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Tag: Chronic Pain

Living with Chronic Pain and Disability: “It’s Not Too Far Away, You Can Walk it”

girls high school basketball february 24 2918What follows is a letter I wrote  several days ago to the athletic director at Miller City High School and the Ohio High School Athletic Association (OHSAA):

February 27, 2018

Dear Deb,

Today, I attended the Fairview vs. Spencerville High School Tournament basketball game. I arrived at the venue seventy-five minutes before the doors opened. I asked the parking lot attendant to point me to the handicapped parking spaces nearest the gymnasium. He had me park in the handicapped spots in front of the main entrance. Indeed, this allowed me a short, easy path to my seat.

After the game, attendees were required to exit via the doors opposite of where I entered. When I realized that this path was going to take me away from where I was parked, I asked a man handling crowd control to tell me the best way to get to where I was parked. I told him exactly where I was parked. Instead of allowing me (or anyone else who parked in the front handicapped spaces) short, easy access to my parking space, he told me I had to exit the far side of the building. He then said, and I quote, “it’s not too far away, you can walk it.”

First, how did he know what “not to far away” was for me? There was a reason I parked where I did, and I expected to be able to return to my vehicle via the same path I entered the venue. Second, how did he know I could walk it? Did he have magic powers that enabled him to divine my handicap and physical abilities? Not wanting to press the matter further, I walked the long hallway to the far exit and exited the building. I then had to walk around the building to the front where my car was parked. Needless to say, I was exhausted by the time I reached my vehicle.

I am writing this letter to make you aware of this issue, asking that you please address my concerns with the relevant people. In the future, if people parking in handicapped spaces are expected to exit the far side of the building, then the parking spaces should be on that side. If the parking spaces remain at the front of building, then handicapped attendees parking in them should be able to exit the venue the same way they entered.

Thank you for taking the time to read my letter.

Bruce Gerencser
345 East Main Street
Ney, Ohio 43549

I received a prompt reply from Miller City’s athletic director. She assured me the matter would be looked into and changes made so handicapped people don’t face this or similar problems in the future. I appreciated Deb’s thoughtful reply. As of the writing of this post, I have not heard back from the OHSAA.

I am a professional photographer. During the winter months, I attend local high school basketball games. I take numerous photographs, sharing them with the players and their families on Facebook. On a few occasions, I have even made a few bucks off my work. I thoroughly enjoy watching high school sports (both boys’ and girls’), so attending the games and photographing them provides a brief respite for me as I struggle with chronic pain and disability.

This past season, I attended thirty or so games. It’s tournament time now, so opportunities to see local teams play are becoming fewer and fewer. I have grandchildren in the Tinora and Stryker school districts, and my oldest granddaughter plays for Stryker, so I try to attend as many Tinora and Stryker games as I can. I live in the Fairview school district, so I try to attend their games as well. During the latest holiday season, I donned my red stocking hat as I attended games, leading to countless adults calling me Santa Claus, and more than a few children wondering if I was the “real” Santa. (Seriously, if I was Santa Claus, would I be spending winters in Ohio? Not a chance!) Bit by bit, high school players I have photographed have struck up conversations with me. I have learned much about high schoolers through these conversations. Attending games gives me opportunities to get out of the house, even when I don’t want to. As people with chronic pain and illness will tell you, they have to battle the tendency to want to curl up in a corner and be left alone. In my case, I know it’s good for me to be out and about, even if it causes my pain levels to rise.

In 1997, I was diagnosed with Fibromyalgia. Since then, the list of my afflictions continues to grow. I daily battle unrelenting chronic pain from the top of my head to the bottom of my feet. Over the weekend, I was sitting in my recliner watching TV with lover, friend, and caretaker, AKA Polly. All of a sudden, my left foot felt like it had been repeatedly hit with a hammer. My toe, if you can imagine this, was pulled back to about the ten o’clock position. For thirty or so minutes my foot throbbed with pain. I tried to walk, but I couldn’t. Finally, the pain subsided, the tears dried, and I returned to watching TV. Just another day in the life of a chronic pain sufferer. You never know what you’ll face on any given day.

I also have osteoarthritis in my neck, hands, hips, shoulders, upper back, lower back, knees, and feet. In other words, Uncle Arthur is my constant companion. Throw in high blood pressure, diabetes, incontinence, and bowel problems . . . well, life is grand. It is what it is. I embrace every day as it comes, grateful that I am still among the living.

When I attend public events such as the aforementioned basketball game, I plan my day carefully. I always arrive at least an hour early. This allows me to get parking close to the entrance, and it helps me avoid dealing with rude and inconsiderate people as they push and shove their way towards their seats. Arriving early also allows me to find seating that accommodates my handicap. At basketball games, I prefer to sit on the first row at floor level. I haltingly walk with a cane, so it is best for all involved that I don’t attempt to walk up or down bleachers. I have fallen on more than a few occasions. I suspect if three-hundred-and-fifty-pound Bruce Gerencser landed on someone it would cause serious harm. I do all I can to avoid contact with others.

