Pray and Laugh

I didn't exactly forget to put up a Pray & Laugh post last Friday, as I said I was going to do each week.  It is more a matter of still contemplating how I am going to apply it.  Some issues it has occurred to me I need to pray about are deadly serious and certainly do not lend themselves to a subsequent laugh.  But I still agree with my comrade in cancer from last week that it is essential to do both in order to heal.  It is still a work in progress.  However, I'm not going to worry about it.  I know we will work something out together, with quiet inspiration from God, and it will fall into place. 

There have been several things on my mind the past two weeks.  But the situation that seemed to loom the largest (and most expensive) was the fact our boiler was broken.

When I bought my 80 year old house 14 years ago, there was much that needed repairing or replacing.  The non-handyman who had owned the house before me left an awful mess of inept 'repairs'.  Although I had paid a professional house inspector a significant amount of money and he had certified the house as in adequate condition, he was, let's see...how can I put this?  COMPLETELY INCORRECT.  The washer was illegally hooked into the sump pump.  The roof needed immediate replacing.  The attic conversion to two bedrooms and a bathroom had been done with no township permits and was not up to code, therefore two days before closing we found we could not get a Certificate of Occupancy.  And that is just the tip of the list.  I was naive and trusting.  You might also say I was a smug, smarty pants know-it-all.  Or an ominous combination of all, blinded by French doors, the sun room, the fireplace, the Craftsman built-ins, original hardware...you get the picture.

Follow the picture to the full basement, three quarters finished, with a built in bar, pool table and separate laundry room.  On the far wall of the finished space was a door.  And behind that door was No Woman's Land.  It was dark, dank, held dozens of shelves loaded with tons of man-stuff like metal and wood.  There was a work table to do the kind of work that I, myself, certainly would never do.  And there was...The Boiler.

In an eighty year old house that had only had three owners in it's lifetime, you can expect radiators and an old boiler and that is exactly what I had.  But it kept us warm and had been certified OK by the House Certifier, so I didn't give it a second thought.

Nine years ago when my carbon dioxide detector went off one afternoon, with brilliant logic I said to myself "Gosh, the carbon monoxide detector is going off.  The new toaster oven that I just bought must be defective.  I hate it anyway, I will just get rid of it and get a new one."

I know I am hearing some groaning out there.  Before we go any further, let me remind you from kindergarten to high school to college, childbirth ed training, nursing school and graduate school, I have about 22 years of education.  But back to our story...

I pitch the harmless and helpless toaster oven out and buy a new one.  Boy, those were the days.  Sigh.  Dumb AND well off.  At any rate, lo and behold, the carbon monoxide detector goes off again one afternoon.  "Gosh" I think, "There must be something wrong with the carbon monoxide detector.  I better get a new one."  So I get myself a new, ceiling-type CM detector.  And what do you think happens?  Why, THAT detector was broken too!!!  What are the odds?!?!

My sister was heading over to visit, so I asked her to run into Target on her way by and pick me up a new detector.  She got a plug in one this time and I didn't look at it until after she left.  I plugged it in to the kitchen outlet and the reading shot up to 50 ppm (parts per million).   Safe is ZERO.  Finally showing a modicum of the intelligence I supposedly had, I went down to the basement, back to the scary boiler room.  Before I could even plug it in, I was already woozy and nauseous.  But out of morbid curiosity, I had to know.  The number zoomed up to 375.  Even I knew this was bad.  I opened all the basement windows on my way out, hit the Emergency Off switch for the furnace, got the dog and high tailed it out of there.  Next call was to the boiler guy.

The boiler guy was the same one who had installed the boiler fifty years earlier.  Our children went to school together and I was friends with his wife because of that.  He had a good reputation and offered a turn around time of one day.  Best of all, I would have a new boiler and that issue would not be a problem for decades.

For decades.  Right?  So why did I have no heat less than ten years later?

Because that is the story of my life, that's why.

The first repair person that I called two weeks ago came in dressed like someone exploring a spill at a nuclear power plant.  He gave his dire-you're-lucky-you're-not-dead speech and estimate of $13,000.  I was still sobbing when he left.

