A Season of Deception

Before hubby’s heart, kidneys and liver all simultaneously shut down in July, necessitating our now infamous trip to the hospital and his subsequent battles to remain among the living, I’d love to say that there were no warning signs.

Zip.

Zero.

Nada.

Oh, but there were.

Plenty of them in fact.

However – each of them mimicked other things, some not so serious that we’d been dealing with for years. Others impersonated other symptoms of serious, yet manageable, conditions that we’d been coping with and, for the most part, successfully handling.

Even my much vaunted “woman’s intuition”, when it did kick in with “hey… something ain’t right here” was assuaged by trip after trip after trip to primary care docs and specialists.

Shortness of breath and coughing? Fluid in his lungs – from the pneumonia that he contracts twice a year like clockwork (and it WAS that time of year).

Lousy appetite? Standard procedure with pneumonia. And, besides, he’s had a lousy stomach for decades.

High creatinine levels? Dehydrated, ate too much protein. Adjust the diet (again).

Even the ascites they found in his CAT scan to confirm the pneumonia diagnosis were almost an afterthought and were explained away as tiny pockets, and probably transitory. A scant week later, they had morphed into lakes from tiny puddles.

He’d even had a appointment with his cardiologist previously scheduled for the day he woke up in the cardiology ICU ward from the night in the ER.

Who knew that three major organs were conspiring to attempt his murder? Certainly not his specialists and providers to whom we dutifully reported every symptom, every concern. And more certainly, not us.

See, the thing is – none of the symptoms presented to any of us as they truly were.

Not that I am trying to absolve myself of any guilt, mind you. 20/20 hindsight has provided me with more than enough of that.

Why didn’t I see it?

How could I be so blind?

I should have put the pieces together sooner.

Dammit – I. Should. Have. Known.

Now, I am left with the uncomfortable reality that forces me to transfer that wariness to everyone and everything else in our life.

The total complete trust I once had in even the most likeable providers is gone.

It’s been supplanted by “are you sure?” and “what about…?” and “why would you say that?”. Most of all, it’s been replaced by “I’d like more information” and “My research doesn’t jibe with what you’re telling me” and, supremely with “My gut instincts don’t like that answer”.

And as my suspicions have been roused about all things medical, they’ve gone on heightened alert about other facets of life as well.

Is that family friend who has suddenly become a little too chummy and inappropriately affectionate with an older family member *really* behaving that way out of concern? Or are there ulterior motives at work?

Why are we suddenly getting calls and messages on social media from long ago angrily estranged family members? Is it merely coincidence?

Is the sudden barrage of Tweets from Group “A” helpfully informational or are they only a cover to hide more nefarious deeds or intentions?

Is the sudden appearance of one story line or two endlessly repeated across all forms of media simply because it’s newsworthy, or is it a coordinated effort to shape public opinion?

Are the thought leaders that we’ve looked up to for years really “looking out for you” or are they most likely “looking out for themselves”?

What is someone saying or portraying themself to be that is mimicking other benevolent (or at least benign) people that we’ve admired, that we’ve trusted?

Are any of them truly presenting themselves to us as they truly are?

How many other warning signs have been out there that I (we) haven’t or won’t put 2 + 2 + 2 together on that are now lying in wait to bite us on our collective posteriors when we least expect it?

The worst part? I really, *really* don’t like feeling like this.

I want to be trusting.

I’m happier when I believe that everyone has good intentions.

My world is a nicer place when I can think that we’re all on the same team – that we all want essentially the same things.

My world has been changed because of this season of deception. Perhaps irretrievably so.

The comfortable days of “It’s going to be okay – they’ve got my back” are over.

The days of “go along to get along” are gone.

So, what am I tasked with now?

Bridging the divide I’ve set up. Someway, somehow, not becoming a curmudgeon who distrusts everyone and yet maintaining healthy skepticism.

 

Why didn’t we see it?

How could we be so blind?

We should have put the pieces together sooner.

Dammit – We. Should. Have. Known.

The Myth of “Me Time”

Recently, friends and family alike have all said in one form or another that I need to make sure I take some “me time” while dealing with hubby’s decline.