Seating, of course, is not my only concern. I also have to contend with access to concession stands and bathrooms. I try to go to the concession stand when there are not a lot of people in line. Bathrooms provide a unique and, at times, harrowing experience. Public school bathrooms are supposed to be ADA compliant, but older schools are not required to follow the code. On several occasions I have had to back into stalls, shut the door, and then turn around just be pee. Zeus help me if my bladder is screaming, Gotta go NOW! Accidents happen, and all I can do is hope that no one notices the dark wet stain on my blue jeans. And going #2, as my grandchildren say? I avoid that like the plague. Everything from small stalls, cheap single-ply toilet paper, and my suspenders coming loose, conspire to make taking a dump — another euphemism for defecation which my grandchildren use — a nightmare.

I write all this to give some context as to why someone saying to me, “It’s Not Too Far Away, You Can Walk it” is a big deal. The last thing I need is for someone to dismiss my disability — even if the person does so innocently — because he was in a hurry, or just following the “rules.” I have learned that the only way for disabled people to be heard is for them to shout loudly above the noise of the crowd. In my case, shouting loudly means writing letters, emails, or blog posts. By doing so, I hope that people will be educated about the difficulties the disabled face when attending public events.

How the War on Opioids Hurts People With Chronic Pain

new pain schedule

Thanks to rampant opioid abuse, chronic pain sufferers face increased scrutiny and hassle when their doctors prescribe them narcotic medications for their pain. Five years ago, my doctor would write me a prescription for Vicodin with two refills. My Tramadol prescription had five refills. Today? I am treated like a drug addict, not because my doctor wants to treat me this way, but because state and federal law requires him to do so. Here’s what’s required today for me to get my pain meds:

  • I must see the doctor every two to three months at a cost of $175 per visit.
  • The script cannot be electronically submitted. The doctor must give me the scripts to take to the pharmacy.
  • The script cannot have any refills. This necessitates the doctor writing and giving me two or three scripts at a time.
  • The script must list what I am be prescribed the medications for.
  • The doctor must write the fill date on the script.
  • The doctor is required to fill out an opioid load report on me.
  • I am required to sign an annual pain management agreement that says my doctor can drug test me at any time without warning.

After I receive the script:

  • I have fourteen days to fill the prescription, from the fill date written on the script by the doctor.
  • In the case of refills, I can only fill the prescriptions twenty-four hours before they are due to be refilled.

Zeus help you if you lose a script or try to fill your prescription a day too early. You are immediately treated like a criminal. Today, Polly went to the Meijer pharmacy to have my prescriptions filled. The pharmacist and one of the techs had a discussion about whether I was trying to refill my Vicodin prescription too soon. The pharmacy tech had to explain to the pharmacists how to count to one. Worse yet, I didn’t know that the fourteen-day rule applied to Tramadol. It does, and because my doctor listed January 28, 2018 as the fill date, the pharmacist said the script was invalid and he refused to fill it (nor did he make any attempt to call the doctor to get the date straightened out).

I get it, people are dying from opioid addiction (primarily from Fentanyl use), but law-abiding chronic pain sufferers are facing increased indignities as government and law enforcement take a one-size-fits-all approach to illegal narcotic use.

A report posted today by KETV-7 aptly describes what many chronic pain sufferers are going through to get their pain medications. Reporter Rob McCartney writes:

But some say that war creates collateral damage, innocent victims who rely on those opioids to keep their chronic pain at bay.

Joni Pilmaier is one of those patients.

Her entire spine is covered with titanium rods and screws.

She had major surgery ten years ago, for scoliosis and osteoarthritis.

“I was hoping after I wouldn’t have any pain, but that big of surgery it’s not that surprising I guess,” said Pilmaier.

But a decade later she is still dealing with chronic pain.

The former occupational therapist tried physical therapy, spinal injections and bio-feedback.

The best relief though came from opioid treatment.

That medication helps Pilmaier just get out of bed and function at a minimal level.

When asked what she would do if she was forced to give up the drugs, Pilmaier said, “I don’t know. I’m not sure what would happen.”

But a lot of chronic pain patients have to face that very decision right now.

In trying to stem a flow of opioid overdoses, in 2016 the Centers for Disease Control released these Opioid Guidelines for doctors..

The CDC recommends a daily limit of 90-morphine milligrams (MME).

That would be a severe cutback for many patients.

Omaha doctor Kurt Gold prefers using a non-opioid methods [sic] like exercise to treat his pain patients. But he tells me about half of them can’t be helped that way because of painful, permanent nerve damage.

“In those cases I think opiates would be appropriate for them to continue so that they can function,” said Gold.

