Robb’s Life Chapter 50 – Robb Dussliere’s Funeral and the Final Episode of Robb’s Life

The last video shot during our year-long series was a slow zoom in to Robb’s name on the headstone.

Robb Dussliere’s funeral was held on April 23, 1996. A week or so before he died, I was at home, knowing I would have to shoot this story, and suddenly I envisioned a slow zoom in to Robb’s name on the Dussliere headstone. It would be the last piece of video I would shoot, and then I would dissolve to a backward look at his life until his baby pictures.

I sat at my kitchen table and cried my eyes out, knowing that this would be the final shot after our year together. It broke my heart.

The most memorable part of the funeral service was when Jacob, Robb’s nephew, says he has the movie “Batman Forever.” The other kids laugh because it is such an inappropriate comment considering the circumstances, but such an honest comment from a child who doesn’t really understand what is happening. When I said, “I’ll bet Uncle Robb liked that movie,” (past tense) Jacob replied, “He does.” It is so poignant, because he doesn’t realize Robb is gone. Robb would have seen the humor in it.

Father Levitt at the graveside service.

After the graveside service, on a beautiful spring day, I waited until everyone left, reluctantly walking to their cars and slowly driving out of St. Mary’s Cemetery in East Moline. I don’t think anyone wanted to say goodbye to Robb.

I sat the camera in the grass, kneeled behind it, and as I zoomed slowly in on Robb’s name, the tears flowed. The pressure in my face was tremendous as I tried to keep from crying out loud. Later, when I got back to the editing room and was reviewing the video from the service, I got to this shot and I could hear myself crying on the video, picked up by the natural sound microphone.

One of the saddest days of my life. I used part of the final interview with Robb in this last piece, asking him how he wanted to be remembered. I am so happy he is still remembered, and I know he would be happy, too. Thank you all for watching and honoring this fine young man with me. He would be 54 now, probably still making us laugh instead of cry.

This was the last official story in the Robb’s Life series on WHBF-TV.

Robb Dussliere Obituary – April 21 1996

Robb’s Life Chapter 49 – Robb Dussliere’s Obituary on WHBF-TV April 20 1996

The day after Robb Dussliere passed away was a Saturday. I went to the station and began planning Robb’s obituary, which would make up most of the first segment of the news that evening.

I went to Robb’s parents’ home to interview his dad, Lorney. I called Beth Wehrman, the executive director of the AIDS Project Quad Cities, and asked her to come to the station for a live interview on the air.

Then I spent the afternoon editing an obituary feature that would maintain the characteristics of the series — no reporter voice.

This is the segment that was broadcast on WHBF-TV on Saturday, April 20, 1996, with Steve Smith anchoring.

You can donate to the DeLaCerda House and help support homeless people who have HIV and AIDS. It was Robb’s favorite charity during the final months of his life. If you can donate, please go to www.delacerdahouseinc.org and click on the “Donate” button at the top of the page.

Robb’s Life Chapter 48 -The Day Robb Dussliere Died

Robb’s mom, Hattie, checking his temperature as he sleeps during his final two weeks of life.

I talked recently with Kevin, Robb’s partner who was with him during the year we broadcast “Robb’s Life.” We kept Kevin’s identity a secret because he was military and because his parents were opposed to the fact that he was gay. They still live near the Quad Cities and are still not supportive of their son, so I am still referring to Kevin only by his first name.

Kevin remembers the last couple of weeks as very difficult. Robb had very little strength.

“He was in and out of consciousness, and during the last two or three days he wasn’t lucid,” Kevin remembers.

The night before Robb died, suddenly he sat up in bed and began screaming Kevin’s name. Someone else was sitting up with him at the time.

Kevin rushed into the room. Robb was emotional but he didn’t say anything else. He just kept repeating Kevin’s name.

“We put him back down and got him comfortable again,” Kevin says.

Robb always had the belief that someone who is dying can hang on until given the permission to leave. That night, Kevin gave him permission.

“I started saying that it’s going to be okay,” Kevin says. “You can go.”

According to Robb’s father, the next morning, April 19, 1996, Robb talked with Dr. Katz on the phone and told him that he was ready to go.

“Well, Robb, then why don’t you go?” replied Dr. Katz.