My stock, somewhat tongue in cheek reply is “Can I get that on Amazon? I have Prime, so I could have it in, like, two days.”

While I’m sure that the “me time” advice is being offered out of love and concern – I am obliged to point out that there is no such thing.

You see, when you’re dealing with a terminally ill spouse (or, I would suppose, a critically ill child) – “taking care of them time” and “me time” can not possibly exist in the same time/space continuum.

In my dreams, “me time” would be some fantastic heady combination of pepperoni pizza, Tanqueray and Tonic, a bubble bath, soft jazz music on the iPod and a sappy movie or two on NetFlix.

In real life, I am dealing with a very physically weak, suddenly frail, horribly scared person whose condition changes minute by minute. “Good days” are those where he can sleep a lot, joke with me (yes, he still cracks some of the worst jokes on the planet), eat meals together and maybe watch some football.

“Not so good” days are the ones where he’s in pain, having panic attacks, completely wiped out from dialysis, or furious with himself because he can no longer do the things he used to be able to do like wash his hair, put on his shoes.

And a good day can become a not so good day in the blink of an eye.

He is also not at all comfortable with strangers (neither am I for that matter), and the initial parade of people we had traipsing in and out of our home when he first got back from the hospital were more irritating to him than helpful, to be honest. How many times can you squeeze someone’s fingers, get your blood pressure taken and answer the same questions over and over and over again before you get a wee bit perturbed?

Yes, we have family here in town. But they all have lives and obligations of their own. And there would be the inevitable guilt if something happened while I’m not here.

When he cries out, it’s for me. When he needs his medicines, I know where they are – it would take longer to tell someone where everything is and how he likes things than it would take for me to just do it myself.

So, it’s me. By default.

What I have gotten quite proficient at is not “Me Time” but being more efficient at “My Time”.

I’ve learned to fill the extra oxygen tank as soon as I get him back in the house from his three times a week treatments.

I’ve mapped out the city and can take care of all of the shopping, client visiting and bill paying during the four hours while he is in dialysis.

I’ve learned that I am capable of recharging the air conditioner in the truck all by myself instead of sitting at a shop for hours.

I’ve learned how to measure intake and output (although I’ve yet to figure out how to classily disguise a urinal).

I’ve learned how to fold up a wheelchair and a walker and the best way to sling it sideways to get it up into the back of the truck.

I’ve learned that doing one small load of laundry a day makes more sense than trying to do it all on one Saturday afternoon.

I’ve learned that sleep is overrated.

I’ve learned that pepperoni pizza will always be there, Tanqueray and Tonic will still hopefully be legal, and a bubble bath, soft jazz music on the iPod and a sappy movie or two on NetFlix can wait until someday.

When we got married nearly a quarter of a century ago, I remember saying “In Sickness and in Health, for Better or Worse” – not “Whenever it’s convenient for me”. This was part of the deal long ago – or, as hubby cracks with a wry smile “the fine print on the marriage license you neglected to read”.

So, friends – I love you, and your concern is appreciated, but for right now, I’m happy to forego “Me Time” for “We Time”.

I asked. You shared. Thank you.

Almost the middle of September, 2001. The sky had lost the cerulean tinge that we’d reveled in all summer and had faded into that washed out light blue that I’d long ago come to associate with the arrival of autumn.

As we all know, the America (dare I say the world) that we knew changed that day.

I asked a simple question of my Twitter followers and FaceBook friends:

1). Where were you on September 11, 2001?
2). What feeling do you most remember from that day?

Over the next few hours, I heard from friends as far away as Australia and Italy, and have thus far logged dozens of remembrances from people of all backgrounds and political persuasions.

With their permission, I’d like to share some of those with you.

There was shock and disbelief.

From @SerenaMunro1:

I was at home in bed. My hubby told me a plane crashed into WTC. Not knowing what kind of plane, I asked him if it was on purpose.

and:

From Judy Ward on FaceBook:

I was at work at Americo Insurance in downtown Dallas. Someone came in & told us what had happened. One of our agents called in to check on something about his commission and I asked him had he seen the news and he said, No, why? I said just turn on your TV. He did and then all he could say was Oh, My God! Oh, My God!! over and over. I felt the same way he did.

