What a coincidence!

Yesterday I posted on a new study that looked at the impact of losing an infant sibling when you were very young, or even before you were born. I commented that, though understudied, the stories I’d heard from people suggested that this was a huge—huge!—life event.

Then last night, my friend, psychologist Heidi Horsley, PsyD, who also lost a sibling, and who now specializes in grief, called my attention to a really spectacular essay by Michael S. Roth, president of Wesleyan University, in The Wall Street Journal.

Roth was asked to write a response to that age-old college essay question: What person has influenced you most? His response: His older brother, Neil, who died of meningitis at age 5, and who he never met. Roth was born about 16 months after Neil’s death. “Only after I was a father myself did I learn that having another child was the balm prescribed to help heal my parents' pain,” writes Roth.

Like most families, Neil’s death wasn’t talked about much. Typically, Roth didn’t even know what had happened to his brother until he himself was in his twenties. “We were, my parents determined, going to have normal childhoods,” writes Roth. We were not going to grow up in a house of tragedy. Still, at the moments when the old home movies were brought out, or at the memorial services on Yom Kippur, our parents' pain briefly became visible.”

Is a child born after a dead sibling affected by the loss? Here’s Roth on the subject:

“I was to fill the void left by this loss. Or perhaps I was supposed to create a new life for my family by reclaiming their right to happiness. In any case, I felt a special, but certainly unspoken, role. I was to be the hero who would set the family right again. I was to heal the wounds caused by the death of that beautiful little boy in the picture. Yet I was also to remain the trace of those wounds.

At least that's how I felt the influence of my missing, ideal brother. I was to excel in school, but even great grades never felt good enough. One of the most fulfilling moments of my life was winning a valedictorian award named for my brother at our religious school. As a college student at Wesleyan, I turned to the study of philosophy and psychology, always within some kind of historical context. I told my teachers I was interested in how people make sense of the past, especially in how they deal with loss. My first research papers and then my books focus on how we create a past with which we can live. I wrote about Freud and Hegel, about trauma and about revolution, always with attention to how individuals or groups find ways to overcome significant loss without merely forgetting it. The personal and the professional melded together.”

Any question left in your mind?

Losing an infant sibling impacts surviving brothers and sisters

When I was working on my book, The Empty Room, I interviewed a couple of people who either lost siblings very early in that sibling’s life, i.e. in infancy (and were thus very young themselves) or who were born after the death of an infant sibling. I didn’t have enough people to make a huge case, but it was very clear to me that these were very significant losses.

Sadly, however, because these people had been so young at the time, or were born after the death, few had ever acknowledged them as “real” mourners. Result: Disenfranchised grief. They were often confused about what had happened (they’d been too young to remember, or not born yet, and no one had told them the full story), confused about their role in the family, sad, and left with the sense of not being entitled to their feelings of grief.

So I was very interested to see a recent study out of Dartmouth that studied people who lost infant siblings in the Dartmouth-Hitchcock Medical Center NICU. Researchers (who included sibling researcher Joanna Fanos, PhD, a bereft sibling herself) interviewed 13 adults and 1 adolescent who’d either lost an infant sibling in the NICU between 1980 and 1990, or were born after the loss of an infant sibling there.

What they found: The surviving siblings shared a sense of confusion surrounding the memories of the event and high anxiety rates. Those born after the child's death reported a lack of communication within the family about the death (pretty much the norm in sibling loss, sadly) and a sense that their parents had never mourned the loss (also very common).

"Many participants felt that counseling would have helped their parents," said Fanos," in a Dartmouth press release. Medical providers and family members alike should consider psychological counseling to gain insight into the emotional responses to death in the NICU."

I can see why this issue has been over-looked. Parents are distraught (as they always are after the death of a child). Young siblings are often assumed to be incapable of mourning. Children born later never knew the lost one. But the truth is, it’s a real loss, it matters. And what parent would knowingly allow their surviving children to suffer, un-helped?

I imagine just telling parents that surviving children, and children born thereafter, will mourn the loss, would be a start.

(Source: Dartmouth Medical School: The Journal of Pediatrics: May 2009)

New legislation that would help people with aplastic anemia

Aplastic anemia, the disease my brother had, is a rare bone marrow disorder (it strikes 2 out every million people) that hasn’t been on the receiving end of much research funding. But there’s new legislation in the offing that might change that. On February 25, 2009, Representative Doris O. Matsui (D-CA), whose husband, the late Congressman Bob Matsui, died of a bone marrow disorder, introduced H.R. 1230--Bone Marrow Failure Disease Research and Treatment Act of 2009.

The act calls for:

-A national bone marrow disease failure registry, where researchers could combine their data in one place, sharing results and insights.

-Studies to determine what environmental factors can trigger bone marrow failure. Some diseases that cause bone marrow failure are genetic, other cases are thought to be triggered by environmental factors, like radiation and God knows what else. In Ted’s case, the doctors speculated that it could have been the glue Ted used to put model airplanes together, or a box of oranges too liberally sprayed with pesticide. They even autopsied the family parakeet, who died just about when my brother went into the hospital, to see if there was a connection. But there were no answers. My brother’s case, as in 50% of patients diagnosed with aplastic anemia, was deemed “idiopathic”—i.e. unknown, the scientific word for a shrug.

-Minority focused programs that would make information on treatment options and clinical trials available to minority communities. (Frankly, I don’t know if these communities are more prone to some of these diseases, or just under-served with regard to treatment.)