That evening, Kevin and Robb’s parents were in the room with him. He did not want the indignity of wearing a diaper. He had commented to Kevin more than once, “I’d rather die than wear a diaper.”

“He never lost control of his bowels until the last night,” Kevin remembers. Kevin and Robb’s parents were in the room with him when, after dreading it for so long, Robb lost control.

“We started to clean him up and change him,” Kevin says. “We could tell it was happening. I held his hand and he passed away.”

Despite the horror of the moment, and the deep sadness, Kevin told Lorney and Hattie, “He said he would rather die than wear a diaper and he proved he was right.”

They all laughed.

I got the call from the family in the evening. I have forgotten who called, it was such a shock. I was told that I could bring my camcorder if I wanted, but the thought horrified me. We had told Robb’s story. Videotaping him at this point would be an invasion of privacy, in my opinion. Robb always trusted me to know what went too far. I felt protective now.

Within an hour, I was at Robb’s home in Rock Island. The door opened and I entered his living room, where the family was sitting around the bed and in chairs around the room. Robb was still in the same position in which he died, with his mouth open.

I must be squeamish. I did not want to see him that way. The image has haunted me. I stayed for a while, talking with the family, then went home, still stunned.

Almost a year to the day after we started shooting the series, it was over. How could it end so soon? It just didn’t seem right. After gearing up each week for another outing and another story, I never really thought the end would arrive. It left me with an empty feeling.

There would be one more story to shoot. Robb’s funeral.

Robb’s Life Chapter 47 – My Last Interview with Robb Dussliere

Robb smiles at me for the last time as we prepare for his final interview in early April 1996.

The last time I talked with Robb Dussliere was during the first week of April 1996, one year after we met at the AIDS Project office, where he and Beth Wehrman described the series they wanted to do about a man living with AIDS.

We had just found out that we had won Associated Press awards in both Iowa and Illinois for “Robb’s Life,” the episodes that ran during 1995. The series won First Place in both Iowa and Illinois. In Iowa, the award was for Documentary; in Illinois, it was for Continuing Series. The importance of this series was not lost on other journalists. For the Midwest, it was ground-breaking.

Robb got out of his death bed and walked very slowly to the couch. He appeared to be near the end, but when we started the interview, he looked up at me before my first question and mustered the best smile he could manage. That smile has burned in my memory for 20 years.

At the start of the interview, he said that his brother John had come into town for a visit, John’s last visit until summer.

“I might still be here this summer,” Robb said, but it was clear that was not the case. In fact, as I saw how little light was left in his eyes, how sluggish he appeared and how weak his voice was, I realized with a bit of alarm it was time to ask my final questions.

Robb described his brother’s visit as emotional, and said for the first time, he had gotten scared. He was feeling sensations in his body that he had not felt before, apparently the sensations of a body shutting down.

We had aired a tribute to his father, Lorney, and I was planning a similar tribute to Hattie, his mom. I asked him to talk about her, and he had beautiful things to say.

“I wouldn’t trade her for anybody else  in the world,” he said. “She has always been there when I’ve needed her, and I know it will continue to be that way all the way up till the end.”

A couple of times during the interview, Robb lost track of what he was saying. He sat, his head down, admitting that he couldn’t think of the right word. This had never happened before.

Finally, I asked him how he wanted to be remembered. His answer will be in the final story that aired after his funeral on April 23rd.

At the end of the interview, the people who were in the house at the time left the room to give us a moment of privacy. I could feel my emotions welling up inside. I shut the camera off and looked him in the eyes.

After all the stories we had done together during the past 12 months, it was very difficult to believe that it was ending. All along, we knew that it would end with his death, but I had been in denial, partly through ignorance, and partly because I wanted him to survive. Now, we were both facing reality, and my heart felt as if I was losing someone very dear to me.

“Robb, I just want to thank you for everything,” I said as I began to cry.

It wasn’t very professional for a reporter to cry. Screw it, I thought. I don’t care.

He was remarkably calm. “Thank you, Ken,” he said.

“I’ve been struggling with the thought that your death could boost my career,” I said, referring to the awards.

Robb shook his head.

“Go for it,” he said. “I’m behind you 100 percent.”

I was barely able to get the next words out through the tears.

“I also want to tell you that I love you.”

