He wasn't having fun anymore.

Patrick L. Boyd -September 9, 1952-. February 13, 2018

Pat was born in the heart of America in Keokuk Iowa, a small town located on the banks of the Mississippi River . He always told his wife, Paula Hanninen, that "the best sailors come from the Midwest." Pat lived an American Life. He was a paperboy for the Keokuk paper, an Altar Boy at St. Mary's Catholic Church in Keokuk and a Boy Scout Troop 36 , Keokuk Iowa on the Mighty Mississipp. He learned to water ski on that same river and snuck into the Armory at night to play in the National Guard tanks. Overall, he was a pretty good kid, but just bad enough to be interesting.

Pat had a love of classical music and wooed his wife with Gregorian Chants and Copland's Appalachian Spring during their time together at Ole Miss from which he received his B.A. in 1976. He and Paula married three weeks later.

A patriot, Pat served his country as a Cold Warrior in the United States Navy for seven years, first as a Surface Warfare Officer, and then in Naval Intelligence.

After his time in the service, Pat worked as a Cable Laying Specialist for what was then AT&T's SOSUS group, based out of the Guilford Center, which is what brought him and his growing family to Alamance County. Finally heeding Paula's pleas for help with raising their four rambunctious daughters, in order to stay home, Pat co-founded Carolina Eye Prosthetics in l987. He served with love and gratitude his many patients, who found his low key approach and willingness to listen a great help to them as they navigated their own health crises.

Knowing that others helped him during his youth, Pat had a special interest in helping other young people. While watching the Western Alamance Junior Naval ROTC march in the Graham Christmas Parade one year, Pat decided they needed a boat, and started the first public high school sailing program in the state. Pat served as a Sunday School teacher with the toddlers and then later taught them as adolescents at the Episcopal Church of the Holy Comforter.

Never one to seek the limelight, Pat preferred to work behind the scenes, serving as a mentor to many young people, doing the work that had to be done on church committees and taking care of the household while Paula had to take care of her parents.

While no one in their right mind would call him an athlete, Pat was an excellent horseman, great at waterskiing and could shoot a squirrel for supper, which Paula tried and then rejected. He was also a craftsman, building most of the furniture in their home and two saunas for Paula. He designed and built two homes and restored a 33 ft. yacht on which the family sailed the Potomac River.

In 2012, following nearly three years of medical weirdness, Pat was diagnosed with Amyotrophic Lateral Sclerosis. His biggest concern, other than who was going to maintain his beard (which Paula did very well) was he wanted to be brave for his grandchildren as an example. We can all attest that he did his last task quite well. He kept his sense of humor, quiet grace and no-nonsense approach until the end.

Pat leaves his wife, four daughters, and their families: Emma Lee Boyd Nadolski, (Pat), Maddietate, Little Pat and Will. Anna Boyd Jefferson, (Michael) Harry and Bob. Clare McAndrew Martin, (Archie), Dougielou and Emmett; and Laina Boyd Ramey, (Travis), Lillymae and Maggie.

Pat's father, Bill Boyd and stepmother Maryann, survive as well has his sister, Julee Hooper and brother Nick Boyd.

Pat was predeceased by his granddaughter, Elizabeth Clare ; his mother, Emalee; and his brother, Kim.

We, who are sad, would like to thank everyone who made a difference; Dr. Richard Bedlack and his bevy of beauties at the Duke ALS clinic, Pat's nursing teams from Bayada and Private Duty Nursing, The Durham Veteran's Administration Home Health team, Dr. Scott Bennet and his gang at the AENT and the many many people who kept in contact when we were overwhelmed with life and too fraught to think.


Thank you all.

an other imposed zen sort of life

One of our children is very frustrated with me because whenever she asks me how I'm doing, I always say fine or I'm happy, because right then I am.  ALS is one of those diseases that forces us to  live in the now.

This morning, we had one of those lovely "ALS Moments" which had followed a similarly lovely "ALS weekend". And both involved the toilet.  At one point, I was with Pat while he was on the throne and I had to ask him, "Do you want me to call the girls?"   It was that bad.  But we got through it and now he's all good, and so I'M HAPPY.  Because now he's better and the nurse (who had been late) is here and everything is fine again. For now.

And to be honest, my main concern this morning was
Please, please...don't die on the toilet like Elvis....

This wasn't supposed to happen

This is the Blog post I never thought I would write.

