Category Archives: Health and Medicine

The End of My Rope — Again

Just like three years ago, I am anxiously awaiting the Supreme Court’s decision on the Affordable Care Act.  Three years ago, I was fairly certain that the right-leaning Court would deem Obamacare unconstitutional.  Three years ago, I was lucky.  And I wrote about it here.

Today, tonight, as I wait for the decision on a far more pedestrian case, I’m still worried.  OK, I’m worried again.

You see, the “Prime Directive” of my life, from the age of 17, has been having and maintaining health insurance.

That’s what happens to you when you develop health problems, regardless of the age.  You need to put your square peg of a life into a round hole of getting the treatment that you need.  It never fits.  And you always lose a lot of yourself.  Oh, and all of your dreams.

And frankly, I resent it.

Healthy folks don’t understand just how thoroughly something most people take for granted — good health, good health insurance — can literally mean the difference between life and death.

Because I’m sure — positive — that the Supremes will be reading this blog, and for the new-ish friends who haven’t read this piece, I’m re-posting my most intimate post.

The End of My Rope

Friday, the first of October, 1982, was a really bad day.

Actually, it was a mostly normal day even after I found a memo and a pamphlet in my office in-box. The law firm where I’d worked for more than three years had just changed health insurance companies. The information about our new policy, beginning November 1, 1982, three weeks before my scheduled surgery, would be with Liberty Mutual. I didn’t give it a thought.

But Andrea, one of my bosses, suggested I give them a call. “You’d better make sure they know about your operation and don’t need more information.”

So I called the number on the brochure.

Forty-five minutes later, Andrea found me at my desk, staring blankly at the ‘Sitting Duck’ poster hanging on my wall. It showed a white cartoon duck wearing sunglasses.  He’d been enjoying himself, sitting in the sun in a turquoise blue lawn chair on the side of his house, sipping a soda.  But he was looking in wide-eyed surprise over his right shoulder at two bullet holes in the wall.

Sitting duck poster

Poster by Michael Bedard
http://www.mbedard.com

I knew that if I looked over my shoulder, I’d see some bullet holes as well. I was that sitting duck — I always seemed to be dodging bullets.  Life with chronic illness had become one fucking thing after another.  Now, just when I’d accepted and agreed to the surgery that so terrified me, my insurance was gone.  BANG! BANG!

“What’s wrong?” Andrea asked.

“It’s not covered,” I said, numbly, without a hint of emotion. Then I began to hyperventilate. “’Pre-… pre-… pre-existing condition,’ they said.”

“What?”

I explained what I’d been told, that the new policy didn’t cover anybody for 30 days and that it didn’t cover pre-existing conditions for a year. The firm had changed insurance to save money. Their decision would cost me everything. Everything.

I didn’t want to have the surgery — it terrified me. But I’d adjusted, accepted that I was, in spite of my attempted denial, quite sick, and that I had to have the operation. But I couldn’t possibly pay for it. Where was I going to get the tens, maybe hundreds of thousands of dollars I’d need? I lived pay-check to pay-check, and rarely had a nickle to spare; I had no savings. My parents were retired, living close to the bones themselves. My siblings were likewise broke. And I had insurance!

Loss of the insurance meant one of two things.  I could have the surgery that I really didn’t want to have anyway and pay for it myself. Or I’d face another year of ever-worsening illness — hemorrhages, bleeding, weakness, diarrhea.  Dr. C had been clear — my colitis was not just going to go away, as much as I wanted it to.

Without insurance, even if I could convince my surgeon, the hospital and the zillions of other folks involved in a major operation to actually do the surgery on someone without insurance, I knew that I would spend the rest of my life trying to pay the bills.  Bills that would have been covered just the day before.

My mind whipsawed between the injustice of the loss and terror at what would happen to me if I didn’t have that damn operation.

Andrea came around to my side of my desk and put her hand on my arm. “We’ll figure this out, Elyse. It’s late now, everybody’s gone. But we’ll work this out on Monday.”

She sounded reassuring; I was unconvinced.

“Really, it’ll be OK,” she repeated. “But in the meantime, I need you to …”

Her voice trails off in my memory. Andrea was a compulsive workaholic, an A-type personality. Work always came before anything else. Other people at the firm thought it was annoying, insensitive, or worse. But for me, it helped. It was exactly what I needed. It took my mind off me. I did what she asked, finished up and went home.

Of course I fell apart once I was home and told my roommate, Keily, the news. I ranted, raged, and cried — I wallowed all evening.

“I don’t even want to have this operation,” I shouted as loudly as I could to Keily as I sat in the bathroom, the door open. My gut, naturally, was erupting. It almost always was by then, especially when I was upset. Cramps. Diarrhea. Blood. Urgency. My shitty symptoms mocked me, proving that I couldn’t avoid the surgery. That I couldn’t put it off until my insurance kicked in. That I was totally screwed.

Keily sat outside the bathroom at the top of the stairs, stroking Goliath; that was her perch as I got sicker and sicker. She sat there and talked to me. She kept Goliath out of the tiny bathroom (Keily’s only successful effort at getting the Goose, as we nicknamed him, to obey.) That night, she held Goliath, and soothed him and me at the same time. She let me vent, rage, rant.

“It’ll work out. There’s some mistake. They can’t just do this to you. You need to trust the folks at your office.” Keily said repeatedly.

