I wrote this for Lay Anglicana a few years ago. I don’t think I’ve changed my mind about it, so I’m offering it again.
If I had to name a single pet peeve with social media, it would be the Facebook posts which read as follows:
With a broken heart and tears in my eyes I can honestly say this is the most difficult time ever. I know what cancer and treatment can do to a body and I sometimes wonder if it is worth it in the long haul. It seems to do more harm than good.
Nothing is more painful than trying to smile and remain positive, but after chemo and radiation, the person physically changes and they suffer with sadness. I know many of you do not give a hoot about this message, because, of course, the cancer has not affected you. You do not know what it’s like to have fought the fight, or to have a loved one who leads a battle against cancer.
For all the men and women I know, I ask you a small favor – I know only some of you will do it. If you know someone who has led a battle against cancer, is still struggling, or who passed, please add this to your status for one hour as a mark of support, respect, and remembrance.
Copy and paste to support those affected by cancer. Do Not Share. From your phone or tablet, hold your finger over the message to copy and paste to your page.
Someone Who Cares . . . Deeply
Showing Support To Those Who Are Fighting This Awful Disease
Apart from the poor quality of writing, this is an appalling thing. It is manipulative: “I know many of you do not give a hoot”. And to show you not only give a hoot, but multiple hoots, you must copy and paste–“share” is obviously inadequate. It must appear as your very own struggle (best if you can mention a particular friend or relative–by name or de-identified–on whose behalf you give your precious hoots).
Tied to the manipulation is shame. I believe shaming people for doing something morally wrong, mean, or willfully harmful is not always inappropriate. But telling people they don’t care because they don’t “copy and paste”? As if caring is measured by my putting my finger over a message and pretending it’s my own (which is why you don’t “share”–it identifies where you got this crap).
It is arrogant: “You don’t know what it’s like to have fought the fight, or to have a loved one who leads a battle against cancer.” It is a tragic truth to say there are few people over age 15 (which I believe is late in life) who have not, in some way, been up-close-and-personal with cancer. A parent, sibling, grandparent, family friend: by the time you’re in your mid-teens, someone you know has, more than likely, dealt with cancer. The outcome may have been survival (which may not mean return to things as they were), it may not. But pretty much everybody‘s life has been touched by cancer.
But apart from manipulation, inappropriate use of shame, and arrogance, there are a few big problems with “Copy and Paste if You Care! I Know Which of My Friends Will!” The first is, it’s ridiculous. At least on Planet Earth, which is where I maintain a mailing address. Go ahead and “Copy and Paste Because You Care!” if you can imagine the following scenarios on your home planet:
“I’ve just had my one-year follow up, and it looks like I’m cancer free. Thanks so much for your copy and paste of that one status for an hour! I just know it did the trick.”
Bob: John, I just wanted to let you know before you hear it from someone else. I’ve got cancer, it doesn’t look good, I may not have a lot of time left.
John: I’m so sorry, buddy. I’m here for you. Name what you need, and you’ve got it.
Bob: Thanks, man. It would really help if you did that Facebook copy-and-paste thing. A few hashtags on Twitter if you can would seal the deal.
John: Done, bro. You always know I’ve got your back. (Fist bump.)
Loved ones around a deathbed, holding the hand of someone about to pass onto whatever comes next. Handkerchiefs dabbing eyes, and weeping: “If only I had copied and pasted that status!”
Newspaper death notice:
Maria Virgomaterdei died Monday, August 15 2016, at Vassar Brothers Hospital, after a long illness. Auchmoody Funeral Home, Rt. 82, Hopewell Junction, NY, will hold no visitation or memorial service. In lieu of flowers or contributions, the family requests her to be memorialized by copying and pasting a Facebook status, or tweeting #cancersucks.
You get it.
But even these stupidities are not why the “copy and paste” burns my onions so badly.
I have said very little about it publicly, but just about a year ago, a “friendlative” (someone whose relative is married to a relative of mine, whom I would not have known otherwise, but who has become a cherished friend) was diagnosed with an aggressive form of leukemia simultaneously with an aggressive form of pneumonia. This person was hospitalized for a total of eight months in three separate institutions–and set a record for the length of stay in the intensive care unit of a specialist cancer hospital. There were weeks of medically induced coma. There were Christmas trees of IV bags. There were prognoses of “will not likely live another week.”
My person is still alive, and is home. Still using an oxygen concentrator (and the damage from the pneumonia may be permanent), and blind, although hard to say whether it was the illness, complications, or treament which took sight. Undergoing various types of rehab. Learning to live as a blind person.
And I never “copied and pasted” a single damn status. Why? Because there are better things to do. Things which actually do something.
