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Tag: Fibromyalgia

Giving In When It’s The Only Thing You Can Do

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If you are a sports fan, you have likely heard the late Jim Valvano’s speech at the 1993 Espy Awards. Valvano had terminal cancer. He died six weeks after giving his speech at the Espy’s. Valvano started The V Foundation for Cancer Research. Its motto is “Don’t give up. Don’t ever give up.” The idea behind this motto is that life is always to be valued above death, that we must keep fighting until the very end, that we must never give in or give up. This sort of thinking is on prominent display on social media and in countless books; a sentiment I can’t embrace.

Barbara Ehrenreich, author of Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America, had this to say about the positive thinking culture that permeates our society:

In other words, it [positive thinking] requires deliberate self-deception, including a constant effort to repress or block out unpleasant possibilities and ‘negative’ thoughts. The truly self-confident, or those who have in some way made their peace with the world and their destiny within it, do not need to expend effort censoring or otherwise controlling their thoughts.

Speaking of having breast cancer, Ehrenreich wrote:

Breast cancer, I can now report, did not make me prettier or stronger, more feminine or spiritual. What it gave me, if you want to call this a “gift,” was a very personal, agonizing encounter with an ideological force in American culture that I had not been aware of before—one that encourages us to deny reality, submit cheerfully to misfortune, and blame only ourselves for our fate.

Read your local newspaper’s obituaries, and you will find references to the dead battling, fighting, and persevering to the end. We know differently. Most people die with a whimper; the life sucked out of them by the diseases that afflict the human race.

I am dying. Maybe not today or tomorrow, but I am nearing the end of my life. Well-wishers tell me to keep fighting. Preachers of positive thinking tell me that I need to think good thoughts. It seems that people want me to deny reality and construct a false narrative, one of rainbows, puppy dogs, and happiness. People mean well, but as I become sicker, I find their cheerful, syrupy words unhelpful. In fact, I often find their words irritating and depressing. I find myself thinking, “can’t you see me?” Perhaps they can’t bear the thought of me dying. They can’t imagine their world without me. And so, the mass delusion continues.

Even if I were a healthy sixty-four, I am still nearing the time when I join Toto over the rainbow. If I lived to be 70, my life is 91% over; if I live to 80, 80% of my life is in the rearview mirror. I am not, however, healthy, and I never will be. I see no magical treatment on the horizon, no drug that cures me of what ails me. All my doctors can do is treat my symptoms and try to reduce my pain. Yesterday, I saw my primary care doctor. I had an EKG, a chest X-ray, and blood work. I will likely have a CT scan soon.

Four months ago, I started having pain in my left side. Typically, when I have such pains, I think “fibromyalgia.” However, such pains typically ebb and flow. This excruciating pain has, instead, spread to the middle of my back and under my arm. I spend most of my waking hours on the couch, trying to lie just right to lessen the pain. Pain medications are not effective with this pain, so I endure.

As you may know, I was diagnosed with gastroparesis — an incurable disease — earlier this year. I have lost 115 pounds, have little appetite, and frequent bouts of vomiting. I take medications that “help” to some degree with the symptoms, but there’s no cure for gastroparesis, so this is my life.

And then there’s Uncle Arthur — osteoarthritis. The X-rays I had done yesterday showed more arthritis in the spine. I am beginning to wonder if it would be simpler to list the places where I DON’T have arthritis.

I write this post, not to solicit sympathy, but to make a point about why it is okay to give in when it is all you can do. A week or so ago, we went to Whole Foods in Toledo. As I haltingly walked in the door, I veered to the left, away from Polly to the motorized carts. Polly watched as I stood there for what seemed the longest time. She came over to me and asked, “what are you doing?” I replied, “I am thinking about using a cart.” You see, I have never used a motorized cart or my wheelchair in a store. Whether due to pride or some sort of warrior complex, I refuse to use a cart.

