The Friday after Thanksgiving, Polly bought a fresh Christmas tree from the Bryan Lions tree lot and brought it home. We have been putting up a fresh tree most of our married lives, 38 years, to be exact. Last Saturday, Polly, with the help of our oldest daughter, decorated the tree. I am a Lionel O-gauge train collector, a youthful hobby I have revived since I retired in 2019. Typically, I put a circular train track around the tree. In recent years, our youngest son, Josiah, has put the track up for me. This year, I decided to do this myself.
Last night, after Polly went to work, I slowly made my way upstairs, retrieving some train track, a diesel engine, a steam engine, cars, and a transformer. I am not supposed to go up or down the stairs by myself, but I did so anyway. I successfully made it up and down the stairs without incident. “See, Bruce, you can do it.” The Not-So-Good Book says, “pride goeth before a fall.”
I plopped down on the floor and started putting the track together. Once the oval was completed, I put the Santa Fe F3 A-B (A being the powered unit, B the unpowered unit) engines on the track, along with a selection of boxcars, a car hauler, a Gulf Oil tanker, and a lighted 70 year old caboose. I then turned on the 100-watt MTH transformer, powering the track, and the train began to move around the tree. Woo! Hoo!
Proud of my work, I put my hand on the credenza, pulled myself up, and started to pivot on my feet. And then . . . before I could blink — literally — my feet and legs went out from under me, sending me crashing headlong into the Christmas tree. The tree broke, pulling the trunk out of the tree stand and landing the tree on a nearby recliner. Christmas ornaments rained down on the carpet. I landed on top of the cast-iron steam engine that sat inside the track circle. I lay moaning (and cursing) on the carpet for several minutes. Bethany, our daughter with Down syndrome, frantically tried to help me. I suspect she thought I had killed myself. Eventually, I crawled to the couch 8 feet away and pulled myself up, much like my toddler grandson trying to climb on the couch to harass Grandpa. And there I remained until Polly came home from work at 2:30 am.
Damage? Two broken box cars, broken ornaments, a huge bruise on my hip, along with a cut on my side and scrapes on my arm. Today, I feel like someone beat me with a baseball bat. The tree, of course, is ruined. Tomorrow, we plan to go to Menards and buy an artificial tree. That is if I am able to move.
Polly, of course, is upset with me, and rightly so, though she has been compassionate and understanding. I know the rules. I know I can’t do certain (many) things anymore. I know I have a tendency to fall. But, in my mind I still think I can do what I want, that I am healthy, strong, and steady on my feet. Those days are gone — forever. I must embrace this new reality of mine, but damn, it’s hard — and depressing too.
Bruce Gerencser, 67, lives in rural Northwest Ohio with his wife of 46 years. He and his wife have six grown children and sixteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.
Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.
A year ago, I was diagnosed with gastroparesis — an incurable stomach disease. I have battled chronic illness and pain for years, thanks to fibromyalgia and osteoarthritis, along with herniated discs in my upper back and neck. Every day is a painful struggle for me. Gastroparesis is what I call a value-added disease. I was already sick enough before my gastroparesis diagnosis, and now every waking moment is a challenge.
I have lost 110 pounds over the past 18 months, primarily due to constant nausea, vomiting, and loss of appetite. (My weight loss has leveled off in recent months.) Eating food is one of the few joys I still have, yet gastroparesis is doing its damnedest to rob of my love for food. I feel so sorry for my wife. She will cook a wonderful meal which I either can’t eat or throw up after I eat it. Imagine going out to a fancy restaurant with your hot wife, only to not be able to eat or, if I do eat, feeling immediately nauseous — regardless of what type of food I am eating. I have developed coping skills to deal with nausea. Medicine helps too — sometimes. And . . . sometimes, no matter what I do, I end up with my face in a porcelain throne. I do my best to make it home before vomiting. I HATE having to use a public restroom.
For some people with gastroparesis, the symptoms become so severe that they decide to have a feeding tube installed. A drastic choice, to be sure. I know several people in their 20s who have feeding tubes — and will likely have them the rest of their lives.
Gastroparesis, also called stomach paralysis, causes all sorts of bowel problems. What should be a normal, daily activity becomes an adventure — and not a good one either.
What follows are four things I learned about shitting after being diagnosed with gastroparesis.
Trips outside of the home require knowing exactly where store/restaurant restrooms are located
You never know when you are going to have to shit. This past summer, we took a trip to Findlay to eat and hang out at Riverside Park. As we were walking in the park, I told Polly I need to find a bathroom — now. I mean right now. I made it to the bathroom and took care of business. As I walked out of the restroom, I had the most terrible feeling I have bowl-wise: the mother of all shits is coming. I quickly turned, saying no! no! no! Halfway into the restroom, I realized I wasn’t doing to make it. I quickly pulled my suspenders and pants down and boom! shit went everywhere. On the floor, on my shoes, on my pants, on my underwear, on my suspenders — everywhere. After I was done, I cleaned up the floor the best I could, silently saying sorry to the janitor who would later have to clean up after me. I rinsed out my clothes and wiped off my shoes and suspenders. I then walked out of the restroom, underwear in hand. I looked at Polly, handed her the underwear to put in a bag. No words were needed.
Several months ago, I had a similar experience at a Whole Foods store in Toledo. This time, I made it to the toilet, splattering shit all over the stool. I cleaned up my mess the best I could, once again saying sorry to the janitor who would later have to clean up after me.
I can have multiple bowel movements a day and then be constipated for a week
It should be IMPOSSIBLE for me to be constipated. I eat a fiber-rich diet. I take fiber twice a day and use stool softeners every night. Despite all of this, I can have diarrhea one day and then be constipated for a week. After two or three days of constipation, I typically resort to enemas (and cursing) to get things moving. Prior to being diagnosed with gastroparesis, I had normal, daily bowel movements.
I have learned farting can result in shitting
Earlier this week, Polly woke up in the dead of the night to find me cleaning the bed. What should have been an ordinary, routine fart turned into a shit. Insert jokes about shitting the bed here. At least I didn’t stumble and dump my urinal all over myself or on the bed.
I have learned my body will lie to me
I will have cramps, thinking I need to take a shit. Nothing. The next time I have cramps, I will have the mother of all bowel movements. With gastroparesis, there’s no reliable way to know when you should defecate.
And now you know the rest of the story. If you ever see me running through a local store, just remember this post. And . . . avoid the restroom for an hour or so. 🙂
Coming soon, my latest blockbuster book, Adventures in Shitting. 🙂
Bruce Gerencser, 67, lives in rural Northwest Ohio with his wife of 46 years. He and his wife have six grown children and sixteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.
Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.
