true to form

The form came as an attachment to the expected materials. I barely gazed at it as I went on frantically through my day, my week, and then opened it once more. What’s this?

It was an assessment, for all intents and purposes. A self-assessment, the kind I have seen a thousand times before, the kind that is kind to the user, friendly, caring. It gives some ideas about how to make decisions, things to consider, lines where the user can list his strengths, his needs, and finally, his decision. It gives instructions that tell the user that as we are overwhelmed with the choices we must make, we should give ourselves time, patience, ask for help from our providers. We should network.

It all sounds so nice. It is caring, a respite from the cold world in so many respects. Isn’t it?

My reaction was to tear up the form.

I found myself nearly in tears as I saw it, thinking of all the people I have seen throughout the years who seem most grateful when I walk in and cut the bullshit and give them the information they need. I was thinking of my own reaction as I imagined myself receiving it: I would shut down. I would feel betrayed. I would feel that the person who had come in to help me was now in my kitchen, judging me, judging my life and what I want to do. I would be angry that this new person even expects to know.

I have never sat with a family and helped them make a decision–I think that is their job. Honestly, they don’t want me there forever. Well, sometimes they do. And that is never in the game plan. Forms like this, when accepted as useful, set people up to think I will be their friend.

Most people seem grateful when I sift through the grains of services and programs to find what is relevant to the questions they ask me. I cannot think of a single time that a person I have worked with has ever made a pros and cons list, at least in front of me. Generally, when a person is at risk of nursing home placement, his needs in the community are glaringly apparent.

If I am in a crisis, or if I am not, I want respect. I want dignity. I want to be treated like the person I have been all my life: able. I want to be treated like a person who can make decisions.

I was thinking as I talked to a friend who does business consulting. I know what we counselors should call ourselves. We should be consultants. I consult with people, help them get what they need, and go on. They hire me, in a sense (my services are free). They use my services, and live their lives. And that, really, is the kindest thing.

consumer control

I am not thinking about people who eat at McDonald’s when I think about consumers.

Nonetheless, I have been reading about McDonald’s updates to its Happy Meal. It seems safe to say that almost anyone who pays attention at all to nutrition when sitting down to a meal receives this news with the skepticism it no doubt deserves. The change, as far as I can tell, amounts to throwing a few peeled apple slices into the mix and billing it as the new healthy Happy Meal. It would be an enormous surprise to find anything else.

And you know, there is a time and a place for the occasional old fashioned unhealthy Happy Meal with its plastic junk and french fries. It is great. The thing is, McDonald’s and its imitators do not fill the market now for birthday parties and fun outings so much as they dominate the easy-to-pick-up meal market. In that world, we consumers have little choice. And that is terrible.

I wish–over and over–that some other entirely different-minded and not-too-expensive healthy food service could put in a damned drive-through and go nationwide, even in the dinky little places that seem unlikely to produce customers.

Seriously.

The need for fast and easy is real, like it or not. You know the scenario: the baby finally fell asleep in the car seat–a situation that is about to come undone because the four year old has not had lunch yet, and that appointment that was supposed to end at 11:30 lasted instead until 1:00, and we are crabby, still another hour from home, and the apple (unpeeled) and the cheese cubes are all gone and have been since 11:45. Sure, parents should have planned better. But they don’t. Stuff happens. The golden arches loom, and short of leaving the kids in the car to run into a grocery store–a risky deed that will not go unpunished, I assure you–there is no choice in most places.

But as I said, I am not thinking about McDonald’s when I think about consumers.

I am thinking about healthcare. I am thinking about home-based services. I am thinking about the concept of consumer control. McDonald’s does not understand or care. Indeed, they do not have to. We as a society do not understand it either. We as individuals might care.

Those who do not have control and want it do understand it very well and care very much. Some of us stand on soapboxes with our great ideas, and some of us never give up. The agencies that really have the control form consortia that are supposed to bring people to the same table to discuss these issues, to meet needs better.

