Wednesday, February 24, 2016


I am nearly finished with Facebook. It's becoming so . . . MySpace, with more ads.  It is addictive, because one in about 70 posts are quite interesting, or connect me to remote friends in ways otherwise ignored in this multi-tasking attention-energy-sucking meaning-diluted swirling first-world juggernaut. One of the principles of behaviorism is that intermittent reinforcement will increase the likelihood of the persistence of the desired learned behavior much more than constant reinforcement will. Think gambling. As of this writing, I have not found a filter that will allow a friend's family pictures while preventing their re-posting of videos of skateboarders sterilizing themselves on railings, or pictures of dogs with signs around their necks written by their owners bemoaning the latest cushion dismemberment. As we enter what may be the ugliest, most idiotic political seasons in this country's history, I fear that my ability to remain will not survive.
My account contains a fairly diverse population, which guarantees that the full spectrum of opinion and insensitivity on any popular topic will be displayed for my entertainment, judgement and often, disgust. I would characterize my friends into four general, overlapping categories: Family, the church people, the disability crowd, and gamers. Toss in some co-workers, and I think that you can see the opportunities for any and all to be offended/offensive to each other, no matter where I fall into the Venn Diagram that is my life online.
I have many friends from other countries and continents. Their insights (and involvement) in the United States of America's goings-on is both fascinating and embarrassing for me. Just as I do not know what it is like to be *insert country -ish/egian/ian*, they interpret our goings-on through a foggy american cultural lens that often leaves me screaming (only in my head as of this writing). It does sting quite a bit when they're completely correct. Ignorant of their government structures or functions, I'm not capable of commenting on their internal issues. Educationally obtuse and linguistically, er, inarticulate in only one language, I attempt to at least acknowledge my 'ugly american' status to retain their affections.
My family experience on FB is weird. Isn't yours?
Church People. Very much like the attendance at my wedding, and at my father's funeral, for that matter. My Dad pastored 6 churches officially, and many others as the result of his various leadership positions. What this meant at these two particular occasions was that one could not predict who might show up, how many, or what they'd bring in the form of memories. It makes for some pretty weird combinations. There was a couple who came to Dad's funeral who were from his first church in Sierra Vista, AZ. In 1959.
We in the 'Disability crowd' ( There is no good term, ok?) promote diversity and acceptance. I suppose that's what makes it difficult to 'unfriend' a fellow parent with whom I share a diagnosis only. In my struggle to learn this path, many of us shared an emotional journey that turns out to be like summer camp or, more aptly, a plane crash. Once the circumstances subside, there's not so much left. As with every other group noted here, there are exceptions, where we find common interests that go beyond the generalizations.
Then there's the gamers. From Australia to Italy and points in between. I have moose pepperoni in my freezer from CrazyMoFo from Canada. One is a working ventriloquist who's been on Letterman and "America's Got Talent." Some are gifted, most are goofy. Many of them are prone to posting content that my other three constituent groups would find, well, pretty offensive. I will fail to stereotype them any further; let's just say that they play a lot of different games, some of them are online, some in real life. How else would I learn about things like tanks and snowmobiles and beekeeping and WWII ordinance(one guy operates a prop shop up in Los Angeles with uniforms and all the accoutrements)? 
While I would like to think that I can use all of the friends that I can get, I know that the word 'gregarious' does not pop into anyone's head when describing me. My growing dilemma with Facebook is the signal-to-noise ratio. The "don't just like - cut and paste this to your timeline if you love me and support penguin rights, it's the only way I'll know you care" crap. "Match up the month and day of your birthday to these lists to find your Leprechaun name." The post, this week, that intrigued me: "Never buy laundry soap again!" The link then directed me to buy cakes of Fels-naptha, shave pieces into a bowl, then use a mixer to combine it with other purchased ingredients to MAKE MY OWN LAUNDRY DETERGENT. Perfectly in context if I'm looking through the aisle at the General Store before I mosey back to my sod house on the prairie. Are you kidding me? I buy pre-made soup and a cooked chicken from the grocery store, why would I MAKE MY OWN LAUNDRY DETERGENT? I believe I've made the point. 
Moving, personal information about my friends' lives. Cat videos. Kardashian news. It all has equal weight on this platform. I realize that ads make it 'free', but we've been conned into passing along all of this crap without thinking about the effect we're having on each other. I've fallen victim to it; I did, yesterday. Something I thought was fun and entertaining turned into something I never intended it to.
I have to make some changes. I'm not sure what to do. Winnowing the list may help some, but I know that a few folk that I truly care about clog my news feed with dreck. What, then? Throw the Facebook out with the ice bucket challenge? I was tempted, then. Until Alex did the challenge with a tub of rocks, out here in drought-stricken California, and it was nearly worthwhile. Ya gotta love family.

