Passing through change

I woke up from anesthesia with the sensation of having slept a long time, though it was probably no more than an hour and a half. My left eye was covered with a hard plastic circle taped very securely to my face. I had oxygen tubes in my nose and various things on my arms. My mother, who came all the way from America to help me with the kids while I recover, said I looked like the Borg. 

For nearly twenty-four hours, I wasn't allowed to take off the patch or even peek at the world. My husband joked that the surgeon had probably removed my eye for experimentation. I could see after images pulsing in the eye for hours.

Creative Commons image by Lolaa of Flickr.com

Then late at night, after all the nurses had gone away and my hospital roommate had finally gone to sleep, my left eye began experiencing flashes of light at the lower periphery. That is one of the major signs of retinal detachment. 

For a moment, I was seized with terrible fear. I thought of calling the nurse, but these were general nurses from a hospital word specializing in nose and throat disorders. I had told them before about the throbbing after images and they were kind but expressed no interest or knowledge about eye conditions or warning signs. I knew they would not do anything before morning. 

I had also been told that stress, including fear and anxiety, was the surgeon's primary warning in terms of risk factors. He wanted me to stay calm and stress-free to avoid dangerous inner eye pressure for two whole weeks.

Somehow I lay still in the darkness. I thought about my conviction that I must go through the the dark time, including the fear. Once I got up to look out through a slit in the blinds at the super moon with my very blurry, unoperated, right eye. Then I lay back down. And finally I slept, mainly thanks to the after-affects of anesthesia. 

In mid-morning, I was able to talk to the surgeon again. The light flashes had subsided and he was not concerned. He tore the tape off of my face and I blinked my sticky eyelashes open.

This surgery was not meant to cure my vision impairment, but rather to keep it from getting worse. It entailed getting rid of cataracts and implanting a lens--much like my high powered contact lenses but inside the eye--making contacts no longer necessary.

My first impression was still blurry and then strangely shortened and squashed. The surgeon's fingers were unnaturally wide and stubby as he held them up for my inspection. But eventually the image stabilized a bit... yes, clearer than before.

As a child I used coke-bottle-bottom glasses that let me see a bit more clearly. Then when I was nine, I was introduced to contact lenses in a doctor's office. The contacts had much greater optical power than can be had with glasses and I was startled to find that the wall on the other side of the doctor's office was striped, rather than a solid color, as I had always believed. 

This wasn't exactly like that. I could see no further than I had before with glasses or contacts, but this was without such aids. I could see the broad smile on the surgeon's face, at least enough to know he was smiling. Though I noticed that even after the picture acquired reasonable dimensions, everything still looked a bit blue. 

At first I wondered if they had given me a tinted implanted lens. But when I turned and saw the sky through a window, the difference became more clear. The bright light and the motion sent twinges of pain into my left eye, but the sky outside was a pale, sparkling blue.

The other eye--the one that had not changed over night--saw an ugly grayish yellow haze, like the smog of a Bohemian winter, in fact, it was bad enough that it reminded me of the first time I came here in 1992 and the Communist-era coal plants were belching out soot and coloring everything that same sickly grayish yellow.

I tentatively asked what color the sky was and was told that it was white--high clouds. Both of my eyes were wrong.

I was sent home to lie in bed and recuperate from the poisons in the anesthesia and from the surgery itself. I have a lot of time to ponder the color of the sky. 

The grayish yellow was likely caused by the cataracts. The sky was also dimmer in that eye. The blue... well, it is somewhat of a rule that when you suddenly see things from another perspective or through another filter--whether that is physical or, say, the psychological filter of a major political change--you tend to lean extremely to that side in your perception. It has to do with what you consider to be "normal."

In the world of optics and photography that is called white balance. It's the concept of "normal."

Until the moment the patch was taken off, I had seen one way for so long that once the window was clean, my brain no longer knew what normal was.After several days the effect is fading. My brain has adjusted the white balance for each eye separately, so the world looks pale gray again--the ordinary Prague winter of 2016. 

I light a candle on the window sill and sit up in bed. The evening light is dim enough that the light of candle and the dusk don't hurt my eyes. I see two candles now, one almost a real candle, a little spark outlined against the gray, dancing just a bit with the movement of the air.

The other candle is the one I have always seen in the early morning or late evening, when I don't have contacts or glasses on. It is a fuzzy fractured ball of blur, mashed to the left a bit with a break in the middle and several times larger than the actual candle flame. 

That candle, the candle only I have ever seen, will be gone forever soon. Whatever comes, if the surgery takes hold or if--by some unexpected chance--delayed shock causes retinal detachment, either way after the second surgery, I will never see in that old way again. 

A small pang of sadness rises, inexplicably inside me. I have no great love for my extremely blurry vision. I don't see that way most of the time anyway, because I wear some form of correction almost every waking moment. But I am surprised at the associations I have with that soft, squished and fuzzy world. It makes me think of rest, nighttime waking and comfort when I'm sick. This is probably because it is only when I'm in bed that I didn't wear glasses or contacts. 

Now I feel a niggling reminder in the back of my mind. The clearer eye makes me think I need to take out a contact lens. Somewhat clear sight in bed was always a sign that I had forgotten something important.

I am sure I will learn to be comfortable with these different eyes. There are many things that will be easier. I won't have contacts to take out when I go swimming. They won't itch. I won't have to religiously schedule the hours when I can safely wear the thick contacts and those when I have to wear the inferior glasses to protect my corneas. It is not hard for me to explain to my inner self why the new way is better.

And yet it is still there, the little sadness for a way of seeing that will soon be forever beyond reach. 

