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Tag: Chronic Illness

Depression: It’s the Little Things

Bruce Gerencser 16 Comments
nope

Thank you to everyone who has contacted me in recent months, asking me how I am doing, health-wise. Hopefully, this post will catch everyone up on my current status. Not a cheerful, “ain’t life grand” post, but I do try to be honest and forthright about my health.

I have suffered from depression most of my adult life, especially since being diagnosed with fibromyalgia in1997.

Over the past three decades, not only have I had to contend with fibromyalgia, I’ve had to deal with osteoarthritis and neurological problems (peripheral neuropathy) that are ever so slowly robbing me of my physical strength and ability to walk. My cane and wheelchair are never far away. Some days — most days — are cane days, other days are wheelchair days. Some days are cane and wheelchair days — days when I want to use my cane to club the thoughtless people who walk in front me, try to get in front of me, or just stand there ignoring the fact that I can’t get around them. If illness and debility have taught me anything, it is that some of my fellow humans are narcissistic, self-absorbed assholes who have no time or empathy or time for others.

Every day is a pain day for me. Some days, the pain is manageable and tolerable, and it fades into the background as I write or focus on other things. Other days, the pain is standing with both feet on my neck, threatening to turn me into a weeping, pathetic, suicidal man. Most days, are a balance between these extremes. I take my pain medications and muscle relaxers, try the best I can to function, hoping to live for another day.

Along with fibromyalgia, osteoarthritis. neurological problems, and chronic pain, I’ve had three bouts with skin cancer, my gallbladder removed several months ago, a labrum tear in my shoulder, torn menisci in both of my knees, severe lower back and hip pain, diabetes, and high blood pressure. Oh, and now, my red blood cell counts are low — very low. I have been on iron supplementation for the past month. I had bloodwork done today, and I have two doctors’ appointments tomorrow. One appointment is with the orthopedic doctor to see if the problem with my lower back — the disc space at L5 — has worsened, and then an appointment with my primary care doctor. If my red blood cell counts have not improved, I will have to have a colonoscopy and an endoscopy to check for internal bleeding. Since having surgery, I have had nausea, loss of appetite, and dull headaches. I have my eyes checked, nothing abnormal there. All told, since last Thanksgiving, I have lost 70 pounds. And not because I was trying to do so.

Healthwise, my plate is full. That said, I accept my life as it is. I am a realist. I don’t try to delude myself into thinking I am a young buck running through the forest in pursuit of a doe. I am a loving, kind, passionate man who, due to genetics, luck, environmental exposure, and personal lifestyle choices, has a body that is dying at a faster rate than others my age. I am a high mileage automobile that from a distance looks good, but closer inspection reveals a lot of wear and tear.

All of this I embrace and own. It’s my life, I have to live my life on the terms dictated to me by my body. Thinking happy thoughts, putting mind over matter, pretending things are different from what they are, provide no help for me. Even when I was a young man — a healthy, strapping, strong man who hunted, hiked, cut wood, and could bend the world to my will — I tried to see things as they are.

Having my father die at age forty-nine and my mother commit suicide at age fifty-four tend to give me a particular perspective. Visiting sick and dying church members in the hospital reminded me that life is short. My experiences with the sick and dead have certainly shaped my understanding of life, and I know the path I am on, healthwise, leads to a fiery furnace. No not Hell, silly. I am going to be cremated after I die.

My counselor has told me several times that it would be unusual for a person with the health problems I have to not be depressed. He knows I struggle with suicidal thoughts, but he also knows that these thoughts are driven by the chronic, unrelenting physical pain. Through kindness, compassion, friendship, and support, he keeps me from falling down the rabbit hole, never to be seen again (though thanks to the Coronavirus Pandemic, I have not seen him in nine months).

As many depressives will tell you, it is often little things that worsen their depression. For me, it’s not the chronic illness and unrelenting pain . . . it’s the little, unexpected things that push me towards the abyss. Things such as:

  • Falling and wrenching the shoulder that has the labrum tear
  • Constipation
  • Getting out of the house so I can take photographs, only to find out I left the SD card in the card reader
  • Emails and texts to friends who never respond
  • Health advice from people I have repeatedly asked to stop pretending they are doctors
  • People asking me, have you tried this, that, this, that, this, that, this, that, this, that, this, that . . .
  • Dropping a dish on my foot
  • Stubbing my toe in the dark on something that is not where it is supposed to be; something left on the floor by one of my grandchildren
  • Nothing in the refrigerator I want to eat
  • No Internet
  • The printers running out of ink or toner
  • Microsoft screwing my desktop computer with an update, and now I have to spend precious time “fixing” it
  • Needing a quarter for a shopping cart at Aldi and not having one
  • The batteries in the remote dying just as I get comfortable in my recliner or bed
  • Making an error in the checkbook
  • Store clerks who treat me as if I have a disease, or worse yet, treat me as if I don’t exist
  • Finding out last night’s dinner stained my favorite shirt
  • The DVR not recording a show I wanted to watch
  • No milk and I want to eat a bowl of cereal
  • People not wearing face masks
  • One of my children borrowing my tools one month, one year, five years ago, not returning them, and NOW that I need them, they are nowhere to be found
  • Looking out the back window at our wild, overgrown yard, hearing the taunts of the trees, bushes, and weeds, saying, WE WIN!