The next repair person was arranged for me by a high school classmate.  His technician was funny and kind and thought he had found the problem, but it wouldn't stay lit.  After a few more tries like that and a week of very cold nights, it was determined we did indeed need a new boiler.  No one could figure out why the old one gave up and the guy who had installed it for me was now in his 90's and the business was closed.  The question was moot anyway.  I had just gotten out of the hospital and we were freezing.  I didn't know how I was going to pay for it but the owner of this second company, along with his tech and my classmate, worked out an incredible deal for me.  They worked for hours on Thanksgiving eve, until almost 9 p.m., to make sure I would have heat again. Despite my snarky comments, once again I was blown away by the amazing kindness and generosity of truly good people.

The Prayer

I am so incredibly lucky to have the support of friends and the support of their friends.  This care has seen me through many crises, not just the boiler debacle.  But I know while we are warm this Thanksgiving and have much to be thankful for, there are far many more who are suffering right now.  This prayer is for those who do not have access to warmth, the where-with-all to get help or do not have help available at all.

For Those Who Are Cold This Night

Lord, I thank you for the warmth and safety of my home and for putting in my path people who could and did help me.  Please comfort those tonight who are struggling to survive without this consolation, those who are cold or homeless.  Allow your love to spark in their hearts, to give them hope and the resources to seek help.  For those who cannot reach out, for those who are too beaten down or too unwell, please give them some sense of relief or healing.   Let them feel the blanket of your love and peace surround them.  Open the eyes and hearts of those of us passing them by, that we might be aware and provide whatever help we can or, at the very least, to pray for them.  I humbly ask this.  Amen.

The Laugh

Because I love to laugh, I admire and envy all the comic geniuses who have treated us to their many and varied gifts.  As far as I am concerned, Peter Cook and Dudley Moore are two who are at the top of the list.  These brilliant men ironically led tortured, unhappy lives.  But, luckily for us, they have left a legacy of hilarious performances.  This is one of my favorites, "The One-Legged Tarzan".  













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Praying/Laughing Friday

I met someone the other day that I believe is one of those people God puts in your way for a reason.   Although he was an utter stranger, he knew something of my struggles.  And he gave me two words of advice for survival:

1)      Pray 
2)      Laugh

It was as simple as that.  He swore those two efforts are what got him through his own difficulties in the past.

So I am going to try to make this a once a week thing.  Praying/Laughing Friday (I know, I know, it is an awful title; I haven't been able to think of anything clever).  Even as I type that I think about all the things I think are funny that would seem horribly sacrilegious paired with prayer.  I also think of all the weeks when I have no idea it even is Friday.  But I am going to give it a try anyway.

(P.S.: Anyone with a better title idea or other suggestions are welcome.)

PRAYER:

For today I have just included some quotes from the Bible that have always been a struggle for me to follow.  Love my enemies?!  I want their faces to fall off and their tongues to fall out.  Ok, maybe just the tongue part, they can keep their faces.  But love?!

According to Jesus it is cut and dry:

Luke 6:27-28

27 Jesus said, "But I tell you who hear me: Love your enemies, do good to those who hate you, 28 bless those who curse you, pray for those who mistreat you."

And just how is love defined, anyway? 

1 Corinthians 13

13 If I speak in the tongues of men or of angels, but do not have love, I am only a resounding gong or a clanging cymbal. 2 If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but do not have love, I am nothing. 3 If I give all I possess to the poor and give over my body to hardship that I may boast, but do not have love, I gain nothing.

4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.

8 Love never fails.

13 And now these three remain: faith, hope and love. But the greatest of these is love.

As I said in my last blog post, it breaks my heart personally and globally that we human beings do not treat each other better.  We’re all guilty of it, although I do know some people who seem exceptionally benevolent. 

So here is my prayer for this Friday: Pray for those who mistreat you, because love never fails.

AND NOW FOR SOMETHING COMPLETELY FUNNY:

What I have attached here should be a public service video for parents.   

When my boys were little, I was a total nutrition fanatic.  I made my own snacks.  I only served wheat bread (when the boys had white bread for the first time, they thought it was cake.)  After I found out Ryan had traded his homemade granola bar for a Twinkie at school, I actually wept.  Yep, I was ca-ray-zeee.  And I turned my boys into the world’s worst eaters.