On the night before he was crucified, Jesus went to the Garden of Gethsemane to pray. He took his most trusted friends, who ended up unable to pray with him for a single hour. Would he have appreciated a “copy and paste” as an expression of care, solidarity, support?
In the words of Dr. Evil, how about no?
There are much better things to do as an expression of care. Here are a few we tried during our loved one’s illness (some of which we still need to do):
- If you’re a religious or spiritual person, pray for an hour (yes, the same hour you’re supposed to use for the copy-and-paste status). Prayer, unlike posting a status, takes effort, energy, attention. And it is really about whatever higher power to whom you pray, in relation to the person for whom you pray. It isn’t about your smug self-righteousness about having copied and pasted.
- Ask what is really helpful to the person–and what is not. Then do what you can from the list. Some of what we did are these:
- Visit–according to the schedule of the patient. Take into account treatment times, appointments, the person’s energy, and the times when closer-in relatives can make it. If a hospital has a limit to how many people can be in a room with a patient, always defer to the patient’s wishes and step out if a closer person (or one s/he needs to talk to) arrive.
- Take care of the patient’s immediate family. If rides need to be arranged, offer them. Ask what meals they need, and cook or purchase them. Walk their dog or clean the cat litter. Buy them an hour of Merry Maids if you can. Help with the kids’ homework.
- Provide treats and comforts. Downloads or CDs of favorite music, or audiobooks. A cozy fleece or pair of slippers. When I broke my wrist and was housebound in 2014, one of the best ways to supply treats and comforts was the Amazon Gift Card. It allowed me to get what I liked, in the format most congenial to my condition, when I needed it. If your loved one has access to a tablet, smart phone, laptop (or has someone who can do this for them), Amazon Gift Cards are great. If they’re in a hospital, it lets them ask the staff what is allowed and what is not safe–a well-meaning visitor may bring all the wrong stuff.
- Send cards–but not always flowers. In the ICU of a specialist cancer hospital, flowers are too germy, but very few microbes can grow on dry paper.
- Offer your frequent flyer miles to bring distant loved ones to visit.
- Offer rides to/from the airport for out of town visitors.
- Offer your guest room to out of town visitors.
- If the patient is a member of a faith community, ask them if they would like a visit from a leader of their congregation, or if something like home communion or being put on a prayer list is something they would find comforting. If there are printouts of sermons, ask if s/he would like you to get them and (if needed/wanted) read them to your loved one. Then make the call to the faith leader. Even if it is a religion to which you don’t belong, or can’t stand. Remember, it’s about the patient, not you.
- Knit or crochet a soft hat in a favorite color if they’ve lost their hair to chemotherapy.
- ALWAYS use the “ring theory” when you don’t know what to say.
- When they come home, learn how to use the equipment needed (hospital beds, oxygen concentrators, nebulizers) to make the transition.
- Offer to research services needed.
- If they want, be with them at doctor or rehab appointments. Help by keeping a list of questions the patient wants answered, and take notes on the answers. Learn their physical/occupational therapy exercises, and help them do their routines at home if they want.
- Learn along with them about any adaptations to a different way of living which may be the result of surviving cancer.
- Organize a fundraiser to help with expenses which aren’t covered by insurance.
- Make a donation to a reputable charity whose work provides care to patients or research on treatments and cures.
- Sign a donor card so your organs/tissues can be used for transplantation or research after your own death.
- See if your blood/plasma/bone marrow are a match if there’s the possibility they may be needed.
No single act I’ve listed is beyond the capabilities of a reasonably competent, decent adult. No single act I’ve listed is by itself heroic. None of us did all of what I’ve listed. But each of us did at least one of these, according to his/her ability and resources. Together we had it covered.
Your friend or relative is not properly remembered or honored or supported by a generic, whiny Facebook status or hashtag which does not describe him or her as a concrete human being. If all you can do is post a Facebook status, post one which tells your person’s unique story, and remembers the particular human being you loved. But don’t “copy and paste.” It’s abusive, it’s undignified, and it does nothing good whatsoever.
I’m very sorry if you think my failure to “copy and paste” means I don’t care or don’t know as much as you do. But I was kind of busy doing most of the above, and cheering on people who did things on the list I was unable to do.
In February of 1938, Alfred H. Wertheim presented a paper to the New York Academy of Sciences and Affiliated Societies. The “subject” (not title) reads as follows:
What may be proved from our present knowledge as to the possibility or impossibility of released intra-atomic energy constituting an important source of solar and stellar energy.
Mr. Wertheim’s certificate of membership is dated May 2, 1938, so this paper may be what earned him membership in one of the oldest learned societies in the United States.