Today, Pat's outlived his prognosis by one day.   When he was diagnosed on May 24, 2012 the rule of thumb was he would live between 2-5 years.  Now he's at Five Years and one day. He has outlived his handicap sticker, three sets of battery vents, two vans, two speech machines, two nursing agencies and a dog.   He's a tenacious son of a gun.

This is not true of everyone  We know of those who died well within those parameters. This is a tough disease. ALS is hard on everyone.  We know medical professionals who have either quit or are planning on it because they can't stand all the deaths of wonderful people they've grown to know.

Of course, we've had help, I cannot stress enough how important the Duke ALS clinic with Dr. Bedlack and his gang have been.  The Durham VA Hospital comes through every time and their care for Pat has been phenomenal. Duke University Hospital and our local people, Drs. Bennett and McQueen at Alamance Eye Nose and Throat go above and beyond when we need them. The Bayada Nursing team got us off to a great start and we're looking forward to working with Full Coverage Private Duty Nursing now.

Since Pat has been diagnosed our grandchildren have also gone through changes. The oldest went from elementary school to worrying about college choices. And we have three newbies who came down to stay and be loved.

Don't pity us. We are here, still plugging away because of the choices we made.  Compassion,yes- such as you would have for any fellow creature of God - but don't pity us.  We have a wonderful life. As Ann Landers used to  ask, " are you better off with him or without?"  Everyday, my answer is "WITH!" and every day, I silently thank Pat for waking up.


Here's who we were at the beginning of the rodeo. That baby in arms was born after the diagnosis.



And here's where we are now.

 and here are the newbies to the family. The youngest is three. We anticipate meeting his children.

Here's to another five years and beyond.

Promises Promises

                  At the beginning of Lent  I'd made promises to a couple of Facebook friends that I would pray for their familial situations.  I did this via private message, taking to heart that bible verse about hypocrites praying on the street corners.   Also, because I know my prayer record is less than stellar, I thought doing this via private message would get me off the hook when I invariably failed.  Years ago, I'd  even taken a "centering prayer" class and all I did was end up trying to remember the lyrics to RED RUBBER BALL-the curse of adult ADDism. 

             We've had a couple of ALS induced funny weeks wherein nothing horrible happened, but I missed seeing BEAUTY AND THE BEAST and other things.  It also meant the kind of time, where when I go to bed at night, I am totally exhausted and  only want to read about the glorious naval battles of Jack and Stephen in my current MASTER AND COMMANDER book.  Instead, as soon as I settle in, visions of the names of the people I promised to pray for wander through my brain and I realize that I am not going to get to visit with  those brave sailors  until I fulfill my prayer commitment.  It only took me a couple of nights of this to realize, that if don't get to that prayer during the day, I will be reminded of it by the recipient of those upward thoughts.    

I have no problem understanding God as creator of the universe- a bigger than life version of Charleton Heston and Dumbledore.   I know God can move mountains while keeping an eye on the sparrow.  I am just a bit surprised to discover he is kind of  a nag.

Who knew?

No tumeric for Pat.  It interacts with his diabetes medicine and damn near killed him....this is why self experimentation isn't always a good thing.   Better days ahead.

CReATE-ive Red hot Valentines

Nah, this isn't going to be about love or romance but rather inflammation....One of the benefits of having a really terrible disease in the 21st century, is the plethora of information to be found on the interweb. The trick is to make sure you're getting good skinny rather than bad.   Pat  belongs to a group called CReATE.  Here's the downlow on it embedded in an email.

The Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium will enroll patients with sporadic and familial forms of amyotrophic lateral sclerosis, frontotemporal dementia (FTD), primary lateral sclerosis (PLS), hereditary spastic paraplegia (HSP), and progressive muscular atrophy (PMA). The goals of the CReATe consortium are to advance therapeutic development for this group of neurodegenerative disorders through study of the relationship between clinical phenotype and underlying genotype, and also through the discovery and development of biomarkers.

www.RDCRN.org/CReATe Every once in awhile, they have something called WEBINARS wherein you can either listen in to people smarter than we discuss various topics or you can actually speak to whatever they are discussing.  We're such ignorant chickens, we usually just eavesdrop and they are always interesting.   This past week was all about inflammation, which apparently is a major health bugaboo.  Here is a quote straight from MEDICAL NEWS TODAY about inflammation: Chronic inflammation can eventually cause several diseases and conditions, including some cancers, rheumatoid arthritis, atherosclerosis, periodontitis, and hay fever You will note the absence of even a mention  of ALS.But we're used to being a wallflower at most medical dances.  So, we decided, since again, THERE ARE NO DRUGS FOR ALS..to self -experiment.  We're going for turmeric in a big way, which is an historically proven, safe anti-inflammatory.  Somewhere along the way, I decided what's good for the gander is good for the goose, therefore I've started taking all of Pat's supplements. So in addition to the protandim and lunasin, I'm hitting the turmeric trail.  I can't let him outlive me.