Friday, October 03, 2014

A Simple prop, to occupy my time

It's time, once again, for the annual houseboat weekend on the ever-shrinking reservoir.

Day One, or "Getting there is not half the fun"

"Day One" is actually quite misleading. Weeks of preparation have led to this moment - everything and anything one might imagine that one needs to make and/or acquire to both maintain and entertain oneself on a 50 foot long floating Single-Wide for 5 days has been considered, downloaded, purchased, cooked,bagged, batteried, and packed; charging cords and adapters double-checked, inflators procured, and transportation maintained. Let us not forget the coordination of multiple caregivers and preparations to keep the household running in your absence. Mental checklists overlap and repeated inquiries are made to verify the contents of each container of supplies.
At last, we set out on our 5 hour run across the desert border to Henderson, Nevada, home to the Fiesta Resort and Casino, familiar meeting point for our fellow travelers. Decompression slowly begins as we catch up by the pool to the music of the freeway and railyard, sun setting an orange glow over the smoggy dome that is Las Vegas to the West. Some nachos, then off to bed next to the cycling wall air conditioner that is the hallmark of the under $80/night hotel experience. The alarm chimes much too soon.

Day Two, or "Let's move into this apartment with a truckload of stuff in 100° heat!"

Shopping and moving - two of my favorite vacation activities. Perishables must be procured, and four of us fan out into the community to acquire them, including 40 bags of ice to be quickly transported the 30 miles or so to the marina. The big Wal-Mart has 9 types of salsa in 4 different locations, which ones shall we buy? I hope we have enough limes. The providence of instant communication ensures that we arrive with 2 packages of E.L.Fudge in a timely and gracious manner.
Off to the marina, into the basin that forms Lake Mead. Past the marinas that have closed up altogether, due to the lack of water, to Callville Bay, which is now really Callville Cove. The main launch ramp has been lengthened over the years to the point of abandonment, another one built. New concrete has been poured to the latest water's edge, and we begin the task of loading said supplies onto the houseboat. This is accomplished with the aid of large wheelbarrow-like carts, making it a process of unloading, loading, pulling said carts for a quarter of a mile, and then unloading. In the desert. Supplies and belongings are duly put away in their proper places, and we are piloted out onto the lake and left to our own devices - well, mostly their devices, but you'll see what I mean. Brunch is lovely, and we settle in to traverse The Narrows and the Virgin Basin. Crossing to the other side, we approach a spot to stop and swim. It turns out to be unexpectedly shallow and, one broken prop and a visit from the marina staff, our berth for the night. We swim, lounge, read, and ponder our predicament. Sliders and mac'n'cheese are a hit, and we settle in for our first night under the stars.

Day Three, or "Nightmare on Mushroom Cove"

6:30 am, and the extremely helpful mechanics arrive early to replace the broken prop and pull us off the rocks. It goes as smoothly as pulling a multi-ton fat catamaran off an uneven shelf can be. Thanking them, they advise us that tonight will bring rain and 40 mph winds. They advise us to seek the shelter of Mushroom Cove, as well as telling us that they are recommending that the many boats that they are sending out today stay on the other side of the Narrows. This means that we have the majority of the lake all to ourselves. That is, except for the helicopters. More on that, later. We happily cruise Southwesterly toward the familiar Southern edge of the lake, to a spot that looks good to ride out the oncoming storm. We set our large
steel stakes and tie the boat securely to the shore against the prevailing wind. The water temp is wonderful; the gathering thunderheads brilliant white against the pure blue skies and the crumbling Mushroom rock formation to the East.