By the time the girls came along, I had pretty much given up and let them eat what they wanted.  And wouldn't you know, they developed varied and healthy food choices, all on their own.  So I fully support Bill Cosby’s philosophy in this hilarious video. 

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A Vineyard of Whine

I lay here in the semi-darkness, in a shabby, aged, not particularly clean hospital room.  It is the middle of the night.  Although I can hear the sweet sound of rain that I love, the bed is lumpy and hard.  I've been moved up from the ER, where I had spent many miserable hours, feeling so, so sick. My roommate snores. Am I ever going to sleep in the same room with anyone who does not snore, for Pete's Sake?!?! Apparently this room is across from the staff room.  About a half a dozen voices chatter cheerfully in Tagalog.  A couple of residents earnestly discuss their futures, marriage and vacations.  And I still, after 8 years of MS and a previous lifetime of ridiculous good health, cannot believe I am here.

I started feeling worse than usual a few days ago.  I was super weak and had the chills.  I just couldn't get warm.  My poor, lymphoma-ruined legs could not swing up onto my bed.  The pain level was through the roof.  The area being radiated every day was beginning to feel sore and a little cluster of blisters had already developed on my neck.  My restless leg syndrome, usually so repsonsive to the medication, was resisting for a change, with that awful sensation extending up to to my arms.  And, my personal, most humiliating favorite, incontinence, was complete.  Ahh, the wonderful world of multiple sclerosis.  I was changing my clothes dozens of times a day.  And, as shaky and wobbly as I was, that was no easy feat.  Finally, this morning, after a nightmarish night of unsuccessfully trying to make it to the bathroom on time over 20 times (yes, an unbelievable 20+ times), I curled up in bed and wept.  I gripped my rosary and murmured the words I have known for almost my entire life.  But in my head I just kept begging God to end this horror, the constant pain, the mortifying dependence, the fear, the worry.  Then I slept for about twenty minutes.  A record.

When I woke up Mary Kate was standing over me looking horrified.  "You HAVE to go to the hospital!" she demanded.  It only took me seconds to agree.  She called the ambulance, her husband went out to wait for it and I just sat in misery.  I was escorted by two kind EMT's and two professional, serious paramedics. They found my blood pressure was 200/110, which won me a free, speedy trip to the ER. And so here I am.

I felt like the dog's dinner. They started me off with a huge dose of IV Solumedrol.  Slapped monitors on every inch of skin.  And I could not get comfortable for even five minutes because the whole bathroom thing was hanging over my head. I had no idea what the plan was, but at least I had a commode next to my bed.  And, while the setting here is pretty gross, scruffy and neglected, every single staff member has been incredibly cheerful, sympathetic and helpful.  They offered things before I would even think of them.  They offered to do things before I knew I needed them.  It is indeed the little things that make a difference, but actually these acts of patience and kindness were huge.

The plan now is to do an MRI of the brain and spine.  This could be an MS exacerbation, a pseudo-exacerbation caused by a virus (which ramps up MS symptoms but is not a true relapse) or, so wonderful to hear, further metastasis of the breast cancer.

Two lovely, kind ladies just stopped in my room, volunteers from the hospital's ministry program.  I am having such a hard time not being sad and scared, but in the few minutes we chatted and prayed,
these women were truly inspirational.  They were pleasant, down to earth and simply beautiful in so many ways.  Every encouraging word they said about not being afraid really hit home.  I still have to work on it, but God sends His light to me through people like this and my wonderful, generous friends, old and new.

I am counting on healing, hoping against hope I will be healed.  But if I am not, I pray for acceptance and grace, for courage and dignity.









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Not What I Expected

I never, ever thought I would get cancer.  Not in a million years.  But if I did, in my dreams I would be cool and dignified, tragically elegant, wan and heartbreakingly beautiful, facing my fate with courage and decorum.

Snort.  So much for dreams.

In reality, I am a blubbing, hysterical, terrified blob of a mess.  Instead of tissues, I have a roll of paper towels at my bedside to sop up my endless weeping.  The cancer diagnosis is bad enough, but the complications related to MS have me in a panic, mostly because my physicians are in a panic.  Panicky physicians do not inspire a tremendous amount of confidence.