Silly stuff, I know. But, here’s what you need to understand: for those who live with chronic illness and pain, there’s a cumulative effect. Their lives are already filled to the brim with the struggles that come from their illnesses. It’s often all they can do to just get out of bed and live another day. So, when small insignificant things are thrown on top of their overload, it can and does bring them crashing down.

Try to remember this the next time you think your suffering friend is overreacting to a small matter: it’s not that one thing that is the problem; it’s the accumulation of numerous small things that have left your friend or loved one curled up on the bed wanting to 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.

You can email Bruce via the Contact Form.

Nerve Pain: Please, Don’t Touch Me

Bruce Gerencser 16 Comments
dont touch me

Many Fibromyalgia sufferers have days where they can’t bear to have someone touch them. The other day, Polly came into my office and started to put her hand on my shoulder. I barked, DON’T! Polly knows when I say this that I am having a “please don’t touch me” day.

Most days, the nerves in my skin are quite sensitive. This sensitivity is part of the problem I have with chronic pain. I hurt everywhere, from head to toe. It has been over a decade since I have had a day where I could say, I feel pretty good today. Fibromyalgia primarily affects the muscles. I also have osteoarthritis, along with chronic low back pain. Fibromyalgia+osteoarthritis+back pain+nerve pain=unrelenting chronic pain. Fibromyalgia+osteoarthritis+back pain+nerve pain+narcotic pain medication+muscle relaxers=less unrelenting chronic pain.

garfield pain

As anyone who lives with chronic pain can tell you, pain medications do not make the pain go away. They lessen the pain spikes and provide a break in the pain cycle. When normally healthy people take narcotics to alleviate pain, they often feel a buzz from the drug. Some people become quite loopy. That’s not how it is for people who are on a long-term pain management regimen (as I have been for over fifteen years). Unless the chronic pain sufferer takes narcotics like Dr. House — by the handfuls — it is unlikely that they will feel a buzz or become loopy. They will feel a lessening of the pain, a break in the pain cycle, but otherwise, they will be as normal as normal is for them.

On “please, don’t touch me” days, the pain medications don’t work like they normally do. I am unsure as to the physical reason for this, but I know that I can double my pain medication on a “don’t touch me” day and it has little effect. I just have to tough it out, knowing that the next day will be maybe, I hope so, likely better.

This past Friday, Saturday, and Sunday, I worked in the office, took care of some remodeling projects, cleaned house, and trimmed trees and bushes. I worked far longer and harder than I should have, but since I am unwilling or unable to stop doing so, I must live with the consequences. And, boy, oh boy, do the consequences roll in like a freight train! Today, and probably several more days thereafter, I will have to contened with pervasive, unrelenting nerve pain. I am definitely in a “don’t touch me” phase of life.

Why I am telling you this? Perhaps you know someone who lives with chronic pain. If so, perhaps this post will give you a little insight into what they might be going through. Perhaps you have seen them grimace when someone touches or bumps into them. They might be having a “please, don’t touch me” day. If they are anything like me, they will endure the pain for the sake of not appearing crabby or difficult. Chronic pain sufferers want to be seen as “normal”, and often they will silently endure the pain unintentionally inflicted on them by others.

People who know me well will generally ask how I am doing before hugging me or shaking my hand. (COVID-19 has lessened such close encounters.) Some friends and family members know how to read my face. As much as I try to hide the pain, it reveals itself in my face and eyes. I normally have sparkling blue eyes, but when I am in a lot of pain, depressed, or physically having a difficult day, my eyes will turn gray. I don’t know WHY my eye color changes, I just know it does.

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.

You can email Bruce via the Contact Form.

Fireworks and Medical Marijuana in Ohio

Bruce Gerencser 10 Comments
seniors smoke pot
Cartoon by David Granlund

Ohio has some strange laws when it comes to fireworks and medical marijuana. Ohio’s neighbor to the north, Michigan, is much more friendly towards fireworks and marijuana than the Buckeye state. Can’t beat Ohio State in football to save their lives, but Michiganders love smoking dope and shooting off fireworks.

Ohioans are not permitted to use fireworks, even though this law is routinely ignored or rarely enforced. We can buy fireworks in Ohio, we just can’t use them. The Ohio border with Michigan is littered with fireworks stores. Ohioans frequent these stores, buying large quantities of fireworks for their Fourth of July celebrations. Purchasers have to state that they will transport the fireworks out of state within forty-eight hours (Ohio Revised Code 3743.65). Wink, wink, sure. 🙂

The Dayton Daily News reports that Ohio might be entering the nineteenth century when it comes to fireworks:

Ohioans would be allowed to discharge consumer grade fireworks — firecrackers, Roman candles, bottle rockets and more — anytime, any day on their own property, according to legislation approved Thursday by the Ohio House.

The House voted 77-17 in favor of the measure, which now moves to the Senate for consideration. A similar bill is also pending in the Senate.