“You mean the ones who agreed to the new policy?” I wasn’t in a mood to listen.

That night I’d skipped Goliath’s after-work walk. It was getting on towards 10 p.m. and he needed to go out. I needed to do something else, or at least cry somewhere else. Walking clears my head, lets me figure out how to fix a problem, helps me find an answer. I knew a walk would help.

“Do you want me to come?” asked Keily. She often did, and that night she was concerned. I was so shaky and upset.

“No, thanks, I think I need to be by myself,” I responded. “I’ll be OK.” Actually, I was wishing I could leave myself behind. I was sick of me. Sick of sick me, anyhow.

So Goliath and I got into the VW and headed to the Capitol grounds, where we walked most nights. It’s such a beautiful, inspiring place. Plus for a woman walking her dog, it’s perfect. Of course it’s well lit — you can see it for miles. But there are also security patrols that never bothered us but nevertheless made me feel safe. A 120 lb. German Shepherd helped make me feel secure, too.

It was a clear night, with a half-moon casting shadows from the beautiful cherry and oak trees, from the enormous rhododendron bushes and other carefully tended shrubs across the expansive West Lawn. Nobody else was in sight.

I let Goliath off his leash. Deep in my own thoughts, I didn’t pay much attention to him. Unusually, he stayed right with me that night. He was as worried as Keily.

I cannot believe this is happening to me, I thought, rage building again at the injustice. Because my whole entire adult life had been focused on making sure I had health insurance.

From the time of my first hospitalization at 17, I had lived my life — made every single decision — with health insurance in mind. My dreams of acting, of singing, of writing? Of doing whatever the hell I pleased? They’d all been flushed down the thousands of toilets I’d had to rush to over the 10 years since my diagnosis.

After my first hospitalization, and with word from the doctor that my ulcerative colitis would likely flare up repeatedly throughout my life, my parents forced me to go to secretarial school – a career path that had never figured into my plans. My mother was an office worker and she’d always hated her job.  It seemed boring and demeaning. Secretarial work had once been a good career path for bright women. But that, I thought in my young “know-it-all” way, was no longer the case. Mom was stuck with it, and she and Dad stuck me with it, too.

I complained bitterly; I was talented, funny, smart. It wasn’t fair.

I was wrong about both the work and the women who worked as secretaries. I quickly became pretty ashamed of my attitude, and some of the secretaries I knew became great friends.

Still when the chance emerged to turn a secretarial job into a job as a legal assistant, I jumped at it. In the job I’d had now for three years, I wrote for a living, analyzed legislation and regulations for the firm’s clients and learned about U.S. politics and policy. It was a terrific job. The firm had been good to me. And my parents were happy because I was still working in an office. With health insurance.

Another wave of anger came as I walked down the groomed hillside.

And then I saw it. Something I’d never seen there in the dozens of times I’d walked that route. Inexplicably, on the West Lawn of the U.S. Capitol Building, there was a pole sticking out of the grass with a chain attached at the top, and a ball hanging down.

Tetherball.

I walked up to it and started smacking that ball. I’d only seen cheap sets with rope attaching the ball to the pole. This one had a strong chain that was covered in a canvas sheath. But instead of improving my mood, hitting the ball deepened my feelings of desperation.

SMACK. I hit the ball as hard as I could. “MY BODY HATES ME!” I shouted as I pushed the ball around the pole.

WHACK. “MY LIFE SUCKS!”

SLAM. “Fucking, fucking FUCKING INSURANCE!

SMACK, SMACK, SMACK. “Hopeless. Hopeless. Hopeless.”

With each hit of the ball, I pushed myself towards the end of my own rope. There was no way to unravel all the problems I was facing, the problems that kept expanding.  Just as I thought I’d licked one, it would multiply. No way to fix all the crap that kept piling up. Crap that I suddenly felt that I was facing alone.

That was the moment when I realized, with surprising clarity, that life just wasn’t worth the trouble. At least mine wasn’t.

I decided at that moment to hang myself. I would hang myself from the tetherball chain on the grounds of the U.S. Capitol.  It suddenly became the perfect solution.

I saw no way out. I couldn’t continue, didn’t want to continue. And I’d gotten way past the amount of shit I could deal with.

I sat down on the grass on the hill just above the contraption and allowed myself one last cry. Naturally I didn’t have any Kleenex. Snot running with my tears did not make me feel any better.

The first problem I discovered was that I couldn’t quite figure out what to call the thing. It seemed important that I know what to call it if I was going to die on it.

I wondered: Is it a tetherball set? A tetherball apparatus? A tetherball thing-y? I didn’t know the answer.

Goliath tried to distract me, to cheer me and when that didn’t work, he sat down next to me and let me use his shoulder. He tried to lick my tears away, but they kept coming. He butted his head into me. But he got bored with my misery and wandered away.

I didn’t watch where he went, I didn’t care. It didn’t matter where he went, what he did. Whom he harassed. I was done.

The decision was made.

I got up and walked up to the tetherball thing-y and realized what I hadn’t noticed before: that the chain was actually quite short. Too short, possibly, for my plan. The ball itself fell to just the height of my shoulder.

I was shocked. How am I going to do this?

I reached up, stood on my tippy-toes like a kindergartner, grabbed the chain in my left hand, and tried to pull it down a little more. But it was a chain, so it was very strong and not at all stretchy. It was also pretty thick, about 2-1/2 inches wide and not terribly pliable.

