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Why I am petrified

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The whole pack was together then

“He says what we’re thinking.”

Hearing that petrifies me. I feel a panic rising and sometimes it hurts too much to move and I think I’m turning into petrified wood.

See, I’m one of those people who’ve had complete strangers come up and tell me my child would be better off dead. I’ve heard them refer to him as a “pathetic little thing” as they walk by. When my son was born with severe disabilities that affected every single part of his body, I found I pretty much had to prepare myself to hear and see anything when we left the safety of our home. When I wrote a letter to the editor of the Oregonian describing the need for services for children with disabilities many years ago, back when the paper published a letter writer’s home address, I got a letter in the mail telling me I should have had an abortion so I wouldn’t be burdening society with his existence. I saw people mocking my son’s unusual movements behind his back. I heard people laugh at him.

Over the years, especially after the passage of the Americans with Disabilities Act, fewer people said cruel things and the mocking diminished. Or went underground. I chose to believe our society was becoming more accepting of and kinder to those born with disabilities. And that we had reached a kind of civic agreement that society would include them because it was right and just and good for everybody. (Even then I was admonished by a boss to stop bringing up my son as an example of lack of equity.)

A few months ago, I watched a presidential candidate openly mock a person with disabilities, to the delight of the crowd. Later I saw a video that captured someone kicking a child in a wheelchair being removed from the same candidate’s political rally, while those standing nearby cheered.

“He says what we’re thinking.”

The candidate who made fun of the body position of the person with disabilities will soon be president. He will have the support of both houses of Congress, whose leadership have made it clear for years that they want to reduce/end/privatize government programs designed to help people who can’t equally compete in the system that promises to provide “liberty and justice” for all.

We paid the extra costs we faced to accommodate our son’s disabilities (e.g. an addition to our home with a wheelchair accessible bedroom and bathroom, a 70-foot concrete ramp, vehicles that would accommodate lifts, etc.) with no government assistance whatsoever. We did this because we knew our son was as valuable as any other person on earth and we would do whatever it took to give him a wonderful life. We gladly made sacrifices to do without things other families had. But in order to do this, he had to have access to medical care that we could not begin to afford. Insurance companies were allowed to exclude people with pre-existing conditions then. When you are born with his disability and need surgery within hours to save your life, you are never without a pre-existing condition. The marketplace does not take care of people with severe health care needs because they are not profitable.

The Affordable Care Act (Obamacare) prohibits this and makes insurance available to people who used to be assigned to high risk pools that were outrageously expensive and inadequate. Publicly funded health insurance like Medicare and Medicaid is efficient and affordable because it does not have to cover exorbitant executive salaries, huge advertising budgets, and maximize profits to shareholders. That’s why large group participation and government requirements are needed for those the marketplace will not support.

If these health care needs are not met, people die. In other words, they are aborted after they are born because their existence is deemed too much of a burden to society.

I lost my son nearly two years ago, as his health challenges were finally too much for his body. I miss him so much I can hardly make it sometimes. There is a hole in my heart that will remain the rest of my days.

I’m not the only one who misses him. While he was here, he made the world a far better place.

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The day Free Geek celebrated Blaine’s 10th anniversary

Blaine worked at Free Geek for more than 11 years, teaching people who couldn’t afford to buy computers how to build their own for free. This is what the person who was his supervisor wrote me on what would have been by son’s 37th birthday last summer:

“Not only did it turn out that Blaine was interested in teaching, but what was incredible and so out of the ordinary at Free Geek at the time, was the way that he did it.  He was so generous with his knowledge, as well as so kind and patient.  He never belittled a person for not knowing something, or for making a mistake.  If someone needed extra help, or extra time, Blaine never was frustrated. He stuck by that person and worked with them, with kindness and encouraging words, until they got there.  He was open and giving with all that he knew. 

