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.

Remember that when you hear the GOP poo-pooing the Affordable Healthcare Act, Obamacare.  Remember that they don’t really care about the folks who, like me, are/were at the end of their ropes.

126 Comments

Filed under Crohn's Disease, Elections, Goliath Stories, Health and Medicine, History, Humor, Hypocrisy, Law, Mental Health, Pets, Stupidity, Taking Care of Each Other, Voting, Wild Beasts

126 responses to “The End of My Rope

  1. Pingback: When your life is going to the dogs | FiftyFourandAHalf

  2. Pingback: A Suicide Disclaimer – Chasing Unicorns

  3. Your amazing dog knew and saved your life. I’m glad he did. 🙂

    Liked by 1 person

  4. whew! dogs are saviors! great, important post.

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  6. Wow, I don’t know how I missed this post before, Elyse. This is Freshly Pressed material for sure, in my book. But no matter. Goliath obviously knew you were up to something you shouldn’t be, bless his furry little heart. Not having health insurance, or not having coverage for particular thing because it’s considered a preexisting condition, is terrifying. I don’t know what I would have done if I had been in your situation, learning that my company was switching insurance carriers and that my surgery wouldn’t be permitted.

    And yeah, the GOP really doesn’t care who’s at the end of their rope. Obamacare isn’t going to be the magical solution to everything, obviously, but for those who have no insurance, or who can’t be covered because of certain medical conditions, it’s going to be a lifesaver, literally and figuratively. Thank you so so much for sharing this stark, chilling, yet light-hearted example, Elyse.

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    • You’re forgiven for missing it — we all write so much that in order to have a life outside of blogging it is impossible to read everything everyone writes!

      Goliath was incredible, actually. He was very much like an out of control, furry person — he was so smart. And he was so crazy that I was frequently kept from feeling sorry for myself because I was trying to get him to cooperate. He rarely did, but he had such a good time misbehaving …

      I hadn’t planned on posting this piece. But that day I had heard so much news about how awful Obamacare is, how the GOP needed to repeal it (and replace it with air), etc. etc. etc. Insurance makes the difference between life and death in so very many ways.

      Thanks for your kind words, Weebs!

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  8. i ❤ Goliath. There when you needed him. What a terrible burden to place on someone so young – and to come to a place where there seemed no way out. I'm not crazy about the changes in my coverage under Obama care, but something had to be done. I have had family members who have had profoundly positive experiences because of the ACA. The bugs will get worked out.

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    • He was a total maniac, but he loved me and I loved him. I truly would not have survived that very difficult time — and I don’t mean just that one particular night. He helped me keep my sanity because he was totally nuts.

      As for the ACA, yeah, my plan went up a bit — although when I looked on the exchanges I can get coverage for significantly less — only I had to sign up for my old plan by the end of October … Next year. And they will fix the bugs. But as you said, they had to do something. And this is a start.

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  9. Davis U. Salazar

    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.

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  11. i was just browsing along and came upon your blog. just wantd to say great internet site and this post truly helped me.

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  12. That was a heck of a read. Well said. I hope Mr. Obama gets some credit for what he is doing, however difficult the initiation and however tepid the response thus far.

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    • Thanks, Trent. I hope so too. The rollout has been awful, but so many state governors prefer to ignore the needs of their folks rather than see one of O’s policies succeed. This issue really makes me so deeply angry at the sheer venality of folks who are willing to risk — literally — the lives and the future of people for their ideology. I do not get folks like that.

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      • Your politics down there seem so serious… ours are comedic by comparison. I hope people don’t lose sight of what’s right, in the face of what’s possibly right for them.

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  13. If ever there was an argument for working toward keeping and improving the Affordable Health Care Act, you just made it. Bravely and beautifully done, Elyse!

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  14. Really well written, Elyse!