I stood there, grunting, sobbing, trying to stretch my body. I held the ball and the bottom of the tether chain in my hand, trying to figure out a way to make this work. Wondering if I could quickly have a growth spurt.

How can I get this short thick thing around my neck?

Even on my tippy-toes and pulling it as hard as I could, it wasn’t long enough. It just reached from my chin to my shoulder — not even half way around my neck!

What sort of an idiot designed this damn thing with an impossibly short chain? I wondered. You can’t even smack the ball around the pole more than a couple of times.

Not to mention that it wasn’t at all helpful for putting me out of my misery.

I pursed my lips and moved them from side to side like Charlie Chaplin’s little tramp. I rubbed my chin and scratched my head.  Tried to solve the shortcomings.

Naturally, other problems popped up too.

What can I jump off of?

Of course, the answer was “nothing.” I was on the manicured grounds of the Capitol. I couldn’t pile up debris and jump off of it because there was no debris. The neat grounds rarely had much in the way of move-able objects.  I was starting to get annoyed.

I want to die. Now. Tonight. On the tetherball thing-y. How the hell can I do this?

There on the West Lawn of the United States Capitol Building — with security patrols passing every 10 or so minutes — I was hell-bent on committing suicide by tetherball.  I was trying to stretch, to grow, to find a ladder, a chair, anything I could jump off of with a piece of US Government-issued sports equipment wrapped around my neck. Wanting to and trying to die.

And then it hit me.

Or rather, he hit me. Goliath, of course.

SLAM! Something hard hit the back of my legs.

“Owwww!”

From somewhere on the grounds, Goliath had picked up a huge stick – an uprooted tree by the size of it. It was at least five feet long and four inches around. His mouth was stretched to the limit holding it. And he’d hit me with it in the back of my legs.

WHACK! He did it again. I turned and saw that he’d lowered his chest towards the ground into a bow. He kept his rear end high in the air, wagging the whole back half of his body ferociously.

He’d had enough of me feeling sorry for myself. It was time to play. So he rammed me with it again.

“Owwwww, Goliath STOP THAT!” I commanded.

He didn’t listen. He went around to my left and hit me with it again. His eyes caught the moonlight – they sparkled. He was laughing at me.

SLAP! “Owwww, NO! That hurts. Cut it out!”

He bounced to my right side with the long thick branch firmly in his mouth. Pretending to loosen his grip on it. Teasing me. Trying to get me to play. Wanting me to reach for the stick, which he would never give me.

(Come on, Mom, catch me!) He was play growling at the stick and at me. He bowed again, swung his head to and fro, and the long stick swung left to right, wobbled up and down. It got stuck in the ground for a second, and then he forced it back out again with a flick of his massive head. Goliath came close to me and then bounded off with his treasure. Circling me. Approaching me, but backing off before I could get to him. He never got close enough for me to grab that damn stick.

(Come on, Mom, try to grab it!) We were going to play, whether I wanted to or not. And he hit me with the damn thing again.

“Give me that stick!” I ordered. He wouldn’t. He danced around me and the tetherball thing-y and bashed me and the pole repeatedly.

I’m not sure if he knocked me over or I sat down in defeat, crying. He bashed it into me a few more times, but then lost interest. Goliath dropped his weapon — well out of my reach — and sat down beside me. He put his paw on my lap, his head on my shoulder and nuzzled me. Chewed at my hair and my ear. Let me scratch his ears.

“You silly Goose.” I said pulling his ears and tail affectionately. Hugging him. “You’re gonna kill me one of these days.”

I knew then that I couldn’t kill myself, that night or any other. Nobody in their right mind would take my stupid dog.

 *     *     *

I learned when I went back to work on the following Monday that the person I spoke with at the insurance company was wrong.  Mistaken.  My company’s coverage was considered continuing coverage and so my condition was insured.  I had my surgery and became healthy for the first time in about a decade.

Since the enrollment period for the Affordable Care Act, Obamacare, started, I have been haunted by the memory of the night I nearly ended my own life in a fit of desperation.  And while I think we can all agree that it was the silliest suicide plan ever constructed, that misses the entire point.

And that point is that folks who lose their insurance or who are without insurance are often desperate.  And close to the end of their rope.  I certainly was .

How many other Americans have been in that position?  Hundreds?  Thousands?  Millions?  How many think, consider, and/or attempt suicide?

The New England Journal of Medicine reported the following:

First, many suicidal acts — one third to four fifths of all suicide attempts, according to studies — are impulsive. Among people who made near-lethal suicide attempts, for example, 24% took less than 5 minutes between the decision to kill themselves and the actual attempt, and 70% took less than 1 hour.  (Miller and Hemenway, 2008)  (Emphasis added.)

I am not a traditional candidate for suicide, I don’t have the risk factors.  But I was, literally, at the end of my rope because of a combination of constantly dealing with a difficult disease, being broke because I was young and just starting out, and suddenly losing my insurance.  I would have had a huge financial burden I would never be able to pay off.  All through the bad luck of bad health.  Simple bad luck.

When I hear the anti-Affordable Care Act folks preaching about how we need to get rid of Obamacare, I want to scream.  Because a flawed system is better than the old system, where pre-existing conditions — the very thing that makes insurance absolutely necessary — will be the very thing that made insurance coverage impossible.

