An online chronicle of grief Posted Tuesday, February 1, 2005 by arjuna
A young widow pours her sorrows into an online journal, opening a window onto modern mourning

Tuesday, February 01, 2005 By Alana Semuels, Pittsburgh Post-Gazette

Online journal entry by Rich Rust, before his death:

"I think I've probably mentioned several times, if not several hundred times that I have been sick recently. Flu-type stuff. But in addition there have been strange aches and pains, unexplained back and neck aches. I've basically felt like crap for about a month or so.

My doctor thinks I'm nuts. I can see that in his eyes. I had this bizarre chest pain a few weeks ago, that was probably from Madison kicking me. But it was REALLY painful, so I decided he should know about it. Yeah, he didn't think much of it. Ran some tests, yadda yadda yadda, I'm fine."

A life online

Friends and family of Pittsburgh musician Rich Rust could follow his life online. They heard about the antics of his 2-year-old daughter, Madison, about practice sessions with the popular Pittsburgh band Breakup Society, and about the melanoma that was taking over his body although doctors didn't know it at the time.

Even now, anyone can read about how the 32-year old Rust felt sick for weeks, went to his doctor and was told he had a urinary tract infection and got the anti-anthrax drug Cipro. They can read about how he felt so sick he could barely function, how his mother told him he looked green, and how he finally went to the emergency room, where he was told the deadly skin cancer had returned.

His last entry, posted on Dec. 24, 2003, reads, "went to ER and my melanoma has come back. It's now in my liver and my spleen. Merry Christmas! I'll post all the gory details in the journal as soon as I get a chance."

He died Jan. 11, 2004.

Rich's death plunged his wife into the deepest sorrow imaginable. Deni Rust slept for the months after he died, and woke up early one May morning and took herself to the hospital to give birth to the couple's son, Ethan.

But even after her second child's birth, Deni Rust could not go more than a few minutes without breaking down and crying or missing her husband of three years and partner of almost eleven. She had panic attacks, thoughts of suicide and even checked herself into UPMC Western Psychiatric Hospital and Clinic for a night at the urging of her siblings and friends.

Deni Rust, 34, of McCandless, continued her husband's journal after his death, using the Web site he created to immortalize his writings, to establish a guest book where friends and family can share memories, and to post her thoughts as each day passes.

A year later, Deni Rust still struggles to live with her grief. Her Web journal has become part catharsis, part weekly update, part cry for help. She has received e-mails from faraway strangers who offer support, and she believes the journal is, in a way, necessary for her to survive.

Rust's journal is a touching and terrifying window into the age-old process of grieving, but it also is on the forefront of a new trend: online journals in which writers share their illness or personal tragedy, where readers can follow along, sharing every moment, no matter how personal, with complete strangers.

Journal entry by Deni Rust, March 15, 2004, after her release from Western Psych:

"Now, let's remember what helps me to feel better: talking about my feelings! This is a release for me. This is why I keep the journal. I don't have my husband to talk to anymore. I need to rid myself of anger and pain and this is how I choose to do it. It works for me. It comforts me to receive e-mails from people who tell me they read the journals and care about Rich and our family. I need this to get through every day."

Catharsis

Type in "health blog" into the search engine Google and you'll see journals describing people's journeys through anorexia or dealing with HIV, many of which were created in the past year. Philadelphia Inquirer reporter Fawn Vrazio legitimized the genre when she started her "cancer chronicles blog" in November 2004 as part of the newspaper's Web site. She urged her readers to "think of it as a journey into a world that many fear but few understand."

Reading some of these blogs is like rubbernecking at the scene of a car accident -- it's difficult to watch but impossible to turn away.

But with their rising popularity, these journals may become the next big thing, said Amanda Lenhart, a research associate at the Pew Internet & American Life Project. During the recent presidential campaign season, political blogs were widely read as insider scoops. Online journals may serve both as ways for those going through a health crisis to talk about it and to promote awareness about various illnesses and conditions.

Blogging itself -- or posting a journal or opinions online -- is becoming more mainstream: Blog readership went up 58 percent in 2004, according to a Pew survey. More than a quarter of Internet users read blogs, and more than half of blogs are in a diary style.

"People tend to be a bit more confessional on the Internet," Lenhart said, because it's easier to share thoughts with people who are not right in front of you or on the phone with you.

This applies especially to sensitive topics. "There might be times when you want it to be a one-way exchange," Lenhart said. "It's hard to hear people respond to your grief, and in some ways it's easier to talk about things online."

This catharsis is one of the reasons Deni Rust turned to a Web journal. But there were other reasons: she wanted to remember the last few weeks of her husband's life, she was furious with the doctor who seemingly missed the cancer's recurrence. She hated hearing the well-meaning consolations of people who didn't know what to say.

And after weeks and months of these feelings, she wondered if those who were asking about her well-being perhaps were not as concerned as they had been in the raw days after Rich Rust's death.