….

“In Nebraska, the suicides are going up. And as of 2016 we surpassed the national average for suicides per capita. That’s a problem,” said Gold.

The problem is caused by chronic pain patients who see their long-time access to medications reduced or even eliminated.

They think there’s no way out, preferring to end their pain forever.

“In my current practice I’m aware of seven patients that are suicidal. Seven people are on the brink,” worries Gold.

The State of Nebraska said it doesn’t track of why people commit suicide, but The Kim Foundation, an Omaha-based mental health and suicide support group, told me they do hear of that happening.

Pilmaier stresses she is not going to go to that extreme.

But she does see the desperation across the country, as she monitors several chronic pain chat rooms.

“Everybody’s extremely ticked-off at what’s going on,” Pilmaier said, “Some are saying, “Oh my God, what if it happens to me?””

Many pain patients, like Pilmaier, agree the government should go after people who are “gaming the system”. People who illegally obtain prescription painkillers.

But she says politicians should not tell doctors how to do their jobs, nor should they discount what many people will live with the rest of their lives.

“You need to walk a day in my shoes. You don’t know what it feels like to have pain every day, to wake up in pain, to go to sleep in pain. And to be in a climate where the only thing that helps your pain is being taken away from you…,” Pilmaier said shaking her head.

….

Jerry Mitchell, a reporter for the Clarion Ledger, writes:

Many chronic pain patients, who don’t suffer from cancer or other fatal diseases, worry they will become the casualties in the battle against the opioid epidemic.

“It’s like a war on chronic pain patients,” said Jaqueline Schneider, a 56-year-old Pittsburgh woman who suffers from two rare spine diseases. “Nobody mentions legitimate pain patients. It’s like we have the plague.”

She calls what is happening now “opioid hysteria,” saying the federal government’s “overzealous tactics … are creating fear in the chronic pain community.”

Many doctors and pharmacists fear they may become targets and are limiting the opioids they prescribe or distribute, she said. “It’s all trickling down.”

She is hardly alone in those fears.

Dennis Ewing Sr., a 61-year-old disabled printer in San Antonio, takes the equivalent of 135 mg of morphine a day for his intense spinal pain.

The U.S. Centers for Disease Control and Prevention has recommended health care providers prescribe no more than a 90 mg morphine equivalent and justify it whenever they go beyond that amount.

If reduced to that limit, “I wouldn’t be functional at all,” Ewing said, adding that he fears he might commit suicide in that case. “It scares the hell out of me.”

He has already changed pain doctors because the previous one took away his longtime prescription for muscle relaxers, which are the only way he can sleep, he said.

He knows he is physically dependent on opioids and would encounter withdrawal if he went off the drug, “but I’m not an addict,” he said. “I’ve been fighting this pain since the 1990s.”

Blogger Emily Falk writes:

I have lived in persistent chronic pain for 17 years. My body chemistry has physically changed to believe that pain is normal. I’ve gone through every test and every diagnostic procedure imaginable, and pursued every treatment available to me. I’ve repeated treatment options countless times hoping many of them will one day bring relief. I have adjusted my lifestyle countless times, changed my diet countless times, incorporated methods of healing from other cultures, pulled from all resources in Eastern and Western medicine and beyond.

I remain in constant pain, despite all my efforts. This abnormality is my normal, 24 hours a day, 365 days a year.

There are millions of people in this country alone who struggle with chronic pain every day, just like me. Chronic pain conditions are notoriously misunderstood and misdiagnosed.

For 17 years, I have taken painkillers to help manage my pain. I don’t take them every day. I don’t rely on them as a solution to a never-ending problem or view them as a cure. I take painkillers when I literally think about throwing myself into a wall because being unconscious is preferable to being in that much pain.

Yes, it is that extreme, because taking painkillers has never been a casual decision, for me or for my doctors (past and present) that prescribe them to me. Doctors shouldn’t prescribe painkillers unless they are absolutely, medically necessary and patients shouldn’t be reckless about taking them.

The uncomfortable truth that no one wants to talk about is some patients need painkillers to survive. Yes, need. This is not debatable. This is not politics. But myself and patients like me are severely punished in this war on opioid addiction. We are the people whose quality of life will be greatly affected, even though we have done nothing wrong and have taken our medication as directed. We are the people who are constantly shamed, every day, for this reality we live in and cannot change. And we are the last people who should apologize for needing this legitimate medical treatment.

….

Many people living with chronic pain conditions already live with constant guilt about their circumstances. The shame and stigma I have encountered living with a chronic pain has driven me to hide it from the world. It is only recently I have begun to speak openly about the side of my life I never let anyone see. Early on, my honesty was met with hostility and rejection. People don’t understand what they cannot see.

