Facebook Posts Photo of My Sister on her Deathbed – And Forces Me to Grieve

Last Friday, Facebook apologized to a grieving father for posting a “Year in Review” on his feed that featured his dead daughter.

Facebook’s “Year on Review” on my brother’s feed.

On Saturday, they posted this photo on my brother’s feed:

It’s a photo of our sister, Gabriela, agonizing on her death bed. She died later that day.

gabibebeGabriela got sick when she was 9 months old.  She got síndrome urémico hemolítico (hemolytic-uremic syndrome– HUS). I was almost four when this happened and I don’t remember ever not knowing those words. I didn’t know their meaning, of course, because at the time nobody did.  A syndrome, I was told, is a set of symptoms that go together without a known cause.  Now we know that HUS is most often caused by e-coli or another bacterial infection.  Not that it mattered, what mattered was that Gabriela got sick.

Ironically enough, I have rather good memories of the three months I spent living with aunt Gladys and Granny while Gabriela was at the hospital.  My aunt and grandmother doted on me, and I enjoyed the visits to the hospital.  The old, immense Hospital de Niños building was located in front of the Parque Saavedra, a huge park with a lake and plenty of green space.  Later, in fifth grade, I would come back here with my class to do a “study” of its ecosystem.  After every visit my aunt would buy me an ice cream bar.  Back then children were mostly put in large wards.  It was probably for that reason that, upon noticing that Gabriela was sick, my parents had taken her to the private Clínica del Niño.  The doctors there didn’t know what to do with her.  I’ve heard the story thousands of times: they kept filling her with serum while she couldn’t urinate until my father, worried, picked her up and took her against medical advice and without having her discharged, absconding with her to the public Hospital de Niños, where they saved her life.  HUS, you see, is a disease of poor children, the Clínica doctors hadn’t seen it before.  It was rare and worrisome enough, however, that my mother and Gabriela got the only single private room in the hospital.  Some years later, it’d be occupied by my cousin Fernando. Those memories are not in the least bittersweet.

I still remember, as well, the names of the doctors who saved her life back then and kept her alive afterwards: Silver and Rentería.  Their names would be replaced by others a few years later.   While Gabriela survived HUS, her kidneys were permanently damaged. By the age of six, they were giving out on her.

The three of us celebrating a doll's birthday, c. 1978?
The three of us celebrating a doll’s birthday, c. 1978?

The CEMIC.  The Center for Medical Education and Clinical Investigations in the posh Palermo Chico neighborhood of Buenos Aires.  It became Gabriela’s home-away-from-home from the moment my parents found out about the possibility of a kidney transplant.  There were so many tests; my father had a different blood type; my brother and I were too young; my mother’s kidney was not fully compatible.  A German drug could work, perhaps, to bring down her immune system and prevent it from rejecting the kidney.  Working with the insurance companies to get them to import it and pay for it.  Getting Gabriela to gain weight so she could withstand the operation; getting my mother to lose weight to make it easier to take out her kidney.  My vacaciones the invierno, winter break, that year were spent in a nice apartment close to the calle Florida, in Buenos Aires.  It was owned by tío Héctor, one of my father’s college friends.  Mamá and Gabriela were in the hospital, papá working and visiting them, I was pretty much on my own.   I strolled the calle Florida, browsed at the toy stores and Harrods, ate the delicious pear jam that tío Héctor’s cousin was working to distribute. I visited Gabriela at the hospital some times.  She was in an isolation room, all by herself.  To enter, you had to cover your clothing, your head, your face and even your shoes.  You had to wash your hands with disinfectant and then put on gloves.  After her death, I discovered a letter I wrote to her while she was in the hospital, telling her about some little dolls I’d bought, advising her to be good to the doctors and nurses.

We celebrated Gabriela's first transplant with an asado for doctors, patients and family members.  1979.
We celebrated Gabriela’s first transplant with an asado for doctors, patients and family members. 1979.

