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After ALS Part 2: "The More You Lose, The Bigger Your Heart Gets"

I wanted to record some thoughts I have been having about the heart.  I have been someone more about the head than the heart for a lot of my life. I think that is how most of us navigate early on - using our natural inclinations to help us move through life.  Since I am a "head" person, I would analyze things heavily and relied on logic to deal with life's twists and turns. This worked out pretty well, but possibly robbed life of some joy, while providing some stability to deal with challenges. After getting terrible grades one semester in college, and being told to take a semester off , I was evaluated by a team of education consultants, psychologists, etc . One of their conclusions was that I lacked "joie de vivre."  Which on the one hand, is how my low-key, analytical personality can come off. But on the other hand, what did they expect from a 19 year old in that situation? One of the things I have noticed is that some of the things that I have experienced in...

After ALS Thoughts Part 1

Well, I am now a couple of months out from my dear Alisa's death on Oct 8. 2024, feeling inadequate again about not writing much in this blog, which I had wanted to do, inspired by Ron's friend who died from ALS. Having a sad moment right now, just missing her, and feeling crushed by what she had to go through. I was right there with her of course, but I was focused on helping her through whatever challenges she might be having in the moment (and possibly in coming weeks), rather than really sitting with what was going on. And when I had a break from caregiving, I really needed an actual break, rather than sitting with what she was going through. Of course we grieved the losses together as they came (riding the waves of loss, as Laura so aptly put it), but for some reason, now, after she is gone, when I think about what she went through, it hits different, as the kids say. And it hits hard, to think of how excruciating it must have been for her to lose almost all the functions ...

Further ALS observations and my own health

Not sure when this was written, but probably in 2023.   Well, as with many of my journaling efforts over the years, this one has faltered. I'd like to think that I have a better excuse this time, what with working full-time and caregiving to an ALS patient, my dear Alisa. And yeah, that is a very good excuse! Certainly the best one I have ever had. It doesn't, however, take away from my desire to record what we are going through in something approaching real time. The Caring Bridge site does that to some extent, and Alisa has been great at posting there. We have been trying to practice self-compassion over the last few years, even pre-ALS, so I won't get too down on myself. I am also experiencing the care-giving process as a what I am calling an "experience in empathy," and also of compassion. I have of course been challenged by the care giving, but overall think I have been handling it well. Other than I had a recent incident of going to the hospital after I was ...

An addition to the sadness

 2/11/2023: Well, as expected, I have not been back to this blog much since my last post a couple of months ago. Alisa's progression has progressed unfortunately, and her speech is really suffering. This is part of the brutality of #ALS - it just keeps taking things away from you. As one of our friends said, we have to keep "riding the waves of loss." Quite accurate, but some are worse than others. For my dear Lis, speaking is something she was good at, and always had lots of nice things to say to people, so I can't imagine how difficult it is to have her preferred form of expression curtailed so drastically, especially in the devastating drip, drip, drip fashion that it happens in #ALS. We are just over a year in from diagnosis (1/13/22), which is both hard to believe, and depressing, especially looking back at how she was a year ago, speaking reasonably well, walking well, etc. A picture came up on my phone of her and Bella up on Mt Toby right about a year ago, with...

A Simple Twist of Fate

Although I am not much of a Dylan fan - I could never get past his mediocre voice - my partner Alisa is, and this is one of her favorite songs. And it applies brutally to what has happened to her, which is that she was formally diagnosed with #ALS in January 2022, after a series of doctor visits. So this blog is going to turn into a a bit of an #ALS journal for a while, although not necessarily exclusively. We have a CaringBridge site set up so I'll not duplicate much of that. One thing that didn't make it on the CB site was my initial email to family and friends, which I do want to reproduce here as a record of how things went early on. I'm going to go back a little bit for those who haven't been part of the process early on. We noticed some speech and swallowing difficulties in the late spring early summer last year. We didn't think too much about it (but should have of course), thinking it was due to some sores in her mouth (as opposed to the cause of those sore...

Get The Money Out of Politics

[written in 2013] The more I hear about the crap going on in our country as a result of politics, the more it seems obvious that the solution is to get the private money out of politics all together.  But of course, with the Citizens United decision, the Supreme(ly stupid) Court has pushed the country in the other direction, with unlimited, secret contributions now allowed.  I mean, if you think of a problem in this country, it is almost always traceable to the money. Climate change? Traceable to politicians who won't budge because of the oil money. Minimum wage stagnation? Corporate money and lobbying. Two wars that bankrupted the country? Halliburton and other oil services companies that benefit from accessing more oil, not to mention defense contractors!  In fact, oil is the main reason we are involved in the Middle East at all.  Think about it - if we didn't care about the oil, we wouldn't really care about what went on there, and the Middle East could burn itsel...

Why Elect People Whose Goal It Is To Eviscerate Government?

