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?

At Granny & Gladys’ home

Even though I was not even 4 years old, I have quite a few memories, mental photographs, of the three months I spent with Granny & Gladys when my mother was at the hospital with Gabriela. I can’t be sure that the images I have of Granny and Gladys with me come from this period of time, it’s difficult to pinpoint how old I was the time we went to Sados and they bought me a doll – that I think I might have named María Eugenia – that came with lots of lots of little toys in the box. But some other images, those of the hospital and the park, could only come from this time.
Gabriela and my mom stayed in the only private room the hospital hard. At that time (and perhaps now as well), the Hospital de Niños had large rooms with multiple beds for all its little patients. I don’t know why my sister was given that room, a few years later, it’d be my (second) cousin Fernando who would occupy it. Fernando, a wonderful, smart, funny little boy, son of my first cousin Barullo, got leukemia when he was 7 years old.

Continue reading At Granny & Gladys’ home

Granny and Gladys

Gladys y GrannyGranny and Gladys, my grandmother and my aunt, were probably the most important people in my life growing up – and both remained so until their deaths.

Granny, my father’s mother, had been born in 1893 – she was 76 when I was born. She was American, her father being a German immigrant and her mother also of German extraction. The story was that my great-grandfather, whose name escapes me, came to America to escape military service in Germany. Once upon a time I knew where he was from, but have since forgotten – as so many other stories my grandmother told me. The only one I seem to remember was of a dinner when she refused to eat her carrots and was made to sit at the table until she ate them. Apparently she did, which showed a lack of determination, I always thought.

She had been born in Albany, but had grown up as one of 8 children in Schenectedy, NY. I never thought of asking what her father did that allowed him to raise such a big family in what was described as quite a large house with a lot of land around it. Soon after Mike and I got married, he had a job in Boston and I flew to see him for a weekend. We drove all over New England, visited Schenectedy (what a dump!), looked for the house (which we might have found in a subdivision – surrounded by many other houses) and spent some time in the local cemetery looking for other Weisheits. I don’t think we found them. I wonder if my sister has found any of those second and third cousins – with 7 brothers and sisters, I’d imagine that there must be quite a lot of relatives out there.

Granny, on the right, with her sisters Gertrude (standing) and Grace Weisheit.

My grandmother worked in an office (could it have been at IBM?) and apparently my grandfather saw her across the street and decided he was going to marry her. Either that or he met her at church – which seems unlikely as my grandfather was Catholic and my grandmother was Lutheran. I’ve only seen one picture of my grandmother as a young woman (the one to the right) and I think she was quite striking – with curly blond hair (though she later had black hair, so that might have been an optical illusion in the cepia photograph), and big light-colored eyes. I’m hoping that someone in my family will sit down and record all the things I don’t remember. What was my grandfather, Ramón, doing in the US? He was in the Argentine Navy, and I have vague recollections that he was taking some kind of electronic course – I think he did electronics -, but in reality I have no clue. The point is that they met, they had what sounds like a brief romance, they married, and very soon my grandmother was in a ship to Argentina (what ship? The one that was bringing my grandfather back? How many questions that I never asked! – I should have undertaken this exercise while Gladys was still alive).

My grandmother was 20 at the time.

As it was expected and – given the lack of birth control – common at those times, she had her first son, Ricardo Kent, soon after she got married. Oh – Richard! That had been her father’s name, Richard Weisheit, for whom my uncle was named. Richard was also the name of her oldest brother. My impression has always been that she had been close to her brothers and sisters, all but one of whom died before I was born. The youngest one, at least a decade younger than my grandmother, was my aunt Grace. It was always clear to me that my grandmother held her in great affection, she actually came and visited Argentina before my grandmother died. Right before, if I well remember.

My grandmother, who doesn’t seem to have liked Argentina, Argentinians or Spanish a great deal, wanted to give her children English-sounding names. Alas, at that time – and until very recently – that was not an option. There was a list of approved names, all of which were in Spanish. Even if you immigrated, they translated your name into Spanish. Margaret became Margarita – and thus my own name.

She couldn’t name my uncle Richard, but after that brief homage to her father, he was to be known as “Kent” throughout his life – there is no Spanish version of Kent. My aunt would be Gladys – another name which is the same in Spanish – and my father would be David, which has the same spelling, but a different pronunciation, in English and Spanish. Indeed, my mother and family always called my dad “Davy” or “Deivi” – though I think his friends knew him as “Dah – VEEDH”.