The rest, well, the rest is history. She got the transplant, a year later she started to reject it, two years later we had come to the US in search of a second kidney.  It would take a year, two at the most, and we’d be back home.  That’s what we thought.  Instead, it was six, and I was a sophomore in college by the time it came.  Before and after, well, there were health problems after health problems.  My freshman year in college I wrote a poem about her death, I don’t even remember what particular health crisis she was growing through then.  Peritonitis, convulsions, infections, my mom actually kept count of the hospitalizations, she’ll probably comment and say how many they were.  My mom was with her on every single one.  Every medical crisis presaged her death, but she didn’t die.  Then she lost her second transplanted kidney, around the time I was having my second child; she refused to go back on hemodialysis so we waited for her to die.  At the last minute, when the toxins in her brain were giving her painful hallucinations she consented to be treated, and there she went on until she had her third transplant, this time from a girl she met on the internet.  The Wall Street Journal even wrote about that (years later, my husband would also be featured on a WSJ front page story, on a completely different topic).

Throughout my life I have made my peace with Gabriela’s death so many times that when it finally happened, it came as an enormous surprise.   Truth be told, I believed she would outlive us all.  She gave proof to the adage that death comes like a thief in the night, when you least expect it.

My relationship with Gabriela had deteriorated over the years.  I loved her, I hope she knew that, but we clashed too much.  I won’t speak ill of the dead because it serves no purpose, so let’s just say we did not get along.   In part I was happy to say my last words to her after she died so she couldn’t talk back.  But I think she knew what I would tell her: that I always loved her with all my heart, that I had given her as much of me as I could give her and still remain a person, that I lived every day with the guilty of the unfairness and senselessness that she had been sick and I hadn’t been, that she didn’t get to live a full life, and I did.  As she laid dead, I spoke those words for myself, of course, but I also spoke them for her.

My family back in 1980, Gabriela is at the front.
My family back in 1980, Gabriela is at the front.

But don’t get me wrong, while Gabriela and I were not close anymore, it’s in relative terms.  There is a closeness in my family which I think is very unlike  what I see in others, for better or worse.  When we were young and my brother and I would express jealousy about how much more attention my parents paid to Gabriela than to us, my mom would say that her children were like her fingers.  When one was injured, that’s the one she paid attention to, but the others were just as important and loved.  I think that the five + 1 of us (Kathy, my younger sister, was born two years before I left for college) are like fingers.  Too much part of a one to be individuals by ourselves.  I don’t think I can grieve for Gabriela without grieving for myself, for my brother or for my parents.

And thus we go back to Facebook’s ill-timed photo.   It didn’t appear on my feed, and for that I’m thankful, but it did appear on my brother’s. I understand why it did.  I come from a large family, with tons of aunts and uncles and cousins and second and third cousins.  Gabriela’s death was shared by everyone who lived her struggles.  They couldn’t be there in person, so they were virtually around her.  So they liked the photo, they commented on it, it was significant.  Which does not mean that seeing it again was welcomed.

My biggest issue was not that this photo was posted by facebook on my brother’s feed, he can deal with his own traumas, but that it was posted adorned with bright colored circles and squiggles that look balloons and garlands.  It’s a design that celebrates, that shows joy… at my sister’s agony and death.  How incredibly crass is that? How cruel?

It’s bad enough that they did it, but it’s worse that they did it with full knowledge of the pain this could cause.  After all, just like Friday they apologized for doing pretty much the same thing.  When you apologize for doing something wrong, you are supposed to change your behavior, not do it again and this time with happier designs!

Some good has come of this, for me.  I had been avoiding thinking about Gabriela this whole Xmas season, I didn’t want to break down and cry and I

have now done so, repeatedly, as I composed this post.  I didn’t want to think about the fact that next year, when my whole family comes to my house for Christmas, she won’t be with them, I didn’t want to think about how there is a finger missing from that hand now and it will never be reattached, but I know I did both of us a disservice by avoiding thinking about her.  I’m glad this forced me to and I can say Merry Christmas to the memory of that little girl that Gabriela was once upon a time.

Feliz Navidad, Gabriela!

Christmas 1975?
Christmas 1975?