We so rarely find something so simple as… cash, coordination, and resources. In fact, we do a terrible job of meeting individual needs, and instead rely on what is available from a menu whose whole creation was skewed in the first place, based on whatever group happened to win its point on the day the menu was created. Too often, we “take care of” our consumers by serving them the default, whether they want it or not. We complain if they refuse to take it, too: “refusing services” setting off red flags all over the place, especially if the person involved is over 60 or under 18.

Fact is, we assume that people who cannot do some things without assistance cannot do anything without assistance, including knowing what they want. We make condescending forms for them to fill out, and forget that they are individuals who have probably seen and done far more in their lives, made life-altering decisions, fought in wars, raised families, had their hearts broken, advocated for themselves enough for us–the “services”–to be sitting in their living rooms. Or they are families who have already sat in countless doctors’ offices and faced the glaring eyes of judgment, still not quite sure what the future will bring. We try to help them with everything they do not want, from the “recommended” service plan to unsolicited advice (while our foot is in the door) about “making good choices”.

We come in with our healthy happy meals and expect for people to take them thankfully. And if not… well, then, at least they have to order from the menu. Let me get the menu out. The fact that there is a menu at all is the same as consumer control. Right?

We assume that consumers should be grateful when we give a small, peeled slice of what they keep telling us they truly want and need, and pat ourselves on our holy backs when they say “Thank you.” We pat ourselves on the back when they call us back and ask for more, when they pull up to the drive-in and order another happy meal. They may be doing it in resignation, but they keep coming back, and we fool ourselves into thinking we have been successful. If we are particularly out-of-touch, we take credit for saving people.

This is consumer control?

More please.

Please. I rant. I know it, and I know that change is slow. I know that every time we do create opportunities for more consumer control, we get a little closer to something better. Some things work well, some incredibly well. I want the world to change right now, for us never to assume that a person over 70 wants to be called “honey” and for people to stop patting my son on the head when he is in his wheelchair. I want to say yes when someone asks me if I know where, or how. I rant, because I don’t want to save anyone, and I hope I have the sense to quit my job the second I think I can. The power is theirs. I want to listen. I want to tell a story. I want to discover. I want to create.

hello

It is summer, glorious now in the brilliant clear days that seem so uncharacteristic of my youthful summers, or even those recent ones, but of the rare days in Vermont sometime after the mud and before the bugs. Surely these are rare days.

There could not have been so many days that seem to inhabit my memories of summer, but somewhere in the mid-1970s I can think of nothing but nerf balls and chlorine and Seals and Crofts, Gordon Lightfoot, more. The radio, not what we could hear at home, but what the lifeguards put on at the pool, floods my thoughts now.

And I am transported immediately back to floating in the cool water when I hear the one-two-three-four”hello it’s me” coming from my own car stereo, realizing that I put it there, on that album I had in the glove box.

It hit me then: Todd Rundgren is a genius. He transports me not so much to a swimming pool in my head as to a now-too-rare feeling, that teenage feeling of hearing a song and thinking, “Yes, yes, that’s exactly what it’s like,” and then thinking how marvelous it all is that a song could so accurately capture that feeling, that experience that means something entirely different to the next person–or even to me now, me then–and is therefore universal, and perfect, and worthy of playing over and over, at least for a while, until the feeling fades and other things move in.. until later when the song plays again and is all the stronger then for the repetition, and the memory of that, too.

I used to think a lot about music. I used to analyze what was going on, know all about the bands and the writers. And I was indeed curious enough then to go poking around Todd’s intriguing website. Maybe my zeal in this has faded over the years. Or maybe I just don’t care. But it still fascinates me that we can create, we can change lives, frame them, make them something more beautiful, and lasting, just by stepping out, by letting ourselves do it.

emerson

This month, I subscribed to a challenge. Write, it says. And to aid in this endeavor, I get daily writing prompts from other writers who are inspired by Ralph Waldo Emerson.

Over the weekend, the prompts threw me a bit. It started with Friday’s, which required the writer (me) to ask myself what I want most, what is keeping me back, to put it on a sticky note and think about it for two days, then write.