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  15. 1. I felt desperate, too, when my first marriage of two and a half years, fell apart, and ended in divorce (…and I was the first in my family to do so!) Yikes…I remember that awful feeling of failure! If I wasn’t a Christian who believed God would kill me if I ever killed myself…well, you know…plus I didn’t think of the tether-ball angle!!
    2. I remember the desperation I felt when I was going through infertility treatments after ten years of marriage to have my son and my insurance company told me they didn’t pay for injectables! The Pergonal was probably $2000/month…I freaked out! Thank God, a dear friend was going through the same treatments and had just gotten pregnant…she gave me $800 worth of vials of Pergonal…and finally, my insurance company called back to tell me they made a mistake, injectables were allowed, if it was for infertility!
    3. My gift from God was a preemie…a huge hospital cost for his 9 week stay in the neonatal unit…and then needed surgery within his first year for a patent ductus heart murmur…so without insurance, we would have lost our house to pay for his $32,000 surgery bill!
    4. Keep talking to keep more people from getting to the end of their rope!!
    God Bless!!

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    • Thanks for your comment, Sage.
      This cracked me up: “believed God would kill me if I ever killed myself” — God has been known to do some odd things … but …
      I certainly understand your despair and frustration with the current system. I have actually been incredibly lucky with insurance, mostly because my parents made me go to secretarial school. But it is insane — and it cuts off so many people from their dreams, from their ability to really move the economy forward. How many people don’t start businesses? How many people give up …
      Oops, I’m getting back on my soap box.
      Thanks for reading and for commenting, Sage.

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      • Yup, finally I learned about the God of Grace and Love! Instead of the one that my Mom taught us was always going to punish us!! Amen!!!

        Retired teacher here, with benefits…sometimes we had to fight the rookie teachers who wanted more money up front with less benefits…Nope!!!

        My sister in NYC will benefit from being able to get affordable insurance now!

        Aww, go ahead…get back on your soap box…I don’t mind people doing that, who actually know what they’re talking about!! Preach on, sister!!

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  16. Liking the final edition!
    And it makes me happy that in times of illness me and my family have always had the NHS to rely on. I just hope Cameron and his Eton buddies don’t destroy it completely before they get kicked out of office.

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    • Wait just a minute, Greg, aren’t you in China? That would be quite an NHS network! But I know what you mean. Our system here in the US is nuts and has been for decades — always really.

      Thanks for your help at Diamonds or Dust. Your comments were invaluable. I’m going to do a post on that shortly, actually. Because it really is so beneficial to have specific comments from folks like you who know what they’re talking about!

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  17. So much to say about this one, and I’m sure I’ll end up missing something, no matter how many words I splatter across the page. First of all, the writing was superb. Excellent. Such a powerful mix of humor and tragedy and truth. Secondly, (shouldn’t this one have been first??), I’m so glad you were unable to complete your suicide-by-tetherball mission that day. And that Goliath, your gentle giant and guardian angel, was there to distract and harass and generally insist that you pay attention to him. Our pet companions are so much more than what you see on the end of the leash. It still kind of hurts my heart that he isn’t with you anymore, and this story made me love him even more, if that is possible.

    Also, what you say about health insurance is so (loss for words) … appropriate, and true, and horrifically honest. When I left my corporate job several years ago, I ended up losing my health insurance. Then, just after my Cobra ran out, (which was so expensive that most people can’t even afford to keep it), I ended up being diagnosed with ovarian cancer. I was on the brink of purchasing a home, having saved over $60,000 for the down payment, all of which ended up going towards medical bills. Even all of my hard-earned savings wasn’t enough, and it ended up pushing me into bankruptcy. No house, no savings, and a huge medical debt. Learning how to live with the shame of bankruptcy, from someone who had worked hard at being fiscally responsible. It was heart-breaking.

    Your story is a perfect example of how desperation can turn to thoughts of suicide, and how thoughts of suicide can turn to taking action. I’m so grateful that Goliath, and the faulty (or intentional) design of the tetherball allowed enough space for you to live to see another day. I can’t imagine a blog world without your voice in it. How dull and boring that would be.

