Some Thoughts on AVATAR [Spoilers]

Through the magic of NetFlix, the home-bound Kerns finally saw AVATAR (James Cameron's 3D Epic, NOT Shymalan's "the Last Airbender").

Franky, I thought it was a great movie. Good to see that Cameron isn't all about the geeky technical details, he can still write and direct a decent action flick.  Yes, it was riddled with minor plot holes and common "Tropes" used by many movies, but it was overall a solid movie and not the "Pocohontas with Smurfs" that people were claiming.

Like many people, I was moved by the story. Some came away with a renewed interest in living in harmony with the natural world and the rejection of America's evil Military/Industrial Complex. But, me being me, I had another line of thought after seeing the movie: [SPOILER WARNING!!!]


According to the movie, the Na'vi and their flying Banshees apparently "Bonded for life", and Jake's (let's call him "Patches") was faithful to him. Patches even stayed behind when the Hometree was destroyed, awaiting his master when all other Na'vi had abandoned him. So when Jake returned to his Navi body, Patches was there, forgiving, accepting, showing him that even though Jake was a traitor to the Navi, Jake was HIS traitor, and Patches would always stand by him.

And in return, Jake took flight with patches once more. Everything was just like old times, until Jake told Patches that he wanted a BIGGER, meaner Banshee to ride.


Adding insult to injury, Patches even had to help Jake CAPTURE "Big Red" here. As the final battle sequence went on, I can imagine Patches huddled in the corner of the burned-out HomeTree, sniffling, wondering what was wrong with him? If maybe he had flown faster or been stronger, would Jake have stayed faithful to him and not needed to stray? The Banshees are not used to such emotions, so the tears sting Patches' eyes, and since they have claws used for gripping onto rocks for hands, his attempts at wiping them away leave him cut up like Edward Scissorhands trying to put in a contact lens.

And as a post-credits sequence, you can imagine Jake coming back to Patches, perhaps holding a bouquet of small rodents as an apology.
"Patches! How wonderful to see you again!"
"SCREEEEEEEEEEEEEEE!" [How dare you come back here, after what you did]

(Of course, the Banshees don't have an exact language, so Jake can only guess at what is being said. And even that badly.)

"Whoa, easy boy! It's me, I'm really a Na'vi now, this is my real body! Neytiri's Mom fixed me up real good."
"SCREEEEEEEEEEEEEEE!" [Sure, you look great. What about me, huh? How do I show my face on the cliffs anymore? Every SINGLE Banshee on the CONTINENT was in that battle but me! And every single one of them saw you riding... that... THING. You bonded with it didn't you? DIDN'T YOU?!?!?]
"We saved the Tree of Souls! We sent those 'Sky People' packing back to my... er.. THEIR world! We won't see any of them again, and I'm back for good.
"SCREEEEEEEEEEEEEEE!" [So, you had your little fling. Is that what you needed to prove that you were a REAL Na'vi Man, some big conquest? And now you've let him go and got that out of your system, and we're supposed to go on like nothing happened? Do you Realize what you have done?]

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So Jake Sulley may be the savior of Pandora, but he also corrupted it by introducing infidelity to what was once a pristine, monogamous relationship.

The Gift of Song

A few weeks ago, a lovely woman named Billie from our church died. The choir quickly got together a rehearsal and learned Billie's favorite arrangement, "The Lord Is My Shepherd" from the BBC Comedy "The Vicar of Dibley"


It was beautiful and moving, and it was amazing that our choir, (a largely self-taught and by-the-seat-of-our-pants group), learned it so well after just one practice.

Choir call-time was an hour before the service, and I was on my way up to the church. It's a 20-minute drive, a time which I often try to center my mind, but today I needed to warm up, so I started singing in the car. With the radio at first, but then I turned it off to sing alone. After a few minutes of vocal free-association, I started singing "If Ever I would Leave You" from Camelot. I hadn't sung this since my final recital my senior year in high school, but out it came, complete and without a hitch. And just to see if I could do it, I sang the rest of my recital, nearly perfect from memory: "Everybody Says Don't", "Rainbow Connection" and even a little German for Beethoven's whimsical "Song of the Flea. And even more amazing is how different my voice sounded compared to then.
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I had one year of voice lessons, my senior year in high school. One of my best friends' mother helped out with the school's spring musicals and also gave voice and piano lessons. Her name is Judith Patterson. I have a long list of things that the Patterson family has done for me over the years, but Judith game me an incredible gift in that single year of lessons-- a foundation that I have slowly built upon since then.

Before that I'd dabbled with instruments. two years of piano gave me the basics of music theory, six years of playing tenor saxophone in the school band, even a year in the percussion section. At the end, all of these left me wanting. I wasn't very good at them, and I really didn't feel the desire to continue. My junior year of high school, I left the band to join the choir with my friends. At that point, I was barely above shower-quality singing, but their support and lots of practice got my foot in the door.

After that, it was just a matter of sticking with it. By the time I finished high school, I had sung in the school choir, was the Bass in the school quartet, performed with the county summerstock theater and even did an 8-month stint in a college a cappella group called B Natural. (It was for the local community college, which was in dire need of singers. I and several others were found in high schools and we insisted we were all "freshmen".) Once at the University of Georgia, I immediately joined their renowned Mens Glee Club and got a coveted slot in their a cappella group, The UGA Accidentals. Later I sang in two other independent a cappella groups, Local Vocals and LiveWire. From High school on through college and to this day, I have been a part of my church's choir. Of course, "My Church" has changed over the years, but I've almost continuously been a part of *A* church choir since high school.

From each of these groups, I have gained knowledge and experience, met incredible people and gone all sorts of places. And one event after the other has brought more joy into my life. Because I joined the chorus, I was told about summerstock theater. Because I was in summerstock theater, I met up with Brad Maffett, who directed me in B Natural and Local Vocals. Because of my work in B Natural, I was able to move the UGA Accidentals towards touring and recording CDs. Because I was in the UGA Accidentals and Glee Club, I met my lovely wife Melissa, who sang in the Women's Glee Club and Concert Choir. After Melissa and I were married, we moved to Flowery Branch, where we found St. Gabriel's Episcopal Church, and were drafted into the Choir upon our first visit.

My life could have been so much more ordinary, but that single decision to start singing and that single year of voice lessons from Mrs. Patterson set in motion the events that have defined all the key moments of happiness in my past 20 years. The fact that I can still remember--and sing--nearly every piece of music I've learned, given my limited training, is a testament to how much it means to me, how much a part of me singing has become.

So thank you Mrs. Patterson. You have changed my life in countless blessed ways and made such a difference that I cannot imagine my life without your music in it.

When it's OK to Cry

This weekend, I almost lost it and cried, twice.

(1)

'Nuff Said. If you didn't well up at least twice during this movie then you never loved a toy in your life, you heartless guttersnipe. Now I only wish that I knew the whereabouts of my Star Wars figures and a certain stuffed weasel that I named "Schnookie".(PS: Not This one.) I never thought another cartoon would be able to plumb the emotional depths that Jessie's Song from Toy Story 2 did for me, but I was wrong. This script was amazing and the direction was spot-on.

