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?

DealFlicks Twitter Follower Spam

Twitter spam is just as annoying as regular spam – perhaps even more so, as it trades on your good will and desire to play by the rules.  The way it works is simple: a would be spammer starts following you, banking that you will follow them back as a courtesy.  A smart spammer will then mix random tweets with once advertising its product, hoping you’ll mistake the ads for real tweets.

DealFlicks goes an extra step.  It apparently either hires interns, or, just as likely, creates them with the purpose of setting up twitter accounts.  The accounts include stylish photos of attractive young women with generic names like “Sophia Smith” or “Abigail Davis”.  It’s the description of each “intern” which alerted me to their spammines.  They are all along the same lines, e.g.  “Film geek. Avid movie aficionado. Explorer. Student. Social media nerd. Closet organizer. DealFlicks intern. #FollowBack #F4F#TeamFollowback.”  The hashtags are those used by spammers trying to get followers.     I’ve had three Dealflick interns follow me in the last couple of days, and I expect more, as they seem to have a legion of these accounts.

If you are curious as to why you’re being followed by multiple people with identical descriptions, like I was, you may google DealFlicks and find out that it’s a website for discount movie tickets.  An unethical, spammy website that doesn’t deserve anyone’s patronage.  Now you know to avoid them.

 

Oro Gold Cosmetics Scam

One of my goals during my recent vacation to Las Vegas was to attend a timeshare presentation.  Somehow, during all my years on this earth, I’ve avoided being to one – and yet I’m extremely curious to experience firsthand the extremely oppressive sales tactics I’ve read about.  Alas, even though we stayed at the Tahiti Village resort for several days, I didn’t have the opportunity to do it.

Walking by the Oro Gold cosmetics store at the Rio Hotel was almost as good – I got to experience the high pressure sales tactics and, as I was waiting for my husband to finish with something, not really waste time at all.  And lord, are those sales tactics hard.

It all started when I walked by the Oro Gold store.  A metrosexual looking guy with a hard Israeli accent stopped me to offer me a sample.  He then somehow engaged me – I forget exactly what he said – and brought me into the store.  He had me sit down and he proceeded to apply some sort of eye cream under my eyes.  The eye cream was supposed to be for wrinkles, but I guess I didn’t have enough for him to fuzz about, so instead he talked about collagen and puffiness and so forth.  My eyes were pretty puffy, I must admit, as I’d only gotten a few hours of sleep the night before and before I left that morning I’d gotten some sunscreen into my eye, so my eyes had been watering for half an hour.

The cream worked.  After I used it my eyes were less puffy and looked better – or at least that’s what my daughters and my husband said.  The latter never notices anything, so the difference must have been noticeable.  That said, this is supposed to be a cream to use once a week, so I’m not sure why immediate concealing effects would be relevant.

He also asked me how old I was – I imagine meaning to tell me that this product would make me look younger.  And while I think I look exactly my age, he may have thought I looked younger as he was pretty much silent when I said I was 43.

I guess I didn’t look convinced enough so he moved on to the next product, an exfoliating solution which he put on my underarm and then rubbed off taking a lot of my dead skin with it.  Once again I had to admit that it worked, my arm was much softer and, actually, I think it still is.  So he’s probably right that I need to exfoliate.

Then the sale pressure started.  He asked me if I liked them or I loved them, and I didn’t know how to respond as I was pretty indifferent to the products.  He also kept extolling the fact that they were 100% organic, but looking at the ingredients which included various chemicals, I didn’t think that could be the case.  He hurried to move on with his spiel to stop me from looking carefully.

And then the sales tactics started.  I knew the products would be expensive so I wasn’t surprised when he threw figures in the hundreds of dollars.  He kept making different combinations of products and offering them to me at different prices (all in the hundreds), throwing extras, etc.  I told him they were good, but I didn’t have my credit card so I couldn’t buy them.  Still, he went on to show me on the computer how much they sold for so I’d see what a bargain they were.  Of course, I didn’t believe for a second that those were the real prices.

I told him several times that I’d think about it and then come back.  Finally he accepted I wasn’t buying and he sarcastically said “you’ll think about it” and pushed me (I don’t think literally, but it felt like it) out of the store.

I have to say that I totally understand how people succumb to these sale practices.  Even though I wasn’t really interested in the products, and I knew this was a scam, after he had done something for me (spend time, made one eye look better), it was hard to say “no”.  Indeed, I was happy I didn’t have my credit card with me as there was no way I could say “yes” even if I wanted to.

After I came home I read about Oro Gold and found that the products get high ratings on Amazon.com, but they also are sold for much less money (update, Oro Gold seems to have managed to get Amazon to pull lower-priced Oro Gold products, you still can save by buying on e-bay, there is no indication that anyone is actually making forgeries of the product).  I’m never going to spend $75 on a 2 oz Collagen Renewal Cream, but it’s still better than the $248 it sells for on their website or whatever amount it sells for at their stores.  I also read about the high-pressure sales tactics at other stores, and the fact that sales associates tell customers they can return the products within 14 days, but the receipts are stamped to say “no returns”.  Given that you don’t get a receipt until /after/ you’ve made the purchase, that is very deceitful (and probably unenforceable, but really, who is going to sue?).