    Although there is a ton more I could add, I have to come back and visit one more point, at least, before I take my leave (and I mean that in the sense of leaving the keyboard, and not in the tetherball-suicide kind of way). It is absolutely genius how you were able to weave humor through the telling of this tale. Some people might stand back in shock, their senses assaulted by the juxtaposition of humor and suicide in the same space, but me? I’m shaking my pom-poms and jumping up and down with glee. Masterfully done, Elyse. I’ve already read through it twice, and will surely come back again. Both to just absorb it fully, and to marvel at the beauty of craft.

    Thanks for sharing this story. The ones like this can take a lot out of us, and make us feel vulnerable and exposed. I will never look at another tetherball the same way (and I’ll cross that one off my list as an available option). You rock. You are a total rock star. This was beautiful.

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    • Wow, 99. Thank you for your kind words. I’m glad I’m here too. Goliath was a wonderful guardian angel but I will admit that he was rarely gentle. He was always whacking me around or dragging me somewhere, or taunting some poor guy who just happened to walk by when the Goose wanted to show his testosterone level was, umm, high. I truly wouldn’t have gotten through my illness without his constant distraction.

      I’m so glad you got the humor in this piece. I can’t tell if it comes across because I truly look back at this and laugh. What a stupid idea — the method, the location, the works. Totally stupid. Which, as it turned out, was a good thing. And even more mysteriously, the next night when Goliath (and Keily, I think) went back for a walk, the tetherball set was gone. I never saw it again.

      I’m sorry as well that you had to go through what you went through. What kind of a society that can afford the best treatment for its people turns its back on the most vulnerable? What have we become? It makes me so angry for you. The loss of what you’d worked for. It makes me so angry for all of us.

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  18. This was beautifully written.

    Makes me grateful for our NHS..and then my mind wanders and I imagine what my cat would have done in Goliath’s position. Dogs 1 Cats 0 this time. 🙂

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    • Thanks, Joe. Yes, the NHS would be nice, back then or now. It is crazy that such a rich nation as ours can turn its back on folks. Penny wise and pound foolish.

      As for what your cat might have done in this situation, you’d be toast, I’m afraid Joe. Although I was once told (when I first lived on my own) to get a cat. Because then, I was also told, if anybody broke into my apartment, I could throw the cat at them and run. So naturally I got a cat. But he ran away. A cat was clearly not meant to be my protector.

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  19. Kay

    I have been fortunate to be able to follow your blog, love your strength, courage and ability to convey your experiences so eloquently. Just a few reasons why i hold you in such esteem.

    .

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  20. I wish more people could hear this kind of story and see the effect that not having insurance coverage has on people– I know that my own story of refusing to go to a hospital when I was bleeding out is not nearly as dramatic as this but on a tiny scale I felt that same sort of “I can’t afford to pay for this without insurance!” kind of desperation. It is just maddening and though I’m woefully uninformed when it comes to politics, I just don’t understand why some sides are so keen on denying it to other people.

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    • While I don’t know the details of your story, it is important. All our stories are important, especially where social policy is concerned. Nobody but nobody should make possible life-and-death decisions based on their ability to pay for it. Not in the richest country in the world.

      It is often injustice that leads us to greater political awareness. So you are already there!

      Like

      • Unfortunately, I’ve already crossed into that territory where I’ve just given up on the system. I just can’t take the stupidity, and politics. I haven’t had health care for almost five years, and even though in January, I will finally have Medicare coverage, (because I’m permanently disabled), I still won’t be able to afford to use it. In my world, the only thing that changed is that my monthly disability deposits were reduced by the cost of Medicare coverage. I know have a parachute for catastrophic illness, which I suppose is an improvement, but the truth is, nothing else changed. I couldn’t afford to see a doctor before, and now I have even less income every month, and still can’t afford to see a doctor. All those follow-ups with my oncologist? Never happened. Medical tests that are supposed to be essential. Not going to happen. I’ve given up on the system. Truly.