Right now, though, the hardest challenge of all involves my children, who I adore beyond my own life.   For a variety of reasons, some logistical, some personal, at this point in time they cannot be together with me through this.  Of course, we always want what we can’t have and all I want is them.  ALL.  I.  WANT.  IS.  THEM.  My oldest daughter is doing what she can, but, in typical perverse fashion, the situation is too much for her and she alone is not enough for me.  We need to be together as a family.   Their being here would give me the confidence and assurance I need right now.  My courage, my strength, my reason for being, it all comes from them.   I want them here with me, I want to hold their precious hands.  I want their presence, I just want to look at them.  I simply want them.

But even typing those words feels like the most churlish dismissal of what I DO have, which is the most incredible network of support from friends and even people I don’t know.  My friends are the ones who drive me to appointments, listen to me cry, who show up at my back door with frozen drink treats, who tell me everything is going to be all right.  They are the ones who are storming heaven, sending me cards, calling me to tell me they love me.  I do count some family in there, especially my beloved cousin Steve, whose unconditional love has been a constant for my entire life. But for the most part it is friends, acquaintances, friends of friends, virtual friends from our blogs, these are the people who are here for me every minute of the day, radiating caring and hope.

Their campaign of love and optimism is irresistible and I am joining in.  I have never felt worthy before of asking for healing.  But I have been utterly inspired by the confidence that is enveloping me.  I am praying that the cancer has not spread, that the surgery will successfully remove it all, that my care givers will be skilled enough to get me safely through the surgery without needing a vent. 

In January 2004 I teasingly said to my kids “I am turning 50 in September.  I better be getting a pretty darn big party!”  And I did!  My sister and the four of them gave me a wonderful, fun surprise party.  My oldest son delivered a touching toast, stating his pride and love for me.  I was surrounded that day by love and laughter and joy.  It is inexplicable to me that things have gone so terribly wrong. While I am praying for a good outcome and future, more than anything I am praying for my children, that they may also be healed and strengthened and that we can come together as a family once again. 

I listen to meditations written by Belleruth Naparstek, a renowned psychotherapist who was a groundbreaker in the field of guided imagery.  I am focusing on two affirmations in particular to get me through this:

I can feel around me a protective cushion of energy containing all the kindness, good wishes, prayers, gentle smiles, and sweet gestures that have ever been sent my way.

And…

I know that I am held in the hands of God and I am perfectly, utterly safe.

And so I am.

 







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Sadness and Miracles

I am so relieved to be home, but there is no getting back to normal as there is no normal left.

I had been in the hospital for three days while the options for surgery on my gall bladder were batted around.  That third day my surgeon, a local superstar wunderkind, previously all good cheer, came to me with an absolutely stricken look on his face.  An ultrasound, x-ray, MRI and CT scan, all done while testing the gall bladder, were showing a mass on my liver.  It did not look good, he told me.  In fact, it was probably a worst case scenario.  I was pretty stunned, but not as upset as I would have expected.  I didn’t cry or anything, I was just numb.  Fortunately, my friend Christine was with me the first time he broke this news and that made an enormous difference.  Thank goodness I was not alone.  He had already been concerned about doing gall bladder surgery because of my compromised breathing.  Now the surgery I needed for a liver tumor was so complicated and serious, I actually had to be transferred to a different hospital where he worked with another surgeon who specialized in liver surgery.  And there was no question of not doing it.

When I posted this on Facebook, the response was staggering, with comments and encouragement and support from almost one hundred people, some of whom I didn’t even know.  Father David, our wonderful Interim pastor, visited and prayed with me, but to be honest, my own prayers were hollow.  I was dazed.  I sent final messages to my children and funeral plans to my friend Louise, to be given to the kids as needed.

The night they transferred me I had a final CT scan before they organized the surgery.  The next morning the surgeon was in my room again, this time almost speechless.  He felt like an idiot, he said, because the CT scan from the night before showed no tumor on my liver anymore.  There was nothing there.  Nothing.