Lawmakers have long sought to clean up Ohio’s convoluted consumer fireworks law. Currently, Ohioans may purchase consumer grade fireworks but they aren’t allowed to possess or use them in Ohio. There is a long-standing moratorium on the number of fireworks licensed manufacturers and dealers.

The bill would eliminate the prohibition on possession and ignition of consumer grade fireworks and earmark a portion of taxes collected on sales for firefighter training programs.

Despite illogical existing law, safety advocates say lifting restrictions is the wrong way to go. The Ohio Fireworks Safety Coalition says there is no safe way to use fireworks and often it’s innocent bystanders, including children, who suffer injuries from amateur pyrotechnics.

….

House Bill 253 and Senate Bill 72, both pending in the Ohio Legislature, would lift the ban on consumers discharging such consumer fireworks. The bills would legalize “backyard” fireworks on private property year-round unless local governments pass restrictions.

Based on what Ohioans hear in their neighborhoods during the 4th of July, plenty of people are violating the current law. That could be a first degree misdemeanor with a $1,000 fine and up to six months in jail, but it rarely is enforced.

In 2016, medical marijuana was legalized in Ohio, albeit with numerous onerous, costly restrictions. (Please see Is Medical Marijuana Legal in Ohio?) Four years later, the program is largely seen as a failure, primarily due to the exorbitant prices charged for marijuana. Here in rural northwest Ohio, there are no medical marijuana dispensaries. Many local communities have enacted laws prohibiting dispensaries, and I don’t know of one local doctor who is willing to prescribe the drug. I had ONE conversation with my primary care doctor about the matter, and I learned quickly not to broach the subject again. I could get a doctor outside of this area to prescribe me medical marijuana, but I fear a random drug test by my primary care doctor — mandated by his practice — would throw my pain management into disarray. As it stands now, I have to jump through hoops just to get the Schedule Two drugs I am currently taking. I dare not risk having those drugs stopped, all because a drug test found marijuana in my system. Yes, this sucks. Welcome to the land of God, Guns, and Republicans. (Yes, religion, not science drives the anti-marijuana sentiments of many local physicians.)

I recently read a news story that reported that Ohio medical marijuana users were driving to Michigan to fill their prescriptions. Michigan marijuana is 50-90 percent cheaper than that which is sold at Ohio dispensaries. Even if I could get a medical marijuana prescription, I couldn’t afford it, and my health insurance does not cover marijuana.

I have thought about driving to Michigan to buy marijuana, but it remains a federal and state crime to transport it from Michigan back to Ohio. Some Ohioans have learned this the hard way. Nearby Fulton County sits on the border of Michigan and Ohio. The sheriff in Fulton County has been arresting people who bring marijuana across the state line, charging them with possession. That’s right. People with chronic illnesses and chronic pain are being arrested for trying to affordably alleviate their suffering.

The Columbus Dispatch reported two weeks ago:

Officials in Ohio’s medical marijuana industry have repeatedly said prices will fall once the state’s industry matures, and state figures tracking consumer costs support that notion.

But that state up north has a big jump on Ohio, having legalized medical marijuana more than a decade ago. In 2018, Michigan legalized recreational pot for residents over 21. (Sales began in December 2019.)

“Lots of people are crossing the border because Michigan is a mature market of 10 years,” said Jim Rice, a cardholder who lives near Cleveland and owns KAYA.IO, a cannabis transport company.

Bringing marijuana, even legal marijuana, across state lines is illegal. Ohioans can purchase the drug at a Michigan dispensary but are required to consume it before crossing back into their home state.

The two states are working on an agreement to let Ohio marijuana cardholders buy medicinal cannabis in Michigan and bring it back to their home state, but nothing is final.

Ohio provided a letter to medical marijuana cardholders that let them bring products from Michigan for 60 days after Ohio established a patient registry in December 2018 (the first dispensary opened a month later).

However, there was confusion among patients as to how long those letters lasted, said Tim Johnson, co-founder of the Ohio Cannabis Chamber of Commerce advocacy group.

It’s unclear how many Ohioans actually go to Michigan to buy marijuana, but in the spring a Michigan State University research group estimated that roughly 9% of the state’s legal cannabis is sold to out-of-state buyers, particularly those from Indiana and Ohio.

Ohio medical pot users risk arrest by shopping across the state line, and some card holders have said police in Fulton County, on the state line, were targeting them after they shopped in Michigan dispensaries and brought marijuana back into Ohio.

When questioned about high prices, Ohio’s medical marijuana industry officials point to a litany of regulations they must follow to comply with state law, and note that costs have fallen.

One unit of a marijuana product in Ohio was roughly $131 in the second week of July, down from nearly $800 per unit in June of 2019. The costs of specific products were not available.

A direct comparison between Ohio and Michigan prices is difficult because Michigan doesn’t track sales in the same way and prices for individual products vary, but patients say it’s clear.

“Things that cost $20 dollars here cost $5 there,” Rice said.