Ribs and Rice in the dining area, A/C cooling as we bob about into the dark.
For those who have never been out in the wilderness, the night sky is a major attraction. The Milky Way is spectacular, and one can always see shooting stars to the East, away from the dull glow of the greater Las Vegas valley to the West. On this night, the thunderstorms seem to surround us, and the night was pierced by lightning-light in a spectacularly strobing display. I crawl into bed, as usual, before the others.
There is a particular timbre to the sound of steel rebar being struck. We were all instantly brought awake by the tinkling sound of them being dragged down the face of the cove shortly after 1 am. We had just become unmoored. One sprung into action, firing up the outboards to attempt to hold us in place while the other 2 nearly able-bodied of us scrambled to recover and subsequently re-attach said moorings. In the dark. In the sandblasting wind. I did not feel like Thor, holding a 4 foot-long shaft of steel in the middle of a lightning storm. Looking down on the boat from my elevated position on shore, It looked like a Spielberg movie - light spilling from the windows as it pitched and rolled, props churning as the wind shifted and blew the boat promptly into the shore, sideways. Scratch prop #2. We killed that engine and tied the boat to shore that way, settled in uneasily, and all gradually returned to sleep except for me. I listened to a couple of podcasts until I finally dropped off shortly before dawn.

Days Four and Five, or "Relaxation under the Helicopter Highway"

We pushed off that morning, prop chewed but still productive, only one of us fell in getting us underway. Off to Temple Bar Marina for gas and ice, then off to another cove for some peace and quiet.
Starting at around $200, you can take a helicopter tour from Henderson or Las Vegas to the Grand Canyon and back. This route will also afford you terrific views of Hoover Dam and Lake Mead. They begin at 7 am and run pretty much every 5 minutes or so until about 4 pm. If you looked straight down from said helicopter while over Lake Mead, this last weekend, you would have seen us looking up at you while we interrupted our conversations to send you a special greeting. It reminded me of the time my family went camping at San Onofre State Beach, where the sound of the freeway is only interrupted by the sound of the trains going by, all night long.
We did have beautiful weather, those last two days, and I actually enjoyed a nap befitting one of advanced years such as myself. Good meals and relaxation, brochure-worthy in all respects.

Monday afternoon. Let's move again! The great unmingling of provisions back into boxes and then carts and then cars and, after another 5 hour dash home, back into the cupboards and garages to be stored for the next adventure.

Four days later, the vertigo has nearly subsided. The insect bites and scrapes have become more evident as the sunburn abates, and I've had two really good nights' sleep in my own bed. I'm looking forward to the weekend.

 Happy Campers, all.

Monday, August 25, 2014

There's been some thought provoking stuff percolating in my head, from the world, lately.
A famous Atheist - probably the most famous one since Madeline Murray O'Hair, or whatever - has essentially said that people with Down Syndrome should not exist. This is certainly not a new idea, and let us not forget that the majority of them are already being euthanized in utero, as we speak. Call it what you will, this is what I call it. Calling for the complete eradication of a classification of Human Beings is a tenuous position/slippery slope/precipice, if you will, that we have been treading for a while. Shame on him for saying it out loud. At least Bill Maher only likened my daughter to a dog.

Let me bring you to this:People with Down Syndrome are Pioneers in Alzheimer's Research, from KPBS.
Diversity is the key to biological success - it is a tenet of Evolution. The presence of people with Trisomy 21 may just hold the key to the prediction and treatment of this disease. Unless, of course, a prenatal test for Alzheimer's Disease is found and we abort them, too - denying them lifetimes due to an unpredictable threat. Sorry, just took a leap there. Don't mean to sound like a radical "Pro-Lifer", because that would cause you to make waaay too many assumptions about what I believe and don't believe. They would be wrong. But I hope you see my point. We are heading into a new age of medical discovery, combined with an information explosion that will probably cause some real mistakes in how we relate causality to Human values, and we may all suffer some unfathomable consequences if we are not very, very careful. I'll leave that there for now.