I did not believe the surgeon was an idiot, although I don’t think that was the most appropriate approach to the news he had.  I also do not believe several doctors could have misread multiple radiology studies.  On the other hand, I had had no expectations of miraculous healing.  I just wanted a peaceful death.  Full of self-loathing, which is cheerfully supported by the people I love most in my life, I never considered myself a miracle candidate.  But it seems that might be exactly what I got.

I have sign hanging on my bedroom wall that says “Count Your Blessings”.  I bought it long ago, before I got sick, when I was leading what I felt was a charmed life.  Four fantastic kids who were wonderful, fun company, a terrific, rewarding career, my little dream cottage, travel, back in school for my Master’s, there were almost too many blessings to count.  Then they started falling like domino’s when I was diagnosed with transverse myelitis and, ultimately, MS.  My family relationships are now in a shambles, with most of them not even speaking to me anymore.  My career is finished and I will lose my cottage anytime now.   Travel?  I cannot even travel to my back garden.  My friend Marc, the Wheelchair Kamikaze, likens a diagnosis of MS to a personal Hiroshima. (Read his moving post here)  It may seem like a histrionic and hyperbolic reference.  But the comparison is apt in that the destruction of your former, healthy life is complete.  Our lives are ultimately shattered as thoroughly as that city was by the atomic bomb. 

Despite what turned out to be incredibly good news about no tumor, it is very, very hard to keep positive.  It is a gorgeous spring day today here at the shore and my family just left for the beach and the Ocean Grove flea market.   In my previous life I would have been there already.   I long to sit in the sun and listen to the ocean, to stroll around the flea market and people watch.  But I can’t get there myself anymore and I wasn’t invited to join them.   I am too much trouble to take along.   The logistics of getting dressed, getting me and my wheelchair into the car and then getting onto the actual sand are overwhelming. 

I am simply so weary of being ill.  Anyone else would have had the simple gall bladder surgery already and would be on the road to recovery.  I sit here, a bundle of complications, with a tube in my abdomen, playing a waiting game until someone is brave enough to take me on.  I have already been told I can expect to wake up from surgery with a tracheotomy and on a vent (a hole in my throat and a machine breathing for me).  They anticipate that I will not be able to breathe on my own as I come out of the anesthesia.  The prospect of living on a ventilator makes me feel physically sick.  Yet I feel tremendous guilt for being so miserable, because I know there are people who are far worse off than I and I am still fortunate in many ways.  I still have many, many friends, each a blessing in themselves.  I suppose my ‘miracle’ is another blessing, put in my path to ponder.   I continue pondering…but mostly I ponder my lost son, how incredibly sad I am and how much I miss my old life.

____________________

To while away the idle hours I have been doing a lot of embroidery and some sewing. Whilst my familiar perches at my head. 

 

I loved these little sailboats from Sew and the City.  I had saved the pattern for my youngest grandson, but I think he has probably out grown them already.  So I stitched them up for the baby of a dear, dear friend who is coming to visit.  I stuffed them lightly, the easier for bitty hands to grip them, and I tied together a few bells and put them inside each.  If the little nipper managed to somehow open the toy, they are too big to choke on in a bunch like that.  My Resident Critic, my daughter, felt they are too girly.  But babies love primary colors, so I stuck with scraps from my Depression-era fabric patterns.  I think they are cute.

The only problem is it made me think of my precious little grandson, who I have only seen twice since he was born eighteen months ago.  I have lost so much, did I have to lose him too?  So I ended up crying the whole time I worked on them.  Tears are supposed to be cathartic.  They are not.  I simply feel worse than ever, bereft and utterly broken by the casual cruelty of this inexplicable estrangement.  

The birds and pansies came from a pattern that I got from an embroidery designer who is based in Cape Town, South Africa.  They were inspired by a Victorian gift book published in 1896.

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Dispatch from Room 557

Rehab is a world unto itself.

I think it is the lack of privacy that is getting to me more than anything.  There is not one aspect of your existence that is not scrutinized and made fodder for casual discussion amongst the staff.  What is sacrosanct for you is routine for them.  And that is, after all, their job.  But because there is no Cone of Silence, you hear more about yourself and your co-inhabitants than you ever would have wanted to know in a million years.  I am horrified to hear my elderly roommate reporting intimate details about my body functions to her friends and relatives.  I can’t imagine they are all that thrilled either.  At least those who are under 80 and not demented.