“I love you, too,” he replied.

I don’t remember the rest of the conversation. He was tired and the interview had taken a toll. I gave Robb the warmest hug I could before packing up my gear.

“I’ll see you soon,” I said.

“Okay,” he replied.

It was the last time I saw him awake.

Robb and I did a live remote on WHBF-TV in July 1995, just three months after the beginning of the series.

In the years that have passed, Robb has been part of me. He trusted me. This blog, and my efforts to keep his legacy alive and raise funds for the DeLaCerda House, are my way of continuing to earn that trust. I am not a religious man. I don’t believe in life after death. But I am still alive, and while I am, I want to know that if Robb were aware of these efforts, he would smile and realize that his trust had been well-placed.

Robb’s story, for me, had been about more than just HIV and AIDS. I had only been aware of AIDS for 10 or 12 years. Homophobia had been part of my Kentucky-fried, stiff-wristed, macho-posturing heritage since the day I was born.

In the year that I had known Robb, he had taken me on a quiet journey of enlightenment. It is easy to fear and dislike people you don’t know. Education and understanding are powerful tools for sweeping away ignorance and prejudice.

I was not Robb’s first choice to do the series. WHBF-TV was not the first-place station in town. It was in dead last place. I am very happy that the first-place station turned him down. April 1995 to April 1996 had been quite a lesson for a Southern boy who had grown up referring to gay men as “queers” and “fags.”

When I first met Robb a year earlier, he was one of the first queers I had ever met who admitted it.

One year later, after observing his courage, his humor and his intelligence, after the countless hours I had laughed with him in person and while editing the features, after the tears I had shed in the editing booth and while watching the series at home, the truth of what had happened was clear as I said goodbye.

Robb Dussliere had become the first gay man I ever loved.

Robb’s Life Chapter 46 – A Tribute to Hattie Dussliere

The last time I visited Robb before he passed away, he was sleeping and his mom, Hattie, was watching over him. As his body shut down, Robb slept more.

A week or so earlier, I had interviewed Robb for the last time, because it was obvious that he could go at any time, an observation that he made, too. During the interview, I asked him to talk about his mom.

Having lost a child 16 years earlier, I had an idea of the pain Hattie and Lorney were experiencing, but my daughter died at only 6 weeks old. I can’t imagine how I would have recovered if 34 years of memories were in my head.

This is the story that aired on April 15, 1996 — a tribute to a wonderful mom, looking at her dying son through the eyes of love.

Robb’s Life Chapter 45 – A Tribute to Lawrence “Lorney” Dussliere

Lawrence (“Lorney”) Dussliere holding his son’s hand while Robb sleeps in the hospital.

Robb was dying in March and early April, 1996. Throughout the year we had been documenting Robb’s life, his parents had been by his side every step of the way.

You might think that this is no big deal. They are the parents. They should be supportive, right?

Unfortunately, many parents abandon their children when HIV and AIDS enter the picture. This is one of the reason Robb worked so hard on the DeLaCerda House during the final months of his life — to help support homeless people living with HIV and AIDS, people who were often homeless because they had lost jobs and had no one left who was willing to take them in.

Lorney and Hattie Dussliere demonstrated the best of human nature during a personal crisis; the protective qualities of parents who understand that love is unconditional.

Robb’s favorite performer was Elton John. As Robb approached death, I began looking for a way to pay tribute to his parents. I listened a lot to Elton John’s great album, “The One.” On that album is “The Last Song.” One day, as I was listening to the CD at home, the lyrics of “The Last Song” became very clear. It was about the love of a father for his AIDS-stricken son.

A father in pain, still able to muster a smile, demonstrating incredible love and support to a son. 

This video instantly sprang into my mind, almost fully created. I sat down in my home and cried like a baby. I was doing that more and more over Robb, it seemed.

Even 20 years later, as this blog post is being written, parents still abandon their HIV-positive children. This tribute to Lorney Dussliere is still relevant.

After Robb passed away, Elton John came to perform a concert in the Quad Cities. Lorney and Hattie managed to get a VHS tape of “Robb’s Life” to him. During the concert, as they sat in the crowd, Elton John performed “The Last Song” and dedicated it to the Dussliere family.

I invite you to stop for a moment, listen to the lyrics, and you will understand why Robb’s parents have my undying respect and love.

