April Fools for normal folks. A must have product for folks with poo problems.
Category Archives: Chronic Disease
It was a staple of my childhood. In fact these lyrics always pop into my head whenever somebody sings Jingle Bells.
Easter’s on its way …
The clip below was either produced by my childhood best friend, Liz, or other people sang our version, too. I’m guessing the latter.
And it is an early gift to me, and to you.
Ho ho ho, Merry Christmas! Leave the fan on!
In May 2012, about a year after I started blogging, I came out of the closet here on FiftyFourAndAHalf. Out of the water closet that is. I fessed up.
I posted this:
My life is shitty.
No, no, no. I can’t say that, they’ll think I’m suicidal.
My life is in the toilet.
Saturday, May 19th is World IBD Day. World Irritable Bowel Disease Day.
Recently I learned about this, umm, holiday. It is a very personal one for me. Way more personal than I want to admit. But of course it’s not my fault. I blame my sister, Judy.
You see, some time in the late sixties Judy pasted a picture on the front of the medicine cabinet above the toilet in our one bathroom.
Little did I know at whatever tender age I was that that picture would illustrate my life. Because in 1972, not long after it went up, I found out that I had ulcerative colitis. An inflammatory bowel disease. The bloody flux. I was in and out of the bathroom and the hospital for much of my teens and early 20s. What a blast!
Long story short, it ended up that I didn’t have colitis! But we only found that out when a bunch of men (led by Dr. Herbert Hoover) came at me with knives, removed my large intestine and reorganized my plumbing. That was when they found out that I really had Crohn’s Disease.
Crohn’s Disease, is, well, worse. Partly because I can’t for the life of me spell it. But also because it means I still spend way too much time in the bathroom (although I am very well read). Oh, and it can affect the entire rest of your body. Trust me when I say it’s nasty, and that there is no cure. I would be delighted if that were to change in my lifetime.
Fast forward to now, today, December 7, 2016. Today ends Crohn’s and Colitis Awareness Week. There will be a Thunderclap of posts, and tweets, blogs, and Facebook postings to call attention to Crohn’s and Colitis — to Irritable Bowel Disease — diseases that are often “invisible.” Because unless a person goes onto the Internet and proclaims that their life is in the toilet, well, nobody knows. Unless perhaps if they are in the next stall.
In all seriousness, 1.6 million people in the U.S. alone suffer from Crohn’s or colitis. These diagnoses are life changing — they cramp not just your gut, but your life. Your life really does revolve around the toilet.
So I have a favor to ask of you guys.
You’ve all been wonderful, supportive friends, who have laughed with me about my poop problems. I thank you from the bottom of my heart. Or maybe just from my bottom.
But here is the favor.
I have been working with the Crohn’s and Colitis Foundation of America to get member of the House of Representatives to join the Congressional Crohn’s and Colitis Caucus. These Representatives will, hopefully, help direct funding into research towards a cure. To, in fact, get me (and 1,599,999 others) off the pot.
Please send an email to your Congressman/woman (you can find their information here: http://www.house.gov/representatives/) and ask them to join the Caucus. In fact, just cut and paste this into the email/form:
PLEASE JOIN THE CONGRESSIONAL CROHN’S & COLITIS CAUCUS!
Led by Representatives Ander Crenshaw (R-FL-4) and Nita Lowey (D-NY-17), the Congressional Crohn’s & Colitis Caucus is a bipartisan group of Members of Congress dedicated to educating their colleagues and the American public on Crohn’s disease and ulcerative colitis. The Caucus works together to raise awareness, support IBD medical research, and protect patient access to care. The Caucus also works to assert the patient perspective in regulatory decision-making, including the development of a biosimilar regulatory pathway. To join or to learn more information, please contact Matthew Moore in Rep. Crenshaw’s office (email@example.com; 202-225-2501), or Dana Miller in Rep. Lowey’s office (firstname.lastname@example.org; 202-225-6506).
Thanks. You guys are the best.
On Thursday, December 1, I will take part in an advocacy wall for the Crohn’s and Colitis Foundation of America. Me and a number of others will visit Congressional offices in an effort to increase awareness for poo problems, to try and secure funding for government assistance in finding cures for these diseases, and, as they say in Congress, “for other purposes.”
As I’ve mentioned, really since I started this blog and especially since I divulged that I have Crohn’s, insurance is a big deal for me. It’s a big deal for anyone who has a chronic disease that requires treatment. It’s a big deal for the family members of anyone with a chronic disease.
In light of the upcoming changes in leadership in our government, I want to revisit this story that I’ve posted before. I don’t know if there will be an opportunity to bring up the real-life drama I experienced when I lost my insurance in 1982. But I will be thinking about this story as I walk the familiar grounds and office buildings on Capitol Hill.
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.
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.”
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.
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.
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 election, and especially since seeing the appointees to healthcare-related positions in the upcoming Trump Administration, 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 devised, 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? How many will in the future without Obamacare? Without Medicare? Without Medicaid?
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 share the story of my desperation. 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. There are problems with Obamacare. But we need this program or we need a better program. Going back to the old system is already unthinkable. And the solutions I’ve seen from the GOP will not keep people like me with treatment options, out of medical bankruptcy, or away from desperate action.
Health insurance for many people makes the difference between life and death. Literally and figuratively.
It is equally important as we all age to remember that Medicare is a lifeline for the elderly. It is a promise to them — to us — made long ago. A promise we have expected to be fulfilled as we planned for our future as senior citizens. A promise that we have all paid into like our 401Ks, and that we have earned the right to use when we reach the appropriate age.
Keep your hands off my Obamacare.
Keep your hands off my Medicare.