People have often asked me how I see. It is hard to explain how I see with contacts, because that is the best I have ever seen. To me the answer is that I see clearly. It looks clear to me. I simply don't understand how other people can see things at a distance that I can't. Ten feet is just how far clarity extends. Sure, I know in theory--from physics that other people can see further but it is hard to imagine.

On the other hand, I can explain a bit how I see without contacts, because that too me looks blurry, soft and distorted. But now it will be only something I explain to others, not something I see. Over time, I will forget the way the world looked from there.

There are some in the disability community who argue that "disability" should not be called that at all. It is only a difference and should not be considered lesser or a lack. This is strongest among the deaf, who have their own language and community and as long as they don't have to deal with the rest of us, they are quite happy and don't feel dis-abled at all. They don't miss sound. 

In that way of thinking, my vision could be considered just different. It does in fact have a few--if minor--technical advantages. My extremely nearsighted eyes before the cataracts and the operation, could read very tiny print, inspect finger prints and so forth. I would sometimes take off my glasses in order to use my eyes as a natural magnifying glass.

But the cataracts put an end to my excellent close vision and made it easier to part with that blurry and fractured world that meant comfort, drowsiness and rest.

I am ready now, ready to move forward and to change. I have truly acknowledged what I am leaving behind.

"I don't have to be friends with everybody!"

It's so common that many people might consider it normal. A group of kids are playing with a soccer ball and one boy--a bit taller than most and with a forceful personality--gives orders. The others follow the orders gladly and one of the orders is that they don't play with "that kid." 

But common isn't necessarily okay.

I was always afraid my kids would be "that kid" because they're different from the other kids in our town, visibly and controversially. But when it happened, it was at a support group for kids like them, kids of a minority background who were supposed to be their best allies. And my kids weren't the one left out. 

Instead it was one of my people. The kid with a significant physical disability. It wasn't due to his behavior or personality. He's a fun kid. Because he was booted out of the boys' fun and he loved card games, I played Uno with him. I could wish my kids were as quick with Uno. 

And no, there is no excuse. This was not one of those situations where the child left out was too timid or too aggressive, didn't ask to be included or just felt offended and left. He was told to leave.

The others chased him with sticks because they wanted to play cops and robbers and he was handy as a robber. If he was near them the game was always everyone against that boy. It was all in fun. They never hurt him physically, but they absolutely would not play WITH him. 

Creative Commons image by Guilherme Jofili

I sat my kids down privately to understand the issue. 

"The leader doesn't want him to play," my daughter said

Why does he get to decide?

"We want him to be the leader. He knows how to make fun," she explains.

My son, younger and less verbal, just shrugs. He admits he doesn't feel great about leaving that one boy out, but he wants to play with the boys. He'll go along with whatever, even if it makes him feel a bad sometimes.

Finally, I directly witnessed the ringleader directing kids to gang up on the boy with a disability. So, I told the ringleader he was in time-out. He went to time-out but told me, "You can't make us play with him." 

The mother of the ringleader arrived shortly and took over. She told him, "That's not nice," and let him go. 

I gritted my teeth and started another Uno game. 

It wasn't really a new issue in this group, except before the issue had been me among the grown-ups. We have come to this group for four years now. During the third year, I was extremely frustrated. The same group of people met each time, and I still did not know who was who because people were never introduced again and I couldn't see their faces. When I asked, I was given awkward answers and then avoided.

Other parents formed little groups of friends within the support group and I was left on the outside. Once I was even explicitly told to give up my seat at a lunchroom table because a large group wanted to sit together and I wasn't invited. I was directed to sit outside the lunchroom in an area where there were large tables but also wasps that made the area less desirable. 

It was far from a "support group" for me. I only went for the kids to be with peers like them. But then one of the organizers decided to make the theme of this year's meeting be "the inclusion of people with disabilities," because her friend with the disabled child would be attending for the first time. 

I was asked for ideas for a disability awareness program. They wanted me to develop a blindness simulation, so people could see how rough it is to be blind. But the only ideas I am particularly interested in have to do with the social aspects of disability.

It isn't that rough to be blind. It's occasionally inconvenient. But it is rough to have people react to you being blind. 

The organizers weren't happy. My suggestions were ignored and the theme went ahead with little physical demonstrations of blindness and deafness. Gritting my teeth, I focused on the one thing I could explain in this context--that is the difficulty of recognizing faces when you are visually impaired. And somehow I managed to get through to the adults for the first time. By the end of the week, I knew everyone's name and could identify most by voice, stature or idiosyncrasies. It was a vast relief and I was even included in some conversations after that. 

Still, the child with a disability in our midst was left out and forced to play card games with the grown-ups. 

Toward the end of the week-long workshop, a guest came to give a presentation to our group. He was a man of the same minority background as the children in the group. Most of the guests to such a group are women, people in "caring" professions. So, having a male guest was a big deal.

The little boys were agog at this role model. He was buff, brash and a man. He had grown up in the ghetto and become the first minority city counsel member in his good-sized town.

He quickly noticed the disharmony among the children. As it turned out, once the disabled boy had been fully rejected from the pack of kids, the leader needed another target. And this time it was my son--quiet, not too well coordinated and younger than most. 

He joined me at the Uno table and pretended he didn't care much.

Our male guest gathered all the kids who had been involved in the shunning of the boy with a disability--and most of them were boys in this case--out on the soccer field and talked to them. The dynamics quickly became apparent. 

"I don't have to be friends with everyone," the ringleader said. "My father says I've got to be assertive. It's his problem if he's too weak to be in our club."