If you would like to help keep Robb’s legacy alive, please donate — even a few dollars — to the DeLaCerda House. Go to their web page and click on the “Donate” button at the top of the screen.

Robb’s Life Chapter 44 – Three Brothers Meet One Last Time

Three brothers in happier times — Robb is on the right.

By the first of April 1996, Robb’s family realized he could go at any time. His brother John flew in for a final visit. I went to Robb’s house one afternoon when John and Rich were there telling war stories of their childhood, each of them trying to deal with the knowledge that the end was near.

I took John and Rich to the backyard to do interviews about their feelings at this moment. They opened up in ways that would be educational to viewers in 1996, when anti-gay sentiments were high and the fear of AIDS was still strong.

Robb had been experiencing “strange feelings.” It was clear that his body was shutting down. By the time I interviewed him for this story, a couple of days later, his voice was growing weak. You can hear it in his comments near the end of the story.

Robb’s story changed a lot of hearts in the Quad Cities. During this year, people occasionally stopped him when they recognized him in public. One man, who he ran into at the grocery store, stuck his hand out to shake Robb’s hand. Robb was moved by the kindness.

It is so easy someone you don’t know. By putting his life on television, Robb helped people understand that those with AIDS and those who are gay are just as good, just as funny, just as brave as anyone.

The comments Robb makes in this story are from the last interview I did with him. He had a little more than two weeks to live, and I would not see him again when he was awake.

You can donate to the DeLaCerda House and help support homeless people who have HIV and AIDS. It was Robb’s favorite charity during the final months of his life. If you can donate, please go to www.delacerdahouseinc.org and click on the “Donate” button at the top of the page.

Robb’s Life Chapter 43 – The Secret about Robb We Kept from the Public

Robb’s partner, Kevin, gives him a foot massage as the nurse prepares a morphine drip during Robb’s final weeks.

Robb Dussliere had a secret during the year that I documented his life with AIDS. I helped him keep the secret from the public.

Robb had a partner named Kevin. In our first meetings, as we discussed the documentary of his life, Robb asked me to keep Kevin’s name and image out of the series.

Kevin was in the Army National Guard, and in those days he could be discharged if he were “outed” as gay. Another factor was his family. Kevin’s parents did not accept his sexual orientation. He believed that they would not only feel anger but also humiliation if he were publicly identified, and he wanted to save them — and himself — from that sort of backlash.

As a journalist, this posed a dilemma, but I did not wrestle with it for long. The main story, after all, was Robb’s life with AIDS and his mission to educate the community on how to avoid the disease. In 1995, the concept of two men living together and being partners triggered a lot of anger. Kevin’s role in Robb’s life could distract from the more important message.

Last year, when this blog was launched to commemorate the 20th anniversary of Robb’s Life, I contacted Kevin, and we decided that for his parents’ sake, we would continue to conceal his complete identity and use only his first name.

Nurse Pam explains the morphine delivery system to Kevin.

Through most of the series, Kevin was not around during the video shoots. He showed up in one story when Robb was renovating the shelter for homeless AIDS clients, but I shot Kevin from behind so his face was not visible. As Robb was dying (watch the video on Chapter 42 of this blog), you can see Kevin’s hand massaging Robb’s foot as Robb lay in pain, waiting for morphine. In that story, the nurse, Pam, is showing Kevin how to set the machine for Robb’s morphine drip.

I only saw Kevin once after Robb’s funeral, the day they dedicated “Robb’s House,” part of the DeLaCerda House. But during the past 20 years, I have wondered what was happening behind the scenes, if the brave young man on TV was going through emotional agony when the camera wasn’t rolling. Perhaps I wanted to be reassured that Robb had been as brave off-camera as he was when I was around. Kevin could answer those questions.

Kevin said he and Robb met at a euchre tournament hosted by JR’s, a local night club that catered to gays.

“We chatted a couple of times and he asked me out,” Kevin recalled. “I was 26.”

Robb told him on the first date that he was HIV-positive.

“I had just come out,” Kevin said. “He was the first person I had dated. I was scared. Here was a very nice guy, I’m looking for love, but he’s HIV-positive.”