There’s a war going on in America. Law-abiding chronic pain sufferers are caught in the middle of a battle between federal and state laws governing narcotic prescriptions, pharmacy regulations, and medical clinic practices. The war on opiate addiction has caused untold pain and harm for people who dutifully take their medications, refilling them as prescribed by their doctor.
My primary care doctor writes me three prescriptions for Hydrocodone every time I see him. These scripts are dated, meaning they CANNOT be filled before the date on the script. I am required to see my doctor every three months to get these scripts. Thus, my $25 a month prescription actually costs me $85 — almost $1,000 a year.
My doctor electronically sends these scripts to CVS. They remain on file until I call them and ask for a refill. The pharmacy refuses to refill narcotic prescriptions automatically. Every other drug I take is on automatic refill. What makes matters worse, I must call the pharmacy on the day my doctor wrote on the script. Not the day before, but the day of. This means I must remain at home on the day my prescription is refilled.
Today, Polly called CVS, requesting my September 13, 2021, refill. The pharmacy tech said it would be ready in an hour. We arrived at CVS at our appointed time only to find out that the pharmacy did not fill my prescription. Why? They didn’t have enough Hydrocodone to fill the script. Their order will be in on the 15th!
CVS had some Hydrocodone on hand but couldn’t partially refill my prescription because it is against the law for them to do so. I said, “Fine. Send it over to Walmart.” The twenty-something-year-old pharmacist replied, “we are not permitted to transfer Schedule II prescriptions.” I tried to explain to her what this would to do me (I have NO Hydrocodone at home and have been on pain management drugs since 2005), but it became quickly clear to me that no amount of pleading on my end was going to change the “rules of engagement.” This means I will be without pain medication for 48-72 hours.
A year ago, I was taking three drugs for pain. Thanks to policies instituted by my doctor’s practice (a large physician’s group), I had to stop taking two of those drugs. I am now held hostage to an opiate load number (morphine equivalent dose); not whether my pain is adequately treated. Ninety is the magic number. I am currently at sixty. So, like a feral cat, I take what I can get from my doctor, telling myself, “it could be worse.”
After leaving CVS, I called my doctor’s office, thinking he would send a two or three day prescription to Walmart. Unfortunately, thanks to the medical clinic’s “new and improved” phone system, I could not talk directly to my doctor or his nurse. The woman who answered the phone assured me that she would make sure they got my message. I impressed upon her the importance of getting my prescription problem fixed. I am sure I sounded like a drug-seeking addict. Almost seven hours later, no return call, and now the pharmacies are closed. And so, I am left without pain medication, knowing what is coming next. Just ask any chronic pain sufferer what happens when their medications are suddenly stopped.
Sudden cessation of narcotics brings all sorts of physical problems. Everyone in this story knows this, yet I am the one that bears the consequences. Not them; I do. I snarkily told the pharmacist that I might spend the day drinking booze. “Oh, don’t do that,” she replied. I wanted to ask her, “what should I do, then?” I said nothing, knowing that she likely had no real-world experience with serious pain. There’s only one answer to my question: suffer. Or die.
Bruce Gerencser, 67, lives in rural Northwest Ohio with his wife of 46 years. He and his wife have six grown children and sixteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.
Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.
The old man and his wife pull into the store parking lot. The ride to Toledo from their home in Ney was excruciating for the old man. Wracked with pain, the old man felt every bump, thump, and bang as they drove down Toledo’s neglected streets. Narcotic pain medication helps, but nothing takes the pain away. Healthy people are often ignorant about how pain meds work. They wrongly think that taking drugs such as Hydrocodone or Oxycontin makes pain go away. Two Vicodin, thirty minutes, and voila! pain magically disappears. Or so people think. People with chronic pain know better; pain meds reduce pain, but don’t make it disappear. The old man had taken extra pain medications, preparing for the hour ride to the Glass City and back.
A recent MRI report said:
Disc herniation (T7,T8)
Disc herniation (T6,T7)
Central spinal canal stenosis (T9/T10, T10/T11)
Foraminal stenosis (T5,T6)
Disc degeneration/spondylosis (T1/T2 through T10/T11)
Facet Arthropathy throughout the spine, particularly at T2/T3, T3/T4, T5/T6, and T7/T8 through the T12/L1 levels.
Hypertrophic arthropathy at T9/T10
These diagnoses gave voice to the excruciating pain the old man had in his thoracic spine for months. Yet, this diagnosis drove the old man further into the throes of depression. Fibromyalgia, osteoarthritis, gastroparesis, and now serious back problems. “Does it ever end?” the old man wonders, knowing that the answer to his existential question was “no.” No cure. No pain-free days. No better tomorrow. Just pain, suffering, and struggling with death in the hope of living another day.
The old woman parked the car, opening her door, and walking to the raised hatch on the back of their SUV. The old man no longer drives, so it’s up to the old woman to drive them everywhere they go. The old man partially opens his door, pushing it open with his cane. Then, with great difficulty, he stands up and then haltingly walks to the back of the car.
The old man and woman knew this day would come, the day when the old man finally gave in and gave up, resigning himself to using a wheelchair full-time. The old man’s pain and debility is such that walking is difficult and dangerous (risking falls and injuries). Unable to pick up more than a pound or two, the old man cannot remove his wheelchair from the trunk of their car. The old woman carries so much of the old man’s weight these days, yet she never says a word. Forty-three years ago, she stood before God and man and said to her husband:
I, Polly Shope, take thee, Bruce Gerencser, to be my wedded Husband, to have and to hold from this day forward, for better for worse, for richer for poorer, in sickness and in health, to love, cherish, and to obey, till death us do part, according to God’s holy ordinance; and thereto I give thee my troth.
Little did she know what these words would mean in the years to come.
The old woman has her own health problems. Two major bowel surgeries, A-fib, knee problems, all in the past three years. She needs to retire, but she can’t. The old man needs health insurance. Without it, medical bills would bankrupt them. Even with insurance, they paid over $40,000 over the past five years for health care.
The old woman pulled the wheelchair from the car, pushing on the wheelchair’s arms to expand its seat. She puts a gel cushion on the seat and a bedroom pillow she brought from home where the old man will soon put his back. “Where are the feet?” the old woman says to her thirty-one-year-old daughter with Down syndrome. She already knows the answer to her question. The feet for the wheelchair are sitting on the dining room floor, fifty miles away.
Without the feet, the old man can’t use the wheelchair. “I’ll just walk,” he tells the old woman. “I can do it,” he says, seeing the doubt and worry in the old woman’s eyes.
Sure enough, by the time the old man reaches the front door of the store, he knows he will be unable to walk its aisles. “Fuck,” the old man says in the way only the old woman understands. Not far from the couple is the answer to the old man’s inability to walk. “Nope. I am not going to do it. Goddammit, no! What will people think of me? I’m not a cripple. Dammit! I’m just as strong as I was in my athletic days.” The old man struggles in his mind with accepting things as they are, and not as he wishes they were. He lives according to the mantra, “it is what it is.” The old man knows he is facing yet another “it is what it is” moment.