I love living in Ohio, but I wish Republican legislators — Republicans control virtually every major state political office — would put the interests of suffering Ohioans first. But, the overwhelming majority of these legislators worship Jesus, and if Jesus can suffer on the cross, what’s a little suffering for people with cancer, chronic pain, fibromyalgia, arthritis, and other illnesses? Just pray your pain away, right?

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.

You can email Bruce via the Contact Form.

Please Do Not Offer or Send Me Unsolicited Medical Advice

Bruce Gerencser 10 Comments

chronic illness

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.

unsolicited medical adviceI 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!

Let me conclude this post with several excerpts from articles that address the issue of unsolicited medical advice. The first article is titled, Your Unsolicited Health Advice Isn’t Just Irritating. It’s Damaging. Sarah Blahovec writes:

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.

In an article titled, Please Give Me Your Support, Not Unsolicited Medical Advice, Megan Klenke writes:

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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Living with Unrelenting Chronic Pain: Just Another Day in Paradise

Bruce Gerencser 8 Comments

pain-looks-good-on-other-people

I begin each day with pain. No matter how much medication I take, pain, from the bottom of my feet to the top of my head, is ever with me. There’s never a day when pain is not front and center, demanding attention. Afternoon turns to evening. Hopefully, I have felt strong enough to sit down in my office and write a few words for this blog. As I type this post, my hands remind me that osteoarthritis is my ever-present “friend.” Someday, I will push the keyboard away and say to the pain, “you win.” Not today, but no promise that tomorrow won’t be the end of my run. I fear what happens to me when I quit; when I say, “I have had enough.”

By the time the clock says 10:00 pm in the eastern time zone, my body says, “enough! I shan’t go any farther!” Two decades of struggling with fibromyalgia have taught me to recognize when it’s time to surrender for the day. “Wave the white flag, Bruce, and live for another day,” I tell myself. As I slump into my recliner, turn on Pardon the Interruption, and adjust the sound, tears come to my eyes. “Why live another day, knowing that tomorrow will be no different from today?” No matter how much I try to think happy thoughts and “put mind over matter,” reality reminds me that it is a bitch, a taskmaster with no concern for my suffering and pain. “Tough shit, Bruce. This is your life, deal with it.”

I hear the front door open. It’s Polly coming home from work. The clock strikes 2:30 am. We trade pleasantries, ask questions of one another, eat a snack, and finish the day off with The Daily Show. Now it’s time for the final act of the day, bedtime. I drag my pained, fatigued body to my side of the bed, plug my iPad into the wall charger, put on my Bluetooth headphones, and run one of the video streaming apps — usually Hulu. Of late, I am re-watching the Los Angeles police drama Southland. Polly touches me gently on my back and says, “good night.” I reply, “I love you.” Polly will quickly fall to sleep, but not me. Sleep for me will not come until pain and sleep medications do their work — that is, IF they do their work. Some nights, this process takes an hour. Other nights, it takes two, maybe three hours for sleep to win the victory.

And then, I do this all over again. There’s never a day without pain and fatigue. Never. I am not sure my family and friends understand this. Oh, they try, but for people who have not lived with never-ending, unrelenting chronic pain, there’s no frame of reference for them. How can someone “understand” that which they have not experienced? I photographed a local high school basketball game tonight — the first game of the season. As I entered the building, a school official said to me (and Bethany), “how are you folks doing tonight?” His voice rang with happiness and enthusiasm. He was what I call “chipper.” Before I could “think” of how I wanted to answer him, I blurted out, “do you really want to know?” His face told me that he was not expecting THAT answer. I quickly rescued him from the uncomfortableness of the moment. “Let me give you the standard human answer, “I’m fine. I am always fine!” And with that, I made my way to the gymnasium. Of course, I am not “fine.” I am sure some of you might be thinking, “Bruce, if you are not “fine,” why did you shoot the basketball game? “Why not stay home, rest, and take it easy?” Truth be told, it doesn’t matter where I am or what I do, I can’t escape the pain. Might as well try to do something I love to do than sit around and lose a few more brain cells watching TV. I know of only two “solutions” for my pain: death or pharmaceutical fog, neither of which I am willing to entertain. At least not today, anyway.

Knowing that the pain will never go away does give me a sense of certainty. I can’t escape the pain. All I can do is to choose what to do and where to go. Well-meaning people will say to me, “Bruce, I saw you at the store today. You must be feeling better!” “No, I am not feeling better. I feel like shit. My body feels like it has been hit by a truck — twice,” I have said to no one, ever. Instead, I pretend the well-wisher is oh-so perceptive. That’s the nature of the chronic pain game. Better to live a lie than burden (and bore) people with the truth. Rare is the person who really wants to know and understand how you are feeling. And that’s okay. I really don’t want to know about your hemorrhoids either.

Tomorrow begins the holiday season for the Gerencser family. Polly, along with our daughters, daughters-in-law, and granddaughters, will gather at our home to make pies — pumpkin, cherry, apple, and pecan — for Thanksgiving. If anything can temper my pain, it’s food, family, and football. If anything can give me a reason to punch the time clock for another day, it’s Polly, my children, and grandchildren. For them, I’m thankful.