I know that the no-cart/no-wheelchair days are over. No amount of positive mental thinking will change the fact that my body is broken beyond repair. IF I want to go to the store with Polly, I must use a cart. The battle, then, is psychological, not physical. I must embrace life as it is. I must be willing to give in.

I choose to embrace my life as it is, not how I might want it to be or how others want it to be. I choose to be a realist and a pragmatist. Bruce, this post is so damn depressing. Yep, and so is life. All I know to do is accept what comes my way. Unlike Jim Valvano, I have come to see that it is okay to give in; that I am not weak or a failure if I do so. In the end, Valvano and I will end up in the same place.

Bruce Gerencser, 68, lives in rural Northwest Ohio with his wife of 47 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.

I’m Tired . . .

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My vision is increasingly blurred. Short distances, long distances, it matters not. I stopped wearing my glasses months ago. I’ve been to the eye doctor twice in the past month. She’s been my doctor for years. Yet, she doesn’t understand my health problems. This is the doctor who showed how clueless she was when she told me that the “cure” for fibromyalgia is removing my amalgam (mercury) fillings. Her source? Her aunt, who had fibromyalgia, was miraculously cured after having her amalgam fillings replaced with resin fillings.

On my first visit last month, I told her that I was recently diagnosed with gastroparesis — an incurable disease. She had the same level of understanding about this disease as she did fibromyalgia. No big deal. She not a medical doctor, a neurologist, or a gastroenterologist. It would be nice if she educated herself on gastroparesis and fibromyalgia, but she’s busy, and these diseases aren’t health problems she typically deals with. However, when attempting to explain why I’m having blurry vision and my prescription has dramatically changed, she suggested that these things could be caused by, you guessed it, the gastroparesis and fibromyalgia she knows nothing about.

What astounded me most was when she told me that she hoped I got better soon. I am used to such well-wishing by non-medical professionals. People feel the need to say “something,” so they send good thoughts my way or tell me they hope I will be better soon. However, when I’m paying doctors good money to provide me competent, educated care, I expect honesty, not meaningless well-wishing.

I’m sick, I’m tired, and I’m tired of being sick and tired.

I love Polly.

I love my six children and their spouses.

I love my thirteen grandchildren.

I love my friends.

I love watching the birds at our feeders.

I love watching wildlife stop by at night, eating whatever food scraps we have put out for them.

I love watching the feral cats frequent our yard, eating the food we put in the “cat” house for them.

I love writing for this blog.

I’ve even grown to love some of you.

Yet, no matter how much I love others and want to live another day for their sake, I’m increasingly tired. There’s no hope of better days — just better bad days. A good day is one when I don’t throw up.

Every day, and I mean EVERY day, is a struggle. The pain, nausea, and debility, never go away. There’s no “better” tomorrow for me. No miraculous healing forthcoming. I’m a pragmatist, a realist. I see things as they are, not as I wish them to be. Maybe I’ll live a year or two or even ten years. Maybe not. Maybe I will die of “natural” causes or maybe I will die by my own hand. Or maybe, I will trip over the damn cat and break my neck on the way to bathroom.

Love is what sustains me. Today, that is enough.

But, I’m tired . . .

Bruce Gerencser, 68, lives in rural Northwest Ohio with his wife of 47 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.

Bruce, You Must be Feeling Better

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pain looks good on other people

Yesterday, long-time reader and friend, Charles, complimented me on some of my recent writing, saying:

The several articles you put up today are very timely—-news wise—–and they are some of your best work.

I always appreciate such comments. I have never been a good judge of the quality of my work, so kind, thoughtful comments are always appreciated.

What I want to address in this short post is what else Charles said. Let me be clear, I am NOT taking Charles to task for saying this. I love and appreciate Charles, but there’s a teachable moment here that I think readers might find helpful.

Before complimenting me, Charles said:

You must be feeling better Bruce.