For years, I saw Mr. Wertheim’s certificate every day, as it hung on the wall of the dining room in the house where I grew up. Alfred was my maternal grandfather. I never met him, as he died when my mother was a teenager. She adored her father, but did not speak in much detail about him–the memory of his untimely death in his early 50s was, understandably, painful for her. As a result, I don’t know a great deal about my grandfather.
One important thing I do know, however, is this: Alfred Wertheim was not a scientist. At least not by profession: he was a violinist, and he also ran a textile business. But by today’s standards, even by the standards of the 1930s, he was an amateur.
I don’t know if Alfred went to college or earned a degree–or, if he did, what his field of study might have been. But I am sitting here with a draft copy of his 1938 paper on solar energy, and looking at a carefully researched, closely argued essay of a quality I would expect in a master’s level seminar. Not from an amateur.
We need to remove the negative connotations from the word amateur, and welcome more of them into our institutions. Setting aside the natural pride I feel knowing one of my ancestors produced a work of this quality, as an amateur, we need more people who are not the “professionals” making significant contributions to things like our religious institutions, communities, political endeavors. We need to take into account the insights of people with curious minds and meticulous thought processes. We need to respect the intellectual power people have when they apply their abilities to big questions and projects, and stop dismissing them because they are just “amateurs”.
We need, in short, to revive my grandfather.
I’m not arguing we need people who don’t know what they are talking about being taken as seriously as people who do. I’m not saying (as a recent Facebook meme suggests) a Google search is equivalent to an earned doctorate.
But I think we need to foster the kind of careful thinking about sophisticated ideas by people who may not be getting paid for it. We need to educate people not so much for discreet technical skills, but for the ability to evaluate varying sources of information, compare their quality, and articulate the reasons for accepting or rejecting them on their merits.
The kind of amateurism in Alfred Wertheim’s 1938 paper on solar energy is not the kind of amateurism of a world where Twitter and the 24 hour news cycle reigns supreme. But it is so necessary as an antidote to the world of the sound byte and Facebook meme. My grandfather’s amateurism is what comes from a world where a man or woman with a wide-ranging mind is encouraged to put serious energy into exploring important ideas, and subjecting the conclusions to the scrutiny of people who know more than he does. It is intellectual courage in a high form.
I wish I had had the chance to know my grandfather. Because I think we need more of what he demonstrated in this paper.
For a while, I’ve been hearing/reading an unfortunate term, used by Christians–often youth pastors–and I think it’s time to say something.
“We’re just here to love on these kids”. Or elders, poor people, people of a different racial group.
It’s a little creepy, and while I agree, “creepy” is only the tip of the iceberg.
To “love on” a person is sort of like “eating on” a plate or a table. The person/plate/table becomes an object for the convenience of the agent–the person doing the “loving” (or eating).
To “love on”, much like to “eat on”, is non-relational, and non-transformative. The person/plate/table “loved” on or “eaten” on, is not changed, improved, developed, matured.
Indeed, it is more likely the person/plate/table is just left with a crumby, sticky, wet mess. And the “lover”/eater is unlikely to want to clean it up.
How about just “love” the person?
Around February of 2016, it became popular for the detractors of now-presumptive Republican presidential nominee Donald Trump to refer to him as “Drumpf”, the name his ancestors brought to these shores from Germany. It started, I believe, with comedian John Oliver, and took off. A number of liberal friends (and I do consider myself somewhat left of center) proudly announced they were going to “make Donald Trump into Donald Drumpf. One praised a student for wearing a baseball cap with “Drumpf” on it.
It is the most ridiculous and childish thing, and completely unworthy of educated, thoughtful people. It has the finesse of bullies on an elementary school playground. One woman used “Drumpf” on Facebook yesterday, and I called her on it. Her response was how ridiculous it is for the presumptive nominee to put his name on everything (okay, so why not ridicule the name he puts on everything, rather than one he does not use because it is not legally his? ) Ridiculing names is the province of very young children. And last I checked, children whose ages are not in double-digits do not vote in the United States.
Ridicule the man’s ego, his bombastic pronouncements. Take offense at his bigotry and the crude jokes he makes about women’s biological functions. Point out how his speeches make no sense. Vomit at how he made the largest single-day fall of the pound sterling about how he would personally benefit by people playing more golf at his resort in Scotland. (Really? Food, fuel, and basic necessities are going to cost more, and you think people are going to play more golf?)
But ridiculing a person on a name s/he did not choose seems foolish. Trump is daily showing himself to be a xenophobic fool, on whom expensive education was completely wasted. But the people who built the wealth which made such a waste possible chose to change the name.
Why would they do such a thing?
Well, this is the only similarity between Mr. Trump and me.