I chose to live a life that includes more than being a professional patient with four doctor appointments a month. But this choice comes with the price of being misunderstood even more. The daily physical and emotional struggles I have are enough. I don’t need government officials completely destroying the quality of life I have come to know with medication.

In an effort to save the lives of people who abuse prescription drugs or become addicted to illegal drugs, this “war on opioids” is setting up a medical system that will only bring misery to patients who are not addicted to drugs and in genuine need of painkillers. My rights and my fellow chronic pain patients’ rights are on the line. When you live in constant physical pain and you find something that provides you with any kind of relief, it cannot and should not be taken away.

Chronic pain sufferers are low-hanging fruit; easy targets for the DEA and state law enforcement as they wage war against drug addiction. Quite frankly, I am tired of being a target. But what other choices do I have? Without pain medications I would be dead, murdered by my own hands. The drugs I take provide me a respite from pain. Narcotics don’t make the pain go away, but they do lessen the pain and smooth out (on most days) spikes in pain levels. Is it too much to ask that, in the midst of my suffering, I not be harassed and shamed by medical professionals, pharmacists, and government officials?

bruce-gerencser-headshot

Bruce Gerencser, 64, lives in rural Northwest Ohio with his wife of 43 years. He and his wife have six grown children and thirteen 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.

You can contact Bruce via email, Facebook, Twitter, or YouTube.

Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.

A Plea From a Chronic Pain Sufferer: Please Be Aware of Others

not all disabilities are visibleI have spent the past two decades battling Fibromyalgia, osteoarthritis, and neurological problems. I say battling, but perhaps I should say, being BATTLED, by people who are often unaware of their surroundings. Not a day goes by without never-ending, unrelenting bodily pain. Even with being on narcotics and NSAIDS, along with steroids and muscle relaxers, I find that the pain remains. Without the drugs, the pain is unbearable. With the drugs, I can have what my doctor calls “quality of life” — quality, of course, being loosely defined and I suspect meaning something different to my doctor from what it means to me. I could take drugs that make me oblivious to the pain, but there’s no “quality” in such a life — at least for me. If I want to drive, attend my grandchildren’s school events, and photograph high school sporting events, I must accept a certain level of managed pain; pain that is not so severe that doing most anything is impossible.

In the eyes of many people, I look quite normal. Yes, I walk haltingly with a cane, and probably should have a “slow-moving vehicle” sign attached to my ass. Aside from this, I hide my pain well. Family and friends, of course, are well acquainted with my suffering, and usually go out of their way to make things easier and less painful for me. It is when I come in contact with the public that I often find myself beaten and battered by people who seem clueless about how their behavior affects others around them, especially someone such as myself, who doesn’t need any more pain added to his plate.

Tonight, I went to a high school basketball game. I arrive at games early so I can secure a front row seat. This allows me to have a court-level view of games. My daughter with Down Syndrome — we are quite a pair, she and I — usually sits in the row in back of me, slightly to the left or right of my back. By doing so, she typically wards off people from sitting in back of me. Not tonight. Ten minutes prior to the start of the junior varsity game, a middle-aged couple and their early-20s daughter planted themselves directly in back of me. For the next three hours, I was subjected to knees, feet, and purses being pushed into my back. After being battered during the first game, I decided to sit on the edge of my seat, hoping that this would place me beyond their reach. Unfortunately, the unaware batterers saw my move as an opportunity to increase their real estate, and the thumps, bangs, and jabs continued.

If I was a cranky curmudgeon, perhaps I would have asked them to stop, but instead, just as I have done for years, I endured their cluelessness. I don’t expect people to innately know that a chronic pain sufferer is sitting in front of them. That said, it perplexes me that so many people never learned to be aware of their surroundings, nor did they learn to pay attention to how their behavior affects others. My children were taught at an early age to pay attention to who is around them. Respect the space of others, and don’t do anything that could cause harm to someone else. I have been kicked half to death by more booted five-year-olds than I can count. Kids are kids, and I don’t expect them to necessarily understand respecting the person of others. However, these little kickers have parents who should, at their advanced stage of development, understand that their children beating on a man who looks like Santa Claus is not respectful and can, if Santa is so inclined, result in Little Johnny getting coal in his stocking on Christmas.

My children will tell you that I was hyper-aware of my surroundings, never wanting to do anything that would inconvenience or harm others. I passed this awareness on to them, and I see it in the behavior of my grandchildren. Learning simple things such as not standing in the middle of the grocery aisle blocking the lane or running up and down bleachers causing them to bounce — both of which can and do affect others — should be part of standard child training. My grandchildren have had to learn that, yes, I want to hug each of them, but they mustn’t launch themselves into my lap, causing me pain, or, in some instances, sending my testicles into my eye sockets. My grandchildren know that they must be gentle with Gramps, not because I will yell at them if they don’t, but because the fact of their doing so means they understand, at some level, my physical struggles.