A right restored

A while back during a video conference with our favorite Dapper Dan, Dr. Bedlack, he commented "you don't seem to mind self-experimentation."  After laughing about that comment, we agreed.  It's not like we going to cut off Pat's head and put it in a strudel pan, but at a certain point when one has this sort of disease, and there is no cure, and no real treatments, you're sort of  willing to try anything. I mean, what's the worse that could happen???

So the news about the possible fast-tracking of the RIGHT TO TRY legislation is something that we can get excited about.   This legislation means that people with terminal illnesses who have pretty short term stale dates can bypass the usual FDA's years long approval process and try drugs that demonstrate potential help.  

I think those of us of a certain age (as the French say) remember those horrendous pictures of the Thalidomide babies in Life magazine, which is why the FDA has such rigorous testing. But for those families battling ALS and other diseases, this might be our only hope.

A couple of years ago, our state legislature approved CBD oil, which is a cannabis derivative.   Pat uses a couple of snorts of that a day and between that and the other supplements he takes, his progression is pretty slow.

Life is a gamble, whether you're floating on a raft trying to escape a country that is in chaos or wanting to experiment with a partially tested drug.  We're grown-ups, we know the risks. We want to try.

https://en.wikipedia.org/wiki/Thalidomide



https://en.wikipedia.org/wiki/The_Brain_That_Wouldn't_Die

The Mitford Sisters and Steve Gleason

Awhile back I read the  memoirs of one of the Mitford Sisters. They were those silly English girls  with a father who used to chase them instead of foxes  around the countryside on his horse (which could explain why some of them became either nazis or socialists.)   In it, there was a discussion of changing the log fireplaces into gas heat or something like that.  As the memoirist wrote, it marked the "end of the age of luxury and the beginning of the age of comfort."

Last week we watched GLEASON, the story of Steve Gleason, the New Orlean's Saints linebacker who is now in about the same stage of his ALS as Pat.  We both cried because he and his wife are SO YOUNG..and they have a baby and it was not what either of them pictured for their life together.   We had a chance to raise our girls and although Pat never hunted them through our pastures while riding his horse, we did have pretty good times, until the boys arrived and it mainly turned to worry.  We're still having fun with the grandchildren, but we both know that this is the gravy on our lives.

Steve Gleason has started TEAM GLEASON with the motto NO WHITE FLAGS.  This organization's task is to promote technology which Steve believes can replace many of the functions that nature has provided but ALS has removed from people.

We are big believers in this too, Pat's Permobile gets him around and the stairlift gets him to the upper levels of the house.  He also is  using a vent for breathing, a speech machine for talking, and  a mechanical arm to help him eat his food and play wizard chess.  



Steve's Team Gleason is SO ADAMANT about this that when Medicare didn't provide word processing/internet capable  speech devices for patients, his group stepped in, gave them away and made it possible for those people to communicate again.  The GLEASON ACT, which corrected this, was named for him.

https://www.govtrack.us/congress/bills/114/s984/text/es

http://www.teamgleason.org/letter2/

In the movie Steve and his wife struggle with the disease, caring for the son, reconciling with parents  and trying to get this great organization started all the while Steve's condition is deteriorating.  It is heartbreaking, but as much good work that they do together, from what I could see, they don't understand the importance of comfort.    The movie is a relentless look at living with ALS and this is what takes me back to the Mitford girls.

 The age of technology has replaced the age of comfort.  Steve is a whiz at using his devices, his wife is a whiz at caring for him.  They are a thoroughly modern couple but their bedroom needs an old fashioned hand to make it comfortable. I want to go down and help them organize their room to make it a safe, cozy place for them to visit at night when they are alone with the machines.  I want to get Steve out of that hospital bed and into one of those platform beds that can help him sleep comfortably with his wife so that late at night they can lie down together, hold hands and pretend it is like it used to be.  I want to get them nice dressers to hold all the trach supplies so they don't have to look at everything all the time and be constantly reminded of ALS.  They have done so much for all of us who suffer with this. I want to do this for them.  Because they could be our children and I want to help them.

https://www.tempurpedic.com/bases-and-foundations/

fantastic families and where to find them.