I would put forth  that diversity is essential to our survival as that which we currently define as Humanity. Diversity in all forms. Just as the Interstate Highway system hastened the homogenization of our culture (read the loss of regional identity), efficiency can often bring about unexpected qualitative losses. Media, on the other hand, has moved from 3 network shows on a night that everybody watched, to the current explosion of everything from Duck Dynasty to Downton Abbey. A spectrum that now requires greater discernment about how one spends one's mental attention and energy. Enlightenment, or guilty pleasure? Or both.

We live in times more tumultuous than we could have imagined, in this post-nuclear holocaust/dirty bomb/terrorist world where there's poor leadership in the government fighting against no government at all. Borders are melting. Conventional diplomacy is a memory.

The simplicity that Mr. Dawkins desires is a dream that cannot and should not be realized. I do not believe anymore in purity of thought, I think. I do still believe in the purity of Love.

Wednesday, November 23, 2011

Thanksgiving, 2011

I passed you, coming out of the morning meeting.  You weren’t supposed to be there. You were on your phone; still said “hi” as I went by.  I figured that you were just checking in. I wish you’d said something then, but that really wasn’t ever your way of doing things.  Later on, you were gone, with the message in my inbox that you’d resigned.  I know some of the whys and wherefores, and there’s a lot that I don’t know.  I do know that there are some things that I need to tell you. It’s part and parcel of what we talked about in terms of many other people and situations as I tried to help you as we worked together. We just never really talked about what you’ve done for me.

You took action on my behalf at a time when I was out of options. I was out of ideas; mostly I was out of hope. I was hope-less. Trapped from any of the thousand ways I tried to look at it, resigned to a crumbling future. I was beyond hating my job, hating those around me, beyond sick and tired. I was numb.  It was not “acceptance,” it was despair. What you gave me - and it was truly a gift – was an opportunity. We both know that it was also good for the company. What you did that others would not was to recognize this and do something about it. I would hope that you could consider this a success. As we discussed, many times, success in your particular position was often very difficult to measure. One of the things you understood was that success as a leader could be measured in human terms, usually ‘off the books’, even when others might not understand. I enjoyed those conversations very much. You most certainly achieved that with and for me. Thank you.

It didn’t mean that I liked my assignments. Not at first, and some of them I will never enjoy. You did, however, treat my attitude and frustrations with a compassion that amazes me, still.  These last few years have not been easy for anyone at our workplace, and you were often pretty near the end of that wagging dog’s tail. Though we (ok, me mostly) made fun of some of your statements (“It is what it is”), there was no mistaking that it was what it was, and it likely wasn’t getting any better. You encouraged, cajoled, moved stuff around, didn’t run certain reports at different times, and did your best to make it work. Often, you looked bad for our sake. Some of us recognized that.  Thank you.

The opportunities that you provided me have given me quite an education into an aspect of my career that I never thought I’d receive.  You have increased my value at least threefold; to Mercy, to myself, and hope-fully, to my future.  You’ve helped improved my home and family life – I’m a little easier to live with than I was in my six years in “The Pit.” I actually look forward to going to work, every now and then. Just don’t tell anyone – I have a reputation to maintain.  Thank you.

Thank you for looking me in the eye. Thank you for letting me rant when I needed to, to say the wrong thing, to accept my apologies for doing both. Thank you for valuing my opinions. For listening. For your confidences, which I keep. It meant that you valued the ‘working’ me, something that had been taken away.  You allowed me to do, to make a difference, to work through a new challenge to the other side, to make something better, not just fill time on the train to oblivion.

I don’t know what the future holds for either of us. I hope what you told me, the last time we talked about it, continues to be true. I know that you’ll be successful and make a difference, whatever happens, because that’s what you do. I’m just thinking about you on this Thanksgiving eve.

Thank you.