We need this program or we need a better program.  Going back to the old system is already unthinkable.

Is Obamacare perfect?  Nope.  Is there a perfect solution?  Nope.  But it is an improvement.  A huge, huge improvement.  And the problems will be fixed.

Health insurance for many people makes the difference between life and death.  Literally and figuratively.

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Heartbreak

Here.  You may need this.  (Google Image)

Here, take this. You may need it. (Google Image)

It was always the same.  Mom and Dad.  The kids.  They were a unit, Mom-and-Dad.

I’ve written before of my parents and the great love I was privileged to come from.  Here.  And Here.  But I haven’t told you that it all ended up in heartbreak.  My Dad’s.  Poor Dad.

Whenever I think back to our home growing up, Mom and Dad were together.  The end of the day would find them doing dishes together, and then they’d sit at the kitchen table and talk, smoke cigarettes, and laugh.  In the summer, they’d relocate to the front porch, where they’d laugh.   The sound of their voices, their laughter is as much the sound of my childhood as the train running by the house.

After they retired and moved to Florida, Mom started having health problems.  She’d always had some; she’d contracted polio in the late 40s and got emphysema from smoking.  But in the mid-1990s, Mom had a series of strokes.

Still, she never let it dampen her sense of humor.

“My dog,” she said to me during our daily 10 a.m. call, “is no help at all.”

“What do you mean, Mom?”

“Yesterday, I needed C.K. to be Lassie. He wasn’t,” she giggled.

Huh?

C.K. was Mom and Dad’s golden retriever. He was sweet as are all goldens, but had no rescue training that I knew of. So I didn’t get the connection to Lassie.

“Well, yesterday when I fell and was lying on my back on the patio unable to get up, I told C.K. to …”  her own laughter had interrupted her.

“When you were WHAT?”

“Well you see …” Mom went on to laughingly explain that it had been raining in her part of Florida for days. Finally, shortly after we’d talked the day before, the sun came out. And Mom decided to go outside with CK and sit in the sun.

Google Image (Thank God there was nopool)

Google Image (Thank God there was no pool)

“I thought I’d warm my bones a bit. But the gods were agin’ me” she said, laughing harder.

I was not catching on.

“Well, I climbed onto a chaise lounge and lifted my face to the sun. But things didn’t work out the way I planned.” She was now having trouble telling the story, she was laughing so hard. “I nestled back, and wouldn’t you know it, the damn chaise lounge collapsed!”

“What?” I said. “Are you OK? Did you break anything? Are you hurt?” I got that helpless feeling you get when you are hundreds of miles away and can do absolutely nothing.

“I lay there on my back until Dad got home at lunch time. I couldn’t get up. And all the while I was laughing and saying to C.K., ‘Why aren’t you Lassie? Why don’t you go get help? What good are you?’ But all C.K. would do was lick my face. It didn’t help – his breath was awful.”

Dad gave up his morning job that day.  And it began several years of loving caretaking, with admirable assists from my sister Judy and my brother Bob.

“I thought for sure I’d lost her,” Dad confessed to me a few days later. “I got home and she was nowhere to be found. I looked all over the [small] house, expecting to find her on the floor. I DIDN’T expect to find her on the ground outside – she never goes there!”

My Dad was a very imperfect man. He had a temper and a sarcastic streak.  But he had an incredible soft spot for Mom. He fell in love with her in the 1940s and never stopped loving her. They were inseparable.

When I think of their later years, I remember one time in particular, during a family vacation in a beach condo in Florida. During hurricane season. The winds were blowing and we were all watching the wind out on the Gulf of Mexico, out of the plate glass storm doors.

Somehow, Mom had an accident. In her pants. She pooped. In front of her whole family.  Poor Mom was mortified.

It was possibly the one time she didn’t laugh at something awful that had happened to her. Instead, tears welled up in her eyes, and she headed back, head down in humiliation, to the bedroom she shared with Dad.

Nobody else knew what had happened. But Dad sensed that something was terribly wrong, and headed back to see what he could do.

Dad turned on the tap in the bathtub, and helped Mom undress. He got her into the tub. He cleaned her tenderly, and then took her soiled clothes out to the washer and started it up. He grabbed two beers out of the fridge and then went back to Mom. He sat on the toilet keeping her company, washing her back, telling her jokes and stories.  Bringing back her laugh.

The two of them spent the rest of the evening together in their room. The rest of us could hear them laughing all evening.

That’s love.

Fast forward to 1995, and Mom really was failing. After the incident with the chaise lounge, Dad stopped working, or he worked from home. He was fortunate that my sister and brother, Judy and Bob, lived nearby and could and did help. A lot. But Dad was Mom’s caretaker. And he wouldn’t have it any other way.

All five of us visited in 1995, and then again in 1996 for Mom and Dad’s 50th wedding anniversary; we hadn’t expected Mom to make it. But she did. At the celebration, Mom was still somewhat aware of what was going on around her, but not always, and not often. That was October 1996.

Dad, Judy and Bob continued to care for Mom at home. She had more small strokes, but still her sweetness lingered. Still, Dad knew he was, as he said, fighting a loosing battle.  Dad was exhausted, demoralized. He hired some outside help, but even combining resources we couldn’t afford much. But for Dad, it was a labor of love.