(2) After Matthew fell asleep last night, I snuck in to turn off the Lava Lamp that he uses as a night light, but accidentally knocked over a tub of legos *crash*. He half-woke up, not really conscious, looked at me and lifted up his arms, inviting me in for a hug. I smiled and gave him one and he settled back down, and was asleep again before I left the room. I don't know whether he was saying he forgave me, or if he just wanted a hug, but I'm just glad that at some level, he still wants to be close to us like that.

FYI: ALS and Communication

Maddy asked me this in my last post, and I realized that most of you probably don't know this either:

Hey Chris.. in terms of getting the nurses kinda trained like you said in your last post... why don't they send you ones knowledgable in ALS? Or is there no such thing?

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ALS is considered an "Orphan Disease" because there are supposedly too few people who have it to make "Fiscal Sense" for Pharmaceutical companies to be interested in researching a treatment or cure. the only ones doing so are the few ALS-specialized clinics (of which Emory Hospital is one), The MDA & ALS Association, and ALS-TDI -- a non-profit "guerrilla research lab" focused on ALS. We have to make do treating it with separate medications by the symptom.

Likewise, there are few nurses who have experience dealing with ALS specifically. However, in terms of care-giving, ALS shares many external symptoms with other diseases like Muscular Dystrophy or Spinal Cord Injury patients. We need someone experienced with the Vent and Tracheostomy care (which is fairly common), some light physical therapy and the ability to adjust her position.

However, we also need someone with the skill to be able to communicate with Mel (which is not common at all). The communication is the make-or-break with these nurses, and it's not a skill that can be taught to many of them. It's easy for her to communicate during the day, when she can type out words on the computer with her head-switch. But at night, it's not feasible to use, so we have to "run the alphabet" using a method similar to this video:





We run the letters, Melissa stops us when we get to the one she wants, and we keep a running tally of them. Remember that she is effectively paralyzed below the neck, so we have to rely on head shakes, blinks and facial expressions as signals. I have become fairly skilled at word/phrase prediction with her (kind of like the predictive text messenger programs on your phone) and can guess fairly accurately what she's trying to say most of the time, given just a few letters. Most of the nurses don't have trouble running the actual letters of the alphabet (and I DO sadly have to use that word "MOST"), but it's more difficult reading Melissa's signals at night, because of two factors:
1) She is lying down in bed, which makes it harder for her to signal, and
2) She has Ambien and Muscle Relaxers in her system to help her sleep. This makes her a bit groggy and makes her facial expressions less obvious, making it harder to read the signals.

When you get down to it, there is very little that needs to be said in her nighttime routine, but each thing is vital to her being comfortable and able to rest. Communicating needs like "Move legs up", "shift arms forward" or "Roll me over" are most of the messages. It may seem simple, but imagine that every time you needed to do these things at night, you had to flag down another person and spell it out to them, letter by letter, in what amounts to Morse Code.

For Melissa, even getting someone's attention can even be difficult at night. We have an alarm set on the Vent that beeps if she coughs, and she uses this to call us over or wake me up. But sometimes she can't set off that alarm because of the muscle relaxers, and the only way she has to get attention is to breathe quickly. The vent itself is very quiet, but there's a small click when it changes from inhaling to exhaling and slightly more "wind" noise when it's pushing the air into her lungs. The nurses have to learn to listen for this change in breathing, but when they're not there, I've actually learned to wake up most times when this happens. (Imagine that, a white boy who has a sense of rhythm!)

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So I hope this helps Maddy, and let me open the floor here for anyone else:

Is there anyone who has a question about ALS or Melissa's condition specifically?

Nocturnal

I have to come clean about something that has been weighing on me. For the past few months, after everyone else in the house is asleep and Melissa has gone to bed, I've been having women come to the house and... well, fulfill a certain need that ALL men have naturally. One that lately, I have not been getting met, with Melissa being in the state that she is right now. They show up around midnight, and are gone when everyone is getting ready for work and school in the morning, so most people are none the wiser about this.

Matthew has no idea, he sleeps like a log at night, and they're gone long before he gets up. Melissa's parents have occasionally stayed up later than usual, and there has been that awkward meeting in the upstairs hall. They know what's going on. They know the stress that I'm under. But they also know that I love Melissa very much, and that I am doing everything I can to take care of her. I've told my parents about the women. Hell, Dad understands my needs, he's even given me some money for it, if you can believe that.

At first I tried to deny these physical needs, push them to the back of my mind. I figured that if I was strong enough, if I just loved her enough, I wouldn't need this. But the body can only go so long without it. I felt some shame at first, but a neighbor had some connections, a friend who ran a service that would provide nighttime companions, one after the other. If I didn't like one, I could just send her back and someone new would be sent out the next night. I have my favorites that come for repeat business, but sometimes there will be three or four different ones in a week. The service is a lot more convenient for me, since I don't really have the availability or time to go out and look for companions myself. One time, they send someone who was actually an acquaintance of ours, and it was a little embarrassing to have her in the house, seeing us like that.

I've told my pastor, and he isn't giving me any grief about it, but he always was a bit more Progressive. And now even Melissa knows. She's not happy about it of course, she'd rather we have a traditional arrangement where we'd sleep together like most married couples. But a few nights a week, she has come to terms with the fact that I require a slightly different arrangement to satisfy my needs.



I'm talking about night-shift nurses, of course. They come in around 11 PM a few nights a week and take care of Melissa while I get some rest on the couch downstairs. Essentially, I am paying to sleep.


I posted about a year ago about the most challenging aspect of caring for Melissa being LUNCH. Things have changed a great deal since then, especially since she got her Tracheostomy in July of last year and started sleeping with the Ventilator (aka "The Vent"). Since then, meals have become easier (now blended up and put in her feeding tube) and sleep has become the #1 difficulty for both of us.

All of us get uncomfortable when we sleep, and our bodies automatically move us to another position. But since Melissa has ALS, she has no control of her muscles below the neck. So at night, she gets more uncomfortable until it wakes her up, and she needs to signal me to turn her over. This happens, on average, once every 90 minutes. Add to that the times where the Vent pressure causes her to cough, and she needs her Trache suctioned out, which can happen between 10 and 30 times a night, and you can see how getting any restful sleep for us is a challenge. While Melissa can sleep in later to make up for this, I have to wake up and get to work at 8 AM.

At bedtime, she takes a combination of muscle relaxers and one sleeping pill. That should keep a normal person asleep for the whole night, but she will usually only sleep for about 2 hours before the interruptions begin. While I have become accustomed to waking up and quickly responding to the Vent alarms (indicating a cough, either natural, or elicited by Melissa to get my attention), the cumulative effects of not getting REM sleep do take their toll on you. Sleepiness first, then lack of concentration, forgetfulness, mood swings, and a certain ADHD-like symptoms that just make working the next day very challenging.

We have two agencies that provide nurses for us, (Maxim Healthcare and Better Private Duty), and it's a challenge to find nurses that really can help us. Melissa doesn't require much in the way of skilled care, but it takes a certain skill to communicate with her, and not many of them can grasp that method. We had two great nurses that would each come in two nights a week: Jody from Maxim and Tamika from Better Private Duty. They knew their stuff and we got along well. But after Melissa went into the hospital in March, Jody had to stop working nights, so we were down to one trained nurse, and the other two nights a week, I'd train the new nurses from Maxim, so I'd have to stay up there and get very little rest. And since most of the nurses really couldn't grasp the communication method that we use, we've had a near-constant stream of new nurses for the past couple of months, and so I haven't been able to get that rest.