The man tried to reason with them and talked about compassion. He asked how they would feel if they were left out.

"I won't be left out," the ringleader said. "I'll make sure of that."

The other kids watched their leader and he did not back down. They learned. The adults were unwilling to lay down a law on this. Shunning may not be nice, but it isn't explicitly against the rules.

Creative Commons image by Duane Storey

The session on the soccer field broke up without any resolution. But I held back from leaving because I wanted to get an email address from the guest, who I greatly admired, although he seemed a bit lost being called in to help mediate this conflict among the children.

As the others trailed away, the ringleader among the kids and one of his closest friends stood with the man from the ghetto, their admired role model. I waited patiently for him to finish with them, so I could ask for his contact information.

"My father says there are people called Neo-nazis who might hurt me because I'm not white," the leader of the kids' pack admitted to the man, his voice still strong but his stance clearly seeking some reassurance or support from this strong mirror of himself.

The man told him, "That's true. Some people are like that, but here is the thing you need to remember. Not many people are like that. Only a few. Most people are good."

I have a hard time with my big mouth. The man hesitated. He rocked from foot to foot, obviously struggling for words.

And the words popped out before I could stop them, "And that is a good reason, why you should be friends with as many people as you can. You never know when you'll need them at your back." 

The man jabbed his finger at me. "Yes! That is the thing! That is it!" 

He was clearly grateful to be rescued from an awkward issue of teaching morals to children--particularly a moral concept that adults don't actually observe all that well. We grinned at one another. A pact of the grown-ups with a quick comeback.

I do mean it though. Sure, no one can force you to be friends with the less cool, the ones who take a bit of extra effort--whether it's a kid on the playground who you have to work to communicate with or a grown-up who can't recognize faces. But hard times are coming and you may need just such friends. There is no friend more steadfast than those who have been on the outside.

Still. I acknowledge that mine was an easy answer, given to kids. I think back to my own childhood, when I struggled with social ostracism on a daily basis. There is a part of that memory I don't like to think on. There was a kid in my school for a time who was very strange in appearance due to a physical deformity.

He was smart and nice, but he looked strange even to my weak eyes. He was also not cool. He didn't have the kind of forceful personality that can negate physical difference. And so, even though I said "Hi" to him on the street and in the halls, I was never really friends with him. I yearned always toward the kids who were moving and doing things. Even I, who should have known better. did it. 

Now I swear I'll do better. Instead of looking around for who I want to be with, I'll look around for who is there and ready. 

She said it in 2016

My predictions for the next four... or ten years

I don't particularly want to be political on my blog, but this election was a call to all of us. It is past time we look at how this happened.

I know you're probably sick of politics at the moment. Frankly, so am I. It all seems too depressing and also confusing. It feels like talking about it does nothing but dig us into despair and negativity.

Here's the thing though. I have seen every part of this coming. When I was in my twenties and organizing international anti-war protests and one of my best friends was from Syria, I shocked her by predicting that her country was next. I could have been a bit more gentle about my horribly accurate prediction, but I saw the writing on the wall--wiggly, magnifying-glass eyes or no. 

A year ago, I also predicted Trump as president. I was confused all winter and spring about why people thought there was any contest in the Republican primary. I never had a moment's doubt about the Republican nominee.

Creative Commons image by Joseph Delgadillo

Still if Donald Trump wasn't here, it would be someone else. This year or next time. This moment was a long time coming. I say that because I understand on a gut level the frustrations and alienation that led many Trump supporters to support him and to accept and even wallow in such hateful and bigoted statements, as well as to applaud irrational and extremely vague economic proposals. 

I am from Oregon, but the eastern, rural, Christian, conservative part of Oregon. My family were weirdos there with our internationalist, counterculture and often leftist thinking. But still. I understand Trump supporters. Partly because I grew up near them. Partly because I share their most basic root frustrations.

No, of course, I don't agree with them on everything or support Trump. But when you look under the racism, bigotry, fear-mongering and undefined-corporate economic concepts, you find people who feel disenfranchised because they never had anyone to vote FOR. They always had to choose the lesser of evils in a broken two-party system in which candidates never talk about the real issues.

Social media changed that this time; that, and Donald Trump's private media empire.. Let's face it. This election was not about who looked better or who had better speech writers and snazzier campaign ads as it often has been. This election, for the first time in my life, was about issues. It's sad that it was about racism, fear of foreigners and taxes for poor people, but there were real issues raised, issues that were previously taboo. 

Trump supporters in the parts of the US that I know well--that terrifying red swath through the middle of the country--are people struggling with the same root fury I have felt for years. But they were struggling with much less access to information and education, struggling in a society that never let the world (I mean the world beyond US borders) in.

Clinton supporters I know are out on social media right now bemoaning the election of Trump and yet repeating the very strange conviction that "America is still the best deal on earth," as if most of Europe, parts of the Middle East and good parts of Asia didn't have better education, health care, standards of living and just about everything else. Barack Obama convened congressional debates on health care early in his presidency and would not allow members of Congress who supported European-style single-payer health care to even participate in the debate.

And we are surprised that many Americans lack information and their frustration turns to bigotry?

If we limit choices to two parties which officially predetermine which issues can be brought up in televised debates, if we keep our school system focused on our own country's history and political system alone, if we allow news media to be controlled by a few naturally self-interested corporations, if we allow corporations to run almost every aspect of our society, we should not be surprised at the results.

Yes, this election was real democracy (except for the part about Bernie Sanders, the candidate with the most vehement supporters, being artificially cut out). This election reflects the frustration and lack of choice and the segregation of information that is rampant in our society.