Finally, the old man walks over to the battery-powered carts. The old woman had begged him to use one of the carts when they were shopping for several years. He refused, too prideful to ride around the store in a beeping advertisement that screamed he was a cripple. Today, it was the old man’s Waterloo. Either the old man will sit in the car while the old woman shops, or he will swallow his pride and use a cart.
The old man sits down on the cart, and soon he’s driving the store’s aisles. While using a cart solved the old man’s “walking” problem, its sudden starting and stopping only increased his pain. The wheelchair with its feet attached will be his chariot the next time he and the old woman go shopping. What changed this day was how the old man viewed and understood his future. Sometimes, giving in is the only thing you can do. The old man learned that he would have to sacrifice his pride if he wanted to “live.”
Bruce Gerencser, 67, lives in rural Northwest Ohio with his wife of 46 years. He and his wife have six grown children and sixteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.
Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.
Every time I mention my health in a blog post — as sure as the sun comes up in the morning — I will receive emails and social media comments from readers offering me unsolicited, unwanted medical advice. These people mean well, but their “advice” is not welcome or helpful. Their advice says I am not doing something right; it is my fault I am sick and in pain. If I would just follow their “advice,” I would no longer be sick, nor would I be in pain.
Often, the “advice” I receive comes from proponents of alternative treatments — unproven treatments purveyors promise really, really, really work (for a price). There seems to be an assumption by the people who send me unsolicited medical advice that I am ignorant; that I have not investigated other treatments for gastroparesis, fibromyalgia, and osteoarthritis.
Last Saturday, I published a post titled, Health Update: I’m F**ked. In this article, I mentioned the results from an MRI I had last week:
I had X-rays. Normal. CT scan. Normal. And now an MRI of my thoracic spine. NOT normal. I have:
Disc herniation (T7,T8)
Disc herniation (T6,T7)
Central spinal canal stenosis (T9/T10, T10/T11)
Foraminal stenosis (T5,T6)
Disc degeneration/spondylosis (T1/T2 through T10/T11)
Facet Arthropathy throughout the spine, particularly at T2/T3, T3/T4, T5/T6, and T7/T8 through the T12/L1 levels.
Hypertrophic arthropathy at T9/T10
I quickly received several emails and comments telling me that I need to try this or that diet or supplement. These people have no idea about what my diet is or what, if any, supplements I take. They assume that because I am sick and in pain, that I must not be doing what they suggest I do. One long-time reader sent me a link to a video and suggested I go on the KETO diet. I tersely replied that I was on the no-food diet (gastroparesis); that I have lost 120 pounds; that my A1c is 5.3. She means well, but her emails and comments are NOT helpful. The same can be said for emails from people saying that if I just became a vegan, all would be well.
Let me be clear: I think Reiki, chiropractic treatment (with a few exceptions), homeopathy, supplementation, essential oils, acupuncture, magnets, faith healers, etc., are unproven, unscientific modalities. The same goes for diets that advocate unbalanced, unhealthy eating. There’s nothing wrong with my diet. I eat lots of vegetables, seafood, and other “healthy foods. Yet, I am still sick. Why? My problems are not diet related. There’s no diet or supplement known to man that will “cure” the structural damage in my back. Go to a chiropractor? Are you fucking kidding me? Think about that for a moment: a chiropractor pushing on my herniated discs. What could go wrong? The only solution is to treat and manage my pain.
I am a proponent of science-based medicine (SBM). I have confidence that my doctors are providing me the best possible treatment. I keep myself informed about the latest treatments and studies for my various maladies. I suspect I am better educated on gastroparesis, fibromyalgia, and osteoarthritis than are any of the people who offer me unsolicited medical advice. I have friends I trust who will send me links to reports or studies they have read. I have no problem with them doing this. What irritates the hell out of me is the unsolicited medical advice that subtly suggests that I am at fault; that if I would just do _______, my decades-long illnesses and pain would magically go away.
If you want to help me, continue to read my writing, leave pithy comments, and support my work financially. Leave my medical care to my doctors and me. Trust me, we have it under control. I know the limitations of modern medicine. I know that no magic treatment that will “cure” me is lurking around the next corner. I expect my doctors to do what they can, but I have never expected them to be miracle workers. Sometimes, life sucks. I am a realist. I know that I will battle chronic illness and pain until I die. Friends, family, and blog readers, genuinely wish I weren’t in pain. They tell me that things will get better in time. “Surely, better days lie ahead for me.” They think I need encouragement or happy visions of a seal bouncing a beach ball on his nose. I don’t. Sure, there are things people can do to help me, but how about asking me what help I need instead of assuming I need ______________?
Let me kindly ask again that readers do NOT send me unsolicited medical advice. And that includes leaving comments on this site, making comments on social media, or sending me private Facebook/Twitter messages. If you truly love and respect me, PLEASE stop.
Bruce Gerencser, 67, lives in rural Northwest Ohio with his wife of 46 years. He and his wife have six grown children and sixteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.
Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.
I have gastroparesis, fibromyalgia, and osteoarthritis (I’ve typed these words so many times, autocorrect remembers them). In addition, over the past four months, I’ve had excruciating pain in the middle of my back, left side, and under my left arm, into my shoulder, and down my arm. The pain is so severe that it affects everything I do. Some days, I can hardly use my left arm (and I’m left-handed).
I had X-rays. Normal. CT scan. Normal. And now an MRI of my thoracic spine. NOT normal. I have:
Disc herniation (T7,T8)
Disc herniation (T6,T7)
Central spinal canal stenosis (T9/T10, T10/T11)
Foraminal stenosis (T5,T6)
Disc degeneration/spondylosis (T1/T2 through T10/T11)
Facet Arthropathy throughout the spine, particularly at T2/T3, T3/T4, T5/T6, and T7/T8 through the T12/L1 levels.
Hypertrophic arthropathy at T9/T10
I knew I had osteoarthritis arthritis in my spine. I have arthritis everywhere. Why I have these other problems is unknown. Genetics (my sister has similar problems)? Injury? Age-related deterioration? God’s judgment (I already know Evangelicals are thinking this)? Too much sex (you will have to ask Polly)? 🙂 Sports-related damage? There’s no way of knowing the exact cause. And it doesn’t matter. Knowing the cause won’t change the fact that I have excruciating pain in the middle of my back.