City Bell

When I was 7 years old, and living in the apartment, el departamento, in La Plata, my parents bought a little bungalow in “the country”. In reality it was within the confines of City Bell, a semi-developed town near La Plata. My father had actually grown up there, in a large house near the end of the city – we used to pass close to it when driving to the weekend house. Our bungalow was situated in a pretty undeveloped area, very close to the Estudiantes de La Plata country club. Indeed, the club had bought the land where the bungalow was located for its country club, but later sold it in parcels. People had bought them planning to build country houses, but most of the parcels were still undeveloped. Our parcel itself was very small – extending maybe 20 meters beyond the house at most – but there was a lot of space beyond it to play/explore. In the parcels next to ours there were tall eucalyptus trees, but beyond there were shorter trees which we could climb. And the country club was only about 100 meters away – the gate was always closed but we were small enough to fit underneath it.
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The house itself was also rather small. Downstairs there was a largish rectangular living room and an adjoining kitchen-dining room (and the bathroom). Cement stairs lead to a loft, semi-opened to the area below (I think). My parents turned this area into two bedrooms, separated by a large wardrobe. Our bedroom, at least at the beginning, had an old chair that turned into a bed (mine), a daybed for my brother and my sister’s crib. Later they bought a slide-out bed. We had decorated the back of the wardrobe with lots of greeting cards – the pretty ones that my mother’s godmother, Elsa, had sent her from the US, where she lived. They were much prettier than the plain cards then available in Argentina.
We spent most of our weekends in the casa de City Bell. I remember that when we first bought it we made several friends who lived or weekened in the area. There was Pablo, a blond 9-year old who actually lived in the area, across calle 11 (I think). Then there was Federico Carriquiriborde, I’m writing his last name just in case he googles himself and finds this posting (hmm, it’s in English). I wonder if he remembers me. Anyway, Federico was 8, had brown hair and I think bangs. Laura (10) and Matías (8) also had a weekend house in the other side of calle 11.
Laura and Matías were the children of friends of my (grown) cousins Barullo and Ana and they were already good friends with their son, Esteban. Esteban was about a year younger than I and Junior (my brother) and I were very close to him during our childhood. He often shared his weekends with us.
Nuestro grupo en City Bell
This picture was taken at some birthday party at our City Bell house. Pablo is the blond, blue-eyed boy at the top. I think the boy with the brown hair, looking towards the side is Federico. In front of Pablo you can barely see the top of Esteban’s face. Matías is the boy wearing the white and blue t-shirt (he must have been a fan of Gimnasia, a La Plata soccer team). I don’t see Laura, perhaps she’s the girl behind him. Other kids in the picture include Germán (lower left), who lived in the 6th floor of our apartment building and his little brother, the one with the black hair (bottom middle). I can’t remember his name. My brother Junior is the boy closest to the camera, and our cousin Marito is in the bottom, towards the right (the blond boy). The girl in the back with her hand covering her mouth is my (second) cousin Claudia. I don’t know who the other girl and the other boy are. Perhaps someone in my family remembers?
Pablo, Federico, Laura, Matías and Esteban were already a group when we bought the house, and we soon became part of it too. I remember that they had sort of a “club house” under a fallen tree somewhere between Federico’s house and ours. They had brought all types of “treasure” there, though the only thing I remember are some band-aids or bandages. One of our favorite games at the time was SWAT, after a popular TV show of the time. I remember playing that once in an area full of thick cañas (I’m not sure how these thick, tall plants are called in English. They share the name with fishing sticks, so I assume these were once made from them. The cañas may be bamboo, perhaps sugar cane or something else).
Our targets were mostly imaginary, but I think we had one as well. It was a boy, not much older than us, who lived in the area. I don’t know if I ever learned his real name, we called him “el gordito de las vacas” – the “fatty of the cows”. Now, before you get all riled up at our insensitivity, let me tell you that in Spanish (or at least in Argentine Spanish), it’s not unusual to give someone a name based on their physical characteristics. “El flaco”, “el negro”, “el gordo”, “el rubio”, “la petiza” are all common nicknames. Still, as I go back and think of the time and that boy, I can’t but feel guilty at how we treated him.
Our biggest sin, actually, was that we /didn’t/ treat him. He was there, always, tending his cows and there we were, playing – and never once did we think about including him, talking to him, befriending him. Was it because of very early set class prejudices? Shyness in our part? I can’t really recall a reason beyond the fact that it never occurred to us, to me. Other than his ubiquitous presence, there, in the background, in the still open fields surrounding two sides of our property, I remember only one semi-interaction with him. That day, when we were playing in the cane field, we decided that he was our “enemy”, the criminal we were after, I guess. We didn’t do anything to him, don’t worry, but I think we might actually have exchanged some words – perhaps the only ones ever.
I can’t remember exactly when it happened, if after our first year there or somewhat later, but our group sort of disintegrated. I also don’t know why – perhaps Federico’s family stopped going to their house on weekends, Pablo’s dad was strict and perhaps he forbid him from playing with us any more. Laura and Matías we saw for longer, but eventually, much before we left Argentina, those friendships cooled as well. I guess that’s what happens. I haven’t heard of any of these kids for decades. I do know that a couple of people with the last name Carriquiriborde were disappeared in La Plata and I’ve wondered for years if they were relatives of Federico. I don’t remember the last names of the others. As for my cousin, Esteban, we lost touch many years ago as well – I saw his family, but not him, during my last trips to Argentina.
What else can I say about City Bell? We held most of our birthday parties there. I remember playing cops and robbers, starting off the wooden gate, and a game called “colors”. Each person but one chose a color for themselves, then the person without the colors started saying all the colors they could think of. When she mentioned a person’s color that person ran away and the player had to catch him. We used regular colors but started getting creative as well, trying to get more choices. I remember that one of the colors we decided on was patito, little duck, meaning a soft yellow.
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My sister Gabriela’s birthday. I’m the one on top (wasn’t I cute? 🙂 besides my cousin Marito, my brother Junior and my cousin Marina. The girl in the front is Merceditas. She was the grand-daughter of Mercedes, the woman who ran the kiosco near our house, where I bought milk daily and my dad bought cigarettes. Over the years my parents became friends with her and later with her daughter Marisol. I remember Mercedes well. I barely remember Mercedes’ son Atilio, who “disappeared” when I was 8 years old, one of the 30,000 people kidnapped by the military government forces, kept in secret detention centers, tortured and killed. Mercedes became a Mother of Plaza de Mayo. I knew of Atilio’s disappearance even as a child, but it wasn’t until ’84, when democracy returned to Argentina and I saw Mercedes in a documentary about the disappeared on TV, that I realized what had happened to him.
My mom’s side of the family seldom came to visit us at the country house. I think that was probably because her younger siblings (her older ones didn’t live in La Plata) only started getting married and having children towards the end of our life in Argentina. Or it could be because most of them didn’t have cars. My dad’s family came more often, in particular my cousins Ana and Barullo with Esteban (and later Mariana). Gladys and Granny were there from time to time.
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My dad’s family at our City Bell home. On the top my cousin Barullo (Ricardo) holding his daughter Mariana and my father. Below is my cousin Ana María (with the red hair), I, my aunt Gladys, Granny and my aunt Grace holding my sister Gabriela. Grace was Granny’s youngest and only surviving sister. She lived in Atlanta and came to visit us in 1978, a short time before Granny died (of a stroke). For years, after I came to the US and learned English, we corresponded – until she also died, I think when I was in college. She had a daughter, but we didn’t keep in touch with her. Sitting are my cousin Esteban, my brother and my mother.
I remember in particular my 8th or 9th birthday (I can usually remember well what happened in what year while I was growing up, but 8 and 9 blend in my mind, probably because I had the same classroom for 3rd and 4th grade). Granny was famous for her cakes, and I wanted in particular her sponge cake, but topped with whipped cream rather than lemon curd. She made it for me and I can almost remember the flavor – it’s pretty amazing how we can recall flavors so well. That year they gave me a blue living room set for my dolls – alas, it was too small for them.
I particularly remember my 10th birthday for the cake. My mother had met a woman who decorated cakes and ordered a Swiss cheese shaped cake, with little mice, for me. The topping and the mice were made of marzipan. I can’t really remember the flavor of the cake, but marzsipan has never been my favorite. Still, it was a *very* cool cake.