Well, this does not work for a same-day blog entry, and yesterday’s (writing about some place I dream of going before I die) was also a bit… overwhelming. So I did not write. It normally would not stop me–the first day I wrote nothing to do with the prompt given–but this time I wanted to think.

And I have. Today’s prompt asks me to think of what I would do that makes me live–as in, what would I do if the end were imminent?

So, actually, all of these things tie in together nicely. First off, no doubt in my mind, I want to go back to Paris. Badly. Now! I have been there, and there are many, many other things I intend to see before I die, but I miss myself speaking French, being there, living and breathing French. It was the energy of the city, the strange pretentions, yes, but also that feeling that those things–art!?–do matter, that life is full of opportunities that can be made a bit more beautiful everyday.

And it is this that makes me live, as well: writing. I love this, love, to live and all the more to think of how I will express it to someone else. I think of how I dream, and see, and garden, and make love, and how I can not only capture these moments, but make them something grander… perhaps not more grand, but sufficiently grand. Because life is.

So strange.. I spend time cleaning, and I need to. I do not do it as much as I should, but then, shoulds are such a problem. Shoulds get in the way of life, and of the purpose of this exercise. What makes me live? Why, writing! And talking to new people, hearing stories, laughing and eating great food. I love to feel the wind in my hair while I drive too fast on Storrow Drive, across the Champlain Bridge into Montreal, anywhere else, as I talk up a stranger on a train bound for Barcelona, then spend a week with the family. I love, this, love people, love the possibilities in a forgotten alley, in a garden courtyard, in something hidden away and intensely pleasurable…

what does not kill you

I see a lot of bad things happen to people. It always astounds me to see how different individuals react to enormous changes in their lives.

Once in a while someone tells me that he thinks he is lucky–for whatever reason, for whatever new perspective, new discovery, unnoticed detail. In every single instance, I have to agree. Yes, these people truly are lucky. They are lucky, because they have great strength, for one thing. But more than that, they are lucky because they are still able to grow.

If we live full lives, tragedies of different sorts are bound to come to all of us more than once. The degree of hardship is relative… some people endure immense suffering, sometimes nearly unimaginable. There are some things that really do destroy a spirit. Even then, though, there are those who survive, even thrive.

How can we be compassionate without any sense of the range of joy in life? Resilience, I believe, is compassion.

today

The sky is a kaleidoscope of emotion, changing ever so much, one moment shedding its tears and sighs, another its fury and passion, here, across the placid moment, reminding me of exactly what it is going to take…

bicycle

Riders who share the road with me down these small downtown streets fall into two categories: those who are riding for recreation, and those who are riding for transportation.

Recreational riders wear helmets. Transportational riders do not–not around here, anyway. Transportational riders also wears jeans, and ride on the sidewalks. If there is no sidewalk, they ride on the walking side of the street. They have crappy bikes, and often look as though they really are not going anywhere in particular. Or maybe they are going places they would rather not go. Once I saw a guy smoking a cigarette while he was riding. These transportational riders are never female. Not around here, at least, not so far as I have seen.

I like having a bicycle for transportation.

When I used to do it often, I wore my bike-functional work clothes, and a helmet. I had waterproof gear, and a lock to guard my precious bicycle. The place I worked had a bike rack. I see this set-up pretty often in places like Boulder and Cambridge.

In the suburbs, though, riding a bike to get around is sadly rare, and questionable when it happens.

I wonder if we feel unsafe devoid of secure enclosures.

I, too, look at people on bicycles around here with suspicion. If they are not outfitted with high-end road bikes and Pearl Izumi, my first thought jumps to suspended license, and all the judgments that spring from that judgment. It is not fair, not unbiased, but possibly true.

I should ride my bike to work now. The should is an entitled opinion, I realize, bicycle riding activist more elite than the elite car driver. Especially when riding not out of necessity, but out of a sense of moral responsibility. Snob. That would be me.