There was, of course, fear and concern for family members.

From @CommonSense_243:

My son worked in Midtown Manhattan.I couldn’t reach him for 8 hrs. Our family cried,prayed. He & roommate helped in BucketBrigade.

and for friends

From @PaulKinkel

I was at work. I remember it took a while to account for a friend who worked in the Pentagon. (He finally got home and emailed)

Feelings of dread and rage.

 

From @c_m_barnhart:

At home, online, watching on TV and helping people track down loved ones. I remember dread combined with rage.

And anger, even hatred:

From Charles Brown (FB):

I was fishing in northern Minnesota had a great morning over 60 crappies went in to get key for fish house as I was in there saw the second tower get hit we sat there for 2 more days watching the news then went home I felt shock then anger then for the first time in my life I felt hatred

and from Malcolm Granville (also FB):

1) I was running a trash route in Leesburg VA down the street from the FAA building and was advised to come in. I had left my base shortly after the first plane hit the WTC and word came in that the FAA building had been targeted. 2) A burning anger at those that sought to threaten the very way of life I had sworn to protect as a Marine. I was ready to suit up and join the fight. The next three months, I posted at the impact site at the Pentagon as 30yd boxes of rubble were loaded into my containers for their trip south to King George landfill to its final resting space.

From those who were close by NYC:

John S. Wisniewski (FB):

On the New Jersey Turnpike across from NYC. I watched it all happen. 2. Total numbness and disbelief

and right there, right then.

From @marnes:

was in my car watched the 1st plane fly into the tower. I worked 4 the city of NY. I worked downtown. I still can’t talk about it.

And watched the Pentagon be attacked:

From @ThePurpleCat16:
DC native. I was in my car stuck in rush hour traffic and saw the plane hit the Pentagon.

To those who were on the other side of the country:

Jeff Reynolds (FB):

Eugene, Oregon, preparing for a business trip. Feeling of absolute desolation.

Even in a country far away, the shock was palpable:

Australia:

Petra Michele Diamanté (FaceBook)

I was just arriving to work early hrs of the morning in Australia turned on the TV my first thought was that it was documentary for a new movie… as i sat glued to TV i realised how that it was a real life Tragedy.. i was carer at time for disabled lady… i went into her room to tell her about what happened.. i just burst into sobs and couldnt keep talking…..i just kept saying OMG OMG over and over took me hours to calm down.

Peter Benjamin (FaceBook)

I woke up and was getting ready for work.turned the tv on and thought it strange that yhere was a disaster movie on at 5.30 am.then realised it what i was seeing.couldnt comprhend what was going on.

And Italy:

From @Tamaraw68415067:

in Aviano Italy, and I felt powerless, devastated and detached from my country. I wanted to come home.

And the pain of losing a friend across the sea, from a colleague in Italy is still heart wrenching:

Sara Pistoli Parneau (FaceBook)

I was on the phone to a colleague working in the South Tower. He told me to stay on the line, I couldn’t understand what was happening though I began to feel wave after wave of fear. He came back after what felt like ages and told me the North Tower had been hit and off he went again only to come back one last time before we got disconnected: “We have been hit too, these are the last words I say”. I have never felt more helpless in my whole life.

And when questioned about what happened to her friend, she said “He died. Not a single day goes by that I don’t think about him. I can still hear his voice.”

 

Some of you were just kids on that fateful day.

Like Robyn Rodrigues (FB):

I was 11!! I remember seeing the second plane hit when we dropped off my little brother at his sitters. At school that day we did not get to walk the halls we stayed in our home rooms and it was at our teachers discretion whether we watched the news or not.. We did not. We had class discussion all day about what was possibly happening. I remember being afraid, angry, and so very sad! I will never forget the feeling I got watching that plane curve to hit the second tower!

Others were (and still are) taking care of kids:

Kim Zygula Rothhammer (FB):

I was working in a school. We had a lock down. We didn’t know what was. I lived in New York for 2 years though. Our Principal came around to tell us and I was trying not to cry cuz I didn’t want to let the kids see my fear cuz they were saying Chicago could be hit.