My primary care doctor called me this morning to give me the MRI results. I could tell by his voice that the results were not good. He’s been my doctor for twenty-six years. Doc has literally watched me physically deteriorate over the years (he calls me an enigma — something that baffles understanding and can’t be explained). He genuinely cares about me and wants to alleviate my suffering. Unfortunately, there’s little he can do except treat the pain. Doc referred me to a pain management doctor in Fort Wayne. Hopefully, I will get in to see him soon.
After Doc gave me the verdict, I replied, in my gallows humor way, “I’m fucked.” He chuckled a bit — we’re friends — and then he reminded me of a scene in Planes, Trains, and Automobiles; the scene where Steve Martin repeatedly uses the F word.
Today, I feel fucked. Hopefully, the pain doctor will help me feel less fucked soon.
It is what it is, but the spinning plate that I call life is overflowing. I’d pray if there were a God, but since there’s not, all I can do is endure. As I ponder my suffering, I am reminded that it could be worse. My friend, Eric, died several weeks ago from pancreatic cancer. In less than a year, he went from enjoying life with his grandchildren to excruciating pain and death. I have another friend who contracted COVID-19 before the vaccines were available. She’s in her forties. She had a stroke, heart problems, and had to have eye surgery. I’m concerned that she could end up blind. It is unlikely that she will ever work again. I have another dear friend, Tammy, who also contracted COVID. She was a spry, outgoing psychiatric nurse, that is until COVID left her incapacitated. She’s now on permanent disability. I could go on and on. Like it or not, suffering is part of our lives. Few people will escape this life without suffering at one point or another. It’s just the way it is.
Oh, did I tell you about the rash I have; that is so itchy I want to get out a butter knife and scratch myself to death? True story . . . years ago, Polly came home from work and found me in the middle of the floor, scratching my arms and legs with a butter knife. I had had a painful gallbladder attack that caused me to break out in hives. Thank the Gods for butter knives. And Benadryl. And corticosteroids.
I do have one bit of good news: I am retaking generic Lyrica. It is quite effective for the nerve pain in my legs. In fact, I now have NO nerve pain in my legs. In the past, taking Lyrica has caused weight gain, so much so that I had to stop taking the drug (twice). Gastroparesis has dramatically altered my physiology. I thought maybe my body would react differently to Lyrica this time. So far, no weight gain. Can I get an AMEN? And for that, I am grateful. Grateful to whom? Not God, that’s for sure. Loki? Maybe. 🙂 It is science that courses through my veins, lessening the pain in my legs. All praise be to science, the only God that makes its presence known.
Thank you for your continued love and support. Your kind words mean the world to me.
Bruce Gerencser, 67, lives in rural Northwest Ohio with his wife of 46 years. He and his wife have six grown children and sixteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.
Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.
Yesterday, long-time reader and friend, Charles, complimented me on some of my recent writing, saying:
The several articles you put up today are very timely—-news wise—–and they are some of your best work.
I always appreciate such comments. I have never been a good judge of the quality of my work, so kind, thoughtful comments are always appreciated.
What I want to address in this short post is what else Charles said. Let me be clear, I am NOT taking Charles to task for saying this. I love and appreciate Charles, but there’s a teachable moment here that I think readers might find helpful.
Before complimenting me, Charles said:
You must be feeling better Bruce.
As countless readers, friends, and family members do, Charles sees a connection between “good” writing and how I feel physically. If my writing is perceived as “good,” then I must be feeling better. However, as my editor and my wife can tell you, some of my best work was written on days when I was quite sick, even suicidal.
I no longer have good days. I have no prospect of feeling better. The health problems I struggle with aren’t going away, and, quite frankly, they aren’t, on most days, very well managed. Writing, then, becomes a distraction of sorts, a way to take my mind off my pain and suffering. As I sit here typing this post, my body pulses with pain — and that’s after taking this or that medication. What writing does is direct my mind away from the spectacle of my life. Writing can be, for me anyway, a pain reliever of sorts. Think of it this way: your foot is throbbing with pain. You pick up a hammer and hit your hand. Problem solved. Your foot doesn’t seem so painful. This is exactly what writing does for me; a distraction that, for the time I am clicking away on my IBM keyboard, mentally reduces my pain.
Two weeks ago, I had a procedure done to temporarily lessen or stop the pain I have from gastroparesis. Unfortunately, it did not work. What treatments are left for me? Just do a Google search on “treatments for gastroparesis.” Doing so left me in despair. I have concluded that I must find a way to live with this, or not. Today, I chose to eat lunch, knowing that it would leave me feeling like I had been slugged in the abdomen. I don’t plan to give readers a running commentary on my difficulties. I just don’t have the wherewithal to do so anymore. Know that when you don’t see me post for a few days, it is for one reason alone: I can’t. And when I do post, it’s not because I “feel better,” but I do feel well enough to drag my sorry ass from the couch to the office, turn on Spotify, and write a few words that I hope readers will find helpful.
I know readers such as Charles genuinely want what’s best for me. They want me to feel better or find relief from my pain. I make no judgment on the well-meaning words of others. It beats being told by an Evangelical critic that he hopes I die and burn in Hell for eternity.
There are no more “feeling better” days ahead for me. I have resigned myself to that fact. Unless a revolutionary cure or miraculous healing comes my way, I know what lies ahead for me. And that’s okay. Not really, but hell, what am I going to do about it? Pray? Seek out a faith healer?
When you see another post by me, I hope you will say, “awesome, Bruce, is among the living!” And when the day comes when I can no longer write, please know, I will be forever grateful for your love and support.
Bruce Gerencser, 67, lives in rural Northwest Ohio with his wife of 46 years. He and his wife have six grown children and sixteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.
Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.
I thought I would share with my readers a bit about living with fibromyalgia. In 1995, I started feeling fatigued and had a lot of muscle aches and pains — not from overwork or any of the daily physical activities I engaged in. I just felt tired all the time, and my body ached from head to toe. After months of feeling this away, I sought help from doctors; a two-year exercise in frustration and futility. One doctor suggested that it was all in my head; that I was still grieving for my mother who died in 1991. I blew up at this “esteemed” physician, shouting at him in no uncertain terms, IT’S NOT IN MY HEAD!
I was a thirty-five-year-old pastor who, up until that time, could physically do whatever he wanted to do; from playing sports to cutting wood to car repairs to construction work. Why was I fatigued? Why did I hurt all the time? Those are the questions I wanted answered.
In 1997, I saw a new doctor in Montpelier, Ohio. For the first time, I had a physician who actually listened to me. Twenty-five years later, this man is still my primary care doctor, and most all, my friend. Doc wasn’t a miracle worker. He found my symptoms troubling, yet tests came back normal. Of course, the reason for this is that fibromyalgia is a diagnosis of exclusion. Other diseases such as multiple sclerosis and polymyalgia must be ruled out before a doctor can determine whether a patient has fibromyalgia.
