Sociologist Brene Brown tells us that in order for connection to happen, we have to allow ourselves to be seen, really seen.
It is in this spirit that I speak to you this morning.
Elizabeth DiVita-Raeburn is the younger sister of the Boy in the Plastic Bubble — whose life and battle against a rare and puzzling disease was turned into a network television docudrama about his illness and his resulting imprisonment in a sterile room where he was protected from the dangerous common airborne germs. Where he was viewed through a plastic curtain and could not be touched directly.
Her brother Ted was nine, almost ten years old when things went wrong, very wrong with his health. He had developed monstrous colorful blotches on his legs and thighs that his father, an oncologist, had noticed. Elizabeth, who was three years younger, only six at the time, doesn’t remember the day her brother left the house for the hospital to get those spreading bruises checked out.
Or only one small real memory. She was sitting in a nubby green chair in their living room. Her parents told her that her brother would be in the hospital “for a while.” Something was wrong with him, they explained to her when they returned and he had been left behind.
He was diagnosed with acute Aplastic Anemia. A simple cold could kill him. Catching strep throat would be like being run over by a bus. His school, their house, his sister, all of them were potentially dangerous sources of life threatening microbes. They were off limits, and for how long she was not told, but probably a matter of months.
Though his parents weren’t saying it, though there was hope he might just find his way out of the bubble and resume life at home with his family, the disease was most likely a death sentence. The question was when.
I had just begun the half-day drive back from guest preaching in Oakridge, Tennessee, a year and a half ago when my cellphone buzzed. My husband had taken the wheel after a restless night for me in the motel and a full morning speaking and mingling.
It was my daughter. She had something bad to tell me. She had just gotten a call from her grandmother, my mother, letting her know that my brother Russ was hospitalized in Washington, DC. He had been feeling fluish for a while and not getting any better. The doctors detected jaundice and determined he had cancer, cancer of the pancreas. They would be doing immediate surgery hoping to contain it. That’s all she had been told. When there was more to know my mother would be contacted. No calls please. His wife and their children were dealing with the news and needed their privacy and space.
Pancreatic cancer. In more than fifteen years of ministry, I had sat at the bedside and done the memorial services for relatively young men who had this particularly lethal malignancy. I didn’t have to search the internet to know that the odds of surviving were slim and that the course was swift.
But that was not to be the narrative in my brother’s family. He would have a successful operation. The chemo to follow would clean up any remnants. The deadly cells would be destroyed, and this not yet 60-year-old man — previously fit and vital — with a daughter still in high school and a son almost graduated from college, would still be with them. To go on European hiking vacations, to learn how to swing from trapezes, to play street hockey.
And a wife of 30-plus years whose focus was on staying positive, protecting them and herself from premature sorrow, would make sure that no other possible outcome could be considered.
I remember riding obliviously through that lovely autumnal countryside trying to process what my daughter had told me about his condition, and how it had come to me: second or third or fourth hand, through a cell tower, with nothing I could do but wait for the next communication.
And knowing then in the following weeks and months that his siblings might well be far down the list of those kept informed, called upon or included in any decision making as the cancer ran its life-ending course.
For Elizabeth, as the sibling of a slowly dying boy, life over the next eight and a half years was all about being the lucky well one, until that day when she was 14, returning home from an exchange program in Scotland, when she was called off the airplane, shooed through customs and met, not by her father or mother, but by one of her brother’s doctors. He told her that her brother was sick, sicker rather. His heart could not sustain the number of blood transfusions he had been given to keep him alive this long.
She was not supposed to be there when he died. But she convinced her parents to let her stay overnight. Early that morning, after he stopped breathing and was gone, she was allowed to touch his cold white bare arm for the first time in almost nine years.
At the graveside she wanted to climb in the coffin with him, to not be brother-less. Without him, she believed, she might as well be headless. Despite his long years of illness, his absence from their home, he was, she has written, her geography, her map.
In the midst of all of these feelings, a woman she did not know and whose face she has mercifully forgotten took her arm and whispered: “You’ll have to be very good now… your parents are going through a lot.”
What was expected of her, even more than ever, was normalcy, good behavior, not too much grief. To take care of her parents’ feelings or at the very least not to cause them any additional angst.
My brother Russ had his pancreatic cancer surgery, during which it was discovered that it had aggressively spread to his liver. He underwent chemo. He took experimental trial drugs. He kept working as an ornithologist for the Migratory Bird Institute of the National Zoo. He and his wife took a trip to the Galapagos Islands, seeing familiar and unfamiliar birds. He had his binoculars and his lists of species.