My 10 a.m. phone calls continued. Sometimes Mom was receptive, sometimes not. My long-distance job became keeping Dad’s spirits up as much as Mom’s.

One day in early February, though, I heard a shrill voice shouting in the background when Dad answered my call. I had heard a voice like that during my first hospitalization for colitis in 1974 — a woman who was suffering dementia.  The voice that had so terrified me when I was in the hospital at 17. An old woman who’d lost her mind, whose bed was moved into the hall so she didn’t disturb anybody (except she disturbed everybody).  A woman whose voice I still hear in nightmares.

Only this time, that horrible voice was my mother’s.  My sweet mother was possessed by the devil.

You’re trying to kill me so you can have my things. Mother! Help me!

That was my Mom shouting in the background. My sweet Mom. Yelling. Screaming. Terrified.  Lashing out.

You want my stuff. You never loved me.

“Lease, she won’t stop yelling,” Dad said, with a voice filled with hurt. “What have I done?”

I should have listened to my mother. She told me not to marry you. That you only wanted my things.

Dad explained that Mom had started shouting at him in the middle of the night. She hadn’t stopped. She hadn’t rested since about 3 a.m.  Neither had he.

“Lord, I’m tired, Lease,” he said gently, quietly.

“Let me try, Dad,” I said. “I’ll cheer her up.”  I could always make her laugh.  She was an easy audience.

But I didn’t. I couldn’t. She shouted at me, too.

Till Death, they say. That’s what he’s waiting for.   MY Death. Then he’ll have all my stuff.

“But Mom, everything you have is Dad’s too. And what he has is yours. That’s the way it works.”

No. He wants my things. He wants me to die.

 “No, Mom. Dad is right there, helping you. Come on, Mom. Everything is going to be OK.”

But I lied. Of course it wasn’t going to be.

We all tried, Dad most of all, to bring back the real Mom. But she seemed to be gone. Replaced with an abusive Banshee, who was nasty to all of us, but saved her sharpest spears for Dad.

Two days passed. Three. Then a week. Stupidly, we waited for it to pass. The five of us kids did what we could – but Judy and Bob bore the task of really helping Dad. They were there.  Fred and I weren’t.

Ten days passed with no let up. Mom’s doctor told Dad that the only thing for him to do was to put Mom in a nursing home. Dad was determined not to. Adamant. No.

For a dozen days, Dad’s heart was torn out with each word Mom spoke. She was accusing him, always. Of not loving her. Of wanting her things. Of having married her for her stuff.  and worst of all, of wanting her to die.

He knew that it wasn’t Mom speaking. Dementia was shouting at him. Not Mom.  But it didn’t help the hurt.

For two weeks Dad was assaulted, constantly.  The five of us all thought that the time had come. That Dad needed to have Mom go to a nursing home, at least for a short while, or it would kill him.  It was killing him, with each word she stabbed at him.  We suggested it short term, at least to let him catch his breath. He knew we were right, but still.  He couldn’t do it.  In sickness and in health.  Till Death.

Mother! He only wants my things! He wants me to die! Mother!

Mom shouted from her recliner in the Family Room.  From her bed in the night.  From her wheelchair.  From the bathroom.

After two weeks, Dad, exhausted, sat at the dining room table, with his head in his hands, knowing that he had to make a terrible decision. That he had to put Mom, his Doris, the love of his life, into a nursing home.  That she was going to die, and it would kill him, too.

“I held my head in my hands, and looked down at the floor,” Dad said. “I was so tired. So hurt, even though I knew it wasn’t really her yelling at me. Screaming those horrible things. Not stopping – accusing me of wanting her to die.”

You never loved me.

“I couldn’t take it any more, Lease,” he said. “I lifted my head, turned towards her and said ‘Would you please be quiet for a little while and give me some peace?’ Her eyes widened, then her mouth slumped and she stopped. She stopped yelling at me!  The relief was overwhelming,” he said, weeping.

I already knew what had happened. All I wanted was to be with Dad at that point. I was still so far away.

“At first, the peace was just such a relief,” he said, with a mountain of grief in his voice. “But I realized within a minute or two what had happened. Another stroke.”

Mom paralyzed by this, more powerful stroke, was never able to speak again.

Dad was broken-hearted for as long as he lived – because he’d silenced her.  Because he spoke to her harshly, out of patience.  Out of exhaustion.  Out of hurt.  Mom died a month or so after she went to live in a nursing home. Dad stayed by her side, all day, every day. Holding her hand, talking with her, wishing she would speak to him, laugh with him, just one more time.

Judy Holliday’s voice is very similar to my Mom’s.  Listening, I can hear her, clinking dishes and laughing with Dad.

*     *    *

Mom suffered from dementia at the end of her life — that’s what turned her from being a sweet woman into a Banshee.  That is what broke my Dad’s heart.  It is a disease that has broken many hearts and will continue to do so as our population ages.

June is Alzheimer’s & Brain Awareness Month.

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Filed under Adult Traumas, Dad, Family, Good Deed Doers, Health, Health and Medicine, History, Illness, laughter, Love, Mental Health, Mom, Peace

Hey Doc? Do I Need This?

Perhaps I mentioned it a time or two, but I am something of an impulse buyer.  I succumb to all those “buy one, get one free” offers.  The “50% OFF!s,”  and, naturally, every sale.

Huffington Post Picture

Huffington Post Picture.  I just don’t get enough opportunities to use it.