        Don’t even get me started on why there is a two-year waiting period between the time someone becomes permanently disabled and when they are eligible for medical coverage. Obviously, they hope you just die in the ensuing two years, and they never have to bother. My sister and I laugh about it, but nothing about it is funny. Sorry to vent. I better leave the subject before my knickers get too twisted. It just aggravates me to the ends of the earth that I worked hard and paid into the system for all those years, and yet, here I am, unable to afford a doctor’s visit. Arhghghgh.

        Like

        • I just don’t even know what to say, 99, which is so very unusual. It’s just not supposed to work this way.

          So very sorry, 99. Wish I could offer more than words.

          Like

          • My story is one of the happy ending stories … there are tons of stories out there that end up much worse. At least in my case, I’ve managed to eventually end up buying a home (smaller, not my preferred neighborhood, but still a roof and walls). I know I have more to be thankful for than many. The people that end up in shelters, or living in their cars, or on the streets.

            Last year, my emergency surgery could have been totally avoided if I had had regular medical care. But this is the new reality. Unless I want to move to Canada, this is what I have to accept. I keep hoping and praying (and voting), but for now, this is where we’re at. It can be pretty demoralizing, but I’m just trying to find the things I can be appreciative about, and forget the rest. Otherwise, I’d be playing tetherball.

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            • Tetherball is no solution. It simply led to more questions … like what to call the damn thing.

              Sending you hugs.

              Like

              • It kind of blows my mind that the tetherball disappeared the next day. If that isn’t a loud message being projected across your reality, I don’t know what else to call it.

                These days, I give less and less room for thoughts of tetherball. I grew weary of the game. Hugs back to you.

                Like

  21. I cannot imagine not having some form of health coverage. It scares me. I know people struggle with it every day. Thank you for handling it so beautifully. And I’m so glad you made it to Monday.

    Like

    • When you can pay for it, American healthcare is the best. Wonderful doctors, treatments, the best hospitals. But when you can’t and you need it, Lord help you. It is so stupid.

      Yes, Mondays are good! Especially after a Friday that was that bad!

      Like

  22. pinklightsabre

    What an amazing story: thanks for sharing Elyse. Remarkable.

    Like

  23. Amazing story, Elyse. I kind of feel like Deb, “there’s a billion things I could say about this” and it’s important you wrote it. Interesting you drafted this for some two years. It feels like you wrote it in one sitting.

    Like

    • Thanks, Georgette.

      It’s been a technically hard piece to write, as I said in my comment above. I still don’t think it is quite what I want — because to me it is both a story of desperation and a very funny episode. I don’t think that I hit the balance as well as I’d like. But I am just getting so fed up by all these efforts to undermine, repeal, etc. the only thing that can keep folks with health problems from despair.

      This is part of the (sadly stalled) memoir about Goliath I’ve been working on for quite a while.

      Like

  24. This is when I wish animals could talk. I can only imagine the F-boms Goliath was dropping when he was beating you down with that stick..lol! Just another reason for you to get another dog…they save lives!
    As for the ACA you are so right. People are so focused on the negative, they don’t realize how important these changes are to the bigger picture of healthcare…until it effects them that is.

    Like

    • I DO need another dog. While I don’t look forward to a puppy (they are soooo much cuter when someone else is doing all the work), I do need a dog. But John needs to get there, too. Since this time, he’s doing all the work!

      I actually don’t think that the public would stand for repeal, to go back to nothing. I think that people are starting to feel the very real burden being lifted, if only somewhat. I’m hoping, anyway.

      Like

      • I do hope you end up with another dog in your life. There can never be another Goliath, but that doesn’t mean you shouldn’t get to enjoy a new happy little soul that will make you crazy and force those smiles out.

        Like

        • Oh, I will. We lost Cooper in August and had a crazy fall expected. I don’t think I can hold out for too much longer. My husband, who works from home and who will have a large portion of the early training, wants to wait a bit longer. But dogs are like oxygen for me. Gotta have one.

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  25. Oh my goodness. What a truly amazing story — and we already know how amazing Goliath was.