The ride to my work is unattractive, and we do not have a bike rack, and sometimes it seems impractical when I am on the road a lot over long distances. Excuses. But pretty real ones: this town is just not equipped for riding a bicycle regularly–not sure the hospital has a bike rack. Does the mall? Shopper’s World? And gee.. is this the best place we can think to go? Actually, I would not leave my bicycle outside many of the places I go.

It is so strange, the things that seem undesirable in a town like this, if Shopper’s World is desirable. And then, I think about the things we value here in this divided town. I hate the division, and yet, I sometimes understand it. I hate the poverty and the reasons for it, hate that it is so hard to escape it, especially when immersed in it, hate that we scorn those who do not have, those who do not do, and at the same time make it nearly impossible to climb out of the hole once in it… And I hate seeing the bicyclist in jeans who meanders aimlessly, lawlessly upon the town sidewalks.

I wish that he rode with some dignity. I wish he had a helmet.

I wish he had somewhere to go.

dehiscence

My daughter’s incision reopened yesterday.

It was not a cheerful discovery, as you might guess, but a reminder of all that has happened. The nurse assures me that it is good: her body is pushing out the bad things that remain. It is not an easy thing, this healing. It is not over.

I have moved my office from the attic to my dining room for the time being. I miss the lofty space in one way, but rejoice in the chatter in the other room now when I hear it. Laughter!–then tears.. because it hurts to laugh with an open wound.

I wish that I had been the one torn from the inside out. I know this is every parent’s wish when a child is suffering, but it must always be as intense a feeling every single time. Just cut me open instead.. If only that were possible.

But she will get better, and do great things. This is a special girl; she always has been. The type who found another new friend in the new kid alone on the nursery school playground, the one who always gives up one if she has two. And often splits one in half if she only has one. I have to wonder what such a traumatic event–and none the less traumatic for the quality of care she received once sick–will mean to her later?

I know what it means to me. It means I want better. It means I want it never to happen to another person.

Sometimes we never know what is inside that needs to come out.. until it does.

fool

Snow.

It is enough to make the winter-weary among us a little crazy. April showers? Looking out at the street, the weather does seem to be playing a bad trick.

But this time, the snow is already beginning to melt, almost as it falls. The trees drip, drops crystallizing, hanging on just for a little while. Fragile like sugar, this will never last.

And just for now, this kind of day really is quite lovely.

It is a slow Friday, in a warm house–perhaps the last cozy day of the season.

Might as well enjoy it.

communication

This week I am sitting on the other side of the hospital bed. Not the one where I come in as the professional and talk to the family member who is holding on tight as the whirlwind of white coats whiz by with more and more opinions about the person who is actually in the bed.. Nope. This time I am the one holding on tight.

The person in the bed is my daughter, rushed downtown last week after a week of agony that her primary care office believed was a tummy bug.

Surgery happened almost immediately, and the appendix had ruptured, probably had been ruptured for a week according to the surgeon. Thank goodness no complications…

But the worst part of the experience has been the lack of communication between the various people caring for my daughter. I do not think it happens out of any intention of cruelty; in fact, there are obvious efforts to make the whole hospital experience more pleasant, especially in pediatrics. Playrooms, play therapists who come in with the phlebotomists, emphasis on pain relief…

But all these efforts can be so quickly undone by highly graphic descriptions of upcoming procedures discussed right in front of a child, by promises broken, by one hand not knowing what the other hand is doing. It happens out of lack of coordination, people working in vacuums that may well be efficient for the functioning of the system, but not for the people in the beds.

This is hardly news, from what I hear. But not less frustrating. As staff are stretched beyond their limits, efficiency must rule. But efficiency, it seems to me, involves the teamwork that has seemed so lacking. In many ways I am sure that we do better now than we used to around patient experience. We can do better still.

The irony to me is that as medical associations promote the medical home model, we can so easily lose this continuity in an emergency situation. Or perhaps hospitals–some hospitals–are not yet meeting that same challenge, that same demand for coordination of care to eliminate misunderstandings, mistakes, and mistrust.

More on this soon…