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The Blaineversary cake

 

Blaine quickly became a star. Volunteers loved him. They felt comfortable asking questions and asking for help, when in the past they would often get gruff responses, or actually yelled at for doing something incorrectly.  I know it to be true that Blaine was the number one factor for volunteer retention in the Build Program. Not only that, but with his kindness and generosity the culture at Free Geek started to change. People started just being nicer to each other. When people are treated with kindness, they too start being kind to others. It is infectious. This is what Blaine brought to the organization.  It became a more welcoming and kind organization. It became a place where anyone could come to learn and not be afraid to do so. I have heard you say how much Free Geek meant to Blaine, but I want to make sure that you know how much Blaine meant to Free Geek, the organization.  He changed it in such a profound and positive way. He made Free Geek into the organization that it set out to be.” 

So you see, he and others with disabilities are not a burden on society. Mocking them is a travesty and should bring so much shame to the mocker that he dares not show his face until he apologizes and convinces us it will never happen again. If given a chance to be, people with disabilities can make all of us better. Just like all of us can. But what kind of world do we live in when a mother feels she has to justify her son’s existence so he gets to have one?

The world where “he says what we’re thinking” now feels like a death sentence.

People with disabilities are not the only ones petrified by “he says what we’re thinking.” I write this because it is what I know best. Please listen to all the petrified. Think about what they are all hearing and feeling. You may not be in any of these vulnerable positions right now, so please find it in your heart to imagine if you were.

I can’t see and hear “he says what we’re thinking” any more right now. To survive, I have to take a break from television, Facebook, twitter and other places that scare me to death. I hope to be back sometime, but for now, I just can’t anymore…

 

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This is the universe speaking. Are you listening, Marie?

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I know the universe is talking to me. And I’m listening, but I need help figuring out what it’s trying to say. These are the things that happened when we tried to take our first ever undeadlined trip in our RV Rigby this week. Yeah, it didn’t go so well. I’m writing this from my sickbed.

1. Last week, I didn’t feel good all week. Had a sore throat and a cough. But mostly just wiped out. Still managed to do all the things I had scheduled for the week, but otherwise just felt like dried snot. However, I thought I was back to my old self by Sunday, and was good to go.

2. I found all the paperwork for reservations and background material I had gathered for the scenic drives. But had the nagging feeling I was forgetting something and I just never felt all the way ready, if you know what I mean.

screen4web3. The evening before we left, I dropped my four year old iPhone and the screen shattered. Now mind you, I got my first iPhone the day they became available in June 2007. I didn’t exactly wait in line, because when I saw the line in Pioneer Place, I decided we should eat dinner and come back later. Which was just as the line was tapering down, and they still had phones! I’ve dropped my phones a bazillion times, at least. They never got even a ding in all the prior drops. Yes, I do use one of those small bumper cases on it. But this time it fell screen first on the edge of a Fiestaware plate. Believe me, you do not ever want to go up against Fiestaware. That shit is solid as the Pre-Cambrian shield. (Geography nerd joke, don’t worry if you don’t find it funny. You pretty much had to be in a Geomorphology class.)

4. We were on a tight timeline for leaving Sunday so I didn’t have enough time to make a reasoned purchasing decision or Apple Store encounter before we left, so I decided to make do by getting a clear cover to hold the glass screen pieces in place and protect my fingers from the sharp glass blade edges. Mind you, this was not even an adequate stop gap measure because the screen cover made it hard for pressure to be detected by the phone and there were psychedelic picture shows whenever I pressed down on anything. I pretty much gave up trying to type and depended on Siri for pretty much everything.

5. We went to my dear brother’s 64th birthday/retirement gathering and all was well. Afterward, we went to my mom’s to spend the night in Rigby outside her house. All of a sudden, I felt like I was going to collapse and laid down and the next thing I remember is regaining consciousness a few hours later. Felt much better but it was so weird.

6. Started coughing again that night and Ric said, are you sure we should do this, and I said, yes, the clear forest and mountain air is just what I need.