Don't blame Trump. And don't blame Trump supporters. There are reasons for this.

As for Bernie Sanders, he is the only political candidate I have ever fully supported. That is primarily because I have known and closely watched him for twenty-odd years and I am convinced he was the real deal. I loved those months when Sanders looked like hope, but deep down I feared that the leadership of the parties would never stand for it. I also predicted that the next president would be a Republican. Sanders made me wonder for a while there because of the unpredictable influence of social media, but that was really only wishful thinking, given the impact of corporate media.

Where do all my predictions and statements about society come from? I am not a pollster or even a media junkie. I have been accused of almost never watching the news lately.  But I do keep up and follow important events. I observe the emotions of groups of people. My original profession was journalism and I was most known for drawing out the views of all sides in controversies. I heard out the fears of Czech Neo-Nazis and then walked across the street to a Romani ghetto and heard that side of the issue.

It isn't so much about knowing facts and polls, as it is about listening to people.

So, I have a few things to say in 2016 that I don't think you will want to believe. That's fine. I'm going to say them anyway and in four or five years, I'm going to dig this post out again and check how I did.

1. Trump will be very bad for us and life will go on. Most of us will live and I will probably not be homeless in four years.

2. Trump supporters will be told that their economic woes and feeling of disenfranchisement is not improving because of foreigners, Black people, the very poor (including people with disabilities) and other groups they should be against. For that reason, they probably will not be disillusioned with Trump as fast as we would hope.

3. But their underlying frustrations, which stem from a lack of true choice in US politics and the heavily consumerist, corporate-led society, will remain unsatisfied. Unless something in the media changes radically, most Americans will continue to confuse the systems of corporations with the concept of "big government."

4. Climate change is the most important threat to our survival. Extreme authoritarian religious groups are the other major threat--be they fundamentalist churches in the US or Islamic extremism (i.e. Trump or ISIS).

5. Putin is not nearly as bad as Trump. He is in power and will generally stay there. If he has to imprison a few journalists to stay in power or keep his picked successor in power, he will, but he will use intelligent international and military strategies that are good for Russia and only incidentally good or bad for anyone else. His main concerns are what is good for Russia and his power in Russia.

6. There will be other extremist groups that look like ISIS. There will be many refugees. There will be famine and huge waves of millions of refugees within ten years. Europe will build walls against them. And the US will shut down immigration from those areas.

7. Climate change will not produce very many Hollywood-worthy disaster moments. Oh, there will be ever worse hurricanes, but mostly the dry lands will get drier. Violence will become more and more "normal." Resources will be more and more stretched. Life will become harder slowly enough that most people will not realize that much of the hardship is caused by climate change. But for the next ten years at least, we will keep struggling on.

8. History books will one day remember that a very important and dire world event happened in November of 2016 and it will have to do with the Dakota Access Pipeline and the many other pipelines being laid for frantic fossil fuel projects, not the election. I'm serious. In the long-run, that will probably be more historically important and our generation will look back and wonder why we were so distracted and didn't see it.

9. And after all that, I predict we'll still be here in 2030. I think life will be hard and we'll look back on this as a time with simpler problems and easier decisions. Our kids will not understand why we couldn't do better. But we will not live in a post-apocalyptic world. We will live in a stressful daily grind in which resources are limited and the cost of poverty is very high in terms of disease and mortality. There will never be a moment--more than now at least--when we can say the apocalypse has come.

And we'll have to deal with all of that sooner or later. The sooner we start to take it seriously the better prepared we'll be.. 

Now is the time to put your energy into what you believe. Now is the time for solar panels, for learning self sufficiency and for building local communities. Now is the time for preparing for hard times and making sure we have the skills to survive.

This is the time to be serious and think hard about what we spend our time and money on. Is it TV and Facebook or is it learning to grow food and overcome antibiotic resistant bacteria with complex natural compounds? Is it buying another new car or is it about putting twenty percent of your income into one thing that might make a long-term difference.

This isn't about a catastrophe scenario. This is about right now. Live what you believe. If what you believe is not consumerism and TV (i.e. supporting corporations), then don't do it. There is much to be done.

Fear of need... or the problem with visible disabilities

It has recently become almost fashionable to talk about the issue of invisible disabilities.

Well, praise Gaia! Finally a fashion that is helpful!

Still I have recently received a bit of a shock to my view of the divide between invisible and visible disabilities. 

A little background... As long-term readers of this blog will probably recall, I started using a white cane regularly about ten years ago. I spent a lot of years before that "passing" for fully sighted, even though I'm clearly legally blind. Then in 2004, my husband and I moved to a small town outside Prague and I started teaching English and translating as a private business. I had to forge relationships in town and the invisibility of my disability presented a problem. 

Several people told me they were offended that I didn't greet them from across the road. Others mentioned that I didn't use eye contact and smiles to show who I knew in a group or that they initially assumed I was developmentally disabled (using other terminology, as you can imagine) due to the strange look of my eyes.

A picture of my actual famous scooter. Image by Arie Farnam

I started using a white cane because I thought it might help to clue people in to the real issue--that I simply can't see much. Soon I noticed quite a few benefits of the cane, even though it made me feel uncomfortable. People in stores were much more helpful when I asked a question and crossing streets stopped feeling so much like risking my life. 

In 2009, we brought home our first child and things changed dramatically. While I had used the cane a lot before, I now used it constantly. With a baby, I just couldn't take any amount of risk at intersections and it was around this time that a legally blind friend of mine was run over and nearly killed.

Still, somehow social relationships didn't improve over the long-term. The cane helped a bit with the social offense and confusion over the categorization of my disability, but not as much as you might imagine.