My aunt Gladys was born 3 years after Kent (I think), but my father would only follow her 16 years later. He was the baby of the family – and I know that my aunt Gladys adored him. My uncle Kent got married very young and went on to have children only a few years younger than my father, so I don’t know that he was a major actor on my dad’s life. Kent was a purser in the merchant marine, but he was retired by the time I was born (or soon after). He was married to my aunt “Tota”, a High School classmate of Gladys, thus binding these two women together for life. I don’t think they liked each other much.
Gladys and Kent were also very close – had Tota not been around – I’d have described them as a matrimonio de hermanos, which is hard for me to translate, perhaps a “sibling marriage?” – this is a phrase that I’m borrowing from a story by Julio Cortazar to describe siblings that are so close that they are almost a couple. Perhaps that emotional closeness between Gladys and Kent is what caused so many problems with Tota. There is also the fact that my father and his siblings are all pretty calm, take-it-easy sort of people – but the women in their lives (my mother & Tota, at least) were quite the opposite. So am I.

When Gladys and Kent were children they spent some time in America – probably cementing their English skills. All of the children, including my father, were fluent in English – which makes me believe my grandmother always spoke English at home. Even after living over 60 years in Argentina, she spoke Spanish with a very heavy accent and did not fell comfortable in the language. It’s funny, the only accent I can “make” (as opposed to naturally have) is my grandmother’s American accent in Spanish. It’s quite amusing – and yet sad. I didn’t learn English as a child – despite those English language classes – and I wish my grandmother would have lived long enough for me to have been able to speak her cherished language to her. But perhaps it was better that way.
Even though my grandmother died when I was 9 years old (or was it 8?), I’m afraid that I don’t remember her that well. I remember our mutual love, but how was she as a person? Extremely patient, for one. I remember so many times, when I was very little, standing behind her on her favorite couch, “her” chair, playing with her hair, arranging it in whatever style I could think of. It must have been uncomfortable, even painful, not to mention the fact that she was careful about her hair. I won’t let my girls touch my hair. I guess that Granny loved me more 🙂

As I mentioned, my uncle Kent had children who were almost the age of my father. They were both boys, in their late twenties when I was born. Indeed, both of them had children older than I. So for my grandmother, it was a dream to have a little grand-daughter – her first. She really doted on me, not just with gifts and cakes, that was very measured in Argentina at the time, but with the type and amount of love that can only be felt. I loved my granny so very much and I cry now as I remember her.

What can I say about her? Gladys and Granny lived in an apartment several blocks from our apartment. They have moved there when the City Bell house where they had lived for years, became too big for them. I don’t remember if that was before or after my father got married.

Granny, and then Gladys, lived in that apartment until they died. It was a beautiful apartment, somewhat big and very comfortable. I lived there when I was three for three months – I’ll talk about that later – and later when I was fourteen for a year and a half. The last time I stayed there was after Gladys died. I had to strip it of most things in there, taking home some, giving away many more. So the apartment is not how I remember it any more. I don’t think I want to go back to it – and yet, it’s full of the essence of Gladys.

Gladys was 89 when she died – I’d seen her twice in the preceding six years, the last time, two years before she died. By then, she had started to look her age, though she had her hair died and styled until she died. But I don’t remember her at all that way. To me she looks like she did thirty-plus years earlier, when I lived with her. Her beautiful face, those aquamarine-colored eyes, lips always painted red, her hair short, blond and in curls. I remember her, though, with the red cardigan that I’d bought her. I gave it to her the last Christmas she spent here, in 2000, when actually my whole family came to our new home. I got her a cashmere cardigan, it was so soft. I completely forgot I’d given it to her, until I brought it home after she died – I couldn’t bare giving it away.

But let’s go back to my childhood, when Granny and Gladys were ever present. When I was almost four, on Three Kings Day 1973, my sister Gabriela, 9 months at the time, got sick, very sick. She got something called Hemolytic Uremic Syndrome, a poorly understood disease (not even a disease but a syndrome), that caused her a renal insufficiency. Basically, her kidneys stopped working. We know now that the syndrome is a consequence of oral exposure to e-coli, she must have eaten something bad. I don’t want to write now, and perhaps ever, of how her illness, the quest for a transplant which brought us to America, and everything that it involved, affected my life. It is too much and perhaps I still don’t understand it. My point here is just to tell that when Gabriela was sick, she was taken to the hospital where she spent three months. My mother stayed with her in that little room, open to a narrow patio. And for those three months, I stayed with Granny and Gladys.