If you are at all familiar with anyone who has a pretty awful disease, you know that for anything to work right, you have to have lots and lots of support.  Garrison Keillor, writing about his dad's final illness, said that for him NOT to have to go into a home, he needed all of his six children. That is about right.  Dad had five children and it took all of us to get him through that last transition to the big grammarian in the sky.

We're  incredibly lucky because we have our gang all within spitting distance. I can  call and one of them will be here within a minute if I need them, but most importantly, they know WHAT is important. And they will figure everything out before surprising me with a great treat.

It took quite a coordinated effort because Pat was still pretty sick, but one bought the tickets and met me at the theater, and another one ran her children to a third one so she could run back to our house to sit with Pat while I was gone.  It took 3/4 of our  daughters, massive coordination and logisitics, but mission accomplished.  Got to see the movie based on Harry Potter "apocrypha" as my sister, BB, calls it.



Here's the trailer.

 http://www.fantasticbeasts.com/

Macgyvering, not Reaganing

Recently Pat and I  were invited to participate in a living with disabilities discussion with people smarter than we who will be inventing things to make people like us have better lives.  They were Duke students of Professor Kevin Caves  (he is the go to tech guy at the DUKE ALS clinic and what he doesn't know about technology isn't worth knowing).

We were asked beforehand about concerns.  One of the questions was, what is the number one thing you'd like to be able to do now that you used to be able to do?  I was stunned by Pat's answer. I thought it would be walk, drive, pick up a grandchild.  No, his answer was  "I want to pee in private."

There is something that you can buy on Amazon called a condom catheter, and it is exactly what it says. It is a condom, but instead of keeping dangerous bodily fluids in, it has a hole on the bottom that you attach to one of those bladders you put on the patients leg or hang from the bedside.  While  I shopped online, I noticed there are no SMALL sizes available.  You can only get medium/large, which is a hoot. I guess since men in these positions can no longer compensate by driving silly cars and outrageous boats, the world has to give them this small consolation.

Now if you remember from a post awhile back, one of Pat's larger concerns when finding out he had a fatal illness that would destroy his muscles and render him an immovable body losing control of his life,  was.."who is going to maintain my beard?"  Although I, however am happy if I have clean underwear on when I get killed in a car wreck; I knew that strapping a bag of urine on his leg wasn't going to work for my stylish guy.

Again, Amazon came to the rescue. We found wine bags that  hide the bladders quite nicely. Then the problem arose that because it wasn't attached to the leg, the urine backed up onto his chair, rendering my meticulous man, wet and stinky.  AHA! pool noodles.  I cut one of those styrofoam pool noodles in half creating a reasonable facsimile of a lower leg,  wrap the bladder around it and  hide it in the bag.

For the first time in over 4 years, Pat can pee in private!

Converse and Cub Scouts

After a pretty nervewracking Saturday, the grands returned on Sunday. Some of them came with fellow Cub Scouts to clean our yard.
Pat, the geezer scout from Troop 36 , Keokuk Iowa on the Mighty Mississippi, was able to get out and thank them.


But MOST importantly, we got to see new shoes.

Little and big things

It started with my cold.  I was as sick as I'd been in years (discounting my bout of food poisoning last winter).
Then Pat caught it, and of course, with an ALS patient, nothing is simple.  Yesterday afternoon was probably the scariest time we've had since the trach.   Infection is the bugaboo of our lives, and when something takes hold that quickly and firmly, you just hold on and wait it out.  Dr. Bedlack had told us Superman Christopher Reeves died from an infected bedsore. Germs are our kryptonite.  We walk a thin line in our house. We have to attack infections quickly, but not use antibiotics so much that they are rendered useless.

On Facebook in November, there is a common thread.  Many of my friends write thankfulness posts.

Here's mine.
I"m thankful for big pharma.  People love to hate them because you know, they are big and they make alot of money and don't seem to care. BUT BY GOLLY...without the extremely costly research, testing and marketing, I wouldn't have had the z-pac to give to Pat when he needed it. SO THANK YOU BIG PHARMA...you've made me a happy camper.

Here's another corporate shout out.  Pampers, Huggies, and whoever else makes baby wipes. If you think about it, if we didn't have disposable wipes, we would have to use rags to clean up messes, wipe faces, etc. And that means more laundry, folding and all that other stuff I hate. So thank you Kimberly Clark, Proctor and Gamble and any other corporation that makes home health care easier.