Ironically, the somewhat conservative NY Time columnist David Brooks makes this point in a recent article .  It is something I've wondered about for years.  I mean I guess if you hate government, then it makes sense to elect people who also hate government and want to make it small enough to drown in the bathtub.  But in some ways it is a beautiful virtual cycle for the right again.  Elect people who hate government, they do a crappy job running the government because they hate it. Then people who already hate it get to hate it more because it is not working! The other point Brooks makes is about the central story the right has been telling for years:  Encroachment Story: the core problem of American life is that voracious government has been steadily encroaching upon individuals and local communities. The core American conflict, in this view, is between Big Government and Personal Freedom. While losing the popular vote in five of the last six president...

Sandy Hook Elementary, Newtown, CT Mass Shooting

My thoughts at my Tumblr, Random Reaction 2 .

Simplifying Politics for a 13 Year Old

My 7th grade daughter is apparently getting into some political discussion in Social Studies early in the semester, and asked me some questions on the way to school today.  Aside from being disappointed that her teacher had simplified the difference between the 2 parties to "government more involved in your life vs. less involved in your life" (which would be another post), we started talking about taxes and the deficit. Trying to simplify for her what has happened over the last decade actually provided a bit more clarity for me.  I mean, at the most basic level, Clinton delivered a budget surplus to George W. Bush, and Bush proceeded to enter into 2 wars (somehow funded "off the books," which I have never really understood) - one of which was completely unnecessary and entered into on false, ginned up, possibly illegal pretenses (again, another post) - implemented massive tax cuts for the rich, and deregulated, and failed to enforce existing regulations or even pay...

Why Does The Right Still Have a Leg to Stand On?

Very interesting article on a different way to view the economy.  And it finally gets to the concept I've been wondering about during most of the Obama presidency: why are the Republicans still able to continue to trumpet the mantra of lower taxes on the rich, when they succeeded in lowering those taxes (and radically reducing regulation) under the Bush administration, and we got The Great Recession for it?  They just don't have a leg to stand on, but apparently they have been pounding this mantra for so many years in so many ways and through so many media outlets, that they have brainwashed people into thinking that it is true, contrary to any other evidence that might come along.  I know there have been other articles about why this is so, why people continue to believe untruths in the face of convincing evidence to the contrary, but it doesn't mean it isn't frustrating to watch how successful the right's campaign has been to brainwash the masses.  I mean, why are...

A Level Playing Field For All

I was listening to the Bill Neumann Show this morning on the way to work (I'll provide a link to the podcast when/if it is posted), and he was interviewing a pharmaceutical entrepreneur who also happens to have been heavily involved in civil liberties.  The entrepreneur made the point that America is special, not because of all the chest-thumping reasons of the exceptionalists, but because of a different concept of freedom.  The Bill of Rights enshrines certain freedoms, which actually benefit businesses by providing a level playing field, from free speech onward.  Good point, but he didn't take the next step, which is something that I have been thinking about for a long time, but have yet to see really emphasized: that level playing field does not happen on its own, just by words on a  page; it is created and enforced and evolved by the government .  That is a very large part of why the government exists - to provide and enforce a level playing field...

The Rich Get More "Speech" Than The Poor

The effects of the Citizens United Supreme Court decision are now really being felt as we have seen in Wisconsin and some other races that shouldn't have been national races, but ended up being so because of all the money that poured in.  I fundamentally object to the concept that money is speech, which was a decision made by the court a long time ago.  And now we see that since money is now unlimited, the effects of it are more pronounced.  I mean if money is speech, then that means rich people get more speech than poor people? How can that be?  That is not a democracy, that is a plutocracy.  Not that there was much doubt that that is what we are living in, but let's name it.

What If They Are Wrong?

This article has a concept that I have been thinking about for a while, ever since I wrote up a draft of a response to a friend on Facebook, who posted about the "danger" of a carbon tax. The concept is to think about what the ramifications are of being wrong about the climate "debate" (there really isn't any serious debate about carbon dioxide in the atmosphere or even warming, but whether we are responsible and whether we should do anything about it) on either side. If we act on the concern over climate change by implementing a carbon tax to help drive sustainable energy innovation, and we are wrong, then we have perhaps put a bit of a brake on economic development. But maybe not even that, because perhaps the energy innovations create a self-sustaining economic benefit of their own, both in technology, and the fact that pollution of any kind is waste, and waste is inefficient economically. So the ramifications of the climate concern crowd being wrong are...

$1 Million a Day

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I heard that it costs BP (and presumably other companies  as well) $1 million a day to run these oil rigs.  There was another huge number as well regarding the costs of deep water drilling, but I can't remember what it was.  But this just kind of staggered me.  I mean, think how much money it costs with shipping, refining, transportation, et cetera to actually produce energy from these fossil fuels.  It prompted me to post this comment in the NY Times Dot Earth Blog: I agree that in terms of seriousness, the BP spill is *relatively* small potatoes compared to climate change, but what it does in my mind is provide an additional non-disputable reason to get off fossil fuels. Not only do they pollute the air when burned, they are dirty and risky to extract. Not to mention the wars we have fought for oil, or the funding we provide to regimes that hate us when we buy their oil. Mountaintop removal mining, other mine disasters, etc. Human, monetary, military, environmental costs are just...