7. Had three warning dreams Sunday night. The warnings were about three really different things, none about camping, but it felt like they were all delivering the same message: Do not go about your business as you have been. Watch out and be very careful. Danger lies ahead and you don’t even know it.

8. Monday morning, all the outside electrical source power in Rigby suddenly stopped working when a circuit breaker blew in mom’s house. Nothing Ric tried restored it and the lights showed we weren’t getting anything in. Whatever that means. My cough was getting worse.

9. When we stopped to get gas, some got on Ric’s shoes, and my cough got ever worser.

10. The ride over the hills along the road and river where I grew up was wonderful and the air smelled so good. Hope was rising! But nothing from my childhood really remained. It’s become a ghost town. Well, it was never a town really. It’s a ghost zone. Businesses gone. Buildings boarded up. Structures collapsing all around. The whole place is actually for sale. It’s hard to see a future there. It felt really ominous.

craterlakeforweb11. We made it to Crater Lake early afternoon Monday and it was just as stunning as I remembered. The weather was beyond gorgeous. I sat and stared into the blue. Loved watching Ric see it for the first time. But after walking a few steps, I had to sit down and rest because I was out of breath. Must be the altitude, I thought. Been at sea level all these years, I forgot how to act at elevation.

12. Even though it was the off season, we had to wait quite a while for dinner. During dinner, my voice went missing. You could watch it happen in slow motion.

13. We had no cell phone coverage whatsoever. AT&T, have you not yet discovered areas outside cities? Wifi was expensive. A private company charges for wifi in national parks? Seriously? But never mind, because a phone with a screen so broken you can’t really touch it isn’t all that useful when you don’t have a voice to talk to Siri.

14. The more my voice went, the more my cough came. I’m sure it kept poor Ric from sleeping too. My throat started closing up and my chest was tingling all over. At 2:30 am, he sat up and said, “We need to get you home. You stay in bed. I’m driving us now.” I didn’t object. Objecting is hard when you can’t make a sound.

15. On the way home, Ric called my doctor’s office, only to learn the whole building had flooded and they were in crisis mode. He tried to get an appt at urgent care that takes Medicare, but appts were booked for two solid days. So we went to the ER. It was so busy that they were no longer accepting ambulances. Several hours later, the person who saw me asked, “Did you try to call your doctor instead of coming to ER?” and I tried to explain about the building flooding but that’s really hard to do without a voice of any kind. I tried to mime it, but she just said never mind.

15. I’m on my second day of bed rest and it, along with codeine cough syrup, is starting to help. I still can’t make sounds, but I can type. I had to write this down because someday I will forget that this many things can go wrong at once and run the risk of rinsing and repeating.

I know you’re talking to me universe, but what is it exactly that you are trying to say? Don’t ever leave home? Don’t even think of taking an actual real vacation? The end is near? You’re out to get me? I need to learn yet another hard lesson? You’re messing with my mind?

It feels like you’re being a little passive aggressive here, universe. Can you please just put it into a plain old sentence, using direct words with unambiguous meanings? I’m getting too old for this.

As the crack widens…

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The crack in Blaine’s ramp is widening. A companion is beginning to appear at an extrapolated line in the next segment. I wonder what is happening beneath the surface. Surely there is something going on down there.

Some 15 years ago, downslope from the ramp, a deep hole suddenly appeared in the parking strip next to where the driveway lowers to meet the street. A woman walking her dog stumbled when her right leg disappeared into it. Later, Ric poured potting soil into the hole. After several bags had been swallowed, it reached a state of equilibrium and has been level ever since. It still holds up, even when you step on it. But i keep a watchful eye.

When the crack in the ramp grew to a width that couldn’t be ignored, I wrote to the city. I raised a question of perhaps some kind of underground leak from the water main or sewer pipe, with the resulting flow carving out a cavern under the street. I told them about the potting-soil-swallowing hole just downslope too.