We're still "auditioning" new nurses from Maxim today. The only thing really keeping me going was Tamika, the trained nurse from Better Private Duty. When she was here, I could sleep peacefully downstairs with few interruptions. But last night Tamika came in and declared that she would be gone for a few months because she was pregnant. While we are happy for her, I selfishly am thinking about losing those restful nights of sleep and thinking about the long audition process for finding a new nurse from BOTH companies.

Even so, I am thankful for the help that I am getting on this. I wouldn't be fit to work if I had to do all the care of her at night. My parents and relatives have chipped in to help with the monthly cost of the nurses, and after the hospital stays as of late, I think we've hit our Out-of-Pocket Maximum for our HMO, so they will be picking up more of the cost of it until the end of the year. Like most things in dealing with ALS, any help we get is appreciated. As hard as things get for us I always keep in mind that many people who get this disease don't have the support structures of nearby family, the care of one of the few ALS Clinics in the country, and loads of friends who care for her. That is what keeps us positive about the whole situation.

Way to Normal

Things are just now starting to get back to normal for Melissa and I. We've spent the majority of the month in the ICU of Gwinnett Medical Center - Duluth, including our 12th Anniversary and Mother's Day. So not the most appropriate place for celebration.

She went in on Saturday the 8th because she was still spiking 102 fevers and having upper respiratory symptoms, even after four days on Zithromax (one of the strongest oral antibiotics out there) so they told us to come into the hospital for an X-ray of her lungs to rule out Pneumonia. Guess what? Yeah, it was. So we had to check into the ICU. I had to stay with her of course, due to her ALS. So it was a week sentence for both of us. A couple days later we got the labs back and found out that it was MRSA, a drug-resistant infection caught mostly in.. you guessed it... HOSPITALS. So our extended stay in March probably gave her this as a parting gift and it's just been biding it's time. Luckily, it was the lung form of it, not the nasty skin lesion kinds, which was easier to treat. (But still not easy.)

I told the nurses that I'd heard of Viral campaigns to get people's return business, but never a BACTERIAL one! Heh. Hmph. Well, it seemed funnier when we were stuck back in quarantine.

Long story short: She got better, they released us on Friday, she got worse and we came back on Sunday. Stayed on the other side of the ICU floor from Sunday through the next Tuesday getting rid of ALL the nasty infection with some serious ass-kicking antibiotics that ended up kicking Melissa's ass along with the MRSA.

As I FaceBook'd, "The Place Where Everybody Knows Your Name should probably not be the local Hospital ICU". We got to know most of the nursing staff at that hospital, as most of them had us for at least one shift. I even sprained my foot jumping out of that awful hospital recliner I was sleeping in, when one of her alarms went off during the night, and when the tech came out to fetch me for the X-Ray of my foot, she said "Well, Hello Mr. Kern!" She apparently did some of those great 4 AM in-room X-Rays of Melissa during our stay there.

I was able to work half-days from the hospital thanks to an INCREDIBLY understanding boss and some awesome co-workers that had my back. And to tend to Melissa for that time, some members of our church choir came out to tend to Melissa and keep her company, which she really enjoyed. I also read the first two Percy Jackson and the Olympians Books (Love them!), and Melissa watched more back-to-back episodes of Law and Order and NCIS than anyone under 60 should ever watch.

In any case, we're home now, and I'm almost caught up at work. They had to play around with Mel's meds to allow the Uber-AntiBiotics, and the shake-out of that is never pretty, but we're starting to see the shores of Normal again.

My big gripe with the whole stay now? Besides the debt of sleep that I'm still working on, I gained 6 pounds eating cafeteria and vending machine food for two weeks. Ugh.

Mel, Pneumonia and the Hospital

Most of you know that Mel was in the Hospital for Pneumonia a little while back, and due to the hospital's flaky WiFi and some other BS (more on that later), I wasn't able to get word out. So the following is my day-by-day journal of the experience, starting when I realized that we'd be there long enough to warrant an entry.
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I think today is Thursday.  Not quite sure, the days sort of run together.  BONES and Law and Order show in blocks most nights on TNT apparently,  so it is hard to tell. 

How we got here: We were going to use the Tuesday doctor appointment to get Mel caught up on her immunizations,  but she spiked a fever out of her garden-variety cold on Monday night and we had to make it a check for pneumonia.  Sure enough,  her breathing was labored and shallow and her lungs sounded bad. We had to check into the hospital and get checked out for Pneumonia. 

The nurse walked us to the new Gwinnett Medical Duluth Hospital that was next door,  which we did not know was there.  And that was something, because Melissa and I, we know hospitals. There was a segment on TV a few days ago about doctors' reaction to the new Healthcare Bill, and Melissa and I immediately recognized the backdrop of the scene as the ICU at Emory University Hospital in Decatur.  We used to joke that instead of the Disney Vacation Club,  someone should start a Hospital Vacation Club,  where for a nominal fee,  you can bank your points for stays in all the best hospitals in the country.  “Seven hundred points buys you a week stay in the famous Mount Bethel Hospital,  which was used in filming blah blah blah.”

Having a nurse from the medical offices check us in helped expedite things, and we were in for a chest X-Ray in 20 minutes. 40 minutes later, we had a bed in the ER. They needed to get some blood work on Melissa, and give her IV fluids and Antibiotics, but Mel's body was having none of that. It's always been difficult to find a vein with her, so much so that she's earned the nickname “turnip” because it's impossible to get blood from her. For the next 2 hours, six different techs stuck needles in no fewer than nine places on her body, including her feet, before striking paydirt with a vein on her neck. After stick number six, I was worried that she'd walk home with Stigmata.

I think we're going to find another Pulmonologist, since our current one decided that he didn't want to drive the 15 minutes from the Gwinnett Medical Center in Lawrenceville to come and see us here. So because of that, we had to wait for a shift Pulminologist to review the X-Ray and Admit us into the hospital proper. We waited from six until 11:30 PM for her to show up, and we didn't get to our room until 1:30 AM.  Then the happy folks at the ICU started their welcome parade. Hi! We need your vitals! Hi! We need your blood! Hi! We need to do a breathing treatment. Just a constant stream of people from 2 AM until 6:30 AM when the shift changed. We slept from 7 AM to 10:30,  only briefly interrupted by a visit from our pastor,  Father Bill.  He found me dead-out in the two-in-one,  but not enough of either,  recliner slash bed, trying to stay warm underneath those criminally thin  hospital blankets. He stayed just a moment to tell us that the parish had us in their prayers and let us sleep.

The rest is a sort of blur.  I had to call into work and tell them that I would not be returning until later in the week,  and my boss said she would assume I'll be back Monday,  and anything earlier would be a pleasant surprise all around.  Mel's parents brought in care packages for us each night,  usually two or three things from the house,  a change of clothes and some food.  They had some sort of guest wi-fi in the hospital,  but it would only load half of a page before giving up after five minutes,  and my Yahoo mail was totally unreachable.  So with few of the usual signs of time passing,  and little to do but wait for the drugs to take effect,  the time went by unremarkably.