Addendum:

The girls popped the first four pumpkins pies in the oven today and started cooking them. Fifteen minutes into the process, the power went out! We were without electricity for eight hours. We’ve had high winds today, and this led to an outage. Pie day was moved to our youngest daughter’s home. Just another story to add to Gerencser family Thanksgiving lore.

I hope you and yours have a wonderful Thanksgiving!

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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Updated: Local Southern Baptist Pastor Steve Eyers Opposes Helping People Suffering From Chronic Pain

Bruce Gerencser 2 Comments
medical marijuana suffering new jersey
Cartoon by Drew Sheneman, featuring anti-marijuana crusader Chris Christie

Four years ago, the Village of Hicksville, Ohio banned the establishment of medical marijuana facilities within its borders. The Defiance Crescent-News reports:

On Monday evening the Hicksville Village Council passed an ordinance prohibiting the establishment and operation of medical marijuana facilities within the village limits.

This is in response to previous sessions in which the possibility of such facilities coming to town was addressed, although no definite plans had been revealed to council by any such entities. Council had received strong support against these facilities by Police Chief Mark Denning and pastor Steve Eyers; no one has spoken out in their favor at any recent council sessions.

In February 2019, the Hicksville village council held a hearing on the matter. The Crescent-News reported at the time:

Pastor Steve Eyers of Lifeline Connect Church stated he has done sizeable research on medical marijuana since the last meeting and believed the jury to still be out, with no solid documentation existing substantiating positive claims about such facilities; he did observe that medical marijuana is not on the “approved” list of the Food and Drug Administration.

Eyers suggested council speak to state lawmakers and those in other municipalities which have approved medical marijuana production facilities about the results of such places, noting, “Once you open the door it will be difficult to close.”

As readers will note, the main objector to medical marijuana was Steve Eyers, pastor of Lifeline Connect Church. At a previous council meeting, Eyers, a Fundamentalist Southern Baptist, used the “slippery slope” canard to argue against medical marijuana. In Eyers’ world, every perceived negative (sinful) behavior is a step farther down the slippery slope that leads to Hell. I am sure Eyers believes that marijuana is a gateway drug, and once people start toking mary jane they will soon be hooked on crack, cocaine, heroin, or other highly addictive drugs. Funny how Eyers’ “sizeable research” didn’t turn up any evidence to the contrary:

The “gateway hypothesis” or theory refers to the idea that one substance — marijuana, in this case — leads to subsequently use and/or abuse other drugs. If [Governor Chris] Christie’s point is simply that the use of marijuana tends to precede the use of other drugs, then he is correct — but that’s not the whole story.

Though studies of large populations of people have indeed found that those who smoke marijuana are more likely to use other drugs, these studies show a correlation without showing causation — a commonly misunderstood phenomenon in science. In short, just because marijuana smokers might be more likely to later use, say, cocaine, does not imply that using marijuana causes one to use cocaine.

A 1999 report from the Institute of Medicine, which is part of the National Academy of Sciences, laid out this issue clearly (see pages 100-101): “In the sense that marijuana use typically precedes rather than follows initiation into the use of other illicit drugs, it is indeed a gateway drug. However, it does not appear to be a gateway drug to the extent that it is the cause or even that it is the most significant predictor of serious drug abuse; that is, care must be taken not to attribute cause to association.”

We spoke with several experts and reviewed the available scientific literature on gateway theory. Christie’s definitive statement is unsupported by evidence — there is some evidence in favor of a gateway effect, but the scientific community shares no consensus on the issue and there is little evidence on the underlying cause of that effect. — Factcheck.org.

Evidently, the good pastor was absent the day his teacher covered correlation and causation in science class.

There is no question that medical marijuana can and does help with many medical maladies, including chronic pain. Numerous readers of this blog can testify to medical marijuana’s efficacy and how it has improved their quality of life. It is absurd to oppose any drug (or treatment) that will reduce pain and suffering. But, Bruce, people might get “addicted’ if they start using medical marijuana. So what? Should it matter that a drug is “addictive” IF it’s helpful? Shouldn’t the goal be reducing pain and improving quality of life? Besides, moral crusaders such as Eyers usually confuse addiction with dependency. Addicts misuse drugs, using them for the sole purpose of getting high. Most people who use medical marijuana (and opioids such as Hydrocodone and Oxycontin) are not addicts. They use the drugs as prescribed to relieve pain and improve the quality of their lives. Long-term users can become dependent on such drugs, but, again, why does that matter? I have been on narcotic pain management drugs for fifteen years. Does this make me an addict? Of course not. I take the medications as prescribed by my family doctor. I have taken a variety of pain relievers over the years, but I have not, one time, abused them. Using these drugs for long periods has certainly made me physically dependent on them. If I were to stop taking Hydrocodone, for example, I would go through withdrawal. And believe me, that’s not fun. Several years ago, I stopped taking Tramadol. I had been using Tramadol on and off for managing mild pain for over a decade. It took months of suffering to successfully wean myself off of the drug. The withdrawal symptoms were so severe that I had to sleep in the living room so my thrashing and crying wouldn’t keep my wife awake. Yes, I survived, but at no time was I addicted to Tramadol. Dependent, yes. Addicted, no.