    This is a story full of things to discuss: the wonder of animals, the brilliance of dogs, the despair of being on the edge, the horror that our healthcare system is been (I swear if I hear one more GOPer talk about “The Greatest Healthcare System In The World, meaning the old system, I am going to break something!)

    Let’s hope that as we slowly inch our way into a new system of healthcare, that more and more people can be covered, and that no one is ever driven to despair or bankruptcy because of healthcare.

    Like

    • I’m certainly joining you in the hope that we as a nation can take care of each other, and that the financial part doesn’t continue to add to the general devastation one often feels when dealing with chronic illness.

      As I mentioned to Michelle above, I was working at the World Health Organization in Geneva when they issued their ranking of healthcare by nation. We were 38th. Disgraceful. I was shocked until someone mentioned that it wasn’t that our doctors and hospitals and treatments were substandard, but that we don’t cover everybody. “Oh, yeah. They’re right.” Stupid us.

      I have to say, John, that while I think dogs are incredibly smart, Goliath was the brightest in the bunch. He always knew. Always. (That was particularly annoying if I tried to get out of walking him because I was feeling lazy. He could tell the difference between laziness and illness. If I was sick the back yard was fine for his business. If I wanted to just hang around and not walk him, or if the weather was bad, it was “too bad Mom. We’re going” )

      Like

  26. I’m going to have to come back to this, when I am more in a position to leave a proper comment. Can’t wait to go back and read through it again.

    Like

  27. Brian

    Stunning…Shared to FB if you dont mind…we need to talk more…

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  28. Wow– what a story! So glad Goliath intervened. Animals just KNOW, don’t they? I’m saying yet another small prayer of thanks that I live in Canada. I once had to be flown to Minneapolis for an urgent treatment that wasn’t available in Winnipeg. My health department had some notion that they would only cover part of the cost, and one day I got a bill in the mail for $10,000! I freaked, but fortunately was able to go back to the ER doctor and get documentation validating that the only alternative to sending me across the border would have been sending me to the morgue. The health department paid the bill. It certainly made me appreciate how terrifying it would be to have to weigh critical medical decisions against my ability to pay, especially since I have chronic heath issues.

    Like

    • Thanks, Muddy. Yes, you Canadians have every right to feel superior to use dopes south of the border. Why is it such a difficult thing to accept — that in a rich country like ours, we should be taking care of each other. So stupid.

      And we should use your story — of the $10,000 bill — as an example. Single payer!!!!

      Lastly, sorry you’re in the chronic illness club with me. It’s one club I’m sure you, like me, would rather not be in!

      Like

  29. I am glad you are still here. I had a plan and it failed. That is a very interesting statistic. Bless Goliath, at the time. hugs.

    Like

    • Thanks, Jaded. Me too. I’m not sure that death by tether-ball would make it up there to an actual “plan” — it was more of a momentary illusion, I think.

      And yeah, I’d love to be able to hug that huge maniac once more. Maybe a thousand times more.

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  30. I had to come back to this cause I wasn’t sure what to say. I’m still not, really. I mean, I’m obviously glad you’re still here. I’m glad things turned out the way they did with your surgery. I’m honestly astonished to read that you actually considered this. I would never have guessed. I had no idea your illness had that much of an impact on your life.

    Thank goodness for your dog. Dogs are great friends. (hugs) Elyse.

    Like

    • I’m glad I’m still here, too, TD.

      Illness can take over your life. It did mine at various points in time. The early 80s was one of them. You do go about life as normally as possible, but it is so very easy to get overwhelmed. I certainly did. Often. I really did feel like that duck in the poster. Life was forever shooting shit at me, as if I had a fucking target pasted on me. But the worst parts of it were 30 years ago. What I’m dealing with now is different, easier, mostly.

      But there are many kinds of chronic illness — mental and physical. We as a society don’t talk about most of them.