The city never responded. I wonder if the web contact system they use actually works. I wrote to a woman in another city department about another issue and never heard back from her either. Maybe my name has gone on to an internal list of people who write to the city and should be ignored, like they used to check your name against a list of people who had written bad checks at the grocery store.

The cracks in the driveway are expanding as well. My concerns continue to grow at the same pace. I have a sense of a coming calamity. That surprises me because I can’t imagine a calamity worse than the one we experienced a year ago. Nothing can be worse or even as bad as Blaine leaving us too soon. Shouldn’t the cracks have stopped growing then? I’m certain his passing made the earth wobble.

My geographic training takes my mind to the Big One that is coming. Later today or in 300 years. Nobody knows when. So we live our lives with that in mind while we yearn for understanding and acceptance. That’s what I’m still seeking from the calamity a year ago.

I didn’t see that calamity coming, though others have told me it was to be expected. I didn’t expect it. Would I have lived differently if I had? I don’t know. How could I?

I do expect some calamity to come of the crack in the ramp. And I’m trying to waylay it but so far my actions have come to naught. I have visions of my car resting at an uncomfortable angle of repose at the bottom of a sinkhole that swallows part of our street.

I guess I shall try the city again… I think they should burrow one of those snakes with a camera on the head to check what’s happening where we can’t see. Maybe we could avoid a sinkhole calamity if we nipped it in the bud.

That won’t really do much about the larger calamity it could be warning about… are we safer in the long run with such a visible caution? Only if we figure out what to do, I’m guessing. And only if there is something that can be done.

Is is better to know what calamities are coming? Or to just live and have them clobber you out of nowhere and try to survive the aftermath? Is this a question for an engineer? A geologist? A fortune teller? Or the knowing that lives inside me?

Maybe I’m cracking up.

My 2015 Baseball Observations

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So I don’t follow baseball (I retired from the game on principle when Curt Flood did), but I share a home with a sports-watching dude-hub. So I can’t help but absorb some of it from time to time.

And when I do, I notice things. Probably not the things everybody notices. But there they are, just lying there waiting to be shared.

Here goes:

  1. I think somebody did something funny with the ball or the bat in the off season because what is with those high scores?? Many many double digit scores. Like 22-11 or something. That’s a respectable football score, that’s not a baseball score.
  2. Some of the uniforms are just complete puzzlements. Like I swear I saw a team wearing tunics and pedal pushers the other day. If you are under 50, you have no idea what pedal pushers are, I know. I didn’t witness it myself but someone tweeted that a team was wearing onesies in a game. Surely a sore for sight eyes.
  3. It also seems that players are muddying their uniforms more often than I remember in the past. What’s going on? More sliding into base? Have we achieved kamikaze baseball? Where’s Dick Harter?
  4. Baseball players are getting really really big. Massive. Like Sequoia tree big. Some look like football players. Now that there are tests for performance enhancing drugs, is there some kind of breeding program underway?
  5. There are a lot of empty seats in the stands for many games.
  6. With the little box that shows exactly where the pitch crosses the plate, video review of calls of plays on the field, how much longer till we have robots for umpires? I don’t see umpiring as a career of the future.
  7. I don’t really approve of rule changes in baseball. Partly because I’m old school and it just doesn’t seem right to change things. I’m looking at you, designated hitter. But partly because I’m old and I can’t remember the changes. Like I was going to comment on one here but, see, I can’t remember what it was. Your loss.
  8. On the subject of rule changes, stop trying to speed up the game. I like the leisurely pace because it’s possible to relax and enjoy the view. Talk to your seat mates. Be mellow. Calm down. I don’t know why everything has to be so quick quick wiki wiki every minute of the damn day. Allow us at least one option during which can be enjoyed at a Mary Jane mellow rate of speed.
  9. I love how international baseball has become. It seems like a lot of the best players increasingly come from other countries. Wonder how long it will be before they stop coming to the US to play because the game will be more popular and well attended in their home countries.
  10. Have the Mariners set a record for blowing leads this season?