Towards the end of my childhood (aka around the time I turned 12) I stopped going to City Bell – I preferred staying alone in our apartment, reading and doing who knows what. Then we left Argentina and I didn’t see the house for 20 years. During our 2003 visit I had a taxi driver drove us there, but only saw it from the outside. Then when I returned in 2007 the real estate agent took us to see it. It had been rented for the better part of two and a half decades and barely cared for, so it was in less than great repair. Inside the house looked tiny. Someone had built a short wall between the living room and the dining-room. Gone was the furniture, of course – long ago stolen or given away to relatives. I couldn’t help but remember my father making cinnamon rolls (arrollado de canela) on the kitchen table, all of us sitting by the stone fireplace enjoying a fire made from the wood we had collected, the games of scrabble, risk or generala (a dice game).
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The fireplace at our house in City Bell. The girl in red is Laura.
And, of course, the asados – those mandatory Sunday BBQs with choripanes, asado (ribs) and (vacío). I only ate vacío and it had to be red, just like my dad liked it. My mom only liked it well done. Sometimes we had chicken. My dad, Junior and I liked the legs; Gabriela, the wings. My mother didn’t (and doesn’t) eat any poultry, a consequence of a childhood cleaning chickens.
The asado was cooked in a stone grill in the corner of the property – I was sad to see the whole grill destroyed when we visited in 2007.
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The parrilla where my dad made the Sunday BBQ.
cityarbol.jpgBut really, the whole property was sad. The evergreen tree (left) had grown to unmeasurable heights and had managed to kill the grass – so it was all dirt. The lemon and almond trees that served as the ends of our “goal” when we played soccer, were both gone. The tuyas (thuja occidentalis) that my parents had planted to separate our property from the neighbors, almost reached the sky. A couple of very tall trees that I can’t remember rose on the back of the property – and the plum tree was gone.
It wasn’t the house I left, that one lives in my memory.
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Pan Lactal