      My dark thoughts were short-lived — tucked within an hour or so. But if you look at the NEJM quote, that doesn’t equal safety. This experience is one of the reasons I’m so anti-gun. And one of the reasons I am so vocal about it. Would I have pulled a trigger? I don’t know. Death by tether-ball is pretty silly, pretty funny, and that is how I look back on it. I mean, really? Tether-ball? But that was what was there when I reached rock bottom. I shudder to think of if I’d found a gun on the Capitol grounds.

      And Goliath was amazing. He could pull me out of the deepest despair. and he often did. I swear, my rescue dog rescued me much more than I did him.

      Like

      • Well, I won’t turn this into a gun debate, but I do understand why you feel the way you do.

        As for Goliath, dogs have a way of comforting us. They are awesome companions and faithful friends.

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  31. What a story! Glad your dog pulled you back. And what you say about the ACA strikes a nerve with me, too. The anti-Obamacare people would scrap it entirely and replace it with nothing. They have no ideas of their own except destruction of the only national health-care legislation for all that has ever been enacted. Having a law that needs improvement is better than going backwards, isn’t it?

    Like

    • Hi Dylan, welcome.
      I’m glad Goliath did what he did, too. Although I think the drama, as opposed to the absurdity, of the story comes out more than I’d like. As I’ve said to other blogging buddies, I actually find it a funny story. I guess in my heart of hearts I knew that I would never really go through with it, although the desperation I felt was real, that’s for sure.

      I just honestly don’t get the folks who are against people having insurance. Do they want people lining the streets with TB? Wasting away in gutters because they have lost their homes and their livelihoods due to an illness? These are the same people who claim to be such good Christians? Have they even read the New Testament?

      Oops. I’m ranting again. My bad.

      Thanks for visiting. I quickly looked over at your blog (http://treatmentofvisions.com/) and it looks cool. How DO you manage to organize yourself so well. I just stick up whatever …

      Happy Thanksgiving!

      Like

      • Your story was funny ‘cos I had to assume it turned out okay since you were writing it! But it rang dark and true as well. Very nicely done! Thanks for the good words about my blog. I still feel like a noob and it’s definitely a work in progress. I fool around with the widgets and things every few days to try something else out. It’s not quite where I want it yet. See you later.

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  32. I love that dog and I love his name!

    I know I shouldn’t have laughed but death by tether ball is probably the worst idea I’ve ever heard of. I’m not sure if you lack imagination or have too much when it comes to suicide. Either way, I’m so happy you failed. Having a chronic problem myself, I understand the mindset you were in. Still, it’s always good to think through all of the options.

    Have a great Thanksgiving and I’m hoping you have a moment of silence in honor of Goliath!

    Like

    • I’M SO HAPPY THAT YOU LAUGHED! The story frankly cracks me up. Because it is possibly the stupidest method I could have come up with. And I can’t tell if the absurdity of it comes across in the piece or if it doesn’t come across. Suicide is a bit of an edgy topic, one to which folks don’t quite know how to respond. (So far everybody has claimed they’re glad he saved me …)

      I hope you have a good Thanksgiving too, and that your mind is free of bizarre impulses now and for always. Well, at least dangerous bizarre impulses. The other kind are, in fact, welcome.

      And yes, I will always be thankful for Goliath, my psychotic hero. He was wonderful.

      Like

  33. Everyone who loves your posts will be thankful for Goliath on Thursday, Was that the hardest post you ever wrote?

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    • Thanks, Kathleen.

      Your comment made me think. In one way, it was a very difficult piece to write. But not the way you would expect. Emotionally it wasn’t hard at all. Not really. But technically, it’s been really hard. I’ve been working on it off and on, for nearly two years. It will be part of a (stalled) memoir I am writing about my psycho dog. I hadn’t planned to post it but got so fed up with the folks who want to keep people from having insurance, that I went ahead and posted it.

      But it has been hard to get the right balance. You see, I look back on this and, mostly, laugh. I mean, really. Tether-ball? I don’t think the piece is there yet, because either readers didn’t notice the humor or it wasn’t as apparent as I wanted it to be. I don’t think I was ever truly in danger — and that really is because of Goliath. I’m positive he knew exactly what he was doing. Saving me from myself.