Count me as one person who is fucking tired of moralizing preachers such as Steve Eyers. First, they are hypocrites. Why did Eyers decide to take a stand against medical marijuana and not the drugs that are widely abused by Hicksville residents, including nicotine, caffeine, alcohol, and religion? Alcohol, in particular, causes all sorts of physical and social problems. Yet, crusading preachers are eerily silent on the subject — outside of an occasional anti-booze sermon. Why is that? Second, they attempt to force their personal or sectarian moral codes on others. There are times I wish that the Steve Eyerses of the world would come down with a debilitating, painful disease; one where relief could only be found through using narcotics or marijuana. Then, and only then, would they understand why chronic pain sufferers need drugs. Of course, I wouldn’t actually wish that on anyone, but there’s nothing like first-hand experience for revealing ignorant beliefs.

If Eyers and others like him want to live in pain, have at it. Taken literally as a moral prescription for living, the Bible encourages enduring pain and suffering. Just pray to God and trust that Jesus will be with you every step of the way, right? No thanks. As a humanist, my goal is to reduce suffering and pain, not only for humans, but all living animals. The greater goal is happiness and well-being for all. While suffering and pain can and do teach us valuable lessons, only Evangelical/Catholic sadomasochists think pain is desirable or necessary. Of course, when you believe the world is a shit hole ruined by sin, that all humans are born sinners/haters of God, that life is to be endured until the rapture, and that the grand goal is eternal life in Heaven, it should come as no surprise, then, that you don’t put much emphasis on the here and now.

Medical marijuana sale and use is legal in Ohio, and there’s movement towards making all use of weed legal (it could be on the ballot this November), All praise be to Shiva. Sadly, some Republican state legislators — who are overwhelmingly Christians — and regulators have gone out of their way to impede the opening of medical marijuana growers, processors, and sellers. Just over the border in Michigan, marijuana use is legal and much cheaper than Ohio’s medical weed. Sellers abound. Further, here in the Land of God, Guns, and Republicans, most doctors refuse to write prescriptions for medical marijuana. The insane government war against opioids has scared the shit out of medical professionals — fearing the loss of their licenses — so they refuse to act in the best interest of their patients. Ohioans can go to one of the few doctors approved to write medical marijuana prescriptions, but this could cause them all sorts of problems with their primary care doctors — including the refusal to treat in the future. (Please see How the War on Opioids Hurts People With Chronic Pain, Please Stop the War on Chronic Pain Sufferers, Medical Marijuana and Relieving Pain and Suffering, How Fundamentalist Prohibitions Cause Needless Suffering and Pain,  and Understanding and Helping Those Who Live With Chronic Pain.)

Years ago, I helplessly watched a devout Evangelical man suffer horrific pain as he slowly died of bowel cancer. He refused to take pain medications because he believed Jesus was better than morphine; that his suffering had some sort of redemptive value. My late father-in-law often went without pain relief because he believed drug “addiction” (I tried to explain to him the difference between addiction and dependence to him, without success) was sinful. As a pastor, I watched countless dying congregants forgo narcotic pain management because they wanted to be clear-headed when they entered the pearly gates. They needlessly suffered, and for what? Remove God and the afterlife from the equation, and I suspect most people will say YES to anything that reduces their pain.

If Steve Eyers wants to suffer for Jesus, have at it. All that I ask is that he not stand in the way of other people getting the help they need. Jesus is called the Great Physician. The gospels detail many of the healing miracles the Son of God purportedly performed while walking the dusty roads of Palestine. Be like Jesus, Steve, Be like Jesus. If you can’t heal people, Steve, at least let the sick and hurting among you have access to people and drugs who can.

Pastor Eyers lost his battle against weed. Four years after his lies and distortions before the Hicksville Village Council, a new marijuana dispensary opened ten miles from his church in the village of Sherwood. Hicksville said no to the dispensary, as did the village I live in. Both Ney and Hicksville council members put their religious and personal beliefs before what was good for their communities. Tax money that could have helped fund local services went — dare I say it? — up in smoke.

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.

You can email Bruce via the Contact Form.

Learning to Live With Chronic Pain When You Know It’s Never Going Away

Bruce Gerencser 14 Comments
suck it up garfield

The war against chronic pain sufferers continues unabated as they face being collateral damage in the government’s attempt to combat the opioid crisis. Numerous restrictions — almost all of them unnecessary or harmful — have been enacted in the hope that they will stem the illegal use of narcotic drugs. Unfortunately, the only result of these restrictions is to make it harder for chronic pain sufferers to get the medications they need. Just this past weekend, my Hydrocodone fill date fell on Easter Sunday. Thanks to new regulations, the prescription cannot be refilled sooner than one day before it was last filled (and within a fourteen-day window from the may fill date written on the script). In years past, I would have several weeks of Hydrocodone in reserve, just in case I didn’t get the prescription filled in a timely fashion. Not anymore; not filling the prescription on its fill date could leave me without medication. Fortunately, Meijer’s pharmacy was open for a short time on Easter and I was able to refill my prescription.