I think there were more, but I forgot what they were. Maybe I’ll add them later. Or not. Talk amongst yourselves.

As the page turns… in the real Portlandia!

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Go ahead and judge this book by its cover.

Go ahead and judge this book by its cover.

Grieving is hard. It’s long. It does you in. It doesn’t end. Some days getting out of bed is the most courageous act you can imagine. And accomplish.

I already know I will be grieving Blaine the rest of my life. You have no earthly idea how much I miss him. Just to exchange one more glance, I would give everything. To see him smile. The universe for one more hug. The chance to say goodbye.

In what now seems clearly a survival strategy, I actually managed to finish the book I was working on when Blaine left. I dove headfirst into a deep and consuming project. Not only were the words my responsibility, but also the design and layout. And know this: when the author does the layout, the words seem never to be finished. Catch that typo. Use a different turn of phrase. Put in that cool thing you forgot. So it takes longer than it takes. (Credit to an old friend, Paul Nyrczinski, for that aphorism: “Things always take longer than they take.”)

But it finally got printed. And delivered to us. You can see a video of Joyce and I opening the first copies here. And we have a real live website and everything, look here.

Since the shipment of three pallets with 2,500 books arrived, we have embarked on a marketing campaign so we can sell the books and recover our costs. Yes, we self-published. It’s our very own necks on the line.

So far, in addition to purchasing the book from our website, you can buy it in a growing number of retail locations. Powell’s Books, for example (all stores except the one at the airport)! Did you know you can order from Powell’s online and pick it up in a store without any shipping cost? Or you could buy two books and they would be shipped for free!

The book is also available at a number of New Seasons Markets. Multnomah County Library has it (OMG, all copies are checked out right now, they better order more!!). Other bookstores like Broadway Books, Reed College Bookstore. Quite a few quilt/fabric stores: Cool Cottons, Fabric Depot, Pioneer Quilts, The Pine Needle, A Common Thread, Greenbaum’s Quilted Forest, The Cotton Patch.

And soon it will be in Made in Oregon. And who knows where all. We are relentless in our marketing efforts. By the end of this, we should be able to write a book about marketing a book. Not that that’s never been done. 🙂

We are proud of our book. We think it will appeal to a whole lot of people:

  • people who live in Portland and want to discover what they don’t know about their home town
  • people who visit Portland (or want to) and want a tangible record of their experience that goes way beyond a phone full of selfies,
  • quilters who have always wanted to see quilts in a leading role, and
  • every person not in the above categories

So we think you might fit in there somewhere. Check it out!

Why I’m Voting No on Portland’s Water Board Measure

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There’s something that really bothers me about the campaigns and lawn signs and ads and tweets and posts I’ve seen about taking control of Portland’s water away from the City of Portland and into the hands of a board of private citizens. It’s because I haven’t heard either side talk about the issue that worries me most, based on my study of Portland’s water over two decades.

The real control of Portland’s water and the Bull Run watershed that provides it lies with Congress, not the city of Portland or a future board of private individuals. The federal government owns the land and decides what happens on that land.

Those of us who have lived in Portland for a long time remember when there was clear cutting on a large scale in the watershed, despite the Bull Run Trespass Act that President Theodore Roosevelt signed into law in 1904. Because logging and the associated construction of roads is known to increase turbity (muddiness) of water, which makes treatment with chlorine less effective and is a public health issue, a retired Portland physician sued the U.S. Forest Service in 1973, charging that logging violated the Trespass Act.

Bull Run Reserve from the air. Image by Oregon Wild.

Bull Run Reserve from the air. Image by Oregon Wild.

He won and logging was halted for a short time. Then Congress rescinded the Trespass Act and replaced it with the Bull Run Watershed Management Act 0f 1977, which legalized further clear cutting. The watershed was managed by the U.S. Forest Service, which many thought saw the watershed as a source of income from timber sales. Logging resumed full steam ahead and critics argued that water quality suffered as a consequence. By 1993, close to a quarter of the Bull Run Reserve had been clearcut.

