Snapshots: My Glory Was I Had Such Friends and Blue Whale

New from Harper-Collins

(1) My Glory Was I Had Such Friends is a memoir, the story of a lawyer who needs a heart transplant at the tender, life-affirming age of 25. We tune in at 50 when she needs another. The first donor heart is failing quickly, symptoms painfully communicating that she is in trouble.

Amy Silverstein's My Glory I Had Such Friends-- glorious

The disease turns unbearable, and she has endured a great deal. This is an emotionally strong woman, but we all have our limits. Pain medication can kill her, slow her heart to a stop. She is going it alone, white knuckling pain.

Not easy reading. But it is chick lit, and we love any book with the word "friends" in the title.

And Amy has friends, many of them, amazing women who will leave their daily lives to travel across the country, tend to her when she needs them the most.

How in the world does this happen? How are some people so blessed, or so lucky?

Once I asked a man why he married his wife. He told me that he had to marry her. She was the only one, outside of himself, who still had all of her friends from childhood. Not many of us can say that.

To have friends who will stay with you when your life is at its most challenging, this is nirvana, heaven on earth. As it is written, not sure where, but someplace holy, probably the Ethics of the Fathers, A close friend is better than a distant relative.

On Saturday, Shabbas, the last day of the week, almost finished with this biography, I'm looking around the sanctuary, checking out who is here, listening to the reading of the Torah, all the while wondering:

If, G-d forbid, I were in this position, sick and stuck in a hospital prison, waiting for a donor organ to come through, not knowing if it would or it wouldn't be on time, could I count on any of these women to fly to California and stay with me for a few days, then maybe come back and do it all over again? 

After all, being alone in a hospital room for months, isolated from the usual and customary everything, well, that's pretty depressing.

Amy has a rotation of super stars, and they are furious, no distressed, that she has lost her will to live. Her irritability, her anger, her pain, all of it is on the surface, she can't hide a thing. She is in agony, breathless. Her pacemaker, working to keep her heart beating, mercilessly, repeatedly sparks all night. It is electrifying, begins just as she dozes off. But her friends are there.

There will be a decision, and it is hard for some of us to even read about this, wanting, like Amy's friends, for her to choose life. Is there really any other choice? But she has a choice. She can legally let go, refuse treatment, choose death as an alternative. I want to close the book, stop reading.

But she writes too well. The book is beautiful, so stopping is impossible. As a coping strategy, Amy quotes poetry, by heart. (Who does that?) She never whines. You don't want her to die. You are her friend, too.

Not fair to spoil it any further, check out My Glory Was I Had Such Friends. Enough to say that it is a lesson in friendship, how to be a friend. It isn't easy.

(2) There's something else going on, the Blue Whale Game. This is painful, too. This is about who not to choose as your friend.

A 16 year old girl (her name is protected) kills herself, identifies with the blue whale, a species that voluntarily beaches itself to die.*

The girl has followed the rules of a Russian internet game, one that has claimed many teenage lives. The creator is a 21 year-old psychology major, Philip Budeiking, since found in Russia and arrested. But the game continues in other countries, has other administrators, or "curators."

News sources have reported two teenage suicides in the United States associated with Blue Whale Game. There are likely more.

The "game" takes place over 50 days. The curator gives players daily tasks to accomplish and requires them to submit photographic evidence that they have completed each, keeping their communication private.

The tasks leading up to it include watching horror films, cutting their lips, incising an image of a whale on their arms, sitting on the highest rooftop they can find, legs dangling. The are to visit the ocean, find railroad tracks.
. 
. . .the curator sends teens to scope out the location of their deaths in advance as one of the challenges. . . Each task becomes riskier.

The final task is to kill yourself. Jump.

130 teen suicides could be linked to the game, because almost all the victims were in the same internet group. However, it later said that only 80 of those could be proved . . . definitively linked to the game.

Oy vey. Eighty validated suicides related to a . . . game.