UNTIL...  This morning. (Possibly Thursday) The doctor told us that her white blood cell count was normal again,  which is good,  but the x-ray wasn't improved, so there is a slight chance that this might be TB.  And because there was that chance,  we had to remain in isolation (Read: "quarantine") for three days while they run the TB tests on Melissa.  No visitors,  and all the nurses had to scrub up and wear masks and gloves to even enter the room now.  Yeah,  we were panicking a little bit.  Not thinking we actually HAD it,  but that we would have to stay in this room for three more days.  At least. 

Mel has been sleeping fitfully,  but I have been left to pass the short periods in between.  Looking outside as the parking lot fills up and empties again.  Wondering about the lives people go home to after a shift here.  About what they are having for dinner.  The only good omen we've had is the appearance of a half dozen ladybugs in the room.  One is even reversed—-black with red spots.  I have taken to whispering to them like Gandalf to his moths...  Speaking plans of escape from our tower.


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Saturday Perhaps?  Slept maybe tens  minutes total the whole night,  Mel just could not get comfortable.  Woken up from said ten minutes at shift change with the bursting entrance of four nurses and the flipping on of lights.  GAAAAAH.  Nurse number one says yesterday's blood tests showed her hemoglobin much lower than it was four days ago when she arrived. 
"What does that mean,"  I ask
"That she may be bleeding internally. so she may need a transfusion. As her husband how do you feel about that?"
Blink. blink. at her.
"I am ALL FOR the idea of my wife being full of blood."
Blink, frown at me.
"Means I'm okay with the transfusion. A Blood Cell Count is not something to fall behind in now is it?" I explain patiently.

And of course, being a hospital, we are still waiting, three hours later to talk to the doctor or be taken for any scans or tests to see if she is, in fact, bleeding internally.

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Later Saturday and we've finally seen that doctor. We told him about the nurse's speculation about internal bleeding and he got a weird look on his face. Then he plainly spoke "No. The body's bone marrow makes the red blood cells, and production slows down when you have a serious infection like Pneumonia. If you were having internal bleeding, your blood pressure wouldn't be this high, and it would need a place to go. And since you're not leaking blood everywhere, I think we're safe in that assumption."

Whew. Crisis averted. Unfortunately, the Pneumonia is still clinging to the floating doors of the titanic, so to speak, and we have to wait until another X-Ray on Monday for him to judge us healthy enough to leave. We are four days in and I'm going a little stir crazy. I can only imagine what I'll be like when I get back to work on Tuesday (Hopefully.)
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Sunday. we're still in quarantine but it should be lifted today sometime and we can bring Matthew in to see us.  Being under contamination isolation,  with all the nurses wearing masks and plastic aprons whenever they come in,  and now with Resident Evil: Apocalypse playing on TBS,  I'm having visions of Mel suddenly waking up with zombie strength and biting me in the neck.

Movies on:
Resident Evil - Apocalypse
Resident Evil - Extinction
Shooter

The once-hopeful ladybugs are dried up on the windowsill. They couldn't get out either.
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Monday.  The pulmonologist's partner, a short Indian gentleman, came in around eleven am.  The x-ray of her lungs is not showing improvement.  She is hardly coughing at all though, and what she is coughing up is old stuff,  lungs just cleaning house.  He also said that the third and final TB sample was collected a little too early,  so to clear us from isolation, he needs to take and process another one. That last sample was taken on Saturday morning, and we waited this long for it to get processed.

When can we take her home, I ask. And his answer stuns me.
"What is your hurry?"
Must. Control. Fists. Of. Death.
"We've been here a week, just waiting around for test results of one sort or another," I begin. "We have pretty much every piece of equipment in this room, AT OUR HOUSE, save for the I.V. and the X-Ray. So just send us home with an oral antibiotic and we can wait it out like normal people."
He eventually agreed.  But we sent another sample to the lab to clear us of the TB isolation, just in case. Then more waiting.
Movies on AMC:
The Fugitive
Silence of the Lambs
The Queen
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Tuesday. X-ray looks better. Buuuuut after Nurse Ratchet put in I.V. #12 in Mel's foot, it started turning red and swelling up. What the hell, this is a hospital, did she spit on it before she put it in or something? They have to roll in an ultrasound and check her leg for blood clots just to be safe. "It's a boy!" I tell Melissa, to calm her nerves.

After some last minute haggling, we are discharged. The TB test never did come back from the lab. I drive home cautiously, fearing that the little Indian guy is chasing us, insisting we come back. We were insanely happy to get home, and to see Matthew. Then we got upstairs to our room and found out the A/C was out. And the forecast was for 80-degree weather all week.
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Present Day:
Melissa is doing better. She's still a bit under the weather, but her breathing is worlds better. The A/C is still out, a few fans are keeping it at a summer-y 80 degrees, rather than the tropical 95 that it was. The parts just came in, and with any luck, the A/C guy will fix it tomorrow.

No quippy reviews of hospital food this time, it was just a soul-sucking time-warp of a stay.

I Laugh in the Face of Danger

Well, it's taken a long time, but I think I finally have come to full acceptance of Melissa's disease now.

We were at the Battle N Brew on Wednesday with some friends for their Geek Triva Wednesdays. I've taken Mel there three times I think, and the crowd there was pretty awesome about it. People there thought it was cool how she typed with her computer, and when I had to give her some water in her food tube, one patron joked "COOL! Is that VODKA?" The people there are helpful when we're trying to navigate the doorways and give us the space we need to accommodate her wheelchair.

Last week, it was also a celebration of lots of people's birthdays in the group, so there was cake and cake and cupcakes. And bless Mommagorn, she brought a Blender and had her son get some milk so we could blend up a Cake Shake for Mel to take in her Tube. We just plugged in a blender at our table and let that sucker go. And everybody in the place seemed to be cool with that. :)

Then came the moment of realization. The category of the question was "Disease". Given the history of the questions, I was expecting it to be something funny or movie-related. The question was read out: "Name the most famous person to have the following disease - Amyotrophic Lateral Sclerosis. This was also the first person to be on a box of Wheaties."

The room fell strangely silent. And I could not help it, I let out the biggest belly laugh I've had in a very long time. I was the only one laughing. They all probably thought I was off my nut, but I couldn't help it. THIS I know about. I do know quite a bit of trivia about this particular topic, yes. Amyotrophic Lateral Sclerosis. ALS. Lou Gehrig's Disease. We put down "Lou Gehrig " on our answer sheet, with the previous answer of "The girl at our table" scratched out.

I think the manager was lobbing our team a softball question, or maybe trying to educate the room a bit about her.

The Christmas Compromise

Every December since we moved in with Melisa's parents, there has been a little war regarding the displaying of Christmas Decorations. While Brenda (Mel's Mom) prefers tasteful wreaths in the front windows, Melissa's style has been for strings of lights all over and small light-up animals. It's not just conflicting tastes, there is a tradition on this street of a "Progressive Dinner" wherein people on the street start with appetizers at one house, then "progress" with each course to other houses. For many of the women, this is a chance to peek inside people's houses, and to show off their own. So there is a little pride at stake here, and a Motorized Pink Flamingo in the front yard would be the equivalent of that piece of toilet paper stuck to the shoe of an otherwise elegantly-dressed woman.