All rooms are doubles and, from the sound of it, no match is an ideal one.  Everyone has an issue and I am no exception.  Sharing a room with a seriously ill 85 year old with mild dementia is in turns humbling and exasperating.  She is truly suffering, and whimpers a good part of the day.  It makes my heart break but it is also extremely upsetting to listen to.  She is up multiple times during the night and, as a result, so am I.  The television blasts even though she is not watching it and I have to ask for it be turned off from in front of her sleeping form.  She is experiencing significant, audible gastric distress and I, apparently, am particularly susceptible to the sounds, as queasiness is becoming a permanent condition for me.  If I have to use the bathroom, it never fails that the aide has gotten her there first, which will mean a wait of at least 45 minutes while she is taken care of and washed up.  She needs help with her tray that I am too weak to give her, which means I have to sit and listen to her struggle until the staff comes in to help her.  And then there was the panic when she was apparently dreaming and called the nurse to report there was something seriously wrong with her roommate (me).  I was sitting on the edge of the bed reading as I heard this transpire out of the corner of my consciousness and an entire team had rushed in to resuscitate me before I could say a word.  They looked at me and I looked at them while she insisted there was something substantially wrong with me.  Which there clearly wasn’t.  If nothing else, it got everyone’s heart rate up a bit.

But then in the night I hear her murmuring, offering thanks and praise to Jesus in gentle little whispers.  I am chastened by her simple expressions of faith in the face of such adversity and pain.  With gratitude, I silently join in.

Physical and occupational therapy is hard work but, I am pleased and surprised to find, effective.  I can feel some strength creeping back, although stamina is slower in returning.  The staff is no-nonsense but incredibly kind at the same time.  My fellow patients are a fascinating cross-section, but each individual is a study in courage and accomplishment.  Some have had strokes, some are simply weak from advanced age, some are recuperating from surgery.  It is awe-inspiring to see how hard they are working and how determined they are.  There are some exceptions, those who are frightened and confused, those who are resistant and at least one dirty old man, but most are valiantly giving it everything they have. 

There is another woman here with MS.  The first day of my admission I was cheerfully told by a few people that we would be introduced, that I would like her, that she was very nice.  Which I had no doubt of.  But it never fails to surprise me that people consider having MS to be some sort of choice or hobby that connects people who have it.  I have no more in common with someone with MS than with an average person.  If they had said they would introduce us because she was a writer too or was a movie buff or lived in Ocean Township, that would make sense, but not based on the disease we both have.  And when I see her in therapy my heart sinks.  She is very, very ill and extremely impaired cognitively and physically.  What were they thinking?

The second day I am here (hmmm, or maybe the first?; it is so easy to lose track), I am interviewed by the team neuro-psychologist.  The mini-mental exam is interesting, but not interesting enough for me to rise to the challenge.  I just cannot wrap my brain around eight (or maybe nine?) unrelated words she asks me to remember and repeat.  I ought to be embarrassed, but I just don’t care.   Considering how competitive I usually am intellectually I am astonished at myself, but it is no incentive.  I have no interest in those eight words and they just won’t stick.  We return to them maybe six or seven times before giving up.  I never do remember them all.  It is a pretty humbling experience.  But not one I am particularly upset about.  This is not a good sign.

My independence has slipped away over the past year as the lymphedema in my legs limited my mobility and my function.  I did not put up much of a fight, as I am just so weary.  It seemed as though I had hit that wall of accomplishment and was just through with everything.  Hard earned career was over and done with.  Weight gain had rendered me hideously unattractive and uncomfortable.  I no longer bothered with getting my hair and nails done.   I don’t wear jewelry anymore or wear nice clothes.  What’s the point?  Not yet 60, I could see no future.  But the therapy here has had such an impact in so short a time that I wonder, maybe I will drive again?  Maybe I will be able to get myself somewhere to meet a friend for lunch or go visit my dad?   One of the nurses (Becky, I just love her!) is chatting as she wraps my legs and says offhandedly “Miracles happen all the time, you never know.” 

Now those are eight words worth remembering.

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