When a loved one becomes the story

Gary Reed • The Sacramento Bee /

My brother maneuvers his elect-ric wheelchair to the edge of his wife's hospice bed, takes her hand, struggles to lean forward and lays his forehead on her hand. He sobs loudly. A dozen of Wayne and Diana's close friends and family fall silent. I lose it, and tears flow.

When watching someone close to you die, emotions run the gamut. Crying, laughing, praying, joking.

We're told it won't be much longer, but time passes. We tell stories of Diana's life, her antics. Laughs fill the room. Someone urges her to let go; it's OK, let go. At the foot of the bed, her stepmother prays. After looking out the window at a blue sky with few clouds, a friend tells Diana it's a beautiful day to fly. More time passes, more stories recounted. We laugh and then are silent.

As an editor at The Sacramento Bee and other newspapers, I've helped reporters write stories about high-profile family tragedies. This month, my family became one of those narratives. After suffering a stroke that left her in a coma for a week, my sister-in-law Diana died from a rare form of fungal meningitis caused by a tainted epidural steroid injection she received at a Nashville pain clinic.

Diana was one of the first of 25 people to die in a nationwide meningitis outbreak that has so far sickened more than 330 and scared 14,000 who received the shots in 18 states.

When I flew to Nashville four weeks ago, I had no idea my family would be cast into the forefront of this breaking national news story — one that would bring reporters to Wayne's front door, television cameras outside Diana's memorial service, and interview requests from The New York Times, the Wall Street Journal, CNN, NBC News, the local Nashville media and others.

I got on a plane after being told Diana wasn't expected to live but a day or two. She had been in the hospital for what doctors said was either viral or bacterial meningitis and was expected to go home in a few days. The news that she had 24 to 48 hours to live was hard to comprehend. How could that be? Diana was healthy, so full of life and energy. What would happen to Wayne, who has been in a wheelchair for the last six years? Diana was his primary caregiver.

For nearly two weeks, friends took turns sitting at Diana's bedside every day, every night — people who for years have been part of an incredible support group for Diana and for Wayne, my older brother, who has lived for more than 20 years with a rare form of Lou Gehrig's disease, the same kind that afflicts physicist and author Stephen Hawking.

For me it became a surreal two weeks, juggling grief and the loss of my sister-in-law with the national media attention. I had the urge to talk with reporters but also to preserve the privacy of family and close friends when they were most vulnerable. It was the most emotional and heartbreaking two weeks I have ever experienced. But I also wanted to get the story out.

The day after Diana died, one of her friends posted a blog item and her death was mentioned on a Facebook page. With that public acknowledgment, a face was given to the story of the meningitis outbreak, and the media came calling.

While trying to find quiet moments to grieve, friends and family looked to me for help on how to deal with the media attention. I was sitting outside, alone, when someone rushed up and said a TV crew was knocking on the front door. “Would you go talk to them?”

It was too early to talk publicly. Diana's brother Bob and I told them to give the family a little time. We would be willing to talk after the memorial service. After dealing with the television crew, someone handed me a piece of paper with the name and phone number of a reporter from the Associated Press, who had come to the side door. Each day, more and more requests for interviews came. They would have to wait.

Newspaper and television stories were cobbled together quickly from interviews with friends and associates over the next few days. We watched the TV news as photos of Diana and Wayne filled the screen. I watched Wayne as he listened and saw the sadness in his face. I touched his shoulder; I cried some more. We all did.

Some early news reports were not quite accurate. While talking with the pathologists who would perform the autopsy, they complained that the media weren't getting the facts straight. Family and friends who gathered around the TV news at night said the same thing.

I tried to explain that it was a breaking story and reporters were trying to piece it together. The reporters were getting the big picture correct, but they were missing some nuances. I wanted the media to get it right, precisely right. So, a couple of attorneys and I went on background with a local newspaper reporter to clear up a few details about whether Diana was positively diagnosed with fungal meningitis and how doctors said they were making that determination.

News of the outbreak continued to unfold. More deaths were linked to fungal meningitis. The pain clinic in Nashville closed. The Centers for Disease Control and Prevention took over the medical investigation. A federal criminal investigation was launched. The tainted epidurals were traced to a compounding pharmacy in Massachusetts that has been shut down and found to have had shoddy sterilization practices.

That's the news, but it's the people in the news who bring a story home. In this case it was too close to home — for people in Nashville; in Chicago and New York, where many of Diana's relatives live; and in Virginia, where Wayne and I grew up.

Diana and Wayne touched the lives of many people, through friends, through their two sons, through church and through an inner-city center for at-risk children in Nashville that bears Wayne's name. About 1,000 people attended the memorial service for Diana. For two hours, I met many of them in a reception line wanting to express their sorrow. Minutes before the service began, the line still stretched up the aisle of the church, out the doors and down the hallway.

Days after the memorial service, Bob and I walked their dog, Sherman, up a hill to a nearby observatory, the route Diana always took. Wanting to get a look at the telescope inside, I checked to see if the door was open; it was locked. A man appeared and said the observatory was closed. As we walked away, a woman rushed out the door and wanted to talk.

With tears in her eyes she spoke of seeing Diana daily, walking Sherman, a beagle-hound mix. When she saw Bob and me walking Sherman the week before, she thought something had happened to Wayne and was shocked to learn later that it was Diana who had died. She invited us in for a personal tour, Sherman included.

During my time in Nashville I was continuously amazed and spiritually inspired by the outpouring of goodwill, friendship and love shown for Wayne and Diana. People streamed through the hospital to visit Diana. More people lingered in the waiting room downstairs. At their home, the scene was similar. People we didn't know left food in the refrigerator in their garage. Others stopped by to talk, to offer condolences and hugs.

A core group of friends from the Otter Creek Church of Christ in Brentwood, Tenn., helped Diana and Wayne over the years as he was weakened by amyotrophic lateral sclerosis. Not only was Diana his caretaker who also helped him with work, she was the voice of his business as he sometimes struggled to talk. When she needed a break, a friend was always there for her: Pat, Russ, Jeff, Jerry, Tony, Marlene, Matt, Ashley, Jennifer and others.

For many years, I couldn't imagine how Wayne coped with such a debilitating disease. He liked to play basketball and softball, and we were very competitive. But I never heard him complain about how unfair life can be. I didn't know where he found the inner strength or the faith until I witnessed the support from his friends over those few weeks. I should be so lucky.

Wayne's view of life was simply stated in an interview with a New York Times reporter a week after Diana's death.

“I am blessed,” he said.