As countless readers, friends, and family members do, Charles sees a connection between “good” writing and how I feel physically. If my writing is perceived as “good,” then I must be feeling better. However, as my editor and my wife can tell you, some of my best work was written on days when I was quite sick, even suicidal.

I no longer have good days. I have no prospect of feeling better. The health problems I struggle with aren’t going away, and, quite frankly, they aren’t, on most days, very well managed. Writing, then, becomes a distraction of sorts, a way to take my mind off my pain and suffering. As I sit here typing this post, my body pulses with pain — and that’s after taking this or that medication. What writing does is direct my mind away from the spectacle of my life. Writing can be, for me anyway, a pain reliever of sorts. Think of it this way: your foot is throbbing with pain. You pick up a hammer and hit your hand. Problem solved. Your foot doesn’t seem so painful. This is exactly what writing does for me; a distraction that, for the time I am clicking away on my IBM keyboard, mentally reduces my pain.

Two weeks ago, I had a procedure done to temporarily lessen or stop the pain I have from gastroparesis. Unfortunately, it did not work. What treatments are left for me? Just do a Google search on “treatments for gastroparesis.” Doing so left me in despair. I have concluded that I must find a way to live with this, or not. Today, I chose to eat lunch, knowing that it would leave me feeling like I had been slugged in the abdomen. I don’t plan to give readers a running commentary on my difficulties. I just don’t have the wherewithal to do so anymore. Know that when you don’t see me post for a few days, it is for one reason alone: I can’t. And when I do post, it’s not because I “feel better,” but I do feel well enough to drag my sorry ass from the couch to the office, turn on Spotify, and write a few words that I hope readers will find helpful.

I know readers such as Charles genuinely want what’s best for me. They want me to feel better or find relief from my pain. I make no judgment on the well-meaning words of others. It beats being told by an Evangelical critic that he hopes I die and burn in Hell for eternity.

There are no more “feeling better” days ahead for me. I have resigned myself to that fact. Unless a revolutionary cure or miraculous healing comes my way, I know what lies ahead for me. And that’s okay. Not really, but hell, what am I going to do about it? Pray? Seek out a faith healer?

When you see another post by me, I hope you will say, “awesome, Bruce, is among the living!” And when the day comes when I can no longer write, please know, I will be forever grateful for your love and support.

Bruce Gerencser, 68, lives in rural Northwest Ohio with his wife of 47 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.

Bruce, the Fixer

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fix it man

Earlier today, my good friend Brian Vanderlip said:

Hey Bruce, Practice resting and see if you can beat me at it! I have this theory that all those damaged by the fundy virus are unable to relax without guilt making it impossible to sustain or nearly so. I sit and read for a while and then get up because I feel guilty… Just for taking it easy with a book! That guilt-free time of rest and reading is what I wish for you, my friend, and the strength to venture forth with your camera. Pope Brian has absolved you of your ignorant disdain for cheese with burgers and your foolish nonsense about toilet paper rolls being hung any old which way. (Comment on the post Living with Fibromyalgia.)

Brian is the son of an Independent Fundamentalist Baptist (IFB) preacher, and, much like myself, a crusty curmudgeon. I love Brian’s numerous turns of phrase, while at the same time making thoughtful points and observations.

In today’s post, I want to build on what Brian said about how our former religious beliefs and practices made it almost impossible to rest; that attempts to rest and relax often brought feelings of guilt. Spend decades and decades in such an unhealthy environment, and it leaves deep, lasting psychological scars. Even after divorcing Jesus and walking (running) away from Evangelical Christianity, some of us have trouble getting away from the pathological need to be perpetual motion machines. In my case, I spent my life fixing things that were broke: churches, marriages, and relationships. When I was looking for a new church to pastor, why was I so drawn to dysfunctional churches that would require herculean efforts to fix? I hope to answer this question and others in this post.