      The hardest piece for me to write was this one: https://fiftyfourandahalf.com/2011/12/02/both-sides-now/

      Thanks for your comment. I really have been thinking about what to say for over an hour.

      Happy Thanksgiving!

      Like

  34. Moe

    Goliath earned his place at the ‘right hand of’ Elvis. Good doggie.

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  35. First of all, cheers to Golith because without him, this post may not be here.

    Good points about the importance of helping those with pre-existing conditions. Yes … the AFA is fixable (and I’m not talking about the website) … and yes, even if so, it won’t be perfect.

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    • I’m pretty sure that suicide by tether-ball wouldn’t have worked. I do wonder, however, if presented with another, easier method, if I might have gone through with it. But Goliath really did save me that night and from future urges when things got their bleakest. He was completely nuts. Completely out of control. And it is very true that nobody would have taken him.

      The ACA is fixable. Of course, it is hard to fix things when half the country’s leaders are rooting for it to fail. Stupid republicans.

      Like

  36. cortney

    Powerful post, Elyse. Thank you for sharing this. And as so many others have said, thank Goliath too! Dogs save us in so many ways.

    Like

    • Dogs are so very important. I can’t tell you how much I miss having that love. John wants to wait a while longer before getting another one. He is still grieving for Cooper.

      But Goliath was something special. He really saved both my life and my sanity.

      Like

  37. I cannot thank you enough for writing this Elyse. I was nearly in tears reading it, actually I was in tears but I didn’t want to admit it. I just get so furious when I read the foolishness about the ACA and repealing, now the idiot from the great state of Louisianna has the latest GOP offering, 200 pages of Repeal and Replace with nothing more than:

    Tax credits for those who don’t need it
    Tort reform for those who don’t need it
    Protections for the Insurance Companies
    Throwing you and I and those like us back into state run High Risk Pools
    Assurance that women cannot use their own money for Abortion

    Yep, that is about it. Maybe allowing selling across state lines.

    I am so thankful Goliath beat you with a stick!

    Like

    • I do hope that Vitter introduces it while wearing a diaper — it would be so fitting.

      Tax Credits. Yup. That would have helped. I was making $18K at the time in one of the most expensive cities in the country. A tax credit would have given me about $200, max (OK, I’m making that up, but I didn’t pay a whole lot of tax so a credit on whatever I did pay wouldn’t have helped defray $100K worth of medical expenses a whole lot).

      Goliath beat me with sticks constantly. It was his favorite game. And I always lost. My doctor thought I was in an abusive relationship; I had to explain to him that, yes, I was, sort of, but it was with my dog. He just shook his head.

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  38. Elyse,
    I am fortunate, as a Canadian I was able to have everything I needed done without these worries when I had my cancer. I have often wondered how Americans who are not wealthy and have no coverage deal with their serious illness. All the protests I hear in the news about Obamacare seemed bizarre. It seems the people that it will help are not being heard as loudly as those protesters. You are very brave for sharing this and I hope some will start to listen to your story and those of your commentors.
    I am grateful you are here to do this (and all the other stuff you do).
    M

    Like

    • Thanks, Michelle,
      It is possibly one of the stupidest things in American society, our health care system. I was actually in Geneva working at the World Health Organization in 2000, when they last ranked the world’s health care systems. I was stunned to learn that the US was 38th, behind Dominica and Costa Rica. How can that be, I asked. “Because you guys don’t cover everybody.” Oh, yeah. (I just looked and Canada didn’t fare much better, though — #30).

      Like

  39. What an incredible story, one which I’m relieved had a happy ending, or as happy an ending as one can have while still battling the cruel Crohn’s. So glad you didn’t follow through. Almost too horrific to imagine, as I’m sure your family and friends would agree. Thank you for sharing your personal story of why health insurance for everyone should be a right, not a privilege.

    Like

    • Thanks Carrie. I actually had a very long remission after my surgery — 22 years! And with my insurance-covered drugs, I’m doing pretty well most of the time. Without insurance? I’d be in big trouble.