In the past, we have come home to find that our decorations had been temporarily removed for the dinner, and we had to put them out again after it was over. This year, things are a bit different. Since Melissa doesn't get out much to see these lights, we thought that we'd put all of our gaudy lights in the back yard, where Mel can see them from her window.

From our computer desk, where Mel spends most of her day, she has a nice view of the back yard with lots of trees. There are also lots of interesting birds, since we put four different bird feeders in the tree nearest to her window.


The first order of business was to string lights across the fence in the back. Only problem was that the fence is actually in the yard of the people behind us. These people were rich, and there house was amazing, so I wasn't sure how they'd react to my idea of putting chintzy decorations from TARGET in their rear view. Saturday morning, I walked around the block to see if I could convince them. Their house is incredible, it's a very faithful re-creation of historical colonial homes you might find lovingly kept up in Virginia. It took me a while to work up the nerve to knock, and I almost had walked away when a 50-something man answered the door.

I started out "you don't really know me, but my wife and I live with her parents in the house behind you. And I was wondering if I could ask a small favor of you." It was cold and he invited me inside for a moment so we could talk. Wow. I found out later that Southern Living did a feature article on this place because it was incredible inside. I don't usually go on about stuff like houses or decor, but this place was just so... perfect. His name was Jim Williams, (just like MIDNIGHT IN THE GARDEN OF GOOD AND EVIL) He told me that he actually did know about Mel and our situation and we talked about her for a little while. He thought it would be wonderful to have lights on the fence, it would improve their view at night. The guy really was nice and said if there was anything he could ever do for Melissa, just let him know.

I sighed a little relief, headed back and unpacked our lights from the basement. It took a little while to set up, but I think Melissa was thrilled with the results:


In addition to the fence, I made that pine-and-ivy island into a star, with her animals in the middle, and wrapped the tree with some multi's. Came out pretty good, I think.







Mrs. Williams came down to the fence to talk to Brenda while she was walking the dog, and despite my fears, she said she LOVED the pig and the other animals.

So finally, Mel and her mom have reached a Christmas Compromise: We have our tacky lights in the back, and Brenda has her respectable decorated wreaths in front. I feel like I just negotiated a peace treaty between Israel and Palestine here.

Happy Halloween!

Even though the weather was drizzly and cold, we made the best of things tonight. I got to carve a pumpkin for me, Matthew and Melissa. I'm especially proud of Melissa's Piggy. We found a pumpkin whose stem faced sideways and I thought it would be PERFECT for a snout-hole. And I didn't plan this, but I was about to cut parts out of the top for the ears, then I realized that the cut-outs for the eyes were the perfect shape for pig ears! I just trimmed them down a bit and added two slots on top to put them in. Score!



Also, my Mario Mushroom turned out pretty good, and Matthew loved his Poke-Ball. I'm getting better at this!


Matthew dressed as Stitch again, he insisted. Even though he originally wore the costume in Pre-School, 3 years ago! And talk about "Fiver's Flamingoes"... She ordered these plastic Skele-Flamingoes for our front lawn... All kinds of awesome


Halloween is also Shawn's birthday. And after seeing the awesome Godzilla Birthday Cake Brenda made for Matthew's 7th Birthday this year, he decided HE wanted one. Even though he's 40-something. So Brenda made the cake and I got the toys. I gotta admit it's pretty cool. And I love the Macro shots I got of it:


I took Matthew out trick-or-treating in the drizzly, cold weather with his friend Seth and he could barely carry back his treat bag! Quite a haul this year. While I was out, Mel and Shawn watched Ghostbusters on the Blu-Ray. For a Blu-Ray, there were some parts of it that were REALLY grainy, like they transferred from a Betamax tape or something, then other parts were clear. Maybe we don't have it hooked up properly, or maybe it's a bad transfer to Blu-Ray.

In any case, fun was had, Candy is all over, and lots of kids LOVED my pumpkins. It's nice to have your work validated. :)

A Secret of Marriage

Please note that the title is not "THE" secret of marriage. Also, I am not a psychologist, nor am I a published relationship self-help author, I've just known loads of people in all kinds of relationships and certain patterns emerge just from observation.
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I consider Melissa and I to be a well-balanced couple, and that word BALANCED is the key. (I never was very good at essays obviously, since I drop that in the first line.) As I see it, successful marriages are based on roughly 70% compatibility and 30% acceptable or desired differences in personalities. Compatibility does not mean absolute carbon-copied similarity, all-too-similar couples I've met either get bored with nothing new being added to the mix, or one of them is lying. Either way, they're in trouble.

That 30% of desirable difference appears to be the key to mutually rewarding and lasting relationships. We are attracted to people who have qualities that we don't have ourselves (obvious plumbing differences aside). For example, Melissa and I are worlds apart in our communication. She is probably the most outgoing person I have met and has no trouble striking up conversations with complete strangers, laying the smack down on deserving jerks or speaking her mind--loudly--about anything. At the other end of the graph is me. Apart from a brief onstage persona I took on while performing at UGA, the real me is painfully shy and very self-conscious about what I say. So the symbiosis of our relationship in this regard is that she gives me the confidence (or kick in the ass) I need to speak up when required, and I give her temperance to not say things that could get her in trouble, or at least paraphrase them a bit.

You can't reduce a marriage down to the interplay of a single characteristic, but there always seems to be this symbiosis of personality in the happiest couples that I've met over the years.

[Todays "Nugget O' Wisdom" brought to you by Chris having Trouble Sleeping. Yessss...Trouble Sleeping at Night-- chock full of wandering ideas and things you never could quite put your finger on. Available at all fine retailers nationwide.]

The Purpose of Adversity

We knew back in 2007 that it was something bad, possibly debilitating, but we had no idea. Melissa went to doctors, Neurologists and orthopedic surgeons, carrying the ever-growing collection of MRI's, CTs and X-rays from previous visits for almost a year and still no diagnosis. She was ready to give up if this last visit to Emory didn't tell her anything.

We knew it would be bad news when the neurologist brought in a junior doctor who just sat in the corner. Mel and I both realized he was here to watch us as the doctor delivered the news.

No one expects ALS, not at age 35, not the incurable wasting disease that usually takes the elderly. People have about 3-5 years after diagnosis. It's what they call an "Orphan Disease", which means that too few people have it, so the drug companies don't research treatments for it because of poor Return On Investment. There is no cure, no effective treatment but Riluzole, which may give you an extra couple of months. And even if some trial drug looks promising, with a life expectancy under five years, anything not currently under review by the FDA when you're diagnosed will probably not be available to you even if it DOES work.

There was a long period of grief, anger, prayer. The usual. But oddly enough, there was a sort of comfort in knowing the diagnosis. ANY diagnosis, even this one. Even the worst case scenario in Neurology. At least we knew what we were up against, and what to expect. Comfort, like life, can sometimes be found in the most unexpected places.