For several years, I sponsored and moderated a Christian email discussion list called CHARIS (the Greek word for grace). One of the list participants was a sickly man who was an invalid. After mentioning my health problems to list members, this man contacted me and suggested that I talk to my doctor about fibromyalgia. This “providential” conversation resulted in my doctor diagnosing me with fibromyalgia. Nothing changed for me, per se. Just because you have a diagnosis doesn’t mean that all of a sudden you are on the path to healing. What the diagnosis did say to me is that my pain was not in my head; that what I was dealing with was real.
There’s no cure for fibromyalgia. Symptoms vary widely, and most fibromyalgia sufferers are women. Twenty or so years ago, I drove to the Williams County Fairgrounds to attend a fibromyalgia support group. I felt, at the time, very alone. Few people seemed to understand what I was going through. Even my family was perplexed. What happened to Bruce, to Dad?
I arrived at the support group meeting thirty minutes early. Typical Bruce Gerencser behavior — always early. My children (and Polly) have oh-so-fond memories about my lectures on being on time; that you should always be early. As I sat in the fairground parking lot, I watched as people filed into the meeting. I quickly noticed that there were NO men, I mean none. Every group member was a woman. I thought, “these women will never understand what I am going through.” So, I decided to not attend the meeting and drove home. Years later, I started blogging, and my readers became my support group. I learned that woman with fibromyalgia did, in fact, have a lot to offer me, namely understanding.
No two fibromyalgia sufferers have the same symptoms. On a scale of 1-10, I am on the 10 side of the spectrum. Fibromyalgia has affected every aspect of my life, bit by bit robbing me of the man I once was. People in my life have a hard time accepting that fibromyalgia is an incurable disease; that all that can be done is to manage the symptoms. And yes, I have read the books that suggest otherwise. Just don’t . . . whatever book title you are going to suggest or website you think will really help me, trust me, I know about it. Twenty-five years of dealing with fibromyalgia have helped make me an expert on the disease. I have read numerous books, websites, and studies about fibromyalgia. I have had to deal with well-meaning fools who email me or send me stuff in the mail they believe will cure me. Even when I beg people NOT to do this, they do it anyway. “Just take this or that supplement, Bruce, and your fibromyalgia will go away!” “Have you tried __________?” The ill-informed judgment is that I have not, when, in fact, my primary care doctor and I have tried numerous medications, supplements, off-label drugs, treatments, etc. When I came into the office and said, “Doc, I read about this new fibromyalgia treatment, what do you think?” he always said, “let’s give it a try.” His goal today remains what it was twenty-five years ago: reduce my pain and improve the quality of my life.
Over the years, I developed other health problems, namely osteoarthritis that rages through my body like a wildfire, and peripheral neuropathy that causes numbness and pain in my legs and feet. The unholy trinity of fibromyalgia, osteoarthritis, and neuropathy have so afflicted me that I hurt from the crown of my head to the bottom of my feet. There are no pain-free days, just manageable pain days, and raging pain days that make me ponder killing myself (no this is not a cry for help). Throw in a degenerative lower back problem, a tear in my shoulder labrum, and bum knees thanks to abusing them playing basketball for twenty years, and I can safely say that I am a walking, talking train wreck of a man. I wish things were different for me, but all the wishing in the world won’t cure me. So, I accept and embrace what I call my “new normal.” And my “new normal” continues to change over time. I know Doc sees it. There are those times I have heard a brief sigh from Doc as I share a new problem. Not a sigh of exasperation or impatience, but one that says he knows that I am struggling for my life. I have told him numerous times, “I don’t expect you to fix what can’t be fixed.” “All I ask is that you do what you can for me.” And he has done just that over the past two and a half decades.
My treatment has settled into a rhythm of sorts: pain medications, potent muscle relaxers, sleep medications, light aerobic exercises and walking when I am able, and hot — and I mean hot — baths. The goal is decent sleep and the reduction of my pain to a tolerable level. Some days, it’s mission accomplished. Other days, not so much. And then there are those days when the meds don’t seem to work and muscle and joint pain batter me from head to toe for hours on end. The latter leave me in tears, wishing something, anything would make it stop. In these moments, I feel very alone, even though the love of my life is right next to me.
I am sixty-three-years-old. Thanks to the issues mentioned in this post and other health problems I won’t mention lest I sound like Granny Sue at church cataloging her afflictions, what I can do in life is limited. For years, my well-intentioned mother-in-law would ask Polly if I was “feeling better,” as if I had a temporary sickness that would soon disappear. She finally understands that I don’t have days when I “feel better.” Mom used to be a big proponent of “putting mind over matter.” That is until she had her own health problems; diseases that can’t be magically wished or prayed away.
Most days, I walk with a cane, but when we take trips or I am really fatigued, I have to use a wheelchair. I still refuse to use the motorized carts at the grocery. Irrational pride, to be sure, but I would rather slowly go through the store bent over the handle of a cart than ride around the store as an advertisement for infirmity. You see, people with fibromyalgia (and osteoarthritis) often look “normal.” I can’t tell you the times I’ve gotten glares when we pull into a handicapped parking space. I get out of the car and look “normal” so people think I am taking a parking space away from someone who could really use it.
I still struggle with self-worth as a result of fibromyalgia. In my mind, I am supposed to be the breadwinner instead of my wife. I am the one who is supposed to be taking care of everything. Having OCPD doesn’t help either. Fibromyalgia is a cruel oppressor. In my mind, I tell myself, “Bruce, you can do everything and anything you want to do!” Remember the line from the Waterboy? “You can do it!” And then I hear fibromyalgia and his sister osteoarthritis laughing and mocking me. “Sure, Bruce, go ahead and try.” And try I do, often working myself into bed for days on end from relentless pain and overwhelming fatigue. Fibromyalgia snickers and says, “See, Bruce, I told you! I am the boss in this story.”
One of the hardest things I have had to come to terms with is my physical and emotional limitations. When you spend most of your life as a workaholic, a man driven to perfection, it’s hard to admit that you are no longer in control of your storyline. I certainly haven’t mastered dealing with the realities of my life. I can, all too often, overwork, and this frustrates those who love me. I have never been good at finding balance in my life. I am more of an all-in kind of person, charging hell with a squirt gun, only to find out there’s no water in the gun. I want to think I have gotten better, but I suspect what’s really changed is that Polly is now willing to put her foot down and tell me no or suggest that I take off a day or two or four and rest. I also have friends such as Carolyn, my editor, who recognize my character flaws and try to keep me from self-destructive behavior. Carolyn can recount many times that I texted to tell her that I was going to go do this or that. She wisely encourages me to take it easy; to live for another day. And sometimes Carolyn sends see several smile emojis with a message that says, “you are going to do this anyway, aren’t you?” And sure enough, I do, and the next text she gets from me is one saying I won’t be doing any writing for a few days.