I realize there will be times when people inadvertently run into me. Such is life. But what bothers me is people who seem to have no awareness of anyone but themselves. I feel, at times, when such people physically assault me, that they are saying to me, Hey old man, get out of my way. Move it, I have got places to go and people to see. (I do all I can to stay out of the way, knowing that other people are busy and have things to do. I consciously try to make it easy for people to avoid contact with me.) Smartphones have made such behavior worse. People zoned-out on their phones careen through stores and public places with nary a thought about the people around them. This is one of the reasons that I avoid department stores during the holidays. After being repeatedly banged into with shopping carts and oversize purses as women pass by, I find my anger increasing, and I begin to have thoughts of clobbering someone with my cane. I know having such thoughts is normal, but I find it better to avoid supermarket Mike Tysons if at all possible. On more than one occasion, my wife has arrived home from work at 1:30 AM and I have said to her, Hey, let’s go to the grocery! Why? you ask. Simple, there are very few people shopping at the local Meijer or Walmart at 2:00 AM. I don’t have to worry about cart kamikazes running me over or “important” people rushing through the store, binging and banging into people like a steel ball in a pinball machine.

Chronic pain sufferers, along with people with chronic diseases, will likely say AMEN to this post. They, unfortunately, understand exactly what I am talking about. My plea to healthy bipeds is that they be aware of the people around them and pay attention to how their behavior affects others. Kindness, compassion, and respect go a long way towards helping people such as myself to have public forays without coming home feeling like we’ve been hit by a truck. No one can cure me or make my pain go away. All that I ask is that they lift up their eyes and survey their surroundings. See the man walking with a cane? Don’t push your shopping cart quickly around him and then stop on a dime, forcing him to tense up his entire body to avoid running into you. See the man haltingly walking down the bleacher aisle. Wait. Let him get down the steps and on solid footing before you hop on the autobahn and swiftly pass him by. And above all, respect his personal space, as he most certainly does yours. Someday, you might be cursed to walk in his skin, and I guarantee you that you will then want people to pay attention and not do things that further hurt you.

About Bruce Gerencser

Bruce Gerencser, 60, lives in rural Northwest Ohio with his wife of 39 years. He and his wife have six grown children and eleven 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.

Bruce is a local photography business owner, operating Defiance County Photo out of his home. If you live in Northwest Ohio and would like to hire Bruce, please email him.

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How NOT to Talk to Someone With Chronic Pain or Debilitating Illness

new pain schedule

Several days ago, I received an unsigned letter from a sixty-four year old atheist woman. After reading my member introduction in the September 2017 Freedom From Religion Foundation newsletter, Freethought Today,  and rooting through my blog looking for personal health information, this woman decided to send me a typed two-page letter detailing her uneducated, ill-founded opinion of my weight and health, along with numerous paragraphs detailing what I should do to regain the Bruce of the 1970s.  At the end of her deconstruction of my physical being, she spent thirty-eight words complimenting me on my beard and thanking me for my story in the newsletter.

I sat on this letter for several days, waiting for my anger to calm before answering it. Yesterday, I talked to my counselor about the letter and why it is that people who don’t know me and don’t know my health background think it is appropriate to send me letters such as this one. It would be one thing if someone who was close to me talked to me about this or that health matter, but even then, no one, not even my wife, knows the depth and complexities of my health problems. People only know what I tell them, and trust me, there is a lot I don’t talk about. That I am willing to talk about my struggles with chronic pain and debilitating illness at all is deemed by zealots and nuts as an opening for them to preach their gospel — complete with shaming me for “sin” and using my children and grandchildren as bait to attract me to their particular way of life or “cure.”

I have received numerous letters from people offering unsolicited medical and lifestyle advice. Over the years, I have been told that the following will “cure” me or transform my pain and illness to a mere afterthought: essential oils, chiropractic care, magnets, acupuncture, reiki massage, homeopathic remedies, meditation, getting my chakras aligned, drinking magical shakes, and taking this or that supplement — more times than I can count. According to many of the people offering advice, Western medicine is evil, drug companies are out to kill me, and medical professionals are deliberately withholding care and treatment  that would cure me because they want to make money off my pain and health.

My latest letter writer takes a more simplistic approach, albeit she is every bit as ignorant of the latest science related to my health as the purveyors of the woo mentioned above. She contends that if I would just exercise more, lessen calorie intake, and not drink soda pop my life would be transformed. She assumes, of course, that I am NOT already doing these things, choosing instead to look at my photograph, seeing that I am fat/overweight/obese, and conclude that I am not following her prescription for having a born-again experience. The letter writer assumes that what worked for her will work for everyone else. She ignores the fact that human bodies are complex and what may work for one person won’t work for others.. She also ignores genetic and environmental factors, choosing instead to focus on my body size. In many ways, she is much like Evangelicals who attempt to deconstruct my life, refusing to allow me to tell my own story. Instead she takes her atheistic religious health experiences and uses them as a standard by which to judge me.