And then he began to fail rapidly. He was given a very prestigious scientific award at a ceremony to which many distinguished researchers came from all over to honor him and his contributions. We — his siblings and other non-immediate family — were not sent invitations.
Word began to come, indirectly as always, that he had to stop working, that he was reacting to the cancer treatments, that he was weak and disoriented. I got hold of him one afternoon when his calls were not being pre-screened. I asked if perhaps I could visit. He said to wait until November — there were too many visitors: graduate students, colleagues, friends stopping by. But he hoped to go on one more birding trip in October. After that, there would be time. A time that never came.
He was in and out of hospice for the next few weeks. And then the call — a voice message on my cellphone that had been left when I was in the air one afternoon traveling from Atlanta to Detroit for meetings. As soon as I landed and turned the phone back on, I could hear my brother Doug’s voice: “I wanted to let you know that Russ passed last night.”
It had already been many hours since he had died. I was sure that calling Russ’s three siblings was far down the list. I sat in an empty gate area on the Delta concourse of a strange airport and wept.
His dying had become death, and the brilliant geographically distant and taciturn brother who I had never really gotten to know, thought one day when we were both less preoccupied and distracted would get to know better, was gone.
There were no plans for a memorial, my sister-in-law let it be known. Maybe later on.
As his sister, his sibling, while everything in me as a pastoral minister wanted to at least schedule a time to collectively grieve this loss and celebrate his life, it was not my place to do so.
I wrote notes to his wife and posted sympathy messages on my niece and nephew’s Facebook pages. I consoled my mother, who at 90 had outlived a child, an unimaginable tragedy.
I was dutiful, I was appropriate, I was immensely sad, I was angry, I was helpless to expect anything else.
Two stories of sisters dealing with the death of a sibling: one in childhood, one in adulthood. Both not unexpected, given the complex nature of and relationships between siblings, and even more telling, their expected roles in families at times like these.
Elizabeth used this experience as the survivor of sibling loss to embark on a thoughtful and powerful journey of reflection and research. What she was grappling with is this: no matter how close or distant in age or geography our siblings are, our relationships with our sisters and brothers are key to understanding ourselves, she proposed in her book The Empty Room. At their best, as Erica Goode has written, sibling relationships — and around 80 percent of Americans have at least one — outlast marriages, survive the death of parents (most of the time), resurface after quarrels that would sink any friendship. They flourish in a thousand incarnations of closeness and distance, she says, warmth, loyalty, and distrust.
And for those of us who have had less than happy and/or more distant relationships with one or more of our siblings, these relationships nonetheless impact how we function and relate to others. We are still connected.
When I asked people to share stories about their siblings, including my own children, the responses were rich and varied. My daughter recalled the time she was so angry at her older brother that she actually threw a fork at him and was glad she missed. Another woman said she has one sister and ever since she was born she has been her best friend, as children sharing everything from toys to clothes to a room and as adults, while they live far from each other, they remain connected with yearly visits, phone calls, and e-mails.
Another telling a mixed story of the big sister who began as her idol, the one who knew everything, the one next to her in a twin bed playing “I’m going to Kentucky” or ” I Spy” until they fell asleep. Reading to her. Teaching her to read. And then a more troubled relationship as they grew up.
In the words of Clara Ortega: “To the outside world, we all grow old. But not to brothers and sisters. We know each other as we always were… we share private family jokes. We remember family feuds and secrets, family griefs and joys. We live outside the touch of time.”
Until, of course, there is a death, or more than one death, of a brother or sister. And then, perplexingly in light of a tendency to describe and believe in worse or easier losses, the loss of a sibling has long been and is still often considered less significant than other losses. That these deaths are somehow not ours to mourn. Leaving young children to feel and handle their own grief, or often enough, as Elizabeth did, freeze it in time. Leaving adult siblings to put their own mourning aside to act in that moment as caretakers for their parents, surviving spouses, and children — handling funeral arrangements, submitting the obituary — or to stay on the sidelines completely.
On a very tangible level, in greeting card stores across the country, Elizabeth found sympathy cards for the loss of a parent, child, grandparent, or pet but not for that of a sibling. Hallmark, the leading producer of bereavement cards, did not create a sibling specific line until the 1980s.
Why is the loss of a sibling most often such an overlooked experience? she asked in her book on understanding sibling loss. Is it because prior to the advent of antibiotics and other health measures, there was a level of mortality among siblings that made it assumed that some would not survive childhood, let alone live to old age, and the shrinking of families has not caught up with the assumption that these deaths simply happen?
After all these centuries, is it still tied up in the biblical myths about siblings: Cain and Abel, Joseph and his brothers — tales of jealousy, ambush, and murder, she wondered? Or the psychotherapeutic theorizing of Sigmund Freud — who had his own family issues of brotherly competition and envy — leading to his assumptions about sibling rivalry that contribute to the devaluing of these relationships and impact of the death of a brother or sister on both children and adults?