      It should be a right. Everybody should get it as a member of the richest country in the world. The politics of the right wanting to keep everybody down are so deeply flawed. So morally wrong.

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  40. Obamacare has made my head hurt. As a former human resource exec responsible for the selection and implementation of health care, I am always stunned that people are against it. You are so right. It’s not perfect but it’s a base to start on and it can be adjusted along the way. the old system stank. I continue to read and hear things about it that just aren’t true. Healthcare is such a complicated issue that most people don’t understand it. They jump on bandwagons without knowing or understanding the facts. People confuse state and federal run programs. They state incredibly foolish things as if they were gospel. They don’t understand pre-existing still exists for people without coverage. In the end it’s not about the people but the politics. My head hurts!

    Like

    • You’re so right, too, Kate. It is all about the politics. Because it is a Republic-drafted plan that incorporates the f’ing insurance companies! That’s why it is so complicated. Expanding Medicare for all would have been easier, smarter, on and on. It makes me scream, and makes my head hurt too.

      People are sheep. At least many Americans act like they are.

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  41. This made me speechless.
    Incredible writing and so perfectly illustrates why health care should be a right not a privilege. No one should be in that position.

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    • Thanks, S7. It’s hard to imagine you speechless, actually.

      But you’re right — no one should be in that position. Ill health is an enormous burden in and of itself. And to just leave our fellow countrymen and women out in the cold just goes against everything I believe our country stands for. Should stand for.

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  42. I’m with Deb, thank you for writing this, Elyse. And I can’t thank Goliath enough.

    Like

    • I’ve said it so many times, but it’s true. Nobody has ever or will ever love me the way that dog did. And I him. My mom lived in fear that something would happen to him and then I would, ummm, you know. (I don’t think she knew this story — I can’t remember telling it to her, anyway.)

      But these idiots who think that everything was hunky-dory with health care and insurance are, well, idiots. They make me scream.

      Like

  43. Deborah the Closet Monster

    I feel like I could write a billion words in response to this, but instead . . . I will just say thank you. For being here. For writing this.

    Like

    • Thanks, Deb. I look back on it strangely — not like I do the times when I’ve almost been injured, strangely. I don’t think I was really in danger, because thankfully I chose the stupid method on the planet. But the desperation, yeah, that still scares me.

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  44. I know where you’re coming from. When I became ill I was without insurance. I needed oxygen and couldn’t afford it. I needed a heart cautherization and the city hospital didn’t do them. I was dying. In 2010 ACA offereed affordable health insurance for people with pre-exsisting condition and got my test and my health is improving. I considered suicide many times. I cried and fell in depression more than I could count. I was in a cab a few days ago the driver had Limbergh on. He was saying American people don’t want health insurance and that we really don’t need it. I was fuming because I know I would probably be dead if I didn’t get insurance when I did. I also knew a woman in my situation she got insurance too late.

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    • I’m so glad you’re here to tell me your story. Just like healthy people can’t really understand what it is like to be so sick, people who have never faced the devastation of not only being sick but being financially ruined can’t grasp it. Those of us who have can’t be vocal enough about the need for healthcare coverage.

      Limbaugh. What an ass. I was just shaking my head yesterday and saying to my husband, why does anybody listen to that idiot?

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  45. bigsheepcommunications

    That was heartbreaking, but it certainly puts things in perspective. And Goliath rocks.

    Like

    • Goliath was a life-saver. Literally and figuratively.

      It’s also one of the reasons I’m so anti-gun. This story might have turned out differently had I had a less stupid method easily available.

      Like

      • bigsheepcommunications

        Well, I’m thankful that all you had was a tether ball – maybe we should start a guns for tether balls exchange program?

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        • That would be a great idea — especially if they are designed like this one was. And thanks for noticing the humor in the attempt. I look back on it with a mixture of horror and giggles. I mean, suicide by tether-ball?

          Like

Play nice, please.