 

The other day, I had to make an appointment for a medical test at a large DC hospital center.  Because I am a patient extraordinaire, I have all my tune ups and oil changes done at a major medical center.  The hospital version of Jiffy Lube.  I like feeling like my surgeons are on the cutting edge, and that my gastroenterologists are qualified to show others just what to put into my orifices.  I do not like amateurs poking about where I can’t see them.

But now?  Modern healthcare is just getting better and better!

Because there are all kinds of deals available.  I can shop for services at my local hospital!  How can you beat that?  You see, the MBAs have taken over healthcare.  So it’s just another consumer good.  Right?

In fact, I learned that I can purchase all kinds of pancreatic treatments!  Really!  Right there at Georgetown!  I can even, if I want, sign up for a pancreatic transplant!

But WAIT!  There’s MORE!

I can get deep brain stimulation!  I’m told while waiting on hold to make my doctor’s appointment, that it can treat (not cure) not just my GI problems, but illnesses, syndromes and conditions I don’t have!  Imagine that!

Yup!  I can treat not just my depression or bipolar symptoms, but my Parkinson’s Disease symptoms, too.  I’m not sure if I have to wait for those to develop first, or if I can just plunge right in and treat em.

Of course, I’m hoping that once my brain has been deeply stimulated,  I will come to understand why the MBAs think that someone with poo problems (and who spends way too much time with doctors and getting other treatments for the condition she is waiting on hold about) might enjoy some additional time in the hospital.  Because we all know just what a hoot those procedures can be.  Not to mention the designer gowns you get to wear.  Ammirite? 

Perhaps I can organize a girls’ retreat with my besties!  Hey girls, this gastric bypass is on me!

I’ve learned that I can have bloodless surgery at Georgetown, too.  I’d hate to make a mess.

The kidney tumors I also don’t have?  You guessed it.  They can be gone in no time.  Still gone.  Or maybe “Gone again” is the accurate description.  How about “Gone with the Wind?” Or is that mixing up body systems?

As soon as the lines open on Monday, I’ll be calling again.

These deals won’t last forever!

 

 

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Do I Hear Five?

On May 29, 2011, I was fifty-four and a half years old.  And I was seriously irritated at the GOP in Congress.  You see, they had announced that they were going to take away Medicare from those then under 55 years old.  And that meant me.  I spouted off about it to anyone who would listen.

They’re gonna take Medicare from ME!  I’m 54-1/2!  That’s where they’re gonna start!

After the first 528 times I mentioned this fact to each and every person I could corner, I still felt unsated.  I wanted to tell more people of my irritation.  Whether or not I knew them.

And so I heard a voice inside my head (something I rarely admit to):

Go forth, it said,  and start a blog.

Oh and give it a stupid name to keep yourself humble.

And so I did.  Both of those things.  FiftyFourAndAHalf was born with this post.

Blogging has been a completely different experience than I expected.

My original plan was to do a political/humor blog.  But in spite of a never-ending source of fodder, I found that I wanted to write about other things, too.  That part didn’t really surprise me.

What surprised me was that blogging, and Word Press, became a place where I met new friends, discussed topics important to me.  Where I laughed and cried along with folks I will probably never meet.

Thanks, everybody.  And while I’ve been writing less than usual and reading less than usual, I love the special place that is the ‘sphere.  So, yeah, thanks for being out there, for reading, and for giving me stuff to read too.

From Daily Kos.com

From Daily Kos.com

 

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My Life — It’s All Wrong — Again (Still?)

Somehow, I got the story of my life wrong.

I’m really not at all sure how it happened.   But apparently I did.  I don’t like to talk about it.  But I can feel you twisting my arm.  UNCLE!!!!

The thing is, I’ve been telling the story of my life for years.  For my whole life, in fact.  It’s fascinating.  Intriguing.  Hilarious.  Well, it is the way I tell it, anyhow.

It’s the stuff of legends.  Because like every good heroine in every good novel, I had a transformation.  A metamorphosis.  A change of life (no, not that kind).   I went from being a pathetic, shy, “please don’t notice me” sort of person into, well, me.  The person I am today.  And you will agree, that I am not shy, retiring or ashamed of breathing air.  But I used to be.  Really.  You can trust me on that. You see, I was there.

Besides, I can pinpoint the transformation.  I know exactly when the moth turned into the butterfly.  It happened on  January 22, 1977.

As it happened, I’d moved to Boston in October, and truth be told I was horribly lonely.  Living away from home was not the wild time I had dreamed of in my yearning to be an adult living in the big city away from my parents.  There I was living in Boston, a city filled to breaking point with people my age, but I didn’t know a soul.   I had no friends.  No one to talk to.  No one to go out with, and I hated going out by myself. I was miserable.

Actually, I was so painfully shy that I avoided talking to anyone I didn’t have to.  I didn’t know how to make friends.  I was afraid that if people knew the real me, they wouldn’t like me.  So I made sure that no one had any opinion of me at all.  I was pretty much invisible.

In fact, that’s how I had always lived my life.  In high school, I had a small group of close friends, and really didn’t ever try to go beyond them.  I was in Players, but there I could pretend to be someone else.  That’s what we were supposed to do.  But mostly, I was still friends with the folks I’d gone to junior high school with.  I didn’t branch out much.  I kept quiet, kept my head down.  Nobody knew me.  I always worried that if people knew what I was really like that they wouldn’t like me.  So I didn’t let anybody in.  Then if they didn’t like me, well, they didn’t know me.