Simply put, the letter writer is not in the position to make ANY judgments about my health or offer ANY advice as to proper treatment. I have a primary care doctor, along with medical specialists who provide me necessary and adequate care. I am satisfied with their care, knowing that the health problems I have, for the most part, cannot be cured. All my doctors can do for me is try to improve my quality of life and lessen my pain. I have told my primary care doctor several times that I don’t expect him to fix what can’t be fixed. I have accepted that this is my life — live with it, Bruce! I know that my health problems began when I was a slim, trim athletic fourteen-year-old teen. Genetics, exposure to dangerous chemicals that landed me in the emergency room, and communicable diseases set the stage for how things are for me today. A near-death experience with mononucleosis in 1991 and two bouts with pneumonia left my immune system wrecked beyond repair. The letter writer understood none of these things, choosing instead to just see a fat guy who, she thinks, eats too much.

The letter writer is offended by my stoic, matter-of-fact approach to my life and health. I was diagnosed with Fibromyalgia twenty years ago, and with neurological problems in 2007. For a time, doctors thought I might have multiple sclerosis. The symptoms fit, but the tests, so far, are inconclusive. Over the past two decades, osteoarthritis has slowly marched its way through my skeletal system. A visit to an orthopedic specialist last year revealed osteoarthritis in my hands, knees, feet, lower spine, neck, and shoulders. In other words — everywhere. The combination of these three diseases (and joint injuries) has left me disabled — another word the letter writer hates. Tough shit. That’s what I am: d-i-s-a-b-l-e-d.  Most days, I walk with a cane, steadying myself so I don’t fall and break something. Sometimes, I use a wheelchair — a sign to the letter writer that I am giving up. (Want to guess how many times I wanted to say go fuck yourself as I read her letter? You will need all your fingers and toes.)

The letter writer spends most of her sermon preaching about my weight. Evidently, she doesn’t care for fat people, nor does she understand that body shaming is no longer considered acceptable conduct in polite company. Friends accept people as they are. I know I would never, ever write someone a letter like the one this woman wrote to me. Perhaps she thinks that because she is in her sixties, she has earned the right to say whatever she wants. I want to give her the benefit of the doubt, but it is hard to do so when I view her letter as a personal attack — an assault on who and what I am.

The letter writer reveals that she really doesn’t understand current scientific evidence about body weight and weight loss. She wrongly says that weight loss is as simple as reducing caloric intake. This thinking is patently false, and can, at times, be dangerous or even life-threatening. She also assumes that I don’t manage caloric intake and eat healthily. I do, about ninety-five percent of the time. Since last November, I have lost forty pounds. Massive bowel movements? Fluid loss? I don’t really care. I try to eat healthily, and when I do not, I don’t lose one moment of sleep over it. Life is too short. If eating ice cream is going to be the end of me, so be it. Praise Jesus, I will leave this life with the sweet taste of rocky road ice cream on my lips!

The letter writer tells me in capital letters, DO NOT EAT IN RESTAURANTS. This must be one of her religion’s commandments, and if it is, NO THANK YOU. Polly and I spent the first twenty-five years of marriage rarely eating out. We couldn’t afford it. Now we can, and me and the Mrs. plan on enjoying as much good food (and wine) as we possibly can. At home, my wife is a first-rate gourmet cook. She has the pans, knives, oven and cookbooks to prove it. Only food zealots would have a problem with what we eat.

The letter writer also shows a lack of understanding about pain and how narcotics work — wrongly believing that narcotics make pain go away. Sorry, but that’s not how it works. Massive amounts of narcotics might take pain away, but they also render people unable to do much of anything but sleep. I have been on a pain management regimen for twelve years. The goal is to break the pain cycle so I can have a better quality of life. Pain levels, rise and fall, but the pain never goes away. I haven’t had a pain-free day in years.

The letter writer tells me that a pain-free life is overrated, that I shouldn’t take narcotics (take aspirin or ibuprofen instead), and that since I AM taking narcotics I shouldn’t need to use a cane or wheelchair. According to her, if I would just lose weight, exercise more, all would be well and I would no longer have to use my cane or wheelchair. Calling my pain medications a crutch, she implores me to let pain have its way with me. This woman has serious health problems herself, including a major bout with cancer. I wonder how she might have felt had I come into the room after her surgery and told her what she had told me about pain. No need for morphine! Own your pain! Just take Aleve!