I haven’t worked a W-2 job since 2005. In recent years, I have done some web design and site management work for my sister’s trade school in Arizona. This provides me a bit of income, even though I feel guilty about taking her money. This blog, after expenses, also provides me a thousand or two dollars of income. And now that I am drawing social security, I feel as if I am contributing in some small way to our material well-being. That said, I can’t help but think when I see my wife of forty-two years walk out the door to go to work that I should be the one, pick in hand, heading for the coal mine.
This is the first comprehensive post I have written about my struggles with fibromyalgia. I hope you found it helpful, and it gave you a bit of knowledge and understanding about a disease that affects millions of people.
Bruce Gerencser, 67, lives in rural Northwest Ohio with his wife of 46 years. He and his wife have six grown children and sixteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.
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My health is very much a part of my story. It is impossible for readers to understand where I have come from and where I am today without me telling them about my struggles with chronic pain, fibromyalgia, and osteoarthritis. Over the past decade, I’ve not been shy about sharing with readers my health history. Unfortunately, in doing so, I have opened myself up to unsolicited medical advice from people who have diagnosed me from afar. In recent years, I have received emails, letters, telephone calls, texts, packages, and personal visits from people who are certain they know the cure for what ails me.
One woman — a former church member — would stop by my house every few weeks hoping to sell me super-duper, cure-all shakes that she was certain would return me to perfect health. I had to hide in my bedroom and have Polly lie to her about my availability. After months of attempts to evangelize me, the woman finally took the hint and stopped. At the time, she was on the shakes. Today? She has abandoned this miracle cure and continues to face debilitating health problems.
Well-meaning people have told me that this or that drug, this or that supplement, reiki, spinal adjustment, surgery, acupuncture, iridology, yoga, chakra alignment, mindfulness, homeopathic concoctions, essential oils, Native American rituals, magnets, diets — need I go on? — would infallibly cure me. Today, I received in the mail a list of books from a blog reader — some of which I have read — that, if followed, would supposedly put an end to my chronic pain. The gist of the books is this: your pain is all in your head.
I go out of my way to avoid interaction with readers when they put on lab coats and play doctors. I either ignore them altogether or I quickly say “thank you” and change the conversation. Yet, it seems no matter how many times I say, PLEASE DO NOT OFFER OR SEND ME UNSOLICITED MEDICAL ADVICE, people continue to ignore my request and offer advice anyway. What is it that says to some readers that they are free to disrespect me as a person? Is there anything ambiguous or unclear in PLEASE DO NOT OFFER OR SEND ME UNSOLICITED MEDICAL ADVICE? Do some readers think I am stupid or ignorant or lacking competent medical care?
I get it. I am the kind of writer who has swung open the door of his life, inviting such advice. However, I have politely asked that people not give me unsolicited medical advice. How hard can it be for readers (and family members) to respect my wishes and leave me alone? Can they not see that their tactics are no different from those used by Jehovah’s Witnesses or evangelizers from Independent Fundamentalist Baptist churches? “Sir, we are here today to offer you something that will change and transform your life!” Never mind the fact, that I am not ignorant about what they are peddling, be it Jesus or a “cure” for Fibromyalgia.
Let me be clear. I am under the care of a team of competent medical professionals. I am well-educated concerning my afflictions. Unless researchers come up with new treatments, I am going to die “Just as I am.” I have resigned myself to the fact that a combination of what ails me will eventually lead to my demise. And I am okay with that. I do what I can to manage my symptoms. If I read of something that “might” be helpful, I bring it up to my primary care doctor. In the twenty-three years he has cared for me, he has NEVER said no to me; never refused an off-label drug or treatment that “might” alleviate my pain and suffering. “Let’s try it and see if it works.” My orthopedic doctor treats me in a similar manner. He knows, based on x-rays, CT scans, and MRIs, that I have arthritis from head to toe. He knows that surgery is not a good option for me, so he does what he can to alleviate my pain. The scans tell him that the pain is not in my head.
I know that writing this post and making it prominently available will do little to stop certain readers offering unsolicited medical advice. It is not like I can ban them or anything. As long as I have a widely read blog and make it easy for people to contact me, I am going to receive emails, letters, telephone calls, texts, packages, and personal visits from pretend doctors. That doesn’t mean, however, that I can’t bitch about it. Praise Loki for the power of bitching, amen? Amen!
You may be thinking, “These people [people who offer unsolicited medical advice] sound irritating, sure, but why are you making such a big fuss? They’re just trying to help!”
Of course, I get that they’re trying to help, and in some cases, it really is just a pet peeve that I’ll politely accept or decline and move on. But the thing is that constant unsolicited advice, questioning, and imploring to try something different becomes very invalidating. You don’t just hear a helpful tip to try, you hear that you aren’t trying hard enough, that using medication to treat your condition means that you’re giving up or aren’t willing to seek out a non-medicinal alternative. You hear that all of the work that you and your doctors have done, the tests, the procedures, the trial and error of different combinations of medications and treatments aren’t enough, and that you need to try a different path. You hear that if you did give these suggestions a shot in the past, you didn’t try long or hard enough, you weren’t following it correctly, or you bailed and took “the easy way out.”
It is frustrating to constantly hear the message that not only are you not trying hard enough to improve your own health, but that you and your doctors are not the most knowledgeable about your medical and lifestyle needs. A stranger or acquaintance took it upon themselves to say that they know more about your condition from a bit of Googling and a few books than your doctor with their experience and education, and you with your everyday, lived experience of actually having the medical condition. It is emotionally damaging to not only hear that you aren’t living with your disease correctly, but to always have to educate others on why their unsolicited advice is unwanted and harmful. Unfortunately, they usually just they reply that you’re overreacting and become offended that you won’t take their suggestion. This only adds to the emotional pain, and very often, the physical pain of a medical condition that can be triggered by stressful situations.
My message is this: please, please do not give advice when it is not specifically requested. If someone wants information about your lifestyle, your choice, or your product, they will ask you and they will do the research. If you do give advice and somebody says that they aren’t interested or asks you to stop, just respect their wishes. Nobody should be coerced into trying something they don’t want to try, and if you push forward with your advice, not only would they not listen, but they may become stressed, hurt, and invalidated by your inability to respect their wishes.
Trust that disabled and chronically ill people and their medical teams are the most knowledgeable about their own health and their medical and lifestyle needs. Trust that they will seek out you or the proper sources if they’re interested in what you have to offer. And out of respect for disabled and chronically ill people everywhere, please stop forcing your unsolicited advice upon those who don’t want it.
I would rather spend the rest of my days banging my head against a wall than to continue trying to explain to people that their essential oils and kale will not cure me. OK, I’m being dramatic, but not as much as you might think!