My invisibility was confirmed a year or so after my transformation when I was parking my car at my hometown’s train station.  My boyfriend Erik was with me, when Kevin, the heart-throb of Players pulled up next to me.  I’d had a huge crush on Kevin all through school.  He played the lead in all the plays, could sing and dance and was incredibly handsome and talented.   In spite of that Kevin was always nice to me – in fact, he was one of the first people to seriously encourage me to sing.

(Google Image)

(Google Image)

I got out of the car, walked over to him and said:

“Hi Kevin, it’s Elyse.  How are you?”

“Ummm,” said Kevin, clearly not recognizing me.

“We went to high school together,” I reminded him.  I mentioned the plays we’d done together.  Erik stood next to me.

“Sorry,” he said.  “I don’t remember you.”  And he walked away.

Naturally, I was mortified.  It was proof positive, in front of a witness, that I had been invisible.  That nobody had noticed me.  That this guy who had really actually given me my first smidge of confidence on the stage didn’t remember me.  (And we won’t even get into the fact that he could have just said, ‘oh, yeah, how are you doing, it’s been a while.’)

Now, back to my transformation.

Being shy was fine as long as I was at home – my few friends were still nearby.  But when I moved?  I didn’t know a soul.  Worse, I didn’t know how to make friends.  And I had no idea how to learn a skill that I believed you either have or don’t have.  I didn’t have it.

In January 1977 I found myself in the hospital.  Sick, miserable, far from home and family.   My boss, on his way to visit a sick colleague, stopped in to say hello.  He was embarrassed as I was sitting in my hospital bed (appropriately) in my nightgown.  He didn’t stay long.    Nancy, my office mate, came too.  But she was older, married with kids.  She too could only stay a minute.   My parents came up over the weekend.   Otherwise, my only contact was with doctors and nurses.  People who got paid to talk to me.

Cambridge Hospital

(Google Image)

It was pathetic.  I was pathetic.  I had no friends.  Nobody cared.  I cried myself to sleep for the first two nights I was there.

On the 22nd, a light bulb went off.

Maybe if I talked to other people, if I took my nose out of my book, well then maybe, maybe I could make a friend or two.

And really at that moment I decided that being shy was stupid.  All it got me was loneliness.  And being lonely for life, well, that didn’t sound at all appealing.

So I forced myself to be not shy.  I made myself talk to people I didn’t know.  To let them get to know me and decide, based on knowing what I was really like, whether they liked me or didn’t.

But talking to strangers is really hard.  So I developed a fool-proof strategy.  Whenever I was with someone I didn’t know, I’d say to them:

“Don’t you hate trying to figure out what to say to people you don’t know?”

As it turns out, everybody hates trying to figure out what to say to people they don’t know.  And they all have something to say about just how hard it is!

I’d stumbled onto success.  And then I went further.  I was nice to people.  I made them laugh.  I asked them about their lives.  Let them tell me their stories.  Let them help me develop my own.

I was a different person.  A completely different person.

I even have a witness to this transformation.  You see, I was in a play that winter/spring.  Rehearsals started in January, just before I went into the hospital.  And at the first couple of rehearsals, I sat next to Howard.  Howard kept chatting me up, being friendly to me.  I had my nose in a book, grunted my answers and really was too shy to be more than polite.

OK, so I was a bitch to Howard.  He remembers.  He would testify to the existence of the shy Elyse.  After my metamorphosis, Howard became one of my closest friends.

It’s a great story isn’t it?

But, you ask, how did you get it wrong, Elyse?  You know I’m going to tell you.

You see, about 3 years ago, I went to a reunion of my high school acting group, the Players.  It was the 50th anniversary of the start of the group, which is well-known in Southern Connecticut.  There was to be a tour of the completely renovated school building, a review show starring Players from all the different eras who still lived in the area, a dinner and many, many drinks.

My old, close friend and fellow Player Sue and I decided to meet and share a hotel room.  I picked her up at the train station, and we drove through our memories together.  It was great – we caught up, laughed, acted like 16 year olds who were allowed to drink.  We had a blast.

At some point, I mentioned to her how shy I was in high school.

Shy kid

“You weren’t shy in high school.”

“Yes I was.  I was horribly shy.  Afraid of everyone.”

“No, you weren’t.”

“Well, you were one of my best friends,” I responded.  “Of course I wasn’t shy with you.”

Sue looked at me skeptically and the conversation went on to more interesting topics.

The next day, the day of the reunion, we linked up with other friends from our era.  Of course my close friends remembered me.  But so did people I didn’t remember.  In fact, most people from those days remembered me.  I was shocked.  How could people remember  invisible me?

I mentioned my surprise to Karen.  Now Karen was someone I looked up to.  She was (is) smart.  Funny.  Talented.  She’s someone I would have liked to have been close to in high school, but, really, I was way too shy.  And she was really cool.

“I would have had a lot more fun in high school if I hadn’t been so shy,” I said to Karen.

“Elyse, what are you talking about?” Karen said, her eyebrows furrowed and her entire body leaning towards me across the table.   “You were exactly like you are now back in high school.  Talkative.  Funny.  Vivacious.  You weren’t shy in the least.

Vivacious?  Me?