pan lactal“Milk bread”. Gladys used to buy it on a panadería in Calle 12, a few blocks from her house. I can still smell it, so fresh, perhaps even warm from the oven. For Granny she bought pan de centeno, rye bread. It was dark and much less appealing. We ate the toasted bread with butter and strawberry jam with tea – it was so good.
My parents ought sliced bread, much cheaper and easier. I still remember the brand, Fargo, a little more expensive but softer. I sort of remember the plastic bag it came in – different from the ones now. I don’t remember how it tasted, but it was great in dulce de leche sandwiches. BTW, there are few things more delicious than bread with butter and dulce de leche – at least with Argentine butter.
I don’t remember if Gladys was still buying that bread when we visited her in 2003 and 2005-6. I don’t even remember going alone to the bakery to buy it – I barely remember the bakery at all. But the bread, that I remember.

Más Gladys

De nuevo tu foto. Frente a mi monitor. Te veo ahí, sonriente, joven (tendrás setenta y pico), con tu saco rojo que le hace juego a tus labios, siempre pintados. Tus ojos color acua, ni verde ni celestes, preciosos.
Me estoy por ir a la casa de una amiga, a visitar y tomar el té (sabés? todos los meses me reúno con un grupo de amigas a tomar el té – te lo conté alguna vez?). Te veo de reojo y me parece que venís conmigo, que te estás arreglando para irnos. Vos sabías, Gladys, que yo te seguiría llevando a todas partes después de tu muerte?
Creo que nunca me creí que te ibas a morir. Veo tu foto y estás ahí y no lo comprendo. Me dan ganas de llamarte, ir a visitarte, decirte cuanto te quiero.
Son dos años y medio; estabas tan viejita, pero yo estaba segura, segura, que ibas a llegar a los 90, que íbamos a ir a celebrar tu cumpleaños.
Hoy lloré por la muerte de Mercedes Sosa (no creo que te gustara, vos no eras folclorista) y Camila me preguntó si estaba llorando por vos. Siempre, no?
Todavía no puedo recordar sin llanto, quizás algún día.
Bueno, me voy a tomar el té, te mando un beso.