Teens are told that once they begin the game, there is no turning back, that the curator knows who they are and he will come after them.

To see a list of all 50 challenges, go to Youtube.com.  Suffer through the info-video by Anonymous titled Blue Whale Group Exposed- 2017 #OpBlueWhale.

 

I just couldn't bring myself to link to it, or embed it. This is too scary, too upsetting. They have enough attention already, these sociopaths.

But tell everyone you know about the Blue Whale game, because people have to know these things. Warn friends, talk to parents, and especially talk to children.

Maybe it has never been harder to be a parent, or perhaps, even a child.

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*There are many reasons that the blue whale might beach itself, none proven conclusively.

Me Before You: The Six Gift Take-away

Me Before You: Joj

We're already in gift-giving season. My favorites are the intangibles.

Yesterday was Veteran's Day in the USA, and coincidentally, I had just finished reading Me Before You., a book about disability. The story doesn't relabel disability as differently-abled. Will Traynor, before his accident, could do almost anything, but he no longer can.  

My daughter-in-law tossed the book at me, had knocked it off in a day. But it seemed sophomoric, at first, took me awhile to get into. But when someone else really likes something, you try a little harder. The word in Hollywood is that Emilia Clarke of Game of Thrones will star in a coming movie as Louisa Clark, no relation, and Sam Claflin of Hunger Games is a likely Will Traynor. So we'll keep the spoilers to a bare minimum.

  Chick lit, sure, but much to take away.

Me Before You-Jojo Moyes

Louisa Clark is an ordinary enough person, a really good person, the type of young adult who steps up when her upper-middle-age parents begin to struggle financially. She hands over her most of her paycheck, lives with them into her twenties, in a room the size of a closet. Although the young woman has troubles, she spares her family the grief and worry, keeps too much, perhaps, to herself.

Like most of the female gender, Louisa suffered a Negative Event in her not-so-long-ago past, that affects her adult choices. We're not sure if it is conscious or not, but she consistently chooses the safe, the familiar, the paths that eliminate risk, except in her choice of clothes. She can't help but attract attention via wardrobe. Some things, predilections, choices, die hard. Her clothes are the color in this novel, the delight. 

When she loses her job as a barista at a coffee shop, Louisa is forced to take a care-giver position. It is that or pole dancing. She keeps company with a man who has lost his ability to move his arms and legs, who is stuck in a motorized wheel chair. He used to do everything, ski, boat, travel, wheel and deal. Will Traynor had it all, until an accident took the capacity to enjoy whatever was left.

When we meet him he is paralyzed and totally helpless. He has a full-time nurse to change his colostomy bag, administer meds, bathe, dress, and get him in and out of bed. The patient is angry, sarcastic, hopeless and tortured. Life is physically and psychologically painful always. But Will has money. So we think: he has options, control over his future. There is a piece of us, those of us who are not in that one percent of the privileged wealthy, that assumes money is the answer to everything.

His emotional care giver, Louisa, has positive energy, a happy disposition. But anyone attending to Will is likely to be cut down. Anyone wishing to help him will fail at the purpose for hire: 

The mission, set out by Will's mother, not Will, who knows better: Motivate him. Help the boss find enjoyment, something good about living, a reason to ultimately choose to live it out, rather than end it somehow, some way.

Can Clark do that? Can anyone keep smiling when charged with making a miserable person happy, especially one with who refuses to embrace any semblance of happiness?  What do any of us do when we have a morose, depressed partner, parent, friend, or child. How do we stay sane? How do we stay positive, impervious to the infection of depression. For it is contagious, make no mistake.

How to do that is the real lesson of the novel, and a powerful, psychological take-away. Call the strategies  six gifts that a caregiver, friend, or relative can give to someone with a disability, gifts that might be appreciated, even if that person is extremely grumpy, especially so.

Because disability is much more that ____ happens. (Those of you who disagree or have different thoughts, please share in the comments below.)

