When It's Too Late to Ask

A good friend of mine is leaving the country, going home, and she might never come back. She isn't leaving because she fears deportation, rather, she hasn't seen her mother in many years. The older woman is getting on, is in her nineties. 

The younger begs her friends to understand: "I have to see my Mommy. If not now, when?" 

We know what she means.

The littlest things can make you think about parents when they're no longer with you, when you can't just call or visit anymore.

FD and I used to have a tradition, inspired in part by my mother. In December she would give me money in a birthday card (out of her social security), and I was to take FD to the opera. Mom, a Dancing With the Stars person, knew we loved the Lyric, but in those days it was cost-prohibitive; we didn't go very often. The idea, to get us out of our work-til-you-drop rut, was a good one. The subtext, maybe, think of your mother while you marvel at the theater, the people, the production.

How do you not honor someone's request that you go to the opera?

It is that time of year, the season and we're opera hungry. So I checked Groupon, found a great price for front section, main floor seating. Not trusting the system and worried that in all probability we might not sit together, I called before booking. (Having that symptom of OCD, being a checker, isn't the worst quality). The nice lady at the other end of the line reassured me that our seats would be together. So we're going. In a way, it's a gift from Mom, an honor to her memory. She would have loved that I checked.

Because of my friend's imminent departure, I thought the best gift for her might be a photo album. Looking through stacks of pictures, I found it impossible to stay focused, hard not to linger over the hundreds of pics that my parents had left behind, memories of us, of themselves as children, as young adults, parents. So many photos of themselves as friends. They had these roles, you know, and sitting on the floor in that walk-in closet, snapshots everywhere, I would ask aloud, nobody there, What is the story behind this one? Who is that? This really is us.

Whatever happened to that dress?

Who is in the way back? Where was I? Is this Logan Square?

There are other questions you have when you divest of your parents things, or decide to keep them.

Like: Where did you get this metal retractable100-ft tape measurer, and why have I never seen it before? It looks a century old! It might be.

Or: When you used that pinking sheers, when you sewed that dress you wore for my wedding, that long, cream, lovely dress that enhanced your Jackie Kennedy looks, what did you think about? Did you think of my brother, the one who didn't live to have his own?

Is that guy in the back of the picture a long lost cousin or a photo bomber? Where was it taken? Was I a happy baby? Did I laugh a lot? How did you forgive me when I crashed your first car, that Studebaker Lark, in the parking lot learning to drive? And when I lost that ring?

A person feels so powerless. How could so few people, only two, have this information? Your questions aren't something you can Google. No search engine is as informative as your mother, your father, not when it comes to something about their house, their reactions to things that happened, their lives, the lives of their relatives, friends, and yours.

Most of us have time to ask, time to get information, those extraordinarily important details, the ones that fill in the blanks. But we don't think to ask them because at the time, it isn't important, not then, not while we're middle-aged and our parents seem immortal.

And if we lose a parent young, it has to be worse. That parent isn't around to answer the simplest questions of youth, like, Should I date this guy? Should I marry that one? Can I just fail this class, because I hate my teacher?! A surviving parent might have answers, but might not be as approachable, or might become sad with your questions. Or you, a young person, simply don't know to even ask. What little kid thinks to ask?

When my younger brother and I spoke together for a few delicious hours on the night before Thanksgiving, we relived the last few years of our parents' lives. Thinking back, we had regrets, sure, but considered ourselves so lucky. We could make our own hours as professionals, and when the folks became physically vulnerable and needy, we could rearrange our schedules to help them. We spent some of that time trying to jog their memories on those drives to see doctors, or while checking their meds. The answer, inevitably: "So long ago. Who can remember?"

Those years flew by, the ones that might have been informative. And we, as the middle-to older-middle-aged generation, fall into the trap that our parents set. We talk about us, not them, when they catch us. We do it in short snippets, for that is all the time we have, and they settle for that. They catch us on the phone, between first and second shifting, or as we make lunches for the next day, or  drive an afternoon car pool, maybe run to a basketball or baseball game, varsity basketball. We could be trying to concentrate while filling out the parent portion of a student loan application, and the phone rings. There isn't much time to talk. And when they catch us, in those lucky moments when we are caught, when we're able and willing to give them the time of day in real time, on the phone*, it is about us, and about our children, because they direct the dialogue that way. Most probably, they do.

Not to give advice to anyone, gentle reader. . . but

assume that one day you will want to know how they kept that 100 foot metal tape measurer from you, the one from the Navy, probably. Or that the pinking sheers has some kind of history, and you don't know when or why your mother decided to sew her own clothes, and some of yours, only that they would be beautiful, an improvement over whatever one could buy retail. And your parents won't be there, probably, when these things occur to you, to tell you anything, and all you'll be able to do is assume, that at the time, whatever they did, they did with you in mind. Probably.

And you'll want to know how it felt when they bought their first major appliance, or a building, and how it felt to have to sell that building to make you a wedding. How did they cope with their in-laws, how did they make it work, if everyone seemed to get along, and how did it feel if it didn't work, if nobody got along.

Make it about them, this season, is my thinking. Ask the people who raised you to tell you the story behind the picture, because pictures jar the memory. Ask them about their transitions, how they handled the move, the first job, the first child, or their health crises, deaths of their parents, alcohol-addicted siblings. Ask about any firsts and lasts, because these are what we remember best, and these are also in the photographs in that big plastic Target container. Bring it out sometime before opening the presents this year, so the kids can hear the stories, too.

My friend, the one who is going home, is going to do that, too. And it is likely her mother will say, "I don't remember. It has been so many years."

But maybe, because her family was so far away, and they know how to use the phone, maybe even, she knows.

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*The telephone is this amazing appliance. You talk into it, hear someone talk back, no typing required.

P.S.  Below, a copy of the cover of the Sergeant Pepper's Lonely Hearts Club Band vinyl album. My oldest brother shared it with me the day it came out; he brought it home. We were 15 and 17, and I was delighted that he wanted to share it. He hadn't been a talkative brother. The questions for that guy, innumerable.

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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