After a while, I stopped praying for her to be cured. While I am a Christian, I believe in "reasonable" miracles, meaning things that are possible in the world, we just ask for the chance to be one of the lucky few to receive them. Like winning the lottery or being accepted to Harvard. These things are difficult and highly unlikely, but the do happen to SOMEONE in the world. Being cured of ALS in this lifetime is flat-out impossible, and I decided that I needed to come to terms with that.

So what to do when faced with a truly unwinnable situation? After months of searching, I believe the answer is to accept it, and try to discover what God wants us to learn from the ordeal. Wisdom is gained more by our failures than our outright successes. How much more insight would we gain from this, when the worst possible outcome is certain? I truly believe that this is the purpose.

So from time to time, I will be posting here about things I have learned from the experience of living with the knowledge of Melissa's diagnosis. Here's the first one:

There is always something to be thankful for, even in the worst of times

This is the first lesson that living with ALS taught me. Even when you know that your soulmate is living on borrowed time, even when it's tearing you apart with grief, you can still find things to be thankful for. This is more than a trivial game from "Polyanna", it is the way I turned my thinking around.

Melissa is so young to be diagnosed with this disease, but I am THANKFUL because since she has it now, I am more able to help her than I would be in my 60's.

The medical costs are expensive, but I am THANKFUL to still have a job in this economy, when millions have been put out of work.


And even without the negatives, there are all-positive things to be thankful for:

I am thankful that I work at a company that allows telecommuting. I save on gas, don't sacrifice hours of my day driving to and from work, and I can take breaks to tend to Melissa when I need to.

I am thankful that Melissa's parents are here to help us so much. I couldn't take care of Melissa and Matthew at the same time without their assistance (and good cooking!) Many people with this disease have no family to help them and have little health coverage to pay for assistance.

I am thankful to St. Gabriel's, our small but ever-so-lively church. The congregation there was so full of smart-asses already, that Melissa and I were hooked after our first visit. They have been great in supporting us and raising our spirits.

I am thankful for the internet, and social sites like Facebook and LiveJournal, where Melissa can keep in touch with friends every day.

I am thankful to the ALS Association of Georgia, who have provided us with essentials like wheelchairs and an adaptive computer that Melissa can use by herself.

I could go on, but the point is made. For the huge shadow that ALS has cast over Melissa's life, there have been hundreds of bic lighters, sprouted from the pockets of individuals and organizations that have made a bastion against the darkness. (I know that's a terrible mixed metaphor, but my prose is one of the casualties of improper sleep.)

One last item: I am thankful to you, our friends and family, for keeping us in your thoughts and prayers, and for keeping in touch with her. You have no idea how much that little effort means to her. As with ProjectFiver, the group is accomplishing what I could not provide her by myself, and I thank you.

Music for Summer Road Trips

Anyone who knows me knows I make mixtapes like nobody's business. So here's some Road tunes courtesy of a new app called 8Tracks.

What I learned from 7 days living in a Hospital

Emory Hospital Provides Unforgettable Culinary Experience

By Chris Kern,Travel Writer, "Go Fork Yourself" Magazine

On the rare and unfortunate occasions that one needs inpatient care, one would hardly expect such a destination to be of any culinary significance, would one? Well THIS one was delightfully surprised at the creations that I discovered at one Emory University Hospital located in the Decatur township of Atlanta, Georgia.

As I sped through the winding lane called Briarcliff towards Decatur, the un-air conditioned breeze wafting through my hair, I became lost in the charm of the tiny one-street subdivisions with their tantalizingly different architectural styles and subtle levels of homeowner neglect. I'll spare you the gory medical details, as nothing can kill an appetite like a lengthy description of surgery, and get right to the good stuff. Who would think, but the highlight of my day was the little breaks that I could steal away to sample the unique foodstuffs available in Emory University Hospital.

Macaroni and Cheese -- Asbury Food Court

While the debate over whether it is a mere side dish or deserving of full-course status will be debated for years to come, no one expects surprises from this unassuming comfort food staple. I admit, I ordered it as a palate complement to the stunningly gray Meatloaf Surprise that was served (the surprise being a small piece of yellow plastic that I discovered in my second bite). The Meatloaf was uninspiring with its day-old oatmeal texture and the fact that it took two packets of Ketchup and Texas Pete Hot Sauce to get the first hint of taste, but the "Mac" literally took my breath away and shone as the star of my supper plate that afternoon.

The texture of the macaroni noodles is the first discovery. True capital-I Italians favor pasta to be boiled "al dente", but the Asbury chefs boldly decided to push the envelope of semolina boiling and serve it with a texture so delicate and runny that you'll swear you're having fillet of jellyfish. The counterpart to these was the "cheese" sauce, which was equally as unexpected. Due to the Food Court's distinctive cooking style -- baking in large aluminum troughs -- the "cheese" had a duality of textures and flavors. Most of the dish featured the cheese in its runny, tepid form, which features only the slightest hints of cheese flavor, similar to the "white cheese" (tm) served at Subway. Quite novel, however, was the second texture, the crispy, cut-with-a knife top layer that delivers a tantalizing ounce or two of actual taste to each ice cream scoop serving of the dish, with amusing propane undertones.

The interplay of these layers was such a delight! Switching between fork-fulls of the blander bottom layer and a rationed slice of crispy top was not unlike spending hours in a sensory deprivation tank before attending a Death Cab for Cutie concert: The latter may be bland by itself, but after hours of nothingness, it seemed as mind-blowing as a Grateful Dead tour.

Kentucky Farms Sausage, Egg and Cheese Biscuit -- Refrigerated Vending Machine, 2D ICU

When gravity delivered this package to me (plastic inflated to prevent shattering), I thought there had been some labeling mistake. "I see only biscuit and sausage! Outrage!" I exclaimed to the other two sleep-hung-over occupants in the ICU vending area. I wanted to file a complaint to the management, but there was a notable lack of servers of staff in the area, and the staff that I talked to about it rudely told me to get out of their way, as they continued chest compressions on an elderly woman on a gurney. WELL! Were I not stranded there by a loved one in recovery and a ruthless no in/out policy on the parking lot, I would have driven elsewhere. But as things were, I swallowed my pride and tossed the wrong item into the microwave.

The dish emerged from the riveted aluminum door appropriately steamy and sizzling, however, so I sat in the Plastique Vieux chairs and bit with eyebrow raised in caution. Incredible. To my delightful epiphany, there was no mix-up from the vending machine, the egg and cheese portions were ingeniously injected INSIDE the sausage patty! Never since the invention of the "Uncrustable" Peanut Butter and Jelly sandwich has this reported been struck dumb by the delicious utility of culinary invention. The egg was admittedly a bit dry, but there was a cheese-colored juice like right-from-the-oven Pizza cheese that scalded my mouth and mercifully put taste buds out of commission. After two or three singed swallows, I was tasting no pain. The only way I see to improve this is to serve the sausage/cheez/egg INSIDE a closed biscuit. If the magicians at Kentucky Farms can manage that, I predict we'd have a food sensation not seen since the creation of "Turducken".