 

Lyn Liphart (FB):

I was working on grant writing with my supervisor, on a tight deadline for that evening with the TV on in the background. My son, who was a college freshman, had called very emotional. (He did not recover academically that semester.) I was kept on task due to the deadline which probably kept me from completely falling apart. At some point in the day I had to return to my satellite office to console my team at work–and my daughter at home. I found time to fill up all the cars and stock up on emergency supplies. That is me–get through the emergency first–the days that followed were dark and I slept poorly. Over the years I have worked with children (now grown) who lost loved ones that day. Trust me when I say they are still reeling.

 

 

But there was also a sort of hope – a “We’re all in this together” feeling on that horrid day:

From J. Michael Cobb on FaceBook: I was working in the Georgia Pacific HR building (next to the big GP building). I had started working there about the week or two before. I recall seeing the news reports come in on Yahoo/Internet and thinking, “Must be bad weather up there – like when the B-25 hit the Empire State Building”…then the news spread.

The biggest feeling I recall was riding the MARTA train home and seeing *everyone* all worried together. No races, no ages, no gender bias, nothing but – we are all together in this. Remarkable feeling.

And my most vivid memories from that day, and the days that followed were:

1. The fear – the eerie silence of no planes in the air, save the military jets and helicopters on patrol.

2. The fist pumping hallelujahs every time a survivor was saved from the rubble that were tempered with story after story of cars left at auto parks that would never be reclaimed by their owners.

But my most important memory was the camaraderie I felt with my fellow Americans on that September day and for many days that followed.

While I and my circle were not in NYC, DC or PA – we did what Americans do best – we sent people to help, we sent supplies, we prayed.

Not once did we ask what party the victims belonged to, what their country of origin was (374 foreign nationals from 61 countries were also victims that day). It was people, real people helping other people who were hurting, who were scared, who were in need. They were our brothers, our sisters, our aunts and uncles, our children our friends.

Even a country or a continent away, we all became New Yorkers, DC-ers, Pennsylvanians that day. And we were briefly better for it.

I remember both houses of congress gathered together in the Capitol steps, singing “God Bless America” at a press conference. https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&cad=rja&uact=8&ved=0ahUKEwiQ5s6JvojPAhVBTSYKHT0vD0EQtwIIIjAB&url=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3D400FMTMeYmg&usg=AFQjCNG9QMgSGtSX2eOnFhsv6Nx-6VN3JA&bvm=bv.132479545,d.eWE

Soon enough, there would be accusations and political posturing from both sides of the aisle. “Your side caused this because of ..whatever” was the favorite suggestion or outright accusation of those who habitually seek to make political hay out of any tragedy, those who prefer to put party above country. But on that day, and the days that followed, we were all one people, united in our grief, in our shock, in our resolve and our caring.

A friend opined this morning that if the attack of 9-11 happened today, we’d eat each other alive. With the hostility I’ve witnessed this year (again, on both sides), I’m almost tempted to agree.

Then I read your comments. Then I see your tweets. Then I remember that no matter what political affiliation we have, we are all still brothers and sisters at the core. We all have families, friends.

Our real difference is not in “do we care” but in “how we care”. And I have to hope that there is still a middle ground that we can find to come together and care. I pray that it won’t take another September tragedy to make us do that.

“What If”

Once again, on September 10th, I (along with countless others) posted yet another iteration of the “On this day, hundreds packed their bags” memorial post on FaceBook. It’s a lovely sentiment, and, no doubt, thousands of people will be posting their own version of it on social media today and tonight.

I posted something like this last year on the eve of 9/11.

Events this year have made this even more relevant to me.

I hope you agree.

September 10, 2016:
On this day 15 years ago, millions of Americans went about their usual routines. Later that night they would to bed quietly, with no thought that the next morning their world would change forever.

That night hundreds packed flight bags they would not live to open.

Thousands set the alarm clock for the last time, unaware that the next morning would be the last time they ever got out of bed.

