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.

Our youngest daughter and her family recently moved back to God's country (or I guess I should say COUNTY).  In fact, they live right down the street from us.

They have two children, one toddler girl who refuses to talk, and one five year old girl who can't stop.  The five year old resides in that funny realm somewhere between fantasy, reality and insanity.  We notice there is alot more glitter on the couch since their arrival from Japan, and other than BOB's gasp of dismay upon seeing, PINK babies in the toy chest that had been previously the home of nothing but steel gray transformers and toy guns, we've all adapted well to their return.

Miss Mess 3 and I were discussing ALS and the effect on her Pappy.  She was bemoaning the fact he couldn't lift his arms any longer and she said, "It's like his battery died."  This was about the most succinct description of ALS I'd ever heard.   And then she proceeded to tell me how she is going to marry Sonic the Hedgehog and have his babies.

Not yet

We probably have more end of life discussions than your normal household.  We have to.  I want to be perfectly clear on Pat's desires because I don't want him mad at me for all eternity,  if I accidently send  him home before his time.  We know he has a fatal condition and so we are perfectly prepared for the worst, but there is always that small voice at the back of our heads that whispers, "not yet."

We've just been through about three weeks of intermittent illnesses of varying sorts, all of which could have easily gone way south at any time.  After the first bout, when we made it through the night and we discussed plans for the future, the determination was no midnight emergency room visits for us.  We have most of the equipment necessary to deal with Pat's issues and I don't want his last earthly situation to be alone in a room surrounded by the same technology we have here.  It may end up like that, but as far as we can control things, we say NO.

I think we're on the comeback trail with this last bit of sickness.  This has been a grueling time, very tiring, but spiked with fun and visits from family and friends.  The biggest birthday party in the world happened and we welcomed home our youngest daughter and her family from the far side of the world .  Our girls drop by and gag at the snot collected in the de-gunker, but they return the next day with their families.  The baby is crabby because he, too, is recovering from bronchitis and we all have survived that arctic cyclone, the polar vortex. (Of course I had to get that in there.)

There is so much loveliness in living. The sun is shining, it should warm up quite nicely for the rest of the week.  Is it any wonder, we both whisper, "not yet."

Happy Birthday STEPHEN HAWKING, 72 years old ALS patient who for over 40 years has digitally shouted "NOT YET!".