(1) Gift One: Choice

Choice is usually compromised by disability. Able-bodied persons make choices all the time, from the type of tooth paste we use, to sleeping with or without socks, to running a company or merely putting in time at work that is either productive, or not. As able-bodied people, we can switch up what we want to do, don't depend upon others for most things. And the process of choice, for most of us regarding most things, is unconscious. 

Not so for those struggling with severe disabilities, the differently-abled, forced to hand over, surrender free will. There's no time for it. The work, the time, the energy, is in pain reduction, ambulation, feeding, eliminating, getting through the day in the most utilitarian fashion, getting the simplest things done. As the potential Great Eraser of Autonomy, severe, totally debilitating trauma, accidents, foster reliance upon others, dependency.  And independence, its opposite, is how we define adulthood. 

So enabling any choice, even little choices, is showering presents upon someone who is debilitated, who has the luxury of only too few. 

(2) Gift Two: Drop all assumptions. 
Like any of us in relationships, a caregiver is likely to project her own needs and wants in any given situation with her charge. It feels like empathy, but isn't. There is no real knowing what another person is thinking or feeling, not without asking. And yet our default is to behave as if.  This will make a grumpy person even grumpier, because usually we're wrong. Best to ask.  

To lose those personal projections, keep in mind that the protected classes:  race, color, religion, ethnicity, age, military status, gender, and yes, disability are legally protected because people treat people who are different, differently. They make to many assumptions.


(3) Gift Three: Teach less, learn more 

We are all different. Thus there is something to learn from everyone, whether they belong to a protected class or not. Each one of us is a foreign language. Try to learn a new one whenever you can.

Caregivers, like any service professionals with some training, teach. There are right ways, wrong ways of doing almost any little thing, so imparting the shoulds is a necessary evil, a part of the job. But to teach there must be a student, a willing audience, which means a hierarchy, one has more status than another. More important than relaying the shoulds, the empirical data, or knowledge, is hearing the pain, the frustration, actively listening and validating. There will be time to teach.

(4) Gift Four: Share

Most of us keep our shame, our lives, what makes us different, to ourselves. We don't trust others not to blab. But that concept: You're only as sick as your secrets, is worth considering, especially when in a relationship with a person with obvious trauma, even as a caregiver. The one with the physical impairment cannot keep his a secret. It's unfair.

Our emotional disabilities, the things that hold us back, are worth sharing. The details aren't necessary right away, we're entitled to our psychological privacy. But shame about negative events is self-destructive, implies a fear of exposure, anxiety, something missing socially. The way back is sharing some of it. Sharing with someone who has a physical disability works both ways, helps the one who shares, and the one who listens.

Why? When someone shares with us the process elevates our status. We merit the share, feel important. This is the intimacy, the glue of relationships. She shared. I must be good, trustworthy-- worthy of a good tell.

(5) Gift Five: Absorb the patient's frustration

Don't take anger, depression, sadness, frustration as your fault, although you may certainly have a part in the drama. Yours, however, is likely a very small part, if caregiver is your role. Taking negative affect (anger, frustration, depression) personally, minimizes the role of fate, the role of circumstance, luck, and the roles of others. We're not that important. Our job is to let it happen, another's negative affect, to encourage venting. Venting is survival, elemental to healing emotionally. Hearing it is a part of the job.  

(6)  Gift Six: Respect resistance. 
Helpers usually encounter resistance. When a routine is rejected, when someone who needs help pushes us away, best to wait, as long as possible. This means enduring long silences, and when they are long enough, asking for suggestions. Resistance is usually about powerlessness, lacking control, and we have to pay homage to it, because accepting that can take a long, long time. 

That said, some people like it that there is someone in bossy control of a situation. 

But the silence. The silence. Silence in any situation, especially a combative, resistant situation, can a good thing. Unless that person wants us to talk, to sing. Most of us aren't hired, not usually, to entertain. We have to get comfortable allowing our friends who have lost so much of what we take for granted, the chance to grieve, to resist.

Five Stars, Jo Jo Moyes. Not just chick lit.

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