One question that comes to mind, at least for me, is how much obsessive-compulsive personality disorder (OCPD) plays a central part in my restless need to fix things. Was I always this way? Did my staunch Fundamentalist Baptist upbringing fuel my OCPD? I am not sure I can adequately answer these questions. All I know for certain is that from my teen years forward I’ve been a restless person, always looking for the next conquest. I can look back over my life and it is not hard to see a man who was a wanderer, someone who was never satisfied. Of course, it was my religion that taught me to never be satisfied with self. I was taught and then taught others that we sinned daily in thought, words, and deeds. There could never be a good day, a sin-free day, a day when I felt that Jesus wasn’t lurking around the corner, ready to punish me for my indiscretions and failures. Even as a Calvinist — a sect that speaks much of and glories in God’s grace — I never had a day where I felt that everything between me and Jesus was a-okay. Calvinism is inherently a works-based religion. True Christians® must persevere until the end to be saved, and even then God could say to you, “HA! the jokes on you! You never were one of the elect. It’s Hell for you, buddy.”

As a pastor, I believed most Christians were quite lazy. How dare they fritter their lives away while there was work to do building the Kingdom of God. Hell is hot and Jesus is coming soon, I thought at the time. How dare we lounge around and relax while there were souls to save! So I was quite driven to labor in God’s vineyard. Didn’t Jesus say:

I must work the works of him that sent me, while it is day: the night cometh, when no man can work. (John 9:4)

I suspect my personality made it easy for me to work myself to death serving Jesus. I carried the same work ethic into my secular employment. I worked hard, never missed work, and rarely took days off. I was drawn to management jobs that allowed to me to work, work, work. For many years, between my church and secular employment, it was not uncommon for me to work 60+ hours a week. Polly not-so-fondly remembers the days when I would go to work in the morning, come home, shower, and head for the church, returning late at night. Day in day out; six, often seven days a week. I am not looking for a medal here (or condemnation). I recognize that my driven personality caused harm to my family, and materially affected my health. But, you can’t understand the man Bruce Gerencser without understanding what I have shared thus far.

This behavior when on for decades. The churches I pastored loved me because I was willing to be a full-time pastor while working a full-time job outside of the church. Churches loved my passion and zeal, my commitment and devotion. And I did it all for Jesus. Well, that and the fact that I really craved being busy. I was, in every way, a textbook workaholic. It certainly wasn’t for the money. Our family made more in 2020 than I made in eleven years pastoring Somerset Baptist Church in Mt. Perry, Ohio. Now don’t read too much into that. It’s not that we are well off. We’re not. It just that the churches I pastored didn’t pay well, and not one church I pastored provided insurance or retirement. I don’t blame these churches, per se. After all, I was the CEO. Why didn’t I ask for (demand) a better salary and benefits? On the other hand, why did the deacons/church board/congregants never raise the issue and demand the church take better care of its preacher?

Truth be told, I would have worked for free. I was so in love with Jesus and the work of the ministry that I practically took a vow of poverty. When the churches I pastored had money problems, I was first in line to say, “don’t worry about it. Just don’t pay me this week.” Of course, I never thought I would be a broken-down sixty-three-year-old man unable to work. Choices made decades ago have now extracted their due in the sunset years of my life.

Since how much money I was to be paid was never the object for me, I focused on the work of the ministry: preaching, teaching, evangelizing, street preaching, teaching Christian school students, cutting firewood, shoveling snow, working on church vehicles, remodeling church buildings, and daily ministering to the needs of church members. My motto? Better to burn out than rust out.

Over the course of twenty-five years, I pastored/worked for seven churches. My pastorates were either long in tenure, or quite short: 8 months, 2 1/2 years, 11 years, 7 months, 7 months, 7 years, and 7 months. (What was it about the number seven, right?) What I do know is that I wasn’t very good at determining “God’s will for my life.” I have always had a hard time saying no. Take my short time at Victory Baptist Church in Clare, Michigan — a now-defunct Southern Baptist congregation. After I sent my resume out to Southern Baptist area missionaries, it was only a matter of days before my phone was ringing off the hook — calls from churches looking for a pastor. I was thirty-five years old at the time, with three children still at home. And, my wife played the piano, and both of us sang special music. Woo hoo! Just what churches were looking for! You would think that I carefully considered each of the 15+ churches that contacted me. Surely, I did that, right? Sadly, I did not. Victory Baptist was the first church that contacted me. First come, first served.