These are but the highlights of the exquisite delights that I experienced during my stay. Now I know why Emory is called a "Teaching" hospital-- because the cooks there could teach some top chefs a thing or two! Needless to say, the next time that I find myself rushed to the hospital, bleeding out one orifice or another, I may find myself NOT rushing to get back out again!
-CK

Where in the World is Terrence?

We had a little excursion to DisneyWorld a few weeks back and it was a really different experience. We thought it would be a nice, slow-paced, quiet couple-centric trip without Matthew there, but we were wrong.

Because our trip ended up centered instead on a little flamingo called Terrence. I named him after Terrence Stamp, thinking of his costumes for "Priscilla, Queen of the Desert". and sent him to Melissa as a gift. Both she and Terrence were homesick for Florida (Melissa grew up there), and what a wild ride it was...


Where in the World is Terrence? from Chris Kern on Vimeo.

Brief Rant: Zombie Films

I like movies about the undead. But call me a Zombie Snob (snOmbie?), but I think the latest trend of inserting Zombies or vampires into every corner of film culture is diluting something great into a yawn-inducing me-too shoveling festival. For every "Shaun of the Dead" there's a "Lost Boys 2 : The Tribe"

Latest infraction : Film studios are chomping a the bit to publish "Pride and Prejudice and Zombies", which isn't even set to be published until May, into a hit film. (As visualized here by webcomic "Hijinks Ensue.") Reportedly, the book is about 85% Jane Austen's original novel, with the remainder being the zombie bits added in.

Treading on thin ice in it's wake is "Rosencranz and Guildenstern are UNdead", which at least isn't a DIRECT re-imagining of Hamlet with Vampires in it, but it still steals the title of the original "Rosencrans and Guildenstern are Dead"(1990), which, besides being hilariously written an incredibly acted, remains possibly the best example of self-aware characterization in cinema today.

Friends and Horror Aficionados assure me that there ARE still good undead movies being made, such as the surprising "Let the Right One In", and all I can do is hope that this keeps the genre fresh amidst all the "Underworld" sequels and commercial tripe. Fingers crossed that George Romero can deliver us from evil... and I know just how ironic that sounds.

Layoffs in my Department

Monday morning I found out that my company was going with the "In Crowd" of companies and laying off lots of people. How did the companies end up doing this on the same day? Facebook perhaps?

Home Depot is going to have to cut about 7000 employees. Even shut down the Expo locations. *OUCH*
- Caterpillar : Dude, *20,000* total now. Got nothin on me. It hurts but so do my sales.
- Pfizer : About 19,500 here, Cat. Ouch indeed, HomieD. Need a pill for that headache of yours? I gotz the goods. ;)
- GeneralMotors : about 2k jobs in Ohio and Michigan. Even with the Fed Money.
- SprintNextel : GM - Dude, I CAN HAZ BAILOUT TOO? You just blew a load of it for your cars to be in the "Terminator - Salvation" movie!
- GeneralMotors : Yep S/N. Gonna ask for $3 Billion more soon. Fingers crossed.

I laugh because it's the only way I can deal with this. I was having an IM conversation with a coworker in Little Rock (The Home Office) and he had to break off to escort one of our members out of the building and lock up her laptop. All in all, four employees just in my department are gone : Two report analysts, a mid-level manager and our FRACKING DEPARTMENT HEAD! We just brought this guy in back in September.

So now it's only seven of us left in the department, and we're scrambling to change our methods entirely to suit the new Division Head's declared direction for us. Our Department is called Enterprise Reporting, and my job is in two programs: (1) Concord eHealth, which doles out reports on server health (Disk space, CPU Utilization, Bandwidth) and (2) WebTrends, which creates reports based on clients web site logs (Number of Hits, Visitors, Page Views). 80% of my time and effort has gone towards Concord in the past three years. And Friday, I was informed that this program was going away. I am to stop new reports and slowly shut down the existing ones over the next month.

This program was my life. And because it was so popular, I had to write some automation programs from scratch in VisualBasic just to distribute all of them. (I called the automation program "AutoMAIL" for those of you Anime fans...)It was a lot of work to create the automation, but today I have over 500 reports that have to go out every week, and there is no way that would be possible for a single person to do without coming down with Carpal Tunnel in just under a month. As it is, Concord just churns out PDF and Excel reports to it's own UNIX server. Over the past three years I engineered a SYSTEM that would do the following:
-FTP the reports from the server
-Rename the files to something readable
-Merge related PDFs and even Excel Spreadsheets
-ZIP the resulting files and archive them
-Email out the ZIP to a list of recipients
-Email me with an error message if something goes wrong

All of this runs automatically, on a schedule, without any action required by me. This was the most involved, complex program I have ever written, and it worked beautifully. Any coders out there know the pride and satisfaction of creating an efficient program that is easily customizable and saves so much manual work. And it's gone now. The pinnacle of my professional skill will be useless in about a month.

This is not just vanity and pride talking, I am losing my main area of expertise, the main reason for employing me. I will still have WebTrends, but that is a fairly closed system, fairly easy implemented once you have a system set up. I'll also be training on the new reporting system: SQL Server 2008 Reporting Services, but I'm the last of my department to train on it.

My manager assures me that if they didn't think I could transition to the new way of doing things, I would have been let go with the others, so that bodes well for me. She has always been a great boss - always looks out for me and gives it to me straight, and I trust her. My logical mind knows that I am unlikely to be laid off - but this is a fear that transcends logic and even the established trust we have.

Everyone is fearing for their jobs in this economy. I feel like the protagonist from FINAL DESTINATION: I have somehow survived something horrible, but I feel the guilt of it. Along with the foreboding that I did not dodge this entirely and it will come back for me.

Good Read: The WPA in Today's Terms

A Friend linked me in to this article on what we have to do to save the economy. It's an incredible essay. Snippets here, but do yourself a favor and read the whole article if you have five minutes.

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Along about the time that Roosevelt was about to lose his temper over [the failure of the Public Works Administration], the First Lady talked him into talking to a very successful social worker named Harry Hopkins, who only wanted a few minutes of the President's time so he could ask one question. He showed the President figures (that he later showed Congress) showing that there were about 3.5 million Americans in 1933 who were heads of households between the ages of 18 and 64 that no employer was going to hire, no way, no how, not for any amount of money, and he asked: "Can you give one legal reason why we can't just hire those people ourselves?" The thing is, he got that estimate of 3.5 million people by going through the state-by-state lists of people who were already on the dole, people who were already receiving some kind of charitable or government cash hand-out because they weren't working. And what Hopkins realized was that not only did the American people deeply resent those people for taking money and doing nothing all day, the recipients weren't any happier about it, either: they wanted to work. So FDR shoe-horned a program through Congress, first as pilot program called the Civil Works Administration, to raise about $1200 (1933 US dollars) per year per unemployed head of household: $1000 per worker per year for wages, $24 per worker per year for administrative costs, the rest for hand tools and raw materials for whatever projects he could make up. To get CWA funding, a job had to be something that no corporation was interested in providing, and that no government agency was interested in funding, and it had to be as labor-intensive as possible (see photograph above right).