My advise would be to not buy Oro Gold cosmetics.  Even if they work well, a company that intimidates customers and lies to them should not be rewarded.  I’m sure there are many very good cosmetics out there.  I’ve been using Avon Anew series and they’re much cheaper and I think quite good.

Dec. 4, 2012. Update.

I’ve done some more looking into Oro Gold Cosmetics, and it appears to be an offshoot (perhaps even a shell company) of the “Dead Sea Cosmetics” businesses that have been under investigation by the US and other governments, as revealed by a cable from the American Embassy in Tel Aviv released by Wikileaks.

These companies recruit young Israelis who have just finished their military service.  They send them to America (and other countries) on tourist visas, put them up in apartments (for which they charge room and board) and set them to work on their stores and kiosks on a commission basis.   I think this explains why the sales people are so aggressive and manipulative, and so willing to lie to customers.  After a few months, the employees go back to Israel.

In addition to scamming consumers and exploiting workers, these companies seem to also be involved in organized crime, including drug trafficking and money laundering.

Here is an interesting article about how these kiosks work in England.

But it gets even more interesting than that.  I decided to take a look at the ingredients for the peeling product that the salesman had applied to me.  While I couldn’t find the ingredient list at the Oro Gold website, others listed water and polyvinyl alcohol (PVA) as the two main ingredients.  It’s been a long time since High School chemistry, but Wikipedia was helpful enough to explain that PVA is used mostly for its film-forming and adhesive qualities.  In other words, it’s a glue.  A quick search for PVA and glue, quickly confirmed that PVA is the main ingredient in household glue.

Do you remember what happens when you get some glue on your skin and let it dry?  Come on, give it a try and then rub it off!  Yep, the glue you rub off looks very much like skin and your actual skin feels much smoother and softer.    Their $100 peeling gel is just a trick.

It would appear that Oro Gold is not just literally scummy, but also scammy.

Dec. 15th update

I found a New York Times article about the lack of benefits of gold in cosmetics. It’s worth a read.

Also, apparently the Oro Gold peel does not contain PVA (or does no longer – see comments below).  Instead it contains carboner, a thickener, which when combined with cetrimonium chloride and rubbed on the skin, forms white beads.   The colorant in the product (which is not present in other Oro Gold products) is probably meant to make these look like skin.  This combination does help remove dead skin, but then again, so does glue.

Jan. 22 update

Last week I had a long phone conversation with Judy White, the Costumer Service Manager with Mazal Enterprises, the company behind OroGold.  This is what I learned from the conversation:

– Mazal Enterprises is the manufacturer and distributor of a number of different beauty lines, including OroGold, HerStyler, VineVera, Lionesse and Vivo Per Lei among others.

– They are a private, family-owned company and they are not related to Death Sea Cosmetics or another company.

– They have both company-owned stores and licensee stores.  I think she said there were 200 stores world wide, but she couldn’t tell me which proportion was each or which companies were running stores with the Oro Gold name.  She did say that their licensees agree to only do business with their company.   But not knowing who the licensees are, it’s impossible to know if they might be the same people connected with the “Dead Sea cosmetic mafia”, to give it a name 🙂

– She blamed all the bad customer service to licensees who were not doing their job correctly  She says they have been closing down kiosks (which she claims have never been operated by Mazel) as well as OroGold stores that have caused problems.   She said all stores in Vegas have been closed down.

– She said they don’t have any stores in the Philippines.  If there is a store there, they don’t know about it.

– She says they are trying hard to deal with the customer service problems in the company by making all their stores company-run.  But she claimed that took time.

– She says that she will be happy to send a refund to anyone who contacts her.  Her e-mail is judy@mazalent.com

Unfortunately, there were other things she couldn’t explain:

– How is it that OroGold sales people throughout the world use the exact same selling techniques, and how come those techniques are the same ones used by Dead Sea Cosmetics and other companies.  She tried to argue that it had to do with individual sales people getting over enthusiastic, but couldn’t explain why they would all say the same things, show the same products, down to the same trick of folding the receipt so people can’t tell the products cannot be returned.

– She couldn’t explain why so many people throughout the world have reported that OroGold sales people are Israeli (or otherwise have an accent that might indicate that they’re from Israel).

– She couldn’t explain /why/ the chain had a “no returns” policy on unopened products.   She brought up having bought some make up at Nordstroms – I imagine to make the point that she wouldn’t be able to return it – and was surprised when I told her Nordstroms would be more than happy to take it back.