But most of all, she needed to get her rage, anger and sadness out. "It definitely is therapeutic," Rust said in an interview at her home. "Usually I write when I'm at my darkest moments, and by writing it down and getting it out, it helps."

Keeping a journal is just one therapy recommended for grieving people. Although every person mourns differently, journaling allows people to see how they are progressing, said Jean Haller, who teaches journal workshops and owns the Journey of Life bookstore in Shadyside.

Private journals are more common, Haller says, but she has seen students benefit from journaling or blogging in an online community or Web site. "Writing is a great catharsis for any problem, but especially with grief."

Journal entry by Deni Rust, Jan. 10, 2005, on the eve of the one-year anniversary of her husband's death:

"I'm so afraid and sad and no one can help me. I decided not to seek out any professional therapists because they can't tell me anything I haven't thought on my own or could read in a book. Besides, it's not my mind that is damaged, it's my soul."

Support

Since her husband's death, Deni Rust has had difficulty finding support. With two children to raise, she keeps herself busy, but still depends on a close-knit group of family and friends to cover for her in times of crisis.

Her best friend, Kim, cut Ethan's umbilical cord when he was born, and Rust's parents and friends babysit the kids on the rare occasion that Deni Rust ventures out into the world.

She tried going to a widows support group, but was the youngest person there by a decade. She went to a counseling session recommended by a therapist, but the other participants were there because they had anger management issues or were ordered to the session because of domestic violence; this didn't seem close enough to Rust's own situation.

"I feel alone in my grief," Rust said, "but I know it can't be so."

Young people tend to avoid support groups in general, said Lulu Orr, the executive director of the Good Grief Center for Bereavement in Homestead.

And with no other means of support, it's often difficult for them to find a way to talk about what they're going through. "People can get really tired of hearing about it," she said. "But people that are grieving need to tell their story over and over. The more they talk about it, the more believable it becomes to them."

Thus far, writing works best for Deni Rust. She receives e-mails from people from around the world sharing their own stories of loss or offering advice on how to cope. She is not alone in finding these journals beneficial; one of the country's most popular journaling sites, LiveJournal.com, includes other journals like Deni's.

It helps to share your feelings with people who understand what you're going through, said Carol Young, a widow who helped create YoungWidow.com, an online support group, after the terrorist attacks of Sept. 11, 2001.

"You're feeling all these emotions, and nobody seems to understand you," Young said. "Unless you've been there, you really can't understand."

Journal entry by Deni Rust, May 4, 2004, right before Ethan's birth:

"It is sickening and horrifying how a mole -- a mole -- stole his life. ... Cancer is ugly and devastating in no matter what form it attacks. My friend Kelly's sister April told me the other day that Rich is her hero. She and a friend decided to make an appointment to have their moles checked ... They found acute lymphatic leukemia ... She never would have gone to the doctor if it wasn't for [Rich].

Awareness

It's hard not to read Rich Rust's blog and worry about that mole on your shoulder or that day you went outside without sunscreen. His progress from a happy and busy father to a patient whose illness was overlooked would make even the most hardy reader feel weak.

Rust, who played in many Pittsburgh bands as keyboardist and singer, was diagnosed with melanoma in May 2001. He had two surgeries in California, where he and Deni were then living, to get rid of the cancer, and was seeing an oncologist every few months in Pittsburgh after they moved back here. After the surgeries and new therapies, he hoped he had the cancer beat.

Deni Rust says she still receives e-mails from friends who decided to get a mole checked out after reading his story.

Family and friends have taken care to make sure that neither Rust's sunny personality nor his difficult story are forgotten; already two benefit concerts have been held in his memory, and at the first concert a friend of Rust's released a CD, "The Rich Rust Experience" featuring songs Rust wrote and sang. His wife tentatively talks about holding these concerts annually, and donating the proceeds to a melanoma awareness society.

But Deni Rust's journal is educational as well, as a window into the mind of a grieving widow. She says that the knowledge that others are reading and understanding how tough life can be is one of the things that keeps her writing.

"I have to talk about it -- it's a relief to talk about it," she said in an interview. "I have to let people know that things could be worse ... we all have tragedy in our lives."

Journal entry by Deni Rust, July 12, 2004, on her wedding anniversary:

"Madi always pretends to call her daddy. Usually it is when I pick her up from school and her class is playing outside and we have to walk through the 4-year-old room to leave. She will stop and pick up the toy phones and pretend to call him on each one. I patiently wait for her and try my hardest not to cry. ... In the car the other day she "called" daddy and said, "Hi daddy. Watch you doin'? I want to come to heaven with you, daddy. No, no no, I want to come to heaven with you, daddy." I almost had to pull the car over. Once again my heart broke. I found it so strange that she said, "... no, no, no... " It was almost if he told her she had to stay here with me -- that I need her."

The online journals
You can read Deni Rust's journal at www.richrust.com.