We traveled to Clare and I preached for the church one Sunday. Nice people. Friendly. But, oh my God, dysfunction was on display everywhere I looked. I should have run away, but instead, I agreed to come back and preach for them again in two weeks. Afterward, the church asked me to become their pastor (and the former pastor remained in the church). I should have said no. Everything in Polly’s reaction said to me, “just say no, Bruce.” But I ignored my intuition and my smart and sensible wife, choosing instead to come and “help” these really, really nice people. Victory Baptist was a church I was sure I could “fix.”

While the church had its largest attendance while I was their pastor, seven months later I was out the door. My idea of what the church needed to do to grow and prosper was very different from that of the entrenched, indolent power base. The former pastor’s wife said in a public business meeting before I left, “Bruce, your vision for the church was never our vision.” I warned the church that I would not fight with them, but they wanted to fight anyway, so I resigned. THE issue? Toys in the nursery. Toys in the nursery? Yep. A long-time member of the church hauled into the nursery a bunch of outside yard toys, many of which were dangerous for toddlers. I told her it was not a good idea and removed them. (Our insurance agent would have told her the same thing.) Livid, she took the matter to the deacons. Three days later, we were sitting back in Ohio. Not one church member said goodbye or helped us load our moving truck. This would be the last church I pastored. I was done.

Underneath the story of my life courses a restlessness that drives me to work, work, work. No time for rest, not because of God or some sort of divine calling, but because it’s who I am. I am happy to report that I do rest and relax more now than I ever have. Good news, right? Progress. Not really. You see, my health problems are what have forced me to take it easy. I don’t want to, but I really have no choice. That is, IF I want to live. So, I crawl kicking and screaming to the couch, fretting over what I call the tyranny of the to-do list. Every week and month I get farther and farther behind. Maybe I just need to set my to-do list on fire! Problem solved.

I have, in the past year, rediscovered my love for Lionel O-Gauge electric trains. With the help of two of my sons and Polly, I am building a layout in one of our unused bedrooms. And I promise — I really, really do — that once this is done, I am going to rest.

Bruce Gerencser, 68, lives in rural Northwest Ohio with his wife of 47 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 Fibromyalgia

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fibromyalgia 2

I thought I would share with my readers a bit about living with fibromyalgia. In 1995, I started feeling fatigued and had a lot of muscle aches and pains — not from overwork or any of the daily physical activities I engaged in. I just felt tired all the time, and my body ached from head to toe. After months of feeling this away, I sought help from doctors; a two-year exercise in frustration and futility. One doctor suggested that it was all in my head; that I was still grieving for my mother who died in 1991. I blew up at this “esteemed” physician, shouting at him in no uncertain terms, IT’S NOT IN MY HEAD!

I was a thirty-five-year-old pastor who, up until that time, could physically do whatever he wanted to do; from playing sports to cutting wood to car repairs to construction work. Why was I fatigued? Why did I hurt all the time? Those are the questions I wanted answered.

In 1997, I saw a new doctor in Montpelier, Ohio. For the first time, I had a physician who actually listened to me. Twenty-five years later, this man is still my primary care doctor, and most all, my friend. Doc wasn’t a miracle worker. He found my symptoms troubling, yet tests came back normal. Of course, the reason for this is that fibromyalgia is a diagnosis of exclusion. Other diseases such as multiple sclerosis and polymyalgia must be ruled out before a doctor can determine whether a patient has fibromyalgia.

