Learning about life while experiencing death

It’s not for everyone, but the support some parents who blog about their sick kids receive from strangers online is a godsend of the Internet age

Renee Ghert-Zand is the health reporter and a feature writer for The Times of Israel.

Seth Galena with his daughter Ayelet in the hospital. (Courtesy of Seth Galena)
Seth Galena with his daughter Ayelet in the hospital. (Courtesy of Seth Galena)

In the week since 8-year-old Samuel Sommer died from leukemia, there have been some 60 blog posts and mainstream media articles written about him.

There has been an outpouring of grief from all corners of the globe. “They told of their tears in Croatia, remembered Sam with origami cranes in Japan and showed solidarity in Israel,” the Chicago Tribune reported.

Most of the people who wrote about Sam did not know him personally. Neither did many of the more than 1,000 people who attended his funeral on December 16. To them, he was “Superman Sam,” the subject of a blog written eloquently and with painful honesty by his mother, Rabbi Phyllis Sommer. On the blog, she has chronicled her family’s journey from Sam’s diagnosis until his death and beyond, as she continues making entries about coping with the loss of her son.

Most recently, she wrote of how “very, very hard” it was for her family to attend Shabbat services at their synagogue only a few days after burying Sam. “I felt uncomfortable, displaced, and out of sorts…like I no longer belong in my own skin.”

Samuel Sommer died from refractory acute myeloid leukemia at age 8. (Courtesy of Phyllis Sommer)
Samuel Sommer died from refractory acute myeloid leukemia at age 8. (Courtesy of Phyllis Sommer)

While the “Superman Sam” blog has reached an extraordinarily large audience, it is by far not the only blog written by parents with a sick child. Since 1997, families have been sharing information about a loved one’s “health event” on websites generated on the Caring Bridge social network. Others have taken to popular blogging sites like WordPress, Blogspot, and Tumblr to post updates. Subsequent sharing of links to these blog entries on social media sites like Facebook and Twitter has served to amplify the messages going out, leading many to contemplate the pros and cons of this broad exposure.

“Why do I care so much about this one kid? Why do I know so much about this one kid?” asks Ken Gordon about Sammy on Kveller. “Because of the Internet. Because of — of all things — social media,” he answers.

While some parents are opting for tight privacy settings on their blogs so that only invited family members and friends can log in, others, like Phyllis Sommer, are choosing to open up to the world about the heart-wrenching ups and downs of watching a child fight a serious — oftentimes, terminal — disease. Going public like this is not for everyone, but for some parents who watch their children suffer, the support they receive from strangers is a godsend of the Internet age.

Ayelet Galena died of a rare bone marrow disease in 2012. (Courtesy of Seth Galena)
Ayelet Galena died of a rare bone marrow disease in 2012. (Courtesy of Seth Galena)

“It was really supportive and helpful. It was touching to feel that we were not alone,” Seth Galena tells The Times of Israel. He and his wife Hindy Poupko Galena shared their journey as their toddler daughter Ayelet fought a rare bone marrow disease, which ultimately claimed her life in early 2012. Thousands of people followed the “Eye on Ayelet” blog and the Ayelet Galena Facebook fan page, checking for daily updates. The blog’s legions of followers were dubbed, “Ayelet Nation.”

“Ayelet Yakira Galena had become something of an Internet sensation,” wrote Gabrielle Birkner in the Forward in February 2012. “So when the Galenas…announced Ayelet’s death, January 31, the news moved quickly through Jewish circles and set off a wave of mourning the world over. The reaction to the blog — and to the news its followers hoped never to hear — is emblematic of the ways that the Internet is redrawing boundaries between public and private, and upending traditional definitions of Jewish community.”

Galena remembers being touched deeply by total strangers reaching out, writing messages to him starting with, “I don’t know you, but…” People were not only expressing sympathy. More importantly to the Galenas, they were taking action by starting prayer groups and signing up with the national bone marrow registry.

In Sammy’s case, tens of rabbis are shaving their heads to raise funds for pediatric cancer research.

“When a person goes through such a horrific experience and they lose control, blogging is a way of having some control.”

Patricia Frumkin, a psychologist in private practice in Silicon Valley, California, has seen her patients with health issues blog about every intimate detail of the ups and downs of their treatment. Whereas she remembers that, in earlier times, people would not even speak to their own extended families about their illness, she confirms that today there is far less of a stigma attached to disease.

“We don’t experience the same shame as we used to,” she explains. “And if there is a lack of shame, then people are more apt to share. Some people find it helpful to not feel alone, to know that other people care.”

According to Frumkin, mental health professionals have been encouraging ill patients to write journals for decades. Originally, it was about writing one’s thoughts down for oneself. “Now we see information sharing exploding online, and for many, this journaling has gone public,” she notes.

“When a person goes through such a horrific experience and they lose control, blogging is a way of having some control. You are sharing your grief, but feel that you are proactive in some way.”

Hindy Poupko Galena and Seth Galena with their daughter Ayelet. (Courtesy of Seth Galena)
Hindy Poupko Galena and Seth Galena with their daughter Ayelet. (Courtesy of Seth Galena)

Galena emphasizes that he and his wife always considered what was appropriate to share and what was not. “It took a bit of balance work. Before we posted, we edited the amount of information we were sharing, especially in darker times,” he says. “We were always in control of what was posted. We were not over-sharing.”

Galena titled a blog post he wrote a few weeks before his daughter’s death, “You Can Be Addicted to a Certain Kind of Sadness.” He was referencing a lyric in the hit song “Somebody that I used to know” by Gotye, but he was also talking about the 60,000 visits to the Eye on Ayelet blog in the preceding month, as well as the 14,000 daily visits that month, as Ayelet’s condition worsened.

“Eye on Ayelet pulled back the veil on what it is like to be the parents of a critically ill child: the tests, the tubes, the fatigue, the need for comic relief, the celebration of small victories,” Birkner wrote. “Ultimately, I don’t think it was sadness that had people hooked. It was hope, a sentiment that buoyed each entry, regardless of how grim the day.”

Frumkin believes that some people are truly inspired by reading these blogs. “I, too, am touched by my patients as I watch them go through the process of living and dying,” she says.

However, despite the inspiring blogs, readers should not look to them as primers on how to handle illness or adversity. “There are no guarantees that they will handle the situation in the same way that the bloggers do,” she warns. “Everyone copes with a crisis in their own way, and it is almost always in the way that they normally cope, only in an exaggerated way.”

“It’s all about what these kids teach us about life.”

Maharat Rachel Kohl Finegold, director of education and spiritual enrichment at Montreal’s Congregation Shaar Hashomayim, wrote upon hearing of Sammy’s death that the lessons she learned from following “Superman Sam” in recent months were not about how to handle crises, but instead about how to consider the mundane moments of life when we and our children are healthy.

“The strength of the Sommer family shone through when, even in the midst of the darkest times, they were celebrating mundane moments — being grateful for their blessings,” she wrote. “Let us open our eyes to the mundane miracles that surround us daily. In Sam’s memory, let us count our blessings.”

Galena shares that he became “semi-obsessed” with the “Superman Sam” blog in the last two months.

“People asked me why I was doing this to myself,” he says. “But I felt very connected. I was really struck by Phyllis Sommer’s honesty and the way she painted a picture, of her raw emotion. It brought me back to feelings that were somewhat dormant, to the feelings of meaning and purpose and drive.”

“It’s all about what these kids teach us about life.”

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