As Judy kept emphasizing that the company wanted to change its image, but that would take time, I mentioned that they could eliminate most complaints if they accepted returns on unopened products (she says they will take back open products if they cause an allergic reaction).  After all, the biggest complaints are that people feel ripped off.  Accept returns and that goes away.  She seemed to get the idea and said she’d bring up to her superiors.  Personally, I think that the whole hard sale/overprice/lying/no-refunds method is the intentional modus operandi of Mazal, but she genuinely seemed to be unaware of that.  Meanwhile, however, if you want a refund do e-mail her (and then let me know if you’ve gotten it).

May 2013 update

Despite Judy’s promises, as detailed above, comments below indicate that she has not been responsive to e-mails and has not offered refunds to those who’ve gotten a hold of her on the phone.  She has not responded to my own e-mail either.

Clearly, Judy’s phone calls were just an attempt to damage control – but a half-hearted one.  Perhaps she thought that sending me $500 worth of products (which equaled all of 3) would buy me off.  If so, no such luck for her.  Most likely, she wasn’t “in” on the scam – she probably honestly thought the company was trying to re-invent itself.  She did sound very naive on the phone.  You can continue writing to her, and if you do succeed in getting a refund by all means comment and say so, but don’t keep your hopes up.

If you’ve been scammed out of a lot of money by Oro Gold, this is what I suggest you do (again, no guarantees).

– Many local TV channels have consumer reporters.  Contact all the TV channels in your area (if you live somewhat near to the Oro Gold store) and ask the reporters to cover the story.  I, personally, think it would make great TV.

– If the Oro Gold store you shopped at is in a large city, check if there is a consumers’ affairs department at City Hall, a deputy City Attorney that handles consumer issues or a people’s ombudsman.  If so, ask them for help.   If that’s not available to you, check to see if there is a national consumers’ office (sometimes it’s part of the national ombudsman or national human rights commission) or contact your City Council or state representatives.  Also contact your national and state’s attorney general.

– If neither option helps, perhaps a little self-help will.  Write a story about your experiences and submit it to your local paper.  The freebies, in particular, appreciate free content.  If there is an AOL Patch in your city or a blog that covers news, submit it there as well.

– “Like” and “share” this blog post on Facebook and Twitter.  The more attention they get for their slimy sales tactics, the more likely they are to stop.  Or at least give you a refund.

– Check what the laws are regarding product returns in your state or country. They do vary.   In California, where I live, for example, if products are not returnable, the retailer has to place a conspicuous sign explaining that.   Oro Gold is trying to get around this by claiming that their products cannot be resold due to health considerations, but I personally don’t buy it, in particular if the product is still shrink wrapped.   If your state or country has a similar law, you may want to go to the store at a time when the original salesperson is not present, or send someone over, and take pictures of any area where a “no returns sign” could be placed.  This is because some people have claimed that when they complain, suddenly a “no return sign” appears out of nowhere.  If they have violated this law, you could at least take them to small claims court (if available in your jurisdiction).  Or you can just the photos to illustrate your story.

– Also check what the audio recording laws are in your state or country.  In some places, you only need the consent of one party for a face-to-face recording.  If that’s the case where where you shop, you may want to send a friend with a hidden recording device (e.g. a cell phone) so that you can get the whole “Oro Gold” treatment on video/audio.  Make sure that your friend asks them whether the products are returnable.  It’s often a game of “she says, he says” with Oro Gold.  Assuming it’s legal in your state to do it, you can upload the video to YouTube.  Definitely let me know about that if you do it.

Creative Communication: Scamming a child

“Mommy, I won, I won”.  Mika rushed out of her 4th grade classroom today, paper in hand, a huge smile on her face, happy and proud of herself.  She’d won a poetry contest, she told me, almost out of breath in her excitement.

I knew immediately what it was.  I had read about poetry scams years before, understood well how they work.  They ask you to submit a poem (many advertise in magazines) for a “prestigious contest”.  Some time later you’ll hear that your poem has been selected to be published – trouble is that if you inquire further, you’ll find out it will be published in a  volume only marketed to the authors of the poems and that there is almost no selectivity as to what poems are published.  Creative Communication admits publishing about half of all the poems it gets, and does not explain how the selection process works or who the “judges” are.  They sell the book for $26.40.

I was not aware that my daughter had entered this contest at school last year.  Creative Communication apparently uses teachers to get their students to submit their poems.  I am sure that my daughter’s teacher thought it was legit.

I was torn about telling Mika that her contest was a scam, but when she asked if I’d buy the book, I asked her whether she wanted me to tell her the truth about the contest.  Mika is very mature for her age and I try to be very honest with her, but she was so excited that I didn’t want to crush her.  But she wanted the truth and she got it.  She felt bad, disappointed, taken.  She even wrote about it on her new blog and e-mailed her friend to warn her.  I hate that that slimy company got to hurt my child.  It is just unconscionable to play with the feelings of such young children, exploit their emotions and profit from the naivete.  These are children, for God’s sake!  And parents, of course, many of whom probably cannot afford the overpriced volume but will feel they’re failing their children if they don’t.

If there was a hell, there would be a special place for the owners of Creative Communication and other companies of the sort.  I will, of course, inform our daughter’s teacher (principal and school district) of this scam.