Things I Hate About the Palm Pre

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First of all, I really do like the Palm Pre overall.  It is an awesome phone with a lot of great features.  It is fast, and syncs up pretty well with GMail.  But it advertises that it syncs with Outlook, which it apparently only does if you have an Exchange server set up.  Well, that is fine for business users, who are apparently the target of that bit of propaganda.  But it does nothing for those of us who just use Outlook without Exchange.  THAT requires a separate piece of software ($$ is the only kind I have found) to sync up your information with GMail/Google, which then syncs back with the Pre.  Not very elegant, and Google doesn't handle things like Notes and Tasks all that well.  And speaking of Tasks, the Pre reminds you of them, but there is no way to snooze the tasks; they just sit there until they are either dismissed or done.  And they get added to your Google Calendar, which is annoying if you share it with anyone.  There needs to be a bit more control over how things...

The Party of Me

I have been wanting to write about this for a while, but the concept didn't seem fully formed. But sometimes writing about it can help to more fully form a concept. I am no longer going to assume that I am going to come back to a post, because that has never happened. What I want to write about is the Republican party, which I think is basically the Party of Me. As in, I've got mine, so don't bother Me. I've got my money, so don't bother Me. I've got my health care, so don't bother Me. It really does boil down to the question: "Do you have ANY empathy for your fellow man?" Not your friends of course, but people that you don't know. Do you give a crap about the other people in the world, or not? Are you willing to pay a little extra in taxes so that the government can help take care of people who can't take care of themselves? It amazes me how much mileage Reagan got out of his "welfare queens driving Cadillacs" meme. ...

The Pursuit of Happiness

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On a day back in February I felt inordinately happy, and I am not exactly sure why. I mean, most of the pieces of my life are in pretty good shape: healthy, loving wife and kids, some financial security, a job with meaning, friends who care, etc. But I am not a happy-go-lucky kind of guy. I am more of an even-keeled person who tends to worry more about what could go wrong rather than what is going right. So it was with some surprise that I found myself feeling this way yesterday. It wasn't necessarily and everything-going-my-way type of day, but things did go well overall. I think part of it was a somewhat silly (as in shallow) looking forward to the Duke-UNC game that I was going to watch that night (unfortunately Duke lost to a very talented UNC squad). I looked forward to relaxing and having a beer and wings and watching the game. Pretty normal day at work, went to kung fu, which as has been the case for a number of weeks now, was not able to fully participate in because...

Day of Reckoning

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The sun is high in the cloudless sky, the temperature is in the 90's and so is the humidity.  It is surprisingly still in spite of the immediate proximity of the South Carolina beach and its unfulfilled promise of a cooling breeze.  I've wrapped my light-colored shirt around my head like some sort of floppy turban to try to absorb sweat and shield the sun.  It doesn't do much good.  I look over at the bales of dried pine straw that I still have to break up and spread on my parents' yard. My cousin is helping me, but I know I'll be doing my fair share of  breaking open and spreading the bales of sharp, sticky needles.  I've managed to get the headphones of my Sony Walkman to sit under the shirt, and have the Walkman itself clipped to my shorts.  This is a one of the original cassette "Walkmen," loaded with the second cassette of the double cassette "album" called Reckoning by the Grateful Dead.  It became one of my favorite albums that summer ...

Obama at Interior

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I just watched President Obama address the Department of Interior employees on the occasion of the 160th anniversary of the Department.  Although it seemed at points a routine thing for him, which it of course is, he also was very clear that he appreciated the work that we do here, and not just because we protect the national parks, which was Bush's idea of environmental protection.  But there was one point when it was clear to me that there was some serious fire in his eyes, and it was when he declared that the supposed choice between environmental protection and economic health was a false one.  Although that is a mainstream idea in the environmental community and most progressive quarters, it was encouraging to hear the president say it, and really mean it.  I have talked about how it is a refreshing change to have a new "boss" to work for, but this speech made it a bit more real.  He was also dead serious when he said that we should be looking for ways to improve the ...

Does This Mean Space Travel Will Be Harder?

Dark Energy Could Be Einstein's Cosmological Constant | Wired Science from Wired.com Aside from being an interesting article, and aside from confirming the impressiveness of Einstein's theory, this made me wonder whether the rate of expansion will make it even harder to reach/communicate with other worlds in the future.  I didn't see anything that indicate the rate of expansion, but presumably it will mean that the features and bodies of the universe will be farther away and therefore more difficult to reach and/or communicate with.  That would be unfortunate, but if the expansion is very slow, it may not matter anytime in the next million or even billion years.  And if we figure out how to travel via wormholes or space-time warping, then perhaps it won't make that big of a difference either, provided the wormholes remain stable long term despite the expansion.  My deep thought for the day.