What about cleaning supplies?  Here's a big thank you to Clorox bleach spray.  We can disinfect the bathroom sink in about five seconds...Plastic trash bags? We just tie them up, toss the stuff and don't have to worry about disinfecting the garbage cans.  Plastic cups, plastic straws?  use 'em toss 'em.   Infection control is inversely proportional to landfill control, but in this case I DON'T CARE...

Thank you  Permobile.  When Pat went back to bed, Thor and I kept watch. I was reading THE IMMORTAL LIFE OF HENRIETTA LACKS but that chair is so comfortable, when I sit it in, I'm able to nap as easily as in any leather recliner.  So I did.

Thank you to our girls.  They took me seriously when I told them not to bring the grands around, but they knew enough to visit themselves.   Clare brought me Kung Pao, Anna brought scotch and we watched a really terrible silly movie,  Laina is bringing St. Paul's Barbque tonight.  Emma gets a pass because there is sickness in her own family.

As Laina texted this morning, it was a dangerous Battle of the Boogers, but we are winning...

...so far.

THANKS BE TO GOD.

Paper towels from hell

It's been too long since we last met.  Lots of changes. Pat nearly died and lo and behold, just as the good people at Duke Hospital called for that code blue or whatever that is so scary, our Rector walked in. Proof that we are not alone...and not in that X files sort of way.
Anyhoo, Pat was trached, our lives changed again and WE ARE STILL HERE!

The biggest change was the advent of the nurses, for which we are immensely grateful.  I was drowning, due to Pat's deteriorating condition the summer of 2014.  I had quit working but we were still tending the babies twice a week.  I was about to lose my mind, then unbeknownst to us,  we learned (following the procedure), the VA provides nurses for trached patients.

 After a weeks stay at the Duke ICU, we came home to what seemed to be a MILLION PEOPLE IN OUR HOUSE...it was the welcoming/ check in committee from the nursing company and I just about slit my throat. Pat was useless.  He sat at his dynovox and all he did was tell everyone (who were all women) how pretty they were and I was losing my mind. They were doing what they had to do and I was able to contain myself but MY GOD....They presented me with a HUGE ROLL  of paper towels, telling me that now that they were here, in one of those bizarre insurance things, they would be providing us with enough paper towels (seemingly to encircle the globe twenty times over) so I wouldn't ever have to buy them again. It was a bizarre rendering of LETS MAKE A DEAL I traded my home to complete strangers, but I get a lifetime supply of really scratchy huge rolls of paper towels. The only thing missing was Don Pardo.

 I decided to focus my wrath/anxiety/insanity on the paper towels and it got me through the night.

In honor of THE CLEVELAND INDIANS WORLD SERIES, I have provided a baseball comparison for scale. GO TRIBE

Whispers

Our bathroom renovation has begun and there is  plastic sheeting that protects our bedroom from the dust that such work entails.  This sheeting runs from wall to wall and whenever I walk by it, my air wake creates a gentle movement that has reminds me of the veil in HARRY POTTER and  THE ORDER OF THE PHOENIX wherein the people who have gone on before, whisper as the living walk by.

I'm waiting to hear from Sirius Black soon.

All Pretense Aside

THE VOYAGE OF THE DAWN TREADER is the third of CS Lewis' Chronicles of Narnia series.  In it, one of the characters, the aptly named, Eustace Scrubb, is a vile little fellow.  In Narnia, he becomes a dragon which is not all that great and with the help of Aslan, he endures a  painful shedding of the tough scales to reveal the wonderful boy he really is at heart.

CS Lewis expands on that theme of shedding our mortal coils of pride, greed etc. in his book for adults, THE GREAT DIVORCE.  Everyone has to face their behaviors or human side and cast them aside in order to reach heaven. If your possessions and personality give you comfort on earth, it's hard to let go. Some can't do it and remain locked forever in a grey purgatory.

I've been pretty lucky.  I've taken care of three people as they learned to cast off their mortal coils.  My parents and now, my husband.  I've watched them come to an understanding that they have a stale date, as yet unknown for Pat, but it is there.  And I've REALLY been lucky because in all cases, it's been an easy road for me.