If you’re anything like me, when you first became chronically ill (if you’re reading this as someone who’s sick), you possibly went through a naive stage early on in your illness. The stage where you believed the random person in an elevator who’s known you for two whole minutes who said that snake oil was God’s gift to the ill, or your aunt’s cousin’s brother’s half-sister who swears by this new detox where you only eat eggs for a month and every illness ever will be reversed, or some crap like that.
But seriously, there was a period of time at the beginning of me being sick that I desperately held onto the belief that I had control and would get better, so I tried anything and everything anyone presented to me. The worst was this “joint juice” concoction my dad ordered off an infomercial that tasted worse than words can describe. Yuck.
After awhile, it became something I did out of spite. Eventually there were few things left that I hadn’t tried, but when someone offered me something new, I would try it to prove to them how wrong they were.
When people constantly offer up these things, especially after I’ve spent time telling them my story, it doesn’t come off as helpful. I know, I know. People generally mean well. Sure. I’d like to say I believe that. But there’s condescension there almost always. And disbelief. And disrespect. It’s a smack in the face. It’s basically people saying to me that I just must not be doing enough or else I’d be better.
We as humans don’t like to lose control. We don’t. I certainly don’t. It’s not fun. We try to control every aspect of our lives. We love to plan out how every minute of everyday is meant to be spent and we think we can control that.
But the truth is, we can’t control everything. We cannot always control our bodies and our health. I know it’s scary to realize this, but it’s true. And I think that’s a big reason why one of the most common reactions people have to finding out that I’m chronically ill is to give me advice (that I didn’t ask for) on how to get better (from my incurable diseases). They want to help, but they want even more to keep up the illusion of control in their world. They’d rather believe that it’s essentially my fault that I’m not better because I’m not doing something right, because I don’t have the proper self-control, than to acknowledge the lack of control we have over our lives.
So what all of this unsolicited advice says to me is, “I didn’t listen to anything you just said because I’m scared of facing our lack of control and my mortality. I think you just don’t know what you’re talking about. I know better.”
That’s the truth of it. So the next time you’re thinking about offering up unsolicited advice to someone who’s chronically ill, it’s probably best to just…not.
Thank you for your love, kindness, and support. Many of you have come alongside me and brought understanding and encouragement during difficult times. It is enough for me to know that people care.
About Bruce Gerencser
Bruce Gerencser, 62, lives in rural Northwest Ohio with his wife of 41 years. He and his wife have six grown children and twelve grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist. For more information about Bruce, please read the About page.
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Last January, my wife was admitted to the hospital and later diagnosed with ulcerative colitis. In July, she was told she had bladder cancer and a fistula that had created a path between the colon and bladder (resulting in feces in the urine). A urologist and colorectal doctor planned to do surgery sometime in August. On August 1, I rushed Polly to the emergency room. Her catheter had come out — more precisely, blown out — and she was, to put it bluntly, shitting all over herself and the floor. After six days at the Community Hospital and Wellness Center (Bryan Hospital), the surgeons decided Polly’s surgery would have to be done at Parkview Regional Medical Center in Fort Wayne, Indiana.
Late on August 6, Polly was transferred by Williams County EMS — the only ambulance service in the county — to Parkview. Polly would later have successful bladder and colon surgery. All told, she spent eighteen days in the hospital. Total cost for the January and August hospitalizations? $200,000. And that’s what our insurance paid, not what the various service providers billed. The sheer amount of the billings and various providers is mind-boggling, even to a man who spent most of his adult life handling church and secular business finances.
Our annual insurance deductible is $3,400. Our maximum out of pocket is $6,750. On top of that, we pay $84 a week for family medical coverage. Polly’s employer pays another $19,000 a year to provide our family insurance. This means that we personally paid $11,118 this year for medical expenses. Add what Polly’s employer pays to this amount, and our total medical costs exceed $30,000. And, all praise be to the God of American Capitalism, this starts all over again come January 1. Well, with one change: our insurance premiums go up again, as they have most years over the past two decades! (Some years, premiums remained the same, and deductible and out of pocket maximums were increased. Over the past two decades, our deductible has increased 1,000% and our family maximum out of pocket has increased over 500%)
Polly’s surgeries were a success. Last Friday, she had a colonoscopy to determine whether her colectomy could be reversed. The surgeon reported that her colon was free of inflammation and that the colectomy could be reversed. Surgery is planned for March 2020. The bladder cancer? The pathologist made a “mistake.” Polly doesn’t have cancer. The pathologist’s negligence caused untold grief for us. His error triggered a hospital-level tumor board review. The urologist who resected Polly’s bladder sent tissue samples to the University of Michigan for examination. The samples were cancer-free.
Polly having surgery in March 2020 means, of course, that we will have to meet our annual insurance deductible and maximum out of pocket again. This means that, once again, we will spend $11,118 for medical costs. Of course, this has been the norm more years than not for us over the past decade. The only difference this year is that it is Polly’s medical bills, and not mine, that are running up the tab.
And, that’s not all . . . (think of Billy Mays doing a late-night OxiClean infomercial).
We have almost $3,000 of medical bills that the insurance company didn’t pay. I spent several hours on the phone today, trying to figure out why these bills weren’t paid. Right now, my emotions run the range of going postal and weeping, wondering when we will get out from under the weight of medical costs. The EMS bill balance of $965 is ours to pay (the total billed amount for transport was almost $1,900). Polly’s transport was medically necessary and Williams County EMS was the only provider in the county. What were we to do, right? I asked both the hospitalist and nurse to make sure that the transport was covered by our insurance. They assured me that it was. And it was, with one big fuck you. Williams County EMS accepts our insurance, BUT they do not accept insurance adjustments and assignments. Polly’s insurance company paid what Medicare customarily pays, leaving us with a substantial balance. I am also dealing with pathology and radiology bills that were rejected by the insurance company due to incomplete paperwork, lack of reports, etc. Trying to find someone who could actually “fix” these problems for me proved futile. It’s up to me to contact the various players and make sure proper documents are submitted to the insurance company.
The American healthcare system is broken. And it will remain this way until our government leaders are willing to overhaul the system and take the profit out of medical care. As long as insurance companies and large “non-profit” health care providers are in the driver’s seat, we shouldn’t expect change. In the meantime, all I know to do is send out monthly checks of $25, $50, and $100 to service providers as payment for our outstanding balances. One provider, Parkview Hospital and Physicians Group, refuses to accept payments for more than a twelve-month period. Owe them $2,400? Your monthly minimum payment is $200. Yes, they offer bill reduction if you are poor, but unfortunately, we are just over income line they use to determine eligibility. Our local hospital, thankfully, did provide us a partial bill reduction (and was, overall, substantially cheaper than Parkview). They also don’t demand exorbitant monthly payments. We have been paying them $100 a month for, it seems, forever.