Conservatives in both parties hated it. And still do. And campaigned hard against it in the 1934 congressional primaries. Al Smith's right-wing Democrats convinced FDR that if he kept the CWA, it would cost him his majority in Congress, so he shut it down after only four months. In that four months, CWA workers had already built 1,000 rural airports, built 40,000 school buildings, built or resurfaced a quarter-million miles of roads, and laid twelve million miles of sanitary sewer lines, some of the first sewer lines laid in most counties. In four months. Right-wing Democrats and anti-tax pro-corporate Republicans screamed bloody murder about all the money that the CWA was "wasting," but (and this is a point I'll come back to again) we're still using almost all of that stuff today. 75 years later, those "worthless" "make-work" projects are turning out to be some of the most valuable stuff the government had done in its first 150 years of existence. So contrary to what the right-wing Democrats in Congress were telling FDR he "needed" to do to "save" the 1934 congressional elections, terminating the CWA turned out to be the least popular thing he did as President, and as soon as the elections were over, on voter mandate, FDR brought it right back again, rammed it through Congress again as the Works Progress Administration (WPA).

Only this time it had full funding, and a Congressional and Presidential mandate to try to hire every single one of the roughly 3.5 million unemployed, non-disabled, work-aged heads of household in America. And in almost no time at all, they came as close as makes no difference, getting to 3.3 million, on one simple philosophy: you tell us whatever it is you "do," and we'll find you a job doing it. Those jobs paid very nearly jack squat; nearly all WPA workers ended up living with their whole families in roughly 8" x 10" or so rooms in improvised "boarding houses," spare rooms leased out by people who were house-rich but cash poor, trying to save their homes, tenants with no control over the menu of the meal plan it came with and shared use of a single bathroom (or maybe just an outhouse and an outdoor water pump) with 3 to 8 other families. Nobody lived well on the WPA, but nobody starved either. On the other hand, nobody worked terribly hard, either, and I know this one from a very personal source: my paternal grandfather was a WPA veteran.

Grampa Hicks was himself a right-wing anti-tax anti-communist Democrat of the American Liberty League school, and he hated the WPA with a fiery passion for the entire rest of his life. It was from him I first heard the joke: "How many people does it take to do one WPA job? Three. One on his way to the bathroom, one on his way back from the bathroom, and one leaning on the shovel pretending to work." But here's the funny thing. You know what Grampa Hicks was before the Great Depression? He was a bum. A mostly-unemployed unskilled laborer on the rare occasions he had a job, a street brawler and small-time crook, a chronic alcoholic and wife-beater who spent most of the 1920s in jail. So when he showed up in one of Harry Hopkins' branch offices and they asked him, "What do you do?" all he could answer was, "Nothing." So they stuck him on one of the WPA's archetypal projects: a National Guard armory. Under the thin pretense of "military preparedness," Harry Hopkins made up this total BS scenario whereby some day, in some foreign invasion of the US, we might end up having to retreat all the way back to any random tiny little town in America, so every tiny little road-crossing town and every suburb and every city neighborhood in America should have a solidly built, concrete-block or raw stone building that the state militia can store their weapons in until that day, and can use as a fort when we get nearly conquered. Nobody was fooled. Everybody knew it was a lie: it was building buildings just for the sake of building pointless buildings. Furthermore, the whole "fort" thing was just an excuse to make the job take longer, to build out of improbably heavy materials and as slowly and carefully as possible, so those mostly unskilled laborers didn't run out of something to do before Hopkins and his few staff could come up with something else to do. Grampa Hicks went to his grave still mocking the work he'd done.

But you know what? There's a funny thing about that, something I'm pretty sure Grampa Hicks never thought about. First of all, if it weren't for the WPA, we Hickses would still be bums. Grampa Hicks was desperate to get out from behind that wheel barrow and that shovel, but was too drunk to do plumbing. So he took to hanging around when the electricians were running wire, and managed to get himself a totally useless job as a sort of human Vice-Grip. "Here," says the skilled electrician who was himself out of work, yelling over to my grandpa because the WPA wouldn't spring for proper tools, "you there -- hold these two wires together while I tape them together." By following that guy around and watching over that guy's shoulder, Grampa Hicks taught himself basic electrical wiring. And when the WPA was over, he was able to lie with a straight face to employers that he was a skilled electrician, and that got him his first real job, one his son learned from him, and that I learned from my dad that paid my way through college: electrical sign erector, IBEW local 1.

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Turn Tragedy Around

Most of you don't know, but Melissa had to have her wedding rings cut off. An unfortunate side effect of her ALS is that once the muscles in her fingers atrophied, there was some swelling and we couldn't remove the rings. It was sad to see them cut off, sitting twisted and open in a plastic bag in her drawer.

THIS SHALL NOT STAND.

So for Christmas, I had a jeweler make the rings whole again... AND intertwine them with her Jens Hansen ONE RING that she wears with her Frodo costume. (A fellowship of nine friends pooled their money and bought it for her back in 2003.)

The Result : The Ultimate statement of Geek Cred. She wears this around her neck all the time now.

The Challenge of Caregiving

I've talked to a lot of people in the past month about Melissa's disease, and about my role as a caregiver for her. Yes, it is grueling at times, she does require assistance at night frequently, and it takes a lot out of you. But if someone were to ask what the most difficult part of taking care of Melissa is, I could sum it up in one word:

LUNCH.

Allow me to provide some background. ALS can do some weird stuff in your brain, including re-wiring your taste buds for some odd reason. Many people lose the taste for certain foods they've always loved, and have odd cravings in their place. Melissa, for example, lost the taste for ANY dessert about a year ago. Let me say that again for emphasis: SHE CAN'T EAT DESSERTS. (And you thought the whole not-able-to-walk thing was bad!) Anything sweet like chocolate or pie makes her nauseated. The only thing that I've been able to get her to eat was a small teaspoon of vanilla ice cream, and that was only once.

In its place, Melissa has cravings for certain... non-dessert stuff after dinner. For a long time, she'd eat a bunch of green olives. Yes, without the martini. In the past few weeks it suddenly changed to pickles. She told her dad to pick up a jar of sliced pickles out of the blue one day, and threw a fit when I brought her the nightly bowl of them. She informed me, quite pointedly, that what I had were pickles sliced in cross-section, or pickle CHIPS. What she really wanted was pickles sliced longways, or pickle SPEARS. The fact that she had left off this oh-so-crucial bit when she asked for "sliced Pickles" was dismissed.

These cravings do bleed over into other areas, namely Lunch. Now her mom is Betty Crocker when it comes to cooking, so the fridge is constantly full of single-serving leftovers and the pantry is always stocked with assortments of cheese, deli meat and chips. We never had a problem with lunch before, but now every day when I come upstairs at noon and ask her what she wants to eat, she gives me that look that says "What *IS* this 'Lunch' thing that you speak of?" as if she has never been faced with this dilemma in her life. Then she spends about 10 minutes pondering what her body craves and might possibly be within driving distance.

"Come on, Mel, you KNEW that this was coming. You had lunch yesterday, and every day before that most likely." She nods smiling, and I usually make my sandwich downstairs while she decides. "Perhaps tomorrow you can think about this before Noon? That way we can have it ready to actually EAT at lunchtime?" She looks up and thinks for a second and replies "Nah. This is fun. This is good quality time that we have together."

So aside from Lunch, most everything else about taking care of her is not a big deal.