Robb had been an executive in the company that owns the Village Inn restaurants. When the company discovered Robb was HIV-positive he was let go. Robb filed a lawsuit against the company that was settled out of court. By the time he met Kevin, Robb was living on welfare.

Despite the health issue, they embarked on a relationship that Kevin describes as “eye-opening,” a relationship that he credits with changing him forever.

“It may have saved my life,” Kevin said. “I learned so much through Robb. He helped me grow; helped me take charge of my own life.”

By the time they met, Robb had already lived for a decade with HIV. He had passed through the fear and anger, and he had seen what AIDS did to two of his previous partners. Robb had cared for them. He was well aware of the road ahead.

“When we met, Robb felt he was living on borrowed time already,” Kevin said. “He had such a positive outlook. He wasn’t scared. He was always able to give that sense of humor, and made others relax and get through it.”

Kevin admits that Robb’s humor may have been a coping mechanism, but it was not an act.

“His overall mood was never scared or down or worried,” Kevin said. “He was very straight-forward.”

I was very glad to hear Kevin say this. In the 20 years since Robb died, I have considered him the bravest person I ever met. His calm demeanor as his life was ending may have had an impact on me when I lost a lung and was near death in 2009. Since that time, I have lived with a shortened life expectancy, and Robb’s image has come to mind countless times. I have found that I, too, have a calmness about the possibility of dying, and when I have revisited the video of Robb discussing his illness in such an honest, fearless way, the feeling of a bond has grown stronger. So it was true — the Robb I saw through my camera lens was the real person.

Still, as Kevin and I both got a little emotional during our recent phone conversation, I felt bad for bringing up the memories and emotions and making him relive it. He put my mind at ease.

“I like talking about Robb,” Kevin said. “He was a happy, positive person. That’s my memory.”

Kevin remained HIV-negative. In the next couple of weeks, you will read a few more of his comments about Robb’s final days, but I am happy to report that Kevin found love again and is living very happily in Texas.

I admitted to Kevin that I felt some guilt during the past two decades. During the taping of Robb’s Life, I was a single parent with two teenage daughters living at home, working as news director of a TV station, doing Robb’s Life as an “extra” activity beyond my normal work hours, and trying to maintain a social life, dating a woman I had become engaged to in February 1996. I never took the time to take Robb and Kevin out to dinner or to invite them to my house. Part of my reasoning at the time, besides being so busy, was the notion that as a journalist, even though I was emotionally involved in Robb’s story, I still needed to keep a slight bit of objectivity and detached professionalism. I felt that the rules of journalism dictated that I shouldn’t get too close.

By the time I realized Robb’s life was ending, and the opportunity to really be his friend was slipping away, Robb became too sick to leave the house. It left me with a regret that I have felt all these years.

Kevin responded to this admission by giving me a precious gift that left me in tears.

“It never came up,” he said. “Robb thought the world of you.”

Our conversation ended with Kevin saying that Robb embodied the old expression, “To know him is to love him.”

“Everyone who met him loved him,” Kevin said. “I was lucky enough to be the one he loved back. He was the most amazing person I have ever known — the most giving, most positive person I have ever known.”

Robb’s Life Chapter 42 — Managing Pain and Making Funeral Plans

Twenty years ago this week, Robb was running out of time, in terrible pain, and wanting to tie up a few loose ends while he was able to do so. Father Donald Levitt, who was at St. Mary’s in East Moline at the time, came to Robb’s house to plan the funeral service.

Robb was now in a hospital bed that replaced his couch in the living room.

At this same time, his pain grew intense, so the nurse showed how to use the system that delivered morphine, which boosted his spirits dramatically.

My favorite part of this episode has always been when Robb smiled at the camera and said, “Morphine is my friend.” It was great to see him smile after being in terrible pain.

Robb had not eaten anything in a week. Morphine was managing the pain. He was settling in for the end.

All this time, since April 1995, I had helped Robb keep a secret. It is a request he made as we began shooting this series. There are a couple of visual hints in this story if you are paying attention. In a couple of days, I will reveal the part of Robb’s Life that we kept from the public.

You can help support Robb’s legacy and help homeless HIV and AIDS clients in the Quad Cities by donating to the DeLaCerda House. Just go to their website at www.delacerdahouseinc.org and click on the “Donate” button at the top of the page.