Last month, I took the script for my Tramadol prescription to the pharmacy to be filled, just to find out that the doctor had written the wrong date on the script — beyond the fourteen-day refill window. The pharmacy refused to call my doctor, telling me that I would have to get a new script. I was unaware that Tramadol was being treated the same way as Hydrocodone. Had I known this, I would have paid closer attention to the date on the script. Fortunately, I had enough Tramadol to last me until my upcoming doctor’s appointment.

Today, I read an article on The Outline titled, Is Chronic Pain Something More People Should Accept?  The article states:

Research dating back more than a decade suggests  that people with chronic pain may be able to improve their quality of life if they stop trying to avoid or get rid of their pain and instead learn to live as well as they can as the pain persists, a concept referred to in clinical settings as pain acceptance. Some psychologists and psychiatrists believe that pain acceptance might even help counteract opioid abuse in the United States, a problem so severe that it has contributed to a decline in American life expectancy. The idea that pain acceptance might serve as an effective alternative to opioids is an emerging area of research and not something that has been definitively established. As the idea attracts attention in the world of pain management and in the media, it has also generated controversy.

An estimated five to eight million Americans take opioids to manage long-term chronic pain, and the number of people in the U.S. who have died from overdosing on opioids — a class of drugs that includes prescription painkillers like oxycodone and illicit substances like heroin — has risen dramatically in recent years. In 2016, prescription opioids were involved in roughly 40 percent of opioid overdose deaths, according to the U.S. Department of Health and Human Services. There are plenty of people who don’t become addicted to prescription opioids, but taking them involves serious risks, from adverse side effects to the potential for dependence. A backlash against the drugs, from state laws limiting access to federal guidelines warning of their risks, has sent doctors searching for alternative treatments. In the midst of the crisis, some pain and addiction researchers are interested in determining whether pain acceptance could help people cut back on opioids.

Several studies have raised the possibility that people who are less accepting of pain may be more likely to become dependent on painkillers. A 2015 article in the journal Drug and Alcohol Dependence found that people who were better able to live with pain without attempting to reduce or avoid it had less severe problems with opioids. The study reported that pain intensity itself was not significantly associated with the severity of problematic opioid use. That led the authors to conclude that the extent to which a person accepts and adapts to pain, or doesn’t, may be “more important as a risk factor for the misuse of prescription opioids or heroin than is the actual severity of pain.”

In September 2017, an article in the Clinical Journal of Pain found that people who were more accepting of chronic pain used less pain medication, including opioids, regardless of the severity of their pain. “We think that’s a good indicator that increasing pain acceptance in people with chronic pain might reduce their reliance on pain medication,” said Dr. Anna Kratz, an assistant professor of physical medicine and rehabilitation at the University of Michigan who helped carry out the study. “They might turn less to medications on a day-to-day basis if they have more pain acceptance.”

….

It may not be surprising that people with chronic pain don’t necessarily like the idea of accepting it. When researchers at the University of New Brunswick asked women with chronic pain from arthritis and fibromyalgia what they thought about pain acceptance, many had a negative reaction. Most of the women associated acceptance with “giving up or giving in to their pain,” the researchers wrote in the journal Pain Research and Management in 2008. But many of the women had learned to live with their pain in a way that roughly aligned with the concept of pain acceptance: They were determined to live as well as they could despite their conditions. Rather than describing that as acceptance, the women preferred to use words like “embracing,” “coming to terms with” or “dealing” with their pain.

There’s no one way that people learn to accept and live with chronic pain. What works for one person might not work for another. But some individuals participate in a form of therapy called acceptance and commitment therapy — commonly referred to as ACT. Developed in the 1980s and 1990s, acceptance and commitment therapy emerged out of the tradition of cognitive behavioral therapy. In contrast to traditional cognitive therapy, acceptance and commitment therapy asks people to accept thoughts, feelings, memories, and bodily sensations that are beyond their control, rather than attempt to change or get rid of them. The therapy then encourages people with chronic pain to take part in activities that add value and meaning to their lives, even as pain persists.

….

In other words, people with unrelenting chronic pain just need to suck it up and embrace the fact that their pain is never, ever going away. The false assumption here is that chronic pain sufferers are not already doing this. They are, and reaching out to a broader pool of pain sufferers would have revealed this to the article’s author, Clare Foran. While a tip of the hat is given to the idea that the goal should be pain elimination, the gist of the article is the importance of chronic pain sufferers doing their part to combat the opioid crisis. Again, it is people who are on pain management regimens that are being singled out and expected to forgo needed pain meds, not because this would be better for them, but in doing so they give the appearance that something concrete is being done about the opioid crisis.

Most of the chronic pain sufferers I know are already “living” with their pain.” They have been sucking it up for so long that they have concave chests. Here’s a grossly under-reported fact: narcotic drugs, when taken as prescribed, do NOT take pain away. What these drugs are meant to do is level out what are called pain spikes. When this occurs, chronic pain suffers achieve a certain quality of life, often allowing them to work and do other things they would not be able to do without taking narcotic prescription drugs. Without taking them, life is unbearable, leading to depression and, at times, suicide.