Thousands slept with their loved ones for the last time. Some possibly had an argument, and maybe went off to sleep without telling their partner “goodnight”, or “I love you”.

One never knows what a new day has in store.

Let us live each day to the fullest and never miss a chance to let those dearest to us know how very much we love them.

So tonight if you have someone in your life that you love, or care about – tell them . . .

I just did.

Never forget.

Love you guys.

That got me to thinking, as I am wont to do, because, while I posted a sweet memorial on FB, I also had let off a string of, shall we say “less than charitable” tweets on Twitter the day before.

I was going to write “Hypocrite, thou art Judianna”, but it’s more like “We’re only human”. And, as humans, we forget. We forget the “What If’s”

“What If” your last tweet was GFY?

“What If” your last act was flipping off that idiot driver going too slow in front of you?

“What If” your last conversation with your spouse was something heated and accusatory because they didn’t put the dishes in the dishwasher in the right direction?

“What If”?

OR, “What If” the last tweet you read was someone telling you what part of your anatomy your head was located in?

“What If” the last person you laid eyes on was an angry individual giving you the one finger salute?

“What If” the last words you heard from your beloved was “Why didn’t you…”?

Many years ago, when hubby and I were first married, he had a serious enough bout of stomach pain and a long enough history of heart problems that I raced him to the emergency room. It was Thanksgiving night and, as we were waiting to be seen in the examining room, we observed a little old man and his tiny bird-like wife walking down the hall behind a too-busy-to-be-nice-because-it’s-a-holiday-and-I-have-to-work-dammit ER doc.

The doctor was very insistently telling the man that he should sign a DNR (do not resuscitate) order because “you are old and you have a lot wrong with you”. I heard his wife gasp and watched her visibly blanche and my heart went out to her. Her husband, obviously the strong force in their who-knows-how-long union, said “Nah. I’m a tough old bird. I will survive this and I’ll be just fine”. His words were possibly meant more to comfort his shaken wife, or perhaps they were a polite man-to-man slap in the face to the smarmy ER doc.

I told hubby that, number one, I hoped we didn’t draw him as a doctor (we didn’t) and, number two, that I hoped the old man pulled through and lived many happy years just to show that smarty pants a thing or two.

That memory came rushing back the Saturday before my husband was discharged from the hospital. It was barely 7:00 a.m. and I hadn’t even downed my first cup of coffee when I got a panic phone call from him.

It seems the hospitalist (I hesitate to even refer to him with the respected title of “doctor”, so from here on out I will simply call him “Poopyhead”) had just left the room. Hubby informed him that the attending cardiologist was weaning him off of his dopamine drip and he was going to be sent home in a few days with a prescription for a tablet that would maintain his blood pressure. “Poopyhead” said “Oh. You think so? I have news for you – the second they stop that drip, your heart will stop and you’ll die. You’re not going to make it home”. And with that, he whirled around and left the room.

Hubby dialed me and, choking back tears, begged me to get to the hospital so he could say one last goodbye.

I’m not sure how many drivers I flipped off on my race to the hospital. It is most probable, however, that the floor nurse, who had the misfortune to be in my husband’s room when I came screaming up the stairs, will not soon forget me, nor the torrent of curse words I bestowed upon her. She then informed me that hubby had, on “Poopyhead’s” insistence (and while on a morphine derivative, by the way), signed a DNR the night before.

I demanded to see “Poopyhead” immediately, and I told her in no uncertain terms that we were revoking the DNR. Just then the attending cardiologist walked by and I flagged him down, told him about the pronouncement from “Poopyhead” and asked what the cat hair was going on. He said that no, discontinuing the drip would most certainly not mean imminent demise and, that he had put in orders for a bolus and additional medication should hubby’s blood pressure drop precipitously.

That began a three day barrage and harangues from Poopyhead (who said that he was just “being a realist”) and the charge nurse who were both hell bent on us leaving the DNR in place. Unfortunately, DNR now equated “Do Not Remember To Check On The Patient At All”, and hubby was equally hell bent on not dying in the hospital. I explained forcefully (and probably impolitely) that, even if they resuscitated him long enough for me to drive him home and let him die there, that was his wish. This time it was my words that were meant not only as a comfort to my visibly shaken husband, but I made certain that they were delivered with enough accuracy that they were a direct slap in the face to Poopyhead (only because there was a hospital gurney between us).