For several years, I sponsored and moderated a Christian email discussion list called CHARIS (the Greek word for grace). One of the list participants was a sickly man who was an invalid. After mentioning my health problems to list members, this man contacted me and suggested that I talk to my doctor about fibromyalgia. This “providential” conversation resulted in my doctor diagnosing me with fibromyalgia. Nothing changed for me, per se. Just because you have a diagnosis doesn’t mean that all of a sudden you are on the path to healing. What the diagnosis did say to me is that my pain was not in my head; that what I was dealing with was real.

There’s no cure for fibromyalgia. Symptoms vary widely, and most fibromyalgia sufferers are women. Twenty or so years ago, I drove to the Williams County Fairgrounds to attend a fibromyalgia support group. I felt, at the time, very alone. Few people seemed to understand what I was going through. Even my family was perplexed. What happened to Bruce, to Dad?

I arrived at the support group meeting thirty minutes early. Typical Bruce Gerencser behavior — always early. My children (and Polly) have oh-so-fond memories about my lectures on being on time; that you should always be early. As I sat in the fairground parking lot, I watched as people filed into the meeting. I quickly noticed that there were NO men, I mean none. Every group member was a woman. I thought, “these women will never understand what I am going through.” So, I decided to not attend the meeting and drove home. Years later, I started blogging, and my readers became my support group. I learned that woman with fibromyalgia did, in fact, have a lot to offer me, namely understanding.

No two fibromyalgia sufferers have the same symptoms. On a scale of 1-10, I am on the 10 side of the spectrum. Fibromyalgia has affected every aspect of my life, bit by bit robbing me of the man I once was. People in my life have a hard time accepting that fibromyalgia is an incurable disease; that all that can be done is to manage the symptoms. And yes, I have read the books that suggest otherwise. Just don’t . . . whatever book title you are going to suggest or website you think will really help me, trust me, I know about it. Twenty-five years of dealing with fibromyalgia have helped make me an expert on the disease. I have read numerous books, websites, and studies about fibromyalgia. I have had to deal with well-meaning fools who email me or send me stuff in the mail they believe will cure me. Even when I beg people NOT to do this, they do it anyway. “Just take this or that supplement, Bruce, and your fibromyalgia will go away!” “Have you tried __________?” The ill-informed judgment is that I have not, when, in fact, my primary care doctor and I have tried numerous medications, supplements, off-label drugs, treatments, etc. When I came into the office and said, “Doc, I read about this new fibromyalgia treatment, what do you think?” he always said, “let’s give it a try.” His goal today remains what it was twenty-five years ago: reduce my pain and improve the quality of my life.

Over the years, I developed other health problems, namely osteoarthritis that rages through my body like a wildfire, and peripheral neuropathy that causes numbness and pain in my legs and feet. The unholy trinity of fibromyalgia, osteoarthritis, and neuropathy have so afflicted me that I hurt from the crown of my head to the bottom of my feet. There are no pain-free days, just manageable pain days, and raging pain days that make me ponder killing myself (no this is not a cry for help). Throw in a degenerative lower back problem, a tear in my shoulder labrum, and bum knees thanks to abusing them playing basketball for twenty years, and I can safely say that I am a walking, talking train wreck of a man. I wish things were different for me, but all the wishing in the world won’t cure me. So, I accept and embrace what I call my “new normal.” And my “new normal” continues to change over time. I know Doc sees it. There are those times I have heard a brief sigh from Doc as I share a new problem. Not a sigh of exasperation or impatience, but one that says he knows that I am struggling for my life. I have told him numerous times, “I don’t expect you to fix what can’t be fixed.” “All I ask is that you do what you can for me.” And he has done just that over the past two and a half decades.