They did it to accommodate people who have a severe learning disability–the inability to learn or function (even marginally) in a language other than English. They did it to pass as Anglo in a country built by immigrants which has never fully embraced immigrants. Frederick Drumpf changed the family name to something these poor benighted Anglo-centric souls could pronounce and accept.
At least, Frederick Drumpf could make the choice.
I am not entirely sure what my ancestral name is, because when my father’s parents emigrated from Eastern Europe to the United States, they were simply given a name at the point of entry. They didn’t choose it–it was given by some ignorant immigration official who couldn’t be bothered to even make a stab at transliterating their real name into the western alphabet. So, we ended up with a nice, Anglo-sounding name. An easy name for Americans to pronounce. Well, most of the time, as it still gets screwed up by semi-literate Anglophones. Some of whom are educated, responsible–but still only semi-literate, because they can’t function in a language other than English, and they can’t deal with a name slightly different than what they expect to see.
There is plenty to criticize with Donald Trump’s character, fitness for office, ignorance. There’s a boatload of raw material for late-night comedians to make sophisticated jokes.
But don’t criticize his grandfather for making a concession to the language-learning disabled.
Nobody with an internet connection, a television, or a newspaper can have missed hearing about the horrific slaughter of LGBT nightclub patrons in Orlando this past Sunday morning. And nobody can have missed the blame being thrown about concerning where the fault lies. And nobody can have missed the outpouring of prayer, and the assertions of the (very reasonable) opinion saying prayer is no longer enough. Fortunately, there has been a move on the part of the US Senate to consider (inadequately) more substantial measures to keep of weapons of war out of the hands of people who have no business with them.
Prayer and protest are appropriate responses. Okay, I’m a little tired of what is beginning to feel like a competition to out-pray each other–how large is our vigil, how beautiful is our prayer board with the pictures of all the fallen. Jesus did say something about prayer being done in private, to go into your room and shut the door and pray in secret. We have become very bad about following this directive.
But what I am most tired of is what can be summed up as the “your grief is our grief; your loss is our loss” rhetoric. Yes, we all lose when there is a mass shooting: we lose a sense of security, we lose a bit of dignity for not having saner laws concerning firearms. We have lost the potential of young people’s contribution to society.
But not all of us have lost equally. The LGBT community has lost, the Latino/a community has lost. The families and friends–the people who knew the victims up-close and personally–have lost most of all. And by saying “your grief is our grief; your loss is our loss”, without nuance, we fail to acknowledge the very specific, personal, irreplaceable grief and loss which belongs only to the people who knew the victims well and loved them. Not as symbols, not as emblems, not as martyrs–but as sons and daughters and friends and parents and lovers and spouses and siblings.
Love always wins. But particular, specific, one-to-one love, where the person is a person, not a symbol or a story, has to be allowed to acknowledge the loss it has sustained.
In 1989, my mother died quite suddenly. A friend came to the visitation. She wailed and called attention to herself in ways I found embarrassing. She kept hugging me, and saying how terrible it was–but after half an hour, it seemed it was more for the sake of her need for attention than it was for support for me or my family. (She had met my mother exactly twice.) My father asked me to find a way to get her to leave. We had other visitors to receive, and after all, it was our family, not she, who was in need of care and attention.
I wonder how much the Orlando families and friends might be needing their own space to grieve, in the company of those most affected, who knew their loved ones best. Who have specific, rather than generic, words of comfort and support. For whom the victims were people, not symbols, not stories.
Yes, we should support–sign petitions, send therapy animals, raise money to pay for funerals which were not expected to take place for many years hence, and of course, pray. But we also need to find the line where we are intruding on the private grief of families for our own needs. And not step over the line.
We’re all still a little shocked, a little numb, from the mass shooting at the Pulse nightclub in Orlando, Florida, early Sunday morning, where 50 people (including the gunman) were killed, and approximately as many injured.
I hope we are. Because we should be shocked when demonization of anyone unlike ourselves has such frankly evil effect.
A few years ago, when I was still trying to make church a viable option for myself, I came across Ken Howard’s book Paradoxy: Christian Community Beyond Us and Them. I started an online discussion in one of my LinkedIn groups, which quickly became acrimonious because Ken’s proposals require dramatic changes in the way churches do what they’re supposed to do. And as we know, no matter how badly it is needed, the churches need to change or they will cease to exist–sooner rather than later.
As a result of the acrimony, Ken and I developed a correspondence, collaborated on a couple of blog posts, and become good friends–despite never having (to our knowledge) ever been in the same room at the same time.
Because the events in Orlando are such a dramatic instance of “us” vs “them” in our national life, Ken has taken a bold step. He has bought back the rights to Paradoxy, and is offering it for free (a small shipping charge is required).
In the wake of this tragedy, and others like it, I urge you to accept this generous offer, and read this excellent book.