-Grants to help improve diagnosis and quality of care for patients.

I can’t say I’ve been particularly active in organizations designed to make things better for people with aplastic anemia or related diseases. I don’t know why. I know some people get very involved in disease-oriented organizations after they lose someone to that disease. I just never got interested, somehow. But I’d probably feel differently if Ted were still alive, trying to battle the disease. In fact, I’d probably feel outraged at how neglected it’s been, funding-wise.

I’m sure a rare disease doesn’t look like a good research investment to those handing out money, but if you or someone you care about is the one diagnosed, the “rare” label is irrelevant. You’ve been struck by lightning, now what? I hope this legislation gets passed. We can help by encouraging our representatives to sponsor the legislation. Please do it!

New sibling loss memoir

I stumbled on this write-up of a new sibling loss memoir, Invisible Sisters, by Jessica Handler, thanks to Google Alerts....I haven't read it yet, so I can't really weigh in, but it sounds interesting.

A brother sums it up....

I didn't know of Dan Miller, an anchorman on Nashville's WSMV-Channel 4 evening news. I learned about him, and his recent death, from a heart attack, through Google Alert. (My good old Sibling Loss alert at work again.) I was reading a little item about his memorial service, though, and came across a nice graph about the words spoken by Miller's brother, Lynwood.

"Lynwood Miller said losing a sibling is a different type of loss. He said that it was like losing a piece of his childhood, losing someone who knew 'who we were' and 'who we are.'"

I lost my brother young, and never got to enjoy the adult sensation of being known that well by someone. I often grieve not only for the loss of my brother, and all that we were, but for the sibling experiences we never got to have.

A new book for the brothers and sisters of people with Down syndrome

“What causes Down syndrome?”
“Why do people stare at my sister in public?”
“How do you deal with people who use the word ‘retard’?”
“Where will my brother live when he gets older?”

A new book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters (Woodbine House, February 2009), answers these questions and more. Aaccessible to kids as young as 11, the questions in the book are based on brother-and-sister workshops led by its co-authors Brian Skotko, MD, MPP, a physician at Children’s Hospital Boston whose sister has Down syndrome, and Susan Levine, a social worker with Family Resource Associates, Inc. (Shrewsbury, NJ).

The book tries to fill in a long-standing gap: Resources and support services are geared toward parents, not siblings, say Skotko and Levine.“Oftentimes, siblings exist in emotional isolation – they have so many questions about Down syndrome and the feelings they are experiencing toward their brother or sister. They frequently wonder whether it’s okay to feel not only love and joy toward their sibling but also frustration and embarrassment, at times.”

Check it out.

A disappointing response...

I have my Google alert set to send me newspaper articles and mentions of sibling loss. Often, what I get is a pair of banks or companies being described as siblings, i.e. Freddie Mac and Fannie Mae. But recently I got a letter to the expert type of piece that appeared in The Connecticut Post. It touched on an area I’m interested in—and that’s very under-studied: Sibling loss at an older age.

I haven’t done a ton of digging in this area, but what I have done suggests to me that it’s every bit as painful to lose a sibling when you’re older as when you’re younger. (That, “well-they-had-a-long-life” never makes anyone feel any better.) In this case, the “expert” responder sort of got it, but had no idea what to do with it—so she punted and went with a topic she’s comfortable with, i.e. the importance of taking your medication.

I was…disappointed…in her answer.

Here’s what the person wrote in:
I hope that you can help me convince my mom to start taking her pills again. She went through a very traumatic experience with the passing of her sister. My mom and her sister were very close. Clara was nothing like my mother -- very organized, educated and always following the doctor's orders. She was considered healthy with only some blood pressure problems and occasional back pain.

She was taking all of her medications, went to her checkups and got a flu shot every season. She was the one to scold my mom for her casual approach to her failing heart (my mom was diagnosed with a weak heart and congestive heart failure three years ago). To my mom she seemed indestructible. Four weeks ago, my aunt passed away unexpectedly. She had a massive stroke. She was gone within less than a week.

She was not even 76 yet, and my mom is the older one at 80. Now my mom is very upset with doctors and will not take her medications. "What good is it -- Clara did everything they told her to do and look what happened!"I worry that she may be depressed, but I also worry about her heart. Please give some advice on how I can get my mom to believe in doctors again.

Dr. Beata Skudlarska, the geriatrician the paper tagged to answer this person, starts off pretty well. “I am truly sorry for what has happened to your mom, and of course to her sister,” she writes. “The loss of a loved one is always tough; it is even worse if you lose your sibling and a role model.”

Good so far. But then she goes off on a tangent that left me a little incredulous. “Maybe your story can give us a constructive opportunity to explore some important concepts about the reasons we take medications.”

Whaaaat?

She then goes off on the reasons we take medication (i.e. to stay healthy). Okay. First of all, I think most of us know that, and we didn’t pick up this Q&A because we were looking for a lesson in taking our meds. Secondly, after briefly acknowledging the problem—grief, loss, depression—she goes on her own riff, basically ending by saying this person’s mother is bound to see reason eventually and buck up and take her meds.

“Your mom will recover from this,” writes Dr. Skudlarska. “She is resilient.” (Um, how does she know? ) “I am sure she will get better and resume her medications. I am deeply touched by your story.”

I’m sure Skudlarska was touched, but she wasn’t listening, and as a result, I don’t think she helped at all.