically “volunteers” to do her job because of a moral and ethical mind that won’t allow her to do otherwise.

S.T.O.P.’s board chairperson, Elaine Dodge, is the same thing; a saint. She too is an attorney earning a fraction of what she could in the outside business world but chooses to work in the advocacy sector.

So are Karen Taylor Mitchell and Susan Grooters, both choosing to work in the lousy paying field of advocacy because of inner convictions.

So is our new board member, Saint Mike Scarpone. He came on board with S.T.O.P. because of his belief in our cause; he doesn’t have any personal food safety horror story that compelled him to join up. He did so because he’s a good person; period.

I could go on all day listing the saints, but time prohibits me. But we couldn’t do it without them.

It’s hard to do what we do what we do. Many simply can’t do it; it’s too painful for them to revisit the hell that they went through. I can understand and respect that decision too. But those of us that choose to get active in the movement face an eternal emotional rollercoaster ride. We quite frankly do things that most people look at in awe. We meet Cabinet members and members of Congress. We’ve met with the President of the United States several times. We’re written about and quoted in newspapers and magazines. We’ve been on television and radio.

But I can guarantee you that every one of us who have lost a loved one, or watched a loved one suffer through a foodborne illness, or who has personally experienced food poisoning, would trade all of the heady, “in the spotlight” living to have health back or our family whole once again.

I’d like to end with an article that I wrote for S.T.O.P.’s first newsletter. Frankly, I had forgotten about it, but Karen Taylor Mitchell brought it to my attention when she asked me to make this presentation of “Turning Grief Into Action”. So, rather than re-inventing the wheel, I’ll just read it to you. Because even though I wrote this nearly ten years ago, it’s still the same for me today.

A Rollercoaster Ride Through Washington D.C.

There was the usual last minute flurry to wrap up business, pack and get on the plane. My feelings were ambivalent.

I’d be visiting our country’s seat of government!
I’d be reliving my son’s, Alex, horrible death.

I’d be meeting members of Congress!
I’d be holding my dear friend’s, Roni Rudolph, hand and thinking of her sweet daughter, Lauren, who I’d never have the pleasure of knowing.

I’d meet many “voices” in D.C. that I spoken with but who would now become “faces”!
I’d be meeting Laura Day, a beautiful 19-year-old college student who went through hell during her battle with E. coli, but who, thank God, won.

I’d be seeing people who have become very dear to me—my S.T.O.P. family!
I’d be tearfully pleading with Congress to stop the madness.

I’d be involved in heavy media attention!
I’d be bone weary.

Well, I’m back now. In fact, I’ve been back and forth to D.C. three times in the last month since our February 2nd briefing and the feelings are still ambivalent. There were incredibly high moments, but they were always followed by crashing, crushing lows.

Why do we, the victims families, do this to ourselves? Why do we continually put ourselves in positions where we know the end result will be pain? Where we re-live the horrifying illness and death of our loved one over and over and over again?

Why? Because it’s impossible not to. It’s our gift back to our dead children. It’s our way of reaffirming our tremendous, consuming love for them; our appreciation of their beauty as individuals. It’s our way of telling the unsuspecting public, industry and government that these people mattered. That their deaths are unacceptable. That their deaths were preventable. That we love them and miss them so much and are so outraged by their horrendous deaths that we are fighting on their behalf to see that this doesn’t continue to happen to others.

It’s our act of love to those not personally impacted, on behalf of those who were most impacted; who paid the ultimate price, their lives.

Together we will make a difference; we will get the necessary changes done. Because we won’t give up.

Because we do it for love.