Whatever the historical, biblical, or psychological causes, sibling loss, when it goes unrecognized, is what has been called an ambiguous loss. A loss like that felt by immigrants who leave their country of birth, spouses who watch their loved ones become victims of dementia, families with relatives missing in action. While traumatic and life-altering, these have not often been recognized as “real” losses.
An ambiguous loss, with too little to validate it for those left behind — not enough markers, not enough closure. A kind of disenfranchised, not quite as legitimate grief, like that also experienced by ex-spouses, lovers, distant friends, too often by gay partners.
The under-recognized relationships we have with sisters and brothers, in life and then in death.
Before my own brother’s death, I had not known about or noticed National Siblings Day, which is recognized annually in some parts of the country on April 10, honoring the relationships of siblings. While it could be dismissed as yet another effort to commercialize and profit from the fact that many of us have sisters and brothers, this day was actually originally conceived by Claudia Evart to honor her brother and sister, both of whom had died. It was an effort to make her loss unambiguous and her grief at their deaths as legitimate as any other.
Isak Dinison once wrote that, “all sorrows can be borne if they can be put in a story.” We siblings who have experienced this loss have memories to share, stories to tell. We need to make sense of the death: for Elizabeth DeVita Raeburn, she needed to learn all that she could about the anemia condition that killed her brother and how it could have happened to him. I have tried to make any kind of sense of how and why my baby brother — of all of us — was the one to die from such a virulent disease, as inexplicable as it is.
We want to be able to talk about our siblings: what our relationships were like, who they were to us and we to them. Like the story one man told me about being the oldest of five sons, with the next oldest being three years younger. How he had always felt some guilt about not being a better “big brother,” and when he had visited him in hospice, sharing this feeling. His dying brother looked up and said, “what you do mean? You were a good big brother.” It was the last time he saw him and that was the nicest thing anyone had ever said to him.
And this story about two sisters who were never very close due to a difference in age and personalities, who nonetheless began later on in life to share “sister time” for a long weekend every summer. How they learned more about each other over seven years of trips, each trip bringing a stone home to remember them by. Her sister is now dead, but her kitchen window has a container filled with those seven stones and she treasures them.
We need closure and we need to tell our stories, and months after my brother’s death I had a chance to do some of both. A memorial tribute to him was held at the National Zoo, attended by colleagues and friends, his immediate family, my son — his nephew — and two of his siblings.
We had not been mentioned in the obituary published in the Washington Post and in other places as among those surviving him. Nothing about us appeared in a book printed in his memory. We were not asked to be among the formal speakers.
But in the open time at the end of this secular service, we both got up and shared some of our own memories. Doug talked about the car trips they had gone on with our father crisscrossing the state of California finding new birds. How Russ would make up little songs about birds and take on their identities, transforming himself into the Bay-Breasted warbler — speaking in a high falsetto — seee-seee-seee-see.
I talked about how I was not a birder, but had tagged along sometimes, sleeping without a tent on the hard ground, finding somewhere to relieve myself in places where there were no public bathrooms, something my brothers and my father did not seem much concerned about.
How he also loved small furry creatures like chipmunks and hamsters, how they would escape their cages and be found all over the house.
e.e. cumming wrote a romantic poem about carrying his lover’s heart with him. Elizabeth, the sister of the boy in the plastic bubble who died, writes about “carrying our lost siblings forward into our present-day lives. Because they are part of our identities and our half of the relationship does not end with their deaths. We carry them forward because siblings were meant to be fellow travelers in life’s longest relationship. We carry them forward in order for us to go forward with our own lives, whole, unhampered by guilt at having been the ones chosen to survive, we often need them to come too.”
So some of us go on Outward Bound trips because that’s what he did.
Or run a half marathon, because that’s what she did.
Or make a quilt, or learn to knit.
Or this: From a poem I wrote shortly after my brother’s death:
At Panama City Public Access Beach
The last time we talked
(and it was almost never)
After your nap, the pain meds, some hesitation
I told you I had finally purchased a Field Guide to Birds of North America and a
pair of beginner’s binoculars.
The last time we talked
(and I knew to know I would never hear your voice again)
You said go to the ocean
Shore birds are easiest to spot.
Just this Saturday at a fifty degrees cold
On the Red Neck Riviera,
I chased after a tern with my
Pink cellphone camera,
Capturing only the feet hieroglyphics across the
In this way I carried him forward, I carried him in my heart.
May this be so for all those sisters and brothers now gone from us in life.