Saturday, November 12, 2011

“V-8, with a Detroit attitude”

- from “Livin’ Large in My Malibu”, Steve White


About three months ago, I purchased the above vee-hickle. Two and a half tons of Dearborn steel, an iconic hunk of Americana. This is not my first truck, but it’s been a while, and the last one I called a truck was really an SUV stuck on a small truck chassis. My first truck was a brief yet (nostalgically) satisfying encounter 20 years ago with an ex-forest service truck with a straight-six, three on the floor rattler that I frankly can’t remember what happened to it. This is my first V-8. I’m old enough that I had to do the conversion to be happy; it says 5.4 liter but that means 330 cubic inches, to me. Not quite the 350 of my ‘childhood’, and  what we Amurrcans call a “short block”, but it’s the biggest motor I’ve ever put my foot into. I haven’t actually done that, yet, and that’s going to be the point of this essay, eventually.

cropped orig side

I didn’t set out to buy this truck. I had smaller things in mind, really I did. I wanted a truck; consumer/homeowners that we are, we accumulate things (like IKEA furniture) that may come home in small packages but require disposal options not available at curbside.  We also needed transportation that could accommodate the four of us. Toyotas and Hondas were in my sights. I took Sam along to test back seats. The short story is that I saw this truck, liked it immediately for several reasons, negotiated a reasonable price, and took it home. And yes, I succumbed to its’ ‘bigness.’

So here’s the deal. It took me a good two months to come to the realization that I am rebelling. No, not like the middle-aged (and yes,  I am clutching at the outer edge of that precipice) guy who buys a Corvette and gets hair plugs.  I can’t say if it’s always been this way, but I suspect not – that I’m living in a society where everything I do is guilt-inducing or otherwise contra-indicated for some reason or another. I know that I consume more on a regular basis than most on this planet and, while I can and do conserve/recycle/etc., there are aspects of my living that I cannot change – right now.  Suburban life probably must change significantly if we are to ultimately sustain life on Earth; however, those changes are going to happen pretty slowly in comparison to my tenure. Having said that, there is so much noise around us about what’s “good” and “bad” that I fear none of us should truly enjoy much beyond camping in the woods, eating berries and missing toilet paper. We are made to feel guilty about where we shop, what we buy, how we cook it, what kind of pots and pans we use, what countries the spices come from, how we eat it, how we wash the dishes, and we really should be composting those coffee grounds and watermelon (I’m SURE it was union-picked) rinds. I have been wondering, lately, what ultimately costs more – sending food scraps through the garbage disposal, or putting them in the trash. Water is expensive here in Southern California; at the same time our landfill is pretty full. Yes, really, I can feel guilty about just about anything, anymore.  I was getting pretty self-righteous about that whiny, freeloading cat at our house until he reminded me of his worth yesterday by leaving mouse parts on the front porch. Alright, so he’s doing his part, he can stay.

With the truck, it’s gas. Let’s not mince words here, this As an impulse buy, I can claim that I was misled by a CARFAX® report that grossly overestimated the mileage – I later found out that it gets exactly what Ford Says it’s supposed to.  It is the heaviest truck in it’s class, and it just takes a lot to move it around. So I, good person that I am, immediately became guilt-ridden and obsessed with improving it. I got online and found lots of expert advice, including a modification to the air intake system that I performed myself with some drain pipe and a hose clamp.  Any further efforts will be costly, and must be placed pretty far down the list of things to do, if at all. I can report that the things I have done, which include driving (as one truck forum poster wrote) “like there’s a raw egg between my foot and the gas pedal”), I’ve increased my city mileage by 0.71 mpg.  This means a little over 21 more miles per tank of gas (It’s got a 30 gallon tank, fer pete’s sake), or about a gallon and a half savings  per tankful.  I now measure things/purchases/etc. by tankfuls of gas.  I’m also about ready to get over it.