In 1994, another lawsuit put part of the reserve off limits in order to protect the habitat of the northern spotted owl and other species dependent on old growth forests. Finally–33 years after the lawsuit–in 1996, Congress passed the Oregon Resources Conservation Act, which prohibited logging on all Forest Service land in the reserve, and in 2001 it was extended to include all land in the Reserve and the Little Sandy River drainage. Portland’s water was finally fully protected by federal law.

But as happened earlier, what Congress gives, Congress can take away. In the last several years, we’ve seen a forceful assault on laws and government bodies that protect natural resources for the public and Congress is under a lot of pressure to maximize revenue without raising income taxes. Don’t assume for a minute that Bull Run watershed won’t be on the table again as a potential revenue source, just as it was not that long ago. And depending on who controls Congress and the executive branch and who sits on the U.S. Supreme Court, we could have much to fear about what’s in Portland’s water.

Frankly, I think Portland’s water’s chances are better in the federal system if local operational control is in the hands of a City government. I think a City has more clout, more credibility and more power going up against Congress than a newly formed group of citizens, however well intentioned they may be.

Viewing this ballot measure as a way to fight pet projects or covering reservoirs is dangerous, I think. Those are distractions, in my view.

I want us to keep our eyes on the big 500-pound-gorilla. And to do that, we have to think about where the water comes from and what happens to it before it gets here. And that’s why I’m voting NO on 26-156.

 

I’m still here…

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Yes, I have been neglecting my blog. I’ve been sorting things out, settling…trying to get a handle on this new phase of my life.

Along the way I have learned what a toll waiting and uncertainty takes on me… and how big a part of my life unpredictability has been.

I remember trying to explain to Ric how I have to live soon after we met and started our “conscious coupling.” (Sorry, couldn’t resist… don’t get me started on that particular variation on contemporary culture please.)

All Blaine’s life, there has been the distinct possibility of the other shoe dropping and disaster befalling us. His shunt could stop working. His shunt (and brain) could get infected. He could get pressure sores. His pressure sores could get infected. An infected pressure sore could result in sepsis. He could die. His urinary tract infections could ruin his kidneys. He might need dialysis. He might need a kidney transplant, although I don’t know if he would get on the list.

And those are just the physical health issues. There are lots more in other categories. But this list will do for now.

The consequence is I always have to keep something in reserve. I can’t expend all my energy on anything at one time because I never know what I’ll be called on to face in the next week, or day or hour. So I can’t run a sprint that completely exhausts me, I have to hold back in case the finish line is 26.3 miles rather than 100 yards. And it might end up being more than a marathon.

Adapting to this kind of life has no doubt shaped me. For example, I look for reasons to be happy. I seek out light even in the deepest gloom. I find a lot to be grateful about in the moment. I get a lot done because I think this hour might be all I have to work on this for now. I am pretty good at keeping the big picture in mind while breaking things down into one step at a time.

But it’s also taken its toll on me. When uncertainty is at its greatest, I get stuck because I don’t know if I can plan. Well, I make a lot of lists but they don’t go anywhere. They just get carried over and grow longer. The longer they grow, the worse I feel. The worse I feel, the longer they grow.

I dither. I can’t figure out where to start, so I start pretty much everything then switch to something else 10 minutes later. I’m in a big mud hole, my wheels are spinning and I’m sinking further into the muck. I feel so unsettled.

When I have another layer of uncertainty on top of the background  radiation of it that is the rest of my life, it gets really bad. This has kind of been going on in the background ever since I semi-retired. I had a plan about what I would be working on part-time, but before I could begin, it had to get funded. And that has has been my condition for more than two months. I believe it will all get sorted this next week and I will get back to my usual level of uncertainty.

And hanging on to that hope has finally given me the courage to appear here.

So hello. I’ve missed you. I hope this is the beginning of a beautiful renewed relationship.