My father was, like many people, a complicated man with many layers and for so many years, not that easy to get along with.  When he got his stale date on the anniversary of Mom's death, his shedding of his dragon hide began immediately.   His layers peeled away as he sat on our front porch, prayed and thought through his life.  He went through his self examination with a fine tooth comb that only a Lutheran PK could manipulate and at the end, revealed himself to be the sweet man we all suspected was there.  It made my job easier as his caregiver because he appreciated everything that was done for him, and although there may have been some regrets he couldn't get to that place while he was still able bodied, I think we were all grateful we got there at last.

In the God Squad column this week, Rabbi Marc Gellman addresses this issue of what to do when your caregiveree isn't that wonderful.  I hope I'm like Dad when it's my turn to be on the receiving end and not that lady.

http://www.tmsfeatures.com/columns/religion/the-god-squad/25506609.html?articleURL=http://rss.tmsfeatures.com/websvc-bin/rss_story_read.cgi?resid=201403111830TMS_____GOD_SQUD_ctngs-a_20140313

We Shall Return

The last big trip we made before we got the diagnosis was to my birthplace, Memphis, with the family newlyweds.We stayed at the Peabody, had cocktails in the lobby while watching the ducks parade around and then suppered at the Rendezvous just down the alley, past the dumpster. We almost didn't make it though. It was around this time of year and a spring storm chose the Memphis airport to be the tunnel for the front that was coming through.  It was the rockiest landing Pat said he'd ever endured and with his business international travels, he'd made quite a few landings in suspect weather.  We looked at each other and said, "Well, if this is it, then we're good to go." and held hands.  I felt a little sorry for our daughter and her new husband, because they were going to miss out on the marriage rollercoaster, but it turns out, they didn't even miss out on the ribs.

Before Pat got so sick, I used to pray he would just get happy; be content with his life and not work so hard that he could barely move at night.  I didn't want him to get ALS, but after the initial horror of it all, he has become happy; happier than I have ever known him.  He enjoys sitting around with me, watching the grands parade through the house and planning the next book he's going to read.

There was an article in the paper awhile back about a woman who after being diagnosed with a terminal illness (I'm thinking it was stage 4 cancer) became happy for the first time in her life. The woman in the article asks, "why did I have to be threatened with death to become happy?" It turns out this is not an unusual phenomenon.

 For those of us familiar with the TV show HOUSE, you may remember the episode where the crippled curmudgeon tries to expose the happy cancer kids for the frauds they are.  Of course, it didn't work.  They really were happy.  Not happy to be sick, but happy children who happened to have that horrible sword dangling overhead.

Today is Ash Wednesday, the day that we who go to liturgical churches are smeared with oily palm ashes and reminded that "we are dust and to dust we will return."  I'm wondering if this liturgy about death is really to get our tushies in gear and to make us remember to live.

Here's a link to the liturgy we will use today.

http://www.liturgies.net/Lent/AshWednesday.htm
http://www.liturgies.net/Lent/AshWednesday.htm

Only in America...

...would a two person household be SO DISTRESSED at the prospect of living with one bathroom for two months.  We are starting a small renovation to make our master bath ADA compliant and therefore have to SHARE!!!!!!

The Best Laid Plans...

..of mice and men oft go astray.


This snow better be nice and be GONE in 24 hours. We have tickets to the sold out BOOK OF MORMON at the DPAC on Saturday!

A NON-DOWNER post

Pat told me last night that my upper arms were getting buff from all the heavy lifting I have to do.
While I doubt they will ever get to the level of FLOTUS's, I am hopeful this means I will look better in my sleeveless shirts should summer ever arrive.  

He also told me that last post about the cords of death was a bit of a downer, which is why you are getting to read TWO today.  

The Modern Laocoon

We finally made it back to church after an absence of six weeks.  

As usual, the readings were stark in their relevance.  

Our first Psalm reading upon our return to church was 116 which included this verse 

 The cords of death entangled me,
    the anguish of the grave came over me;
    I was overcome by distress and sorrow.

We have various machines to help with the ridiculous amounts of mucous ALS patients create. There is a vest that pounds  Pat's chest to loosen the mucous, a cough assist machine that helps him bring the loosened  gunk up and then what I call a snot sucker that deposits it neatly into a disgusting plastic spittoon.  It was these machines that enabled us to avoid the ER and we are exceedingly grateful for them.  However, every one of of these machines has a power cord as well as a flexible hose that is the conduit between the patient and the machine. The pounder has two flexible hoses that are filled with pulsating air.  Dealing with these double headed hydras as they envelop my body detonates the latent F-bombs  in my head. 

Even as I wrestle these these writhing, slithering bodies into submission, I remember though that, for us, they are cords of life.