Soon the neighbors and acquaintances who initially seemed more willing to give directions or say "hello" retreated into guarded silence. I continued to say "hello" to everyone I met on the street. It's local custom in this country, but as the years passed the answers I got became gruffer and less friendly. Our circle of family friends narrowed to... mostly people with some sort of disability. I started to wonder if the cane was such a good gamble.

Fast-forward to 2016. My eldest child is nearly eight and the youngest is six. They are learning to cross roads safely. But more importantly, my bone and joint problems are acting up. I have always had crooked and funky bones in my legs and feet but compared to my eyes, it never seemed like a big priority. This year, however, with the kids attending two different schools and my husband in a higher pressure job than before, I have to do a lot of fetching and dropping off.

With soccer practice and my own teaching jobs in the mix, I can easily end up walking four or five miles on pavement every day. And neither my knees nor my feet can take it. I've always dealt with a fair amount of pain in my feet, but I never realized it wasn't "normal" for walking distances to be that uncomfortable. Now it is beyond "a fair amount" and worse than that it escalates day after day. My feet take more than a few days to heal from one five-mile day and these days five-mile days are every day.

The upshot of all this is that I ditched my cane this fall and I've been riding an electric scooter.

What? You go from blind to motorized without any actual change in your vision????

Essentially, yes. I was never carrying the cane for its ability to find walls... or even the thicker variety of lamp posts. I was carrying it for social cues and traffic safety. And I drive the scooter very slowly and only in areas that I know so well I could walk without a cane and with my eyes closed.

That said, I was pretty nervous when I first got the scooter. Neither my husband nor I could figure out how we were going to handle all the transportation of the kids this year with his job, so we decided that it was a necessity. But still I was sweating pretty heavily the first time I encountered people I know in town, riding on the scooter a day after having been downtown with my white cane.

Do you want to guess what happened? A wild flying guess?

Absolutely nothing. 

My acquaintances greeted me cheerfully. I did my errand and returned home.

The next day I went out again, still nervous but excited at my new ease of mobility. The electric scooter is a far cry from a wheelchair. It does not look like something only a disabled person would ride and it has a very small physical footprint. You can fit on narrow medieval sidewalks with it and in many of the same spaces where walkers go. I can't use a bike well alone in the same way simply because bikes are too big for our tiny sidewalks and riding in traffic isn't an option. Also bicycles require a certain minimum speed to be stable. This scooter can really crawl and still maintain balance.

Over the first few days, I started to wonder about the new cheery mood that seemed to have swept through our little, often grumpy town. People who usually greeted me before, now do so with gusto and many people who had not greeted me previously started returning my greetings. The elderly ladies I often encounter on the way to town who used to glare at me and mutter before, now greet me with a chorus of chiming voices. I had to wonder if someone in town was making hard cider from the fall apples (and if so, where I could get some).

Keep in mind that I can't see people's expressions from any reasonable distance, so I could not tell if the cheerfulness (or the previous grumpiness) had anything to do with me. But as the weeks have passed, I have been astounded by reactions to my scooter.

Despite my initial anxiety, not one person has accused me of "faking" my vision impairment. Not one person has complained to the local police about my scooter taking up space on the sidewalks. And three people have stopped me to ask where they can buy such a scooter--one woman running desperately for two blocks to hail me because she has also been developing joint problems and she said she felt her heart leap when she saw me glide serenely by--uphill no less. 

Several people have randomly commented on how nice the scooter looks and how helpful it is to me. When I apologize for taking up a particularly narrow sidewalk and scrunch to the side to let walkers pass I am often met with protestations that my scooter is "wonderful."

This has all been very pleasant and continues to be. But finally my husband got to the bottom of the change when he overheard someone saying how uncomfortable it made them to see me with a white cane. They felt helpless, not knowing how to help and yet they had a nagging feeling that they should somehow help "the blind lady." Now they see the scooter as having saved the day. No one seems to get that the scooter is not a guide machine of any kind.

They don't care. They suddenly don't see a person with a disability anymore and they feel better for it.

And that is a sobering thought for me.

I have lived much of my life straddling the line between a visible and an invisible disability. But there are many people who can never pass for non-disabled. I feel a bit like John Howard Griffin, the white journalist who went undercover as a black person in the Deep South of the United States in the 1950s. I get to experiment with seeing life from an isolated perspective and I get to return again to the "living." 

But what is it that causes people to react so intensely (and so negatively) to visible disabilities?

There is a fear that is innate to our human DNA--a fear of helplessness. We fear being the outcast or being the person in need. And to see a person we believe is outcast and in need brings that fear up, just under the surface.

Then too there is also the feeling that one probably should help someone who is in what the temporarily able-bodied often consider "a terrible condition," even if the assumption that a visible disability must be terrible is erroneous.  Obviously people with visible disabilities often don't need anyone's help just at the moment that you happen to see them on the street. They are just as likely to be routinely going about their business as anyone else. 

Most of the time I fit that description. 

I am glad to have discovered another technology that dispels some of the fear of physical differences. Still the core issue remains. A person's appearance is a very bad indicator of whether or not they need help. In this case it is better to listen than to look. People often ask for help and aren't heard. and others who never asked have help forced upon them (or are avoided out of fear) because of their appearance. 

Words for our times: Pass through fear and listen.

A thousand years of fishing

Pale, autumn sunlight sifts through the morning mist, a thread of weak yellow in the grayish brown landscape..

Image by Arie Farnam

My hands are nearly frozen, gripping the side of a jolting wagon and a child between my knees. And this is just the beginning.