I was diagnosed with Fibromyalgia in 1997. Since then, my health has deteriorated ever-so-slowly. As I have aged, osteoarthritis has spread from joint to joint, and today it’s found in my spine, shoulders, neck, hands, knees, and feet — pretty much everywhere. And then there’s a neurological problem that causes burning pain in my thighs, face, and lower back. There’s not a day or an hour that goes by where I don’t feel pain somewhere from the top of my head to the bottom of my feet. I take narcotics, then, so I can have some semblance of a life. Without these drugs (and others), I would not be able to write, shoot photographs, or attend my grandchildren’s sporting events. It’s the drugs that level off the pain highs so I can do these things, even though I know there is a price to pay for doing so. You see, all narcotics do is mask (reduce) pain. The underlying diseases are there, and, in my case, they are exacerbated when I do anything more than lie in bed and wish I could die. I know that doing physically active things aggravates my joints, nerve endings, and muscles. I ignore this outcome because taking photographs, going out on the town with my girlfriend, or attending a sixth-grade softball game are more important to me. I want to do these things, knowing that by doing so I will pay what I call “the price of admission.” The days after attending such events are, on a pain scale of 1 to 10, off the charts. All I can do is pray to Zeus, curl up in my recliner, and cry my way to a better day. On these kinds of days, narcotics do not give the advertised relief. They help, but not enough to allow me to do much of anything. I have to wait until pain levels reach “normal” levels.

Earlier this year, I agreed to take photographs for the local high school’s spring sporting events. I did the same for winter sports. The difference between shooting a basketball game and photographing a softball game is that for the former, I can sit, but for baseball and softball games I must stand.  And standing for longer than fifteen minutes is a big problem for me. If you have ever seen me walking through one of the local stores you’ve likely noticed that I am often hunched over the shopping cart (pride keeps me from using a battery-powered scooter). After about fifteen minutes of walking, my thighs and face turn numb and begin to burn. Hunching over the cart, brings some relief. In 2007, when this problem first appeared, I had an extensive neurological workup — $20k worth of tests. Doctors thought, at the time, that I had Multiple Sclerosis (MS). The tests came back negative or inconclusive. I have had three brain scans since then, but still no definitive signs of MS. So, for now, I live with the effects of an unnamed affliction (not that naming it would make a difference). Personally, I think the numbness and burning is related to my lower back and a narrow disc space I have had for twenty-five years.

Standing, of course, is impossible to avoid if I want to be a photographer, grandfather, or a living, breathing human being. So, I stand, and when the numbness and burning pain screams in my ears, I put a mental stick in my mouth, bite down, and bear it. I’ve done this countless times over the years, knowing that if I do this or that the pain — narcotics or not – is going to come in waves with no possible relief, save death. I wonder if the twenty-eight-year-old Clare Foran has ever experienced pain such as this? I doubt it. Had she experienced it, I suspect she wouldn’t have been so quick to preach the gospel of suck-it-up.

I wrote the above to say this: I have been “sucking it up” for two decades. I have made peace with the fact that my pain problem will be with me until I die. And I am fine with that. I am quite stoic about life. It is what it is. I accept that life for me means living with chronic pain and illness. There are no cures on the horizon, no magic drugs that will make life’s boo-boos go away. All that I ask is that the government and so-called experts quit fucking around with my pain management regimen. I am not an addict. I don’t abuse the narcotics I take, nor do I use illegal drugs. Am I drug dependent? Sure. How could I not be after a decade of taking narcotics. But dependency is not the problem, addiction is. I am dependent on blood pressure drugs too. Should I just suck it up and live with high blood pressure? Of course not. These drugs have likely added years to my life, as has taking narcotics. Without pain medication, I would have long ago put an end to my suffering. With the drugs, I am able to carve out a decent life for myself, not without pain, but with pain that is, on most days, manageable. I don’t expect doctors to fix what can’t be fixed. All I ask of them is that they do what they can to improve my quality of life. And for now, quality of life requires narcotics, along with anti-inflammatory drugs.

For those who say, just suck it up, I say, walk in my shoes and then we will talk. Until then, talk to the hand. Until you have experienced and lived with long-term, unrelenting pain, there’s really no frame of reference for you to understand how it is for chronic pain sufferers. And I hope you never have to experience such a life. I wouldn’t wish this on anyone. I don’t want pity, and I sure as hell don’t want lectures about what’s “best” for me (as a pharmacist and an optometrist once tried to do). I have a primary care doctor whom I trust to do what is best for me. I also have specialists I can see, if needed. I am in good hands, even if there are days when I can hardly bear to have those hands touch me. I will soon be sixty-one-years old. I know most of my life is now in the rear-view mirror. All I want now is to live what life I have left to its fullest, hoping that I see the Cincinnati Reds win the World Series before I die. Well, that and see my grandchildren graduate from college. I can then go to the happy hunting grounds in peace.

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.

You can email Bruce via the Contact Form.

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

Bruce Gerencser 14 Comments

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 NOT to Talk to Someone With Chronic Pain or Debilitating Illness

Bruce Gerencser 28 Comments

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?

Bruce Gerencser 15 Comments

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.

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