My treatment has settled into a rhythm of sorts: pain medications, potent muscle relaxers, sleep medications, light aerobic exercises and walking when I am able, and hot — and I mean hot — baths. The goal is decent sleep and the reduction of my pain to a tolerable level. Some days, it’s mission accomplished. Other days, not so much. And then there are those days when the meds don’t seem to work and muscle and joint pain batter me from head to toe for hours on end. The latter leave me in tears, wishing something, anything would make it stop. In these moments, I feel very alone, even though the love of my life is right next to me.

I am sixty-three-years-old. Thanks to the issues mentioned in this post and other health problems I won’t mention lest I sound like Granny Sue at church cataloging her afflictions, what I can do in life is limited. For years, my well-intentioned mother-in-law would ask Polly if I was “feeling better,” as if I had a temporary sickness that would soon disappear. She finally understands that I don’t have days when I “feel better.” Mom used to be a big proponent of “putting mind over matter.” That is until she had her own health problems; diseases that can’t be magically wished or prayed away.

Most days, I walk with a cane, but when we take trips or I am really fatigued, I have to use a wheelchair. I still refuse to use the motorized carts at the grocery. Irrational pride, to be sure, but I would rather slowly go through the store bent over the handle of a cart than ride around the store as an advertisement for infirmity. You see, people with fibromyalgia (and osteoarthritis) often look “normal.” I can’t tell you the times I’ve gotten glares when we pull into a handicapped parking space. I get out of the car and look “normal” so people think I am taking a parking space away from someone who could really use it.

I still struggle with self-worth as a result of fibromyalgia. In my mind, I am supposed to be the breadwinner instead of my wife. I am the one who is supposed to be taking care of everything. Having OCPD doesn’t help either. Fibromyalgia is a cruel oppressor. In my mind, I tell myself, “Bruce, you can do everything and anything you want to do!” Remember the line from the Waterboy? “You can do it!” And then I hear fibromyalgia and his sister osteoarthritis laughing and mocking me. “Sure, Bruce, go ahead and try.” And try I do, often working myself into bed for days on end from relentless pain and overwhelming fatigue. Fibromyalgia snickers and says, “See, Bruce, I told you! I am the boss in this story.”

One of the hardest things I have had to come to terms with is my physical and emotional limitations. When you spend most of your life as a workaholic, a man driven to perfection, it’s hard to admit that you are no longer in control of your storyline. I certainly haven’t mastered dealing with the realities of my life. I can, all too often, overwork, and this frustrates those who love me. I have never been good at finding balance in my life. I am more of an all-in kind of person, charging hell with a squirt gun, only to find out there’s no water in the gun. I want to think I have gotten better, but I suspect what’s really changed is that Polly is now willing to put her foot down and tell me no or suggest that I take off a day or two or four and rest. I also have friends such as Carolyn, my editor, who recognize my character flaws and try to keep me from self-destructive behavior. Carolyn can recount many times that I texted to tell her that I was going to go do this or that. She wisely encourages me to take it easy; to live for another day. And sometimes Carolyn sends see several smile emojis with a message that says, “you are going to do this anyway, aren’t you?” And sure enough, I do, and the next text she gets from me is one saying I won’t be doing any writing for a few days.

I haven’t worked a W-2 job since 2005. In recent years, I have done some web design and site management work for my sister’s trade school in Arizona. This provides me a bit of income, even though I feel guilty about taking her money. This blog, after expenses, also provides me a thousand or two dollars of income. And now that I am drawing social security, I feel as if I am contributing in some small way to our material well-being. That said, I can’t help but think when I see my wife of forty-two years walk out the door to go to work that I should be the one, pick in hand, heading for the coal mine.

This is the first comprehensive post I have written about my struggles with fibromyalgia. I hope you found it helpful, and it gave you a bit of knowledge and understanding about a disease that affects millions of people.

Bruce Gerencser, 68, lives in rural Northwest Ohio with his wife of 47 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.