But there are thermoses of hot water for tea and bottles of rum for grog and if anyone will be warm it will be me. My task is usually tending the small cookfire on the dike.

It's the annual fish harvest in South Bohemia and we're on our way to the ponds, bundled up for several hours of frigid work. There is no snow yet and only a mild layer of frost but everything is wet and will get wetter. The land here used to be a marsh after all.

Each year we are pressed into service by my husband's family on the last weekend in October to help fish out the ponds that hold the winter's supply of carp and pike. It's a tradition a thousand years old. The men dress in hip-high rubber boots and old farm jackets and wade out into the muck of the partly drained ponds with giant nets spread between them. Then at the grandfather's signal, they form a line and heard the fish in to the center. 

Image by Arie Farnam

I am always struck by the odd beauty of this ritual. It is all about mud, cold and hard, dirty work. But the fact that the techniques used hundreds of years ago are still the most effective makes it magical. And the realization that the five-hundred-year-old network of fishponds and water channels has made humans an integral part of the ecology of this land make it beautiful. 

When the fish are drawn into a wriggling, silver-flashing mass in the center of their circle, the fishermen lift them with scoop nets, while others sort them into huge drums of water--one for the smallest immature fish, one for those that will be left to grow another year and one for the full-sized fish, which will be kept in clear water for a month to ensure that they don't smell like mud. Then they'll be served for holiday dinners.

Image by Arie Farnam

Dozens of people come to the fish harvest, many to work for a free fish, many just to watch from the dike. I hand out grog and tea. This used to be my mother-in-law's job and I was only her helper. This is the first year since she passed on. 

My children run wild in the pack of local children, splashing through the shallow black water and spattering themselves with that peculiar stinking black mud of the South Bohemian bogs that is nearly impossible to wash out of clothes and off of skin. But such family traditions are worth more than a set of clothes. 

I warm my reddened hands by the fire and watch as the sun emerges from behind the heavy clouds, briefly setting the autumn trees around the pond ablaze with color. 

Forging one's on solace

Almost nothing can be seen from my windows this morning. A few bits of trees poke out of the dense fog but everything else is shrouded in thick white. The air smells like wet compost and leaf mold. 

The contrast with the warm light of my fire and the dry, snugness of my little house is delicious. I tell my husband and children how fog was something so magical and exciting to me as a child, growing up in parched Eastern Oregon. Whenever we went on trips near the coast and drove into fog, I would shout, "We're in a cloud! We're in a cloud!"

My children are confused. I try to explain that fog is pretty much a cloud on the ground, but they insist that clouds are things with borders, skin and substance that you see up in the sky--not just white air.

My husband simply laughs at the idea of fog being exceptional in any way. He grew up in a marsh. 

I'll admit that fog has lost some of its magic for me. I am getting tired of the damp after eighteen years in this climate. I often long for the clean dryness of the high desert. Even after all these years, it hasn't left me.

Creative Commons image by Joshua Ezzell

But this particular morning I rejoice in the mist.

This week I had to draw the line in an unhealthy and manipulative relationship. Doing it required not just setting boundaries with one person, but choosing seclusion from a community--in fact a community that ties me to that high desert I love so deeply. 

I've spent so much of my life seeking community and struggling for inclusion that the act of choosing seclusion is boggling and yet on some level it is cathartic. The knowledge that you have a choice in every situation, even if that choice means exiting and taking the losses, is a bit of empowerment. 

I spent much longer at my morning meditation this morning than I usually do. Yesterday I missed it for the first time in many months, due to the pressures of rocky health and children.

And today I could not get settled. I felt a knot of anxiety and grief still in my gut and there was one distraction after another - the new-kindled fire threatening to go out (fog does actually make it harder to start a fire), the cat acting like it was going to vomit on my couch and so forth and so on. Even if you turn off your phone, sometimes the world just won't leave you alone. 

My meditation is a moderately active one. I don't sit and say "Om," though I know people who that works beautifully for. My mind chatter needs to be quieted, so I use recitation of poetry as well as simple ritual, candles and turning off all electric devices. Still I could not get settled, so I just did it anyway.

Of course, merely going through the motions is not really good spiritual practice, but "fake it til you make it," has its merits.

Finally I did make it, but not until I'd been at it for an hour (and I brought out the heavy artillery in the form of Tarot cards). Some days I don't have that much time. And today it was a near thing. 

But finally peace of mind came.

The fog closed around me and held me by my warm fire. The danger is at bay, somewhere beyond. I have forged my own solace--a chance for healing. And I do not need to struggle for now.

I know that when I step out again, I may have to face it all over. And soon I'll have to clean the school room and prepare for classes this afternoon.

But for now I have made solace by effort and design. This is woman-made peace without the use of mind altering substances or denial of harsh realities.

It's there somewhere. It can be forged.

Staring down my ballot

I envision Americans all over the world--Americans living abroad that is--sitting and staring at this letter the way I am. Americans abroad get to vote quite a bit early.

I'm sitting at the kitchen table with the envelope in front of me. I am glad it made it given the funky postal system these days. I'm also grief stricken. And terrified. I hate the damn thing. And I'm grateful that this at least remains to us.

A ballot.

How many people fought for this? Women. People of various colors. People with disabilities. Immigrants. If you belittle it, you are either an ass or just plain ignorant of history.

We all know that.

It's a great thing to have a ballot. My neighbors and my husband don't get one. The issue of who will be the next American president will impact them nearly as much as it impacts me. But they don't get a vote. I do.

And I don't know what in Hades to do with it.