According to everybody there, which constituted most of my high school universe, the story I’d told for decades is wrong.  I was not shy.  I did not transform.  I am probably not even a damn butterfly.

I am so confused.  How do you get the story of your own life wrong?

*     *     *

I decided to re-post this piece from last year after a fun discussion about introverts and extroverts over at Gibber Jabber.

So what are you, an introvert, an extrovert, or as brilliantly suggested by Glazed suggested in yesterday’s comments, an ambivert?

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A Is For Algorithm

You will be surprised to learn that I didn’t plan on posting about this.

I figured that anybody who has ever read my blog knows precisely where I stand on this issue.  So I left it in that barren wasteland where all unused posts go — DRAFTS.

But then tonight I read a blog post that broke my heart.

Most of you know my bloggin’ buddy, TwinDaddy of Finding Twindaddy.  He has a new job doing tech-ie stuff at a school, and he wrote about ALICE at his school in a post called “A Sad State of Affairs.”

Alice?  Who’s ALICE?

Alice is an acronym that stands for:  Alert, Lockdown, Inform, Counter, Evacuate.  The drills that students, teachers and administrators of our American — Praise the Lord and Pass the Ammunition — schools must perform periodically so that everybody is ready in the event that an active shooter comes to their school.

High School Students, Teachers and Administrators

Junior High School Students, Teachers and Administrators

Elementary School Students, Teachers and Administrators

Somehow, I don’t think this has gone down to the nursery school level.  Give it time.

Anyway, deleted what I had drafted because it was lame.  But after reading Twin Daddy’s post, I thought I’d show you the algorithm that one school in Michigan came up with.  It’s quite creative.

Because, you see,  not only do they (and folks in other states) have to worry about some nutcase coming through the door blasting, but they have to worry about other nutcases.  Yup, folks in many states need to figure out how to deal with potential crisis situations because of the folks who have been dubbed “ammosexuals.”   Ammosexuals are those particular nutcases who believe that their right to openly carry any fucking gun they please, and to waive it around, proclaiming their god-given/NRAsponsored right to bear arms, trumps your kids’ rights to, well, you know, breathe.

Because, of course, in states where it is legal to “open carry” guns, how can you tell the “good guys” from the “bad guys.”  So they had to come up with a decision tree:

Credit:  Americans for Responsible Solutions

Credit: Americans for Responsible Solutions

(Click to Enlarge)

Of course, by the time any school administrator could figure out that, well, that’s a bad guy, they’re probably dead.  Not a whole lot of help, then, is it?  Oh well, what’s a few more gun deaths in America?  It’s what we’re becoming famous for worldwide.  Once folks thought our streets were paved with gold — now they are paved with blood and bullet casings.

*      *     *

We really need to figure out, as a society, how to get a handle back on our brains, so that we can protect, at a minimum, our kids.

From my friend Father Kane at the Last of the Millenniums:  https://thelastofthemillenniums.wordpress.com/category/gun-control/

From my friend Father Kane at the Last of the Millenniums: https://thelastofthemillenniums.wordpress.com/category/gun-control/

 

ELECTIONS MATTER

Oh and as an aside, I passed through Newtown a few months ago.  I saw a pickup truck with this bumper sticker:

Assholes (Not Google Images who gave me this image)

Assholes (Not Google Images who gave me this image)

This is the ammosexuals’ response to the message that sane people in Sandy Hook put forth after the massacre:

Thanks, Google

Thanks, Google

 

And it made me realize just how important gun control laws are.  Because I wanted to shoot the asshole driving that truck.

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A Nose for Gold

Have you got a Nose for Gold?

Growing up at the beach, I never had much use for those little dweebes who would pan for gold in Long Island Sound. All they ever got was a plastic container of cigarette butts.

Well, it is Connecticut's "Gold Coast" but that's not quite what they mean.  (Google Image)

Well, it is Connecticut’s “Gold Coast” but that’s not quite what they mean. (Google Image)

And on my one trip to California when I visited a ghost gold town, well, I was still not all that impressed. But at least they got them some gold. Some of them.

I can't even remember if this is the gold miner statue I saw.  (Google image)

I can’t even remember if this is the gold miner statue I saw. (Google image)

But more recently, I’m thinking that maybe I’ll try my, ummm, hand, at gold mining.

Yeah — me!

In fact, it might just be an opportunity for me to work from home.  I may actually be sitting on a gold mine. Really! Who knew!

More than for personal gain, however, I will do it in the name of science.  You see, scientist now think that this type of mining may just save the planet!  It could reduce the need for more environmentally harmful types of mining.

Oh, I guess I forgot to explain the rest.  You see, I just read that scientists are, ummm, mining for gold in unexpected places. Silver, too. And you know, they’ve found some platinum, too.  A veritable jewelry store of precious metals.

Wanna know where?

In poop.  People Poop.

Really! They’re finding all sorts of shit in there! I just read about it in an article entitled:

Scientists Want to Mine Our Poop for Gold

According to the article:

Every year, Americans are flushing a fortune down the toilet. Literally. More than 7 million tons of biosolids—treated sewage sludge—pass through US wastewater facilities annually. Contained within our shit are surprisingly large quantities of silver, gold, and platinum.

I am prodigious poop producer.   I figure, well, I’m golden.

Google Image

Google Image

I’m hiring pan sterilizers if anybody is looking for a job.

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