Anyway, their barrage was one we withstood because, in the end, even though hubby is terminal, he’s by gosh going to pass away in his time and God’s time and not at the convenience of some hospital internist or to satisfy the balance sheet of an insurance company.

Which takes me back to my “What If’s?”

“What If” the last words my husband ever heard was the smarmy declaration of Poopyhead and he passed away in a panic?

“What If” I hadn’t made it past that ridiculously slow driver on my way to the hospital to say I love you one more time?

On the other hand, “What If” I hadn’t revoked the DNR? Would he have even survived the next few days and made it home to celebrate our last anniversary together?

“What If” I’d meekly acquiesced to the nurse and to Poopyhead and not flagged down the cardiologist (whose orders had conveniently *not* been entered in on hubby’s chart until our conversation in front of the nurse)?

“What If” I hadn’t reached out to so many friends and strangers alike to get the help I needed to bring my man home one more time?

I’m somewhere between wanting to be humble and grateful and gracious, and being the redheaded pit bull with lipstick who is not going to allow any of her friends or loved ones to be pushed around and will mightily push back when necessary.

In other words, I’m only human. And, as a human, I’m struggling each day with the “What If’s”.

Directional Changes

I often make quick notes while I’m out and about to use as fodder for future blog posts. July 20th of this year was no exception. While returning from shopping I passed by a young man, one of many in my city here in Colorado who was panhandling in front of a shopping center. As I sat waiting for the light to turn, I observed that he was clean cut, fairly well dressed and dancing to music on his not inexpensive iPod waving his obligatory “Please Help” sign each time a car would approach. However, when they’d drive by without giving him money – he’d flip them the bird.

I marveled at how he was somehow oblivious to the fact that the other people he was hoping to get donations from might be a little put-off by his gesture to non-givers. And I further noted to myself that his seeming demands for assistance without thanks might be a blog-worthy topic.

When I started my itty bitty blog many moons ago, I suppose I had visions of being the next Catty Von Snarky-Pants commenting on all things politic. I was toying with using that young man’s actions as a starting point to discuss the little-reported side effects of legalizing recreational marijuana in Colorado. I was most likely going to relate that scene to the rudeness and outright demands I’ve sadly observed on social media by those who support certain candidates, and doing so with my usual panache and flair.

While I still harbor great disdain for a certain tangerine-hued politician and his more off-putting fans, I’ve discovered that life can throw you the goshdarndest curve balls when you are least expecting them.

I’d only just arrived home that afternoon when I needed to rush hubby to the hospital for what has been, put simply, a nightmare. The column got shelved. Life as I know it got shelved.

As those of you who follow me may know, I’m a native Coloradan. Partly because of that, and partly because of my upbringing, I have an independent streak a mile wide. I’m often too hard-headed about “doing things myself” and going it alone.

The trope “It takes a Village” has always somehow bothered my innate sense of self-reliance. But suddenly, I found myself needing to (*shudder*) ask for help. My condescension of the young man I witnessed now seemed haughty. How dare I question why he needed to ask for help? Heaven knows I’ve said less than charitable things to a number of drivers en route to hospital races when hubby was in crisis. And, since the internet is forever, my less than Christian replies to certain adherents of a candidate I greatly dislike are well documented.

Over the last month I’ve been gobsmacked by the generosity of friends and strangers; humbled that my post as a tribute to my husband has been so well received; blessed with your replies, your stories, your shared experiences. And we’ve been buoyed by your prayers. My village has grown and so has my admiration for you, my fellow travelers.

So the focus of JudiannaBlog has probably taken a new course. I’m still not sure what course that will be (and I reserve the right to be snarky about politics on occasion), but for those of you who have chosen to join me on this journey, thank you. I will try to post columns worthy of your consideration, worthy of your time… and I promise to mightily resist having this blog become a maudlin experience lest I get beaned by another curve ball.