I do know it's one in a hundred million. My ballot does not mean squat. If I ball it up and throw it away in disgust no one will care. Clinton will win or Trump will win, whether I do it or not.

I don't get political, I mean actually election-political, on my blog very often and I swear I'm not even doing that now. I'm not going to tell you how to vote because I don't know how to vote this time around. 

"Knock me over with a feather!" I can hear some of you shouting. "Arie doesn't have a political opinion for once."

Oh, I've got opinions. I've got a gazillion of them. That isn't the problem. 

I'm going to hazard a guess here. I'll bet I don't have very many readers who are Trump supporters. (Except you, Andy. And we love you anyway.) He's sort of a family member and you know how that goes.

But the rest of you... well, who reads my blog? According to my Google stats some people actually do, for which I am immensely grateful.

And from comments I'm guessing some of you are general treehuggers, like me, and you know you're not voting for Trump. Then there are the non-Americans who read my blog, and you wouldn't be voting for Trump even if you could. There are quite a few people with disabilities who read my blog and Trump would just as soon see us dead. Same goes for my Romani and otherwise non-white readers.

A lot of readers are also variously Pagan and Goddess inclined. Now one could theoretically argue about whether or not Trump will make America "great" again, but we know for sure he'll make it Christian-or-else again, so that sort of settles who Pagans aren't voting for.  

Therefore, I'm not going to tell anyone not to vote for Trump because it's pretty safe to assume that no one reading this is planning on it, except possibly that guy Andy. And he's only reading this to humor my mother.

Instead I'm going to commiserate with you.

Because if you aren't voting for Trump, what are  you going to do?

Okay, there's the question. Vote for Clinton or don't vote for Clinton? Clinton is one of the least popular politicians in history even before the election and with good reason. You may be one of those desperate people demanding that every decent person vote for Clinton because "if you don't, you're signing the country over to Trump and thus signing your own death warrant!" 

I get it. I really do. When I look at Trump. I think of course there's no choice. That Green on the ballot might as well not even be there. No real choice.

And then I put my head in my hands and cry. Because... remember all those people I mentioned, the ones who fought for this ballot. And now the ballot is as good as useless. There's no real choice. 

Every single election in my adult life (that's since 1996) I've been told, "There's no choice. Just vote AGAINST that guy!" whichever guy it was. Who I was supposed to vote for did not matter.

So, we grit our teeth and do our duty. We vote for slime, for lies, for candidates who care as much about us as they do about the gum they stepped on when they got out of their LImo last night. 

It's only harder this time because we had hope for a little while. I knew it wouldn't last. Admit it. So did you.

If we were right about the way the political system works, if you actually believed what Sanders was saying (including Bernie Sanders himself), you had to know that he would never be allowed to compete for actual votes cast by people.

He said the system is broken and rigged. And it is. So Clinton participated in a blatantly rigged primary to deny us our right to vote. And now we'll vote for her because... we have no f---ing choice!

I try to comfort myself. Clinton mentioned climate change. She actually MENTIONED it. Bernie did that at least. He has forced her to at least say a few taboo words. We all know she won't do what needs to be done, that she doesn't care and that these are all just words to her, but maybe I should throw my vote her way as a sort of "thank you" for the mention of the single most important security crisis facing us (according to official US military analysis and everyone else worth their salt). At least she didn't completely ignore reality. 

And I do have a daughter. She's seven and she's into Lego Friends, who first rush home to change their clothes and put on make-up every time they are called out to rescue endangered animals. Think about what it would mean if the president is a woman--a woman who does not even make coquettish noises every two sentences. My daughter could grow to her teenage years with this woman's face as the supreme power in the world. That is worth something isn't it? No matter how much of a liar and conscienceless shell she may be.

That is something to vote FOR, isn't it?

My gut feels like a sack of rotten potatoes. If you've ever smelled rotten potatoes--really rotten--you know what I'm talking about this election.

So, good luck when you get your ballots, America. You've got my sympathy which ever way you toss your lack of choice. Just remember that NOT voting is still part of the game and there may be consequences.

I'm going to go out tonight and wish on a star. I wish just once in my life to vote FOR a president, rather than against. Even if my choice doesn't win. Please just once. I want to cast my vote for a candidate I trust and admire. 

And that wish is light in the darkness. We may have to fight for the right to vote, really vote, all over again. Don't forget. It's been done before.

Inside the house of the model parent

"You're such an amazing mother! Your kids are so lucky!"

I couldn't believe my ears. And then I felt awful inside. Not only am I a bad parent, I'm a liar. Either that or I'm only "inspirational" because I'm legally blind but not a real "good mother."

That's how it feels when people tell me I'm a wonderful mother because I know what it really looks like at our house. I do something--one little thing--well and people are so impressed. But I know how much hair pulling, screaming and yelling, fighting with my husband and so forth it took to get that one thing done. And I know about the piles of laundry, the dirty dishes and the cobwebs that have fossil layers.

The parenting feat that attracted this latest gush of praise was the time I managed to put together a cooperative reward chart for the family that ended in homemade pizza. Not exactly super mom. More like lesson one from a parenting book. 

But I also know that looking from the outside it might well look pretty impressive. Things like that look impressive to me when other people do them. So, I'm going to let you peek inside this particular "model parent" moment.

Here's how it REALLY happened.

Problem 1: My husband and I are really out of shape. This is primarily caused by stress, jobs, kids, the demands of society, our kids' school and so forth. He has high blood pressure and I'm developing joint problems. 

Problem 2: We want our kids to learn responsibility. Our kids want to have animals but take no responsibility for them. The parents are tired of doing all the work and the remembering.