I am of the opinion that there is little value in ignoring pain or embracing it because there is some sort of nobility gained from not taking pain medications. Sorry, but I choose to live as pain-free of a life as possible. I choose to embrace my pain, but I am sure as hell not going to let it ruin my life by reducing me to an old man curled up in a fetal position wishing he could die. By properly managing my pain (and other aspects of my health), I have the ability most days to do the things I want to do. Some days, the pain meds simply don’t work. On such days, I endure, knowing that surely better days lie ahead. And if they don’t? Then I will embrace the present as my new normal.

you can do it

Finally, the letter writer should have plumbed the depths of my personality before sending her sermon my way. Had she done so, she would not have taken the motivational YOU CAN DO IT, OH YES YOU CAN approach. I loathe such approaches to life, and when someone tries to “motivate” me this way, their attempt always fails. I am a rationalist who approaches life in a matter-of-fact way. I don’t need anyone to cheer me on. I am quite capable of determining for myself what I need to do, and then doing it. And if I do ever need a bit of Richard Simmons-like motivation, I look to my wife, children, and grandchildren for reasons to get up in the morning and keep moving. I drove my ex-daughter-in-law crazy (as did her husband) because I wasn’t happy as a seal with a ball at parties and family events. I tend to be quite reserved emotionally, choosing to show my gratitude or praise with words such as fine, that’s good, good job, thank you, or I appreciate it. I don’t get all wide-eyed and slap-happy. People who know me understand that when I say something is fine, that is a high praise coming from me (except when I say fine when answering, How are you doing? Then, I am usually lying). I, for one, am quite tired of being treated as if there is something wrong with me if I don’t have excitable emotional outbursts when expressing my approval of people or events. Who decided that being all jacked up on Mountain Dew is the only proper way to respond to things?  (Please read Bright-sided: How Positive Thinking is Undermining America by Barbara Ehrenreich.) Fuck that. I am who I am, and I am quite happy with being the one and only Bruce Gerencser on planet earth. Woo! Hoo! Ain’t I a special snowflake!

Let me be clear, when it comes to my health and the medical treatment I receive, please keep your thoughts, opinions, sermons, and dogma to yourself. You may have stayed in a Holiday Inn, but you are not my doctor. I’m fine with close friends or family members sending me links and asking me if I have read this or that report or study. Most often, since I am an INFORMED sufferer of chronic pain and debilitating illness, I have already read the report/study. I appreciate that they genuinely care about me and hope that something will come along and improve my lot in life (money, lots of money – that will work). For everyone else? Please don’t. Don’t email me, don’t write me letters, and don’t post on my Facebook wall whatever it is you think will transform my life. Chances are it won’t, or I have already tried it without success. Love me as I am and when you hear of my demise, be it today, tomorrow, or ten years from now, I hope you will remember me for the good I have done. Like everyone else, I want acceptance and respect from others. This letter writer demonstrated neither.

About Bruce Gerencser

Bruce Gerencser, 60, lives in rural Northwest Ohio with his wife of 39 years. He and his wife have six grown children and eleven 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.

Bruce is a local photography business owner, operating Defiance County Photo out of his home. If you live in Northwest Ohio and would like to hire Bruce, please email him.

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Better to Try and Fail Than Not Try at All?

failure-homer-simpson

People who suffer with chronic illnesses are often accused of giving up or giving in. Irrational hyper-optimism has so infected the American psyche, that those who embrace their lives as they are often are looked down upon. Put mind over matter; never give in; be pro-active, always hope for a better tomorrow; these and other cheap clichés are often recited to the chronically ill, implying that their illnesses are somehow their own fault. If they would just take this drug, have this treatment, or see this doctor, then all would be well. An unwillingness to do these things is often viewed as laziness or giving in. Often, people take their own experiences and project them onto others, thinking that their outcomes would be the same for everyone if they would just follow the same course of treatment. People who think in this manner can often oppress and hurt chronic-illness sufferers, even when they don’t intend to do so. A recent health-related dust-up on social media has left me wondering if I should continue to write about my health problems and my battle with chronic pain. While I find writing about these things to be psychologically and physically helpful, sometimes the responses from readers can undo any of the health benefits gained from the writing.

I’ve repeatedly been told that I need to keep trying; that it is better to try and fail than not try at all. While I am sure people who say this to me mean well, I wonder if they have ever considered how such cheerleading can actually hurt those who are struggling just to make it to another day. I was diagnosed with Fibromyalgia 18 years ago. Since then, the laundry list of health problems I have has continued to grow. No matter how many doctors I see, how many tests I have, or how many different drugs I try, I still wake up every morning in pain. I know that there is no cure on the horizon. No magic potion is going to undo the damage done by two decades of fighting with the medical equivalent Mohammed Ali.

I have moments when I pretend that I can ignore my body and do what I want. Thanks to a decade of medical treatment, we are swimming in medical debt. Because of changes in our medical insurance, twenty-five to thirty percent of our income is spent on medical bills — mostly mine. I find it almost unbearable to watch Polly walk out the door every day, knowing that 25% of that day’s earnings will go towards my medical expenses.