I know it’s new and all (to me, it’s 4  years old. Pretty good lookin’ considering that, huh?), but I have just enjoyed the heck out of this truck. I had been driving the 20 year-old 4-door Honda Civic that the kids grew up in, complete with a back seat so encrusted with happy meal detritus. . . I need go no further. I had no fan, so no heat/defrost/AC action; it bore the scars of domestic bliss  and deferred maintenance (kinda like me, but I still have some trade-in value).  I enjoy everything about it – the space, the ride, the fact that it has airbags  and big ol’ bumpers.  I know that I will get used to it, over time. For now, the cost of operating it has turned to an appreciation for what it does for me. Not exactly a guilty pleasure, more like I’ve earned the right to have it and enjoy it. If I could afford it, I would buy one of those little electric cars and use the truck less.  I would take public transportation back and forth to work if it were practical, but, last time I checked, it was about an hour and a half each way vs. about 18 minutes by car. That is not a reasonable trade-off. 

There has to be a point where one stops bullying themselves about what they can’t do and do more than just make do. Yes, I said that in an obscure way just to over use the word ‘do.’ Must we always be willing to settle for less? Today, this suits me, and I will make the best use of it until such time as my circumstances and abilities change. One day, pretty soon, I think that I will get on a freeway onramp, put the pedal to the floor, and smile.

Tuesday, September 13, 2011

A Forum Post

Gasp! a blog post! 
This is from me, on a forum. I think if you read it you don't really need more context than that. Just saving it for posterity, thought you might like it.

I understand what and how you are saying it, Oxy, but you are assuming that everyone sees this world the way you do. They do not.
It does no one any good to wish that Emma was anything other than what she is. I, of course, would welcome any treatment that would improve her cognition and abilities, but it would not change who Emma is.
There is nothing special about DS nor autism. Every child is a blessing. Yes.
The blessings are where you find them. I would hope that you could believe that many of the most contented moments of my day revolve around just being with Emma - pure love, pure fun, holds me in her arms like no one else can. I look for those moments, and savor them when they are here. In many ways, including the support I receive here and see others get, she has done more for my faith in our species than anything else. That is backward - she's a 'defective' copy, and yet she displays her humanity in ways that the rest of us inhibit to the point of self-destruction. To miss that message, in my opinion, is to miss a fundamental aspect of what it means to be human - across the spectrum of humanity. Overcoming suffering - in all of it's forms - physical and mental, from within and without - is a component in just about everyone's life, at some point. I am not saying that I am any good at it, I'm doing the best that I can, but this is another thing that has been brought into sharp focus for me through Emma's existence.
Some get way more suffering than others, some are destroyed by little, some (I have some personal heroes here) amaze me with their resiliency and personal resources. I can learn from them, but I cannot be them, I must find my own path. I can certainly appreciate and applaud others' ways of overcoming. I don't agree completely with Viktor Frankl, but what a story of succeeding through the most horrible suffering imaginable.
I put the whole "blessing" thing into the same basket with "all DS kids are happy." It is a very poor reflection of the whole picture. But blessings are there, and they are available.
I cannot follow the thought that I was somehow chosen to have Emma; the implications take me to a place that is completely theologically untenable to me. I won't know the answer to that until after I die.
I've shared the 'revelation' that I once, very grief stricken, had the thought that Emma would be made 'perfect' in heaven. I almost immediately had two thoughts: 1) How would I recognize her, then 2) how would she recognize ME? How imperfect am I?
I'm not attacking you, Oxy. I'm still angry at DS, pretty sure that I always will be. My desire is that you can find your way to see what these folks here have learned, for them, to find meaning for yourself. I'm still working on it, too.

Wednesday, June 01, 2011

Just Right.

Sometimes the reasons that certain things seem timeless can only be revealed in the dead of night. I realized this at about 3 a.m. this morning, as I knelt beside Emma's bed retrieving "Goldilocks and the Three Bears", to drone her back to sleep. The simple refrains of "Too Hot. . . Too Cold. . . Too Hard. . . Too Soft. . . Just Right" hold a rhythmic quality that, frankly, stalls for time when one is looking for quantity over quality. These phrases provide both, and require much less in the way of material to remember. I got almost all the way to the end by the time I could hear her steady breathing; my eyes were too bleary in the dark to see if she was sleeping.
 I don't know if the author intended it to provide this sort of comfort to weary zombie parents, their senses dulled in the wee hours, but it is sheer genius.

That I can get away with this old story with a nearly 12 year-old is some of the 'sweet' part.