Solution: I made a chart that looks like a board game. At the start of it there were four stick figures. That's us. At the end, there was a crude picture of a pizza in a square pan (i.e. homemade, not going out). In between, there were about thirty little colored squares. The deal was that every time my seven-year-old daughter fed the cat in the morning without being reminded our little family star moved forward one place, every time my five-year-old son fed the ducks in the afternoon with only one reminder the star moved another place and every time a parent did an agreed-upon daily workout it moved forward. That's a total of four possible moves per day. 

It took us well over two weeks. Not a perfect score by a long shot. Mama and Papa got less than seven hours of sleep a night, any night they got up early to exercise. There was cat food all over the back veranda at least six times. Everyone forgot the ducks at least two nights, but they did live. They just ate the cabbages instead of getting fed, so the cabbage from the garden is full of holes.

But we got there.

The day of the pizza arrived. It started with a fight between Mama and Papa about who had to go to the store to buy the salami Papa had forgotten to buy because Mama had forgotten his second reminder. The fight lasted 45 minutes and was loud and stressful. I cried in front of the kids again.

Then in order to fit making homemade pizza into the preparations for lunch, cooking for the week ahead and the harvest feast with friends planned for Sunday, I was chained to the kitchen stove for the entire Saturday. This, of course, made me a bit grumpy. I mostly spent the morning, trying to cook and clean while telling the kids to go outside and generally not doing quality time.

The kids hit and kicked each other, got time-out, ran away from time-out, got a reasoning talk about conflict resolution, unwillingly role-played talking out their needs, banged on the piano, hung onto my legs, got into the pantry and tried to eat cookies right before lunch while knocking two glass spice jars off the shelf, got sent outside again... and again.

Photo by Ember Farnam

I hoped to make the pizza with the children, but the seven-year-old was invited to a birthday party that afternoon. So, I planned to do it with just the five-year-old. But then the five-year-old collapsed on the floor screaming and crying for no discernible reason, while I was finishing up the dough. Trying to be a good mother, I put the dough aside, washed my hands and carried him upstairs, kicking and screaming.

We settled down in his bed to read three story books and by the end of the reading he was drifting off to sleep. He doesn't usually sleep in the afternoon but I was rejoicing inside. This would avoid the inevitable meltdown when the seven-year-old departed with Papa for the birthday party while he was left at home with me.

I returned to the pizza making.

The seven-year-old party goer went outside and started to screech with feigned glee directly under the window of the sleeping five-year-old. 

Mama came unglued. 

I force-marched the seven-year-old into the play room and ordered her to lay down on the couch and sleep, or else. I wasn't going to threaten to not let her go to the birthday party because 1. that would be punishing me as I was hugely looking forward to some peace and 2. this was the first non-parent initiated birthday party invitation she'd ever gotten and I never got even one such in my childhood, so going to the party was just law. 

The five-year-old woke up and came downstairs crying after only sleeping for five minutes, because he had been woken up. I put him back in bed.

And went back to rolling out the pizza.

The seven-year-old came out of the playroom. I made angry silent motions at her with a raised fist and she went back in and shut the door... hard.

The five-year-old came down the stairs shrieking that his sister gets to play and go to a party and it isn't fair. Then he ran into the stair railing from sheer exhaustion and bruised his knee.

I washed the flour off my hands again and took him back upstairs again. He continued to shriek. I put him in bed and left with him still shrieking. 

The seven-year-old ran out of the playroom and made it outside before I could do anything. The five-year-old continued to shriek. I got the dough rolled out and started to cut up things to go on it. 

After listening to shrieking from upstairs for ten minutes, I went upstairs and yelled at the five year old. Then I was consumed with guilt because yelling doesn't help and even so he was being punished for what--essentially--the seven-year-old had done. I let him come downstairs and be tired. 

The seven-year-old went to the birthday party, the five-year-old's neighbor friend showed up in time to cut the resulting tantrum short. I went to the store and got the salami. I finished the pizza. I had no bonding moment making pizza with my children. The kitchen was an utter disaster with dishes and half-eaten lunches piled on every available surface and flour in small drifts on the floor.

Photo by Arie Farnam

But the pizza was hot out of the oven when the seven-year-old returned home from the short afternoon party. There's that perfect parenting moment you were envisioning when I first mentioned the chart and the pizza. 

But it only lasted about ten seconds, barely long enough for me to take the potholders off my hands. Then the five-year-old came running in reporting that some neighbors were having an outdoor yard party and they said he could have a hot dog. He no longer wanted pizza.

Papa came up with the idea that we would take one pan of pizza to the neighbors and the kids could share it there with the neighbor kids. So, I took the pizza over to the neighbors with the kids.

The two moms organizing the party gave me grim, unfriendly looks when we approached. Then they told me this was their party and they hadn't really wanted a bunch of people, regardless of offering my son a hot dog. I offered to take my kids home. They feigned indifference. I started herding my kids out of their yard despite the beginnings of a double tantrum. But one of the moms questioned why I was making the kids leave as if she hadn't just shamed me for coming and the other gave my kids juice. I couldn't very well spill the juice, wrestle two screaming children out of there over the host's protests (feigned or not) and carry the giant pan of pizza at the same time, so I left both pizza and children and went home.

I ate the other pizza alone with my husband and thought grim thoughts about perfect parenting.

That, my friends, is the true story of my super mom moment. For me, the lesson is to be careful what I assume about the parenting of others. Perhaps the little yard party put on by my grumpy neighbors was the fruit of hours of frustration and frantic juggling too. That might explain a few things.