Recently, I once again ignored reality and decided that I would get a job so I could help pay the medical bills. I need employment that will allow me to sit while I work and take frequent breaks. Showing up for an interview in a wheelchair or haltingly walking with a cane usually results in the interviewer telling me, thanks for applying. We will keep your application on file. So, as I did recently with an interview with Meijer, I pretended that I am not a cripple. And just like that they offered me a job. Would they have offered me the job if I was in a wheelchair or walk with a cane? I doubt it. I’m sure if I told them that I have arthritis of the spine and can only stand for 15 or so minutes at a time, they would have politely told me that they had no job for me. Yes, the law says employers must accommodate the handicapped, but in the real world a 60-year-old cripple has little chance of winning a job over a healthy 25-year-old. Discrimination against the handicapped and older prospective employees happens without employers ever saying a word. I try to remember back when I was young man responsible for hiring employees for the various companies I worked for. Young and able-bodied were always preferable to old and crippled. In the case of Meijer, they are so desperate for workers, that they were willing to hire a broken-down old man such as I. As my orientation day drew near, Polly and I had a heart-to-heart talk about whether I could really do this job. Mentally, I told myself, sure, I can do this. But, knowing that I can’t stand for longer than 15 minutes at a time means that it’s impossible for me to work the floor or run a cash register at Meijer. Polly, who knows better than anyone (including myself) what I can and can’t do finally persuaded me to not take the job. As is often the case when it comes to my health, she has a lot more sense than I do. I can deceive myself into thinking that I can do something, when Polly knows I can’t. This is not me giving up or giving in as much as it is accepting things as they are.

After turning down Meijer, I decided to try my hand at a work-from-home job with Amazon. I entered training with grand ambition, thinking that I had finally found something that I could do. Amazon’s training was quite extensive and grueling, yet I passed all the exams and was in the top five percent of my class of 650. Based on several conference calls with other new hires and management, I determined I was by far the oldest man in my group. Most of the new hires were in their twenties and thirties, as were many of the members of management.

Encouraged by Polly and my counselor, I continued to slog through the training even though I was worried about remembering everything I had learned. Both of them told me they were sure I could do the job.  After completing the  training, I was deemed a newly-minted customer service representative — ready to start taking live calls. I thought, I know I can do this. A part of me knew better, but all I could think of was our increasing debt, so I pushed my better judgment aside and answered my first call. The call started well — a man wanting to know why his order hadn’t been delivered — and then what I feared would happen, did. I couldn’t remember what I needed to do next. My mind literally froze — covered with a pain-laden, fatigued cloud. The customer became frustrated with me and hung up. After emotionally regrouping from my failure,  I took another call only to have continued cognitive problems. I could not remember what I needed to do. This customer, instead of hanging up on me started screaming, so much so that I hung up on her. After this call, I mentally collapsed, knowing that I was unable to do what the job required. Several days later, Amazon and I agreed that it was best if I resigned, and so I did.

The Amazon catastrophe has caused great psychological damage and pain. Pushed to the very edge of the abyss, my thoughts turned to suicide. While the suicidal thoughts faded after a couple of days, the assault on my mind remains the same. It’s hard not to feel worthless, that I am little more than a burden on my wife and family. They will certainly tell me that I am not, but it’s hard not to think that I am. This is usually the point where well-meaning people interject one of their cheap clichés about making lemonade when life gives you lemons. I am always polite when people say one of their Oprah-like maxims, but there are days when I want to tell them, until you’ve walked in my shoes, shut the fuck up.

If you’ve noticed in recent months that the volume of my writing has diminished, now you know why. Things are better than they were a month ago, but I’m far from being ready to tackle another job opportunity. I do have thoughts of trying to make some money using my photography skills. In particular, I am considering starting a real estate photography business. Several of my children have recently bought homes, and the common denominator with all the homes they looked at was that the property photographs were terrible. I mean a-w-f-u-l. I plan to send out letters to local realtors offering to do their property photography. Several years ago, I applied for such a job with a local realtor only to be told by her that I was so overqualified that she didn’t believe I would keep the job for long. I tried to explain to her that she need not worry about that, but her mind was made up.

I hope this new business venture will prove to be viable and profitable. If it’s not, we will be forced  to make some serious cuts in our budget. Hoping for a better day doesn’t change the fact that there are bills to pay. It used to be that it was easy to work out payment plans for medical debt, but now the physicians group my doctors are a part of will only make a payment arrangements for up to 12 months. After that, they demand you borrow the money to pay the debt. Last year, we had to borrow $5,000 to pay for my previous round of tests and procedures. While I’m not ready to throw in the towel, the daily pressure of these things makes it hard to focus on a better tomorrow. For those who have walked a similar path, you know what I’m talking about.

[signoff]

Bruce Gerencser