I know our story is not any different from those of other Americans facing serious medical problems. We are held captive by a system that prioritizes profit over care; a system that is almost impossible to navigate. Until government leaders put the healthcare needs of their constituents first, we shouldn’t expect things to change. While the Affordable Care Act was a step in the right direction, Congress, along with the Federal Courts, are going out of their way to burn “Obamacare” to the ground. President Trump and Republicans promised Americans awesome health insurance if the Affordable Care Act is invalidated. I can safely say that no such “awesomeness” is forthcoming. For the Gerencsers, 2020 will be yet another year of mounting healthcare costs; just as it will be for millions of Americans. We are all dying, one medical bill at a time.
On October 2, 2019, Michael Hicks. professor of economics and the director of the Center for Business and Economic Research at Ball State University, wrote an editorial in the Fort Wayne Journal Gazette castigating Parkview and other Indiana Hospitals for their excessive medical care costs. (We live in rural northwest Ohio. Toledo and Fort Wayne are our “big” cities, 40 miles or so in either direction.) Here’s what Hicks had to say:
Several weeks ago, a concerned citizen sent me a financial summary of Indiana’s not-for-profit hospitals. He asked that I look into the issue of excessive profits by these systems.
I was skeptical that the issue would be relevant. Profits are critical to an economy; they serve as a guide to pricing and investment decisions and reward the men and women who create value. The demonization of profits is a sure sign of unformed thought. Moreover, not-for-profit hospitals have explicitly chosen to forgo profits as part of their operations, so I doubted the financial summary would reveal anything important.
I was mistaken.
What I discovered will deeply anger every Hoosier and should embarrass most hospital administrators and board members. I also expect it to cause significant changes to state policy with respect to these hospitals. This is likely to change the way we tax them, regulate their competitors and enforce antitrust laws. It will surely lead to civil litigation involving billions of dollars of excess profits.
It turns out the not-for-profit hospital industry and its network of clinics is the single most profitable industry in Indiana. These profits are so large that, when accumulated, they account for roughly 9% of the state’s total economy. As of 2017, this industry had accrued more than $27 billion – yes, billion. Yet, the not-for-profit industry in Indiana pays virtually no taxes and invests almost none of those profits locally. That money is invested in Wall Street, not Main Street.
However, they do charge Hoosiers a premium to access health care.
Earlier this year, a Rand Corporation study found that hospitals in Indiana were charging among the highest prices in the nation. While the hospital association has been fighting this excellent study, it is surely correct. I am confident the Rand study is right because I mapped these hospitals and compared the Rand price data with the lack of competition in each health care market.
In places where there is little competition, such as Fort Wayne, consumers pay more than twice the cost for a typical medical treatment as they do in places with the most competition. This is how these hospitals accrued excess profits that are roughly 12 times larger than the entire state of Indiana’s Rainy Day Fund.
This windfall of profits has happened fairly recently. In 1998, the typical Hoosier spent $330 less than the average American for health care. We now pay $819 more per person than does the average American. The only factor that can explain this is growing monopoly power among our not-for-profit hospitals.
If you are not shocked by this, nothing can shock you. In a typical post-recession year, these excess profits were so large that they shaved almost 30% off economic growth in the state. Let me highlight some particularly egregious examples.
Parkview Hospital is the most blatant example. In one recent year, Parkview Hospital in Wabash earned a 48% profit rate. By comparison, Walmart, which also has a store in Wabash, had a profit rate of 3.12% that year. Parkview Hospital’s profit absorbed a full 4.1% of the county’s gross domestic product.
Using data from a ProPublica investigative website, I found IU Ball Memorial Hospital enjoyed a lavish 23.8% profit in that year. This was more than $100 million, or a full 2.5% of the county’s GDP. Despite this, the president of Ball Memorial recently begged the city of Muncie to subsidize new luxury apartments so his doctors could live downtown.
That subsidy will cost Muncie Community Schools more than $2 million, which just so happens to be about two days of profits at the not-for-profit IU Ball Memorial Hospital.
There are literally dozens of other outrageous examples reflecting an appalling lack of governance at not-for-profit hospitals.
To be fair, there are a few hospitals that choose not to participate in this plunder of their patients and communities. These good actors, along with the not-for-profit community as a whole, are hapless victims of this outrageous monopolization of health care in our state. I feel especially sorry for the faith-based community which will surely be linked unfairly to some of these institutions. They should be among the first to call for legislative intervention and governance change in these hospitals.
Local governments are also victims. The most profitable industry in our state pays no property tax and no income tax, but overcharges schools, and city and county governments for health care. There is almost certainly a tax reckoning coming for not-for-profit hospitals, which will add much to the coffers of local government.
Maybe the only good news in all of this is that this situation is a plaintiff attorney’s dreamscape. There is a $27 billion settlement pool alongside the most abundant evidence of anti-competitive behavior I have ever seen. If you lead a school, business or municipal government that has paid health care expenses in Indiana, find a good trial lawyer, or better yet a class-action specialist.
This news about Indiana is now attracting national attention as an example of a health care system run amok. This is the most shocking thing I have seen in more than two decades of public policy research.
Monopoly pricing at hospitals is likely a contributor to our state’s nearly 10-place decline in health rankings over the past two decades.
The most similar modern phenomenon I have witnessed is the effect of strip-mining on many Appalachian communities.
To place this in historical context, the profit rates at Indiana’s not-for-profit hospitals are larger than anything the Gilded Age robber barons were able to secure. In this observation is a final lesson.
In the process of vetting this study with several colleagues, I shared it with one lifetime Republican and veteran of two GOP administrations. His response was simply that this is the single best argument for Warren/Sanders-style health care reform he had ever seen. He is not wrong, and that alone should prompt quick legislative, regulatory and legal action.
Hicks’ editorial, along with my plight, demonstrate some of the greatest reasons for a major overhaul of our nation’s healthcare system. But let us not hold our collective breaths waiting for that to happen. It seems the health of constituents is not a priority in Congress.
About Bruce Gerencser
Bruce Gerencser, 62, lives in rural Northwest Ohio with his wife of 41 years. He and his wife have six grown children and twelve grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist. For more information about Bruce, please read the About page.
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I know that writing this post and making it prominently available will do little to stop certain readers offering unsolicited medical advice. It is not like I can ban them or anything. As long as I have a widely read blog and make it easy for people to contact me, I am going to receive emails, letters, telephone calls, texts, packages, and personal visits from pretend doctors. That doesn’t mean, however, that I can’t bitch about it. Praise Loki for the power of bitching, amen? Amen!