I Refuse to Accept This

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accepting things as they are

Several years ago, I watched a sports documentary about a boxer who had brain damage from his last fight. No matter what doctors did, his condition continued to deteriorate. Finally, doctors told his wife that they had done all they could do. Both the boxer and his wife would have to accept that he was not going to get better. In fact, his health would likely get worse. The wife said, “I refuse to accept this. Surely, there is something else that can be done. A new drug, treatment, or therapy, surely there is something that can be done.”

While I understand the wife’s unwillingness to accept that her husband was never going to recover, her statement reflects a common misconception about life and the tragedies that come our way. Things don’t always get better. Sometimes, there’s nothing more that can be done. Sometimes, there’s not an answer or a cure.

I have been criticized, often behind my back, for the stoic attitude I have about my health. Since 1997, when I was first diagnosed with Fibromyalgia, I’ve seen numerous doctors, had more blood tests than I can count, and have had repeated scans, procedures, and surgeries.

My orthopedic doctor told me my osteoarthritis is like numerous wildfires burning out of control. Put one fire out and others pop up. He gathered up my x-rays and MRI scans and we looked at them. He was quite blunt, telling me that I have arthritis in EVERY joint, and that some of the damage is severe. Knees, shoulders, feet, hands, and back, all have arthritis that is causing joint damage. The why is unknown. Some days, the pain from the arthritis is severe, some days it is tolerable. Added to this is the muscle pain I have from Fibromyalgia. Every day is a pain day, with some days worse than others. I haven’t had a pain-free day in twenty-five years.

We talked about options. He was quite frank with me, saying that because the arthritis is so pervasive that I was not a good candidate for surgery. Even with my knees and shoulders, scoping them could actually make things worse, resulting in more pain. I like this doctor because he doesn’t bullshit me. His advice? Live with it. Unless I want to have total joint replacements, surgeries that have a huge risk of complications for someone like me who has a compromised immune system, I must learn to live with the pain, debility, and the ever-so-slow loss of function. All that he and other doctors can do for me is help manage the pain and try to improve my quality of life.

And I am fine with this. As I told the doctor, sucks to be me, but it is what it is. Unlike the boxer’s wife, I know there is nothing more that can be done. All the whining, complaining, praying, wishing, and hoping won’t change the fact that I have a body that is failing. All I can do is make the most of what life I have left.

Bruce Gerencser, 68, lives in rural Northwest Ohio with his wife of 47 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.

Understanding and Helping Those Who Live With Chronic Pain

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garfield pain

Regular readers know that I live with chronic, unrelenting pain. There’s never a day that pain is not my close, personal friend. The last time I can remember a pain-free day was somewhere in the mid-1990s (I was diagnosed with fibromyalgia in 1997). Every day, like the sun coming up in the morning, I have pain. Some days are less painful, other days are more painful, and then there are what I call the please let me die days where the pain, no matter what narcotics I take, is off the charts. From the top of my head to the bottom of my feet, I hurt. New pains come and go, often returning months or years later. Some pains move in and stay, just like an adult child who says, “I just need to live here until I get back on my feet.” This is my life. I accept it as it is, doing what I can, and embracing what I can’t.

Friends and family often have a hard time figuring out how to interact with me. Some avoid me — out of sight out of mind, I suppose. Some stand on the periphery of my life watching as chronic pain and illness destroy the man they love. Some dare to venture a little closer, perhaps even offering to help, but I often push them away, not wanting to burden them with my problems. They have a life, I tell them, no need to be burdened with a dying old man.

The last two years have been record-setting, and not in a good way either. Not only do I continue to struggle with fibromyalgia and osteoarthritis, but after I had my gall bladder removed in August, I am dealing with bile reflux and gastritis (bile is pooling in my stomach, not draining down my intestine as it should). I have lost 105 pounds in twelve months, don’t feel like eating, and now I am having a problem with super lower blood pressure (and this is after stopping ALL of my blood pressure medications). And then there are my low blood cell counts that no doctor, so far, has been able to figure out.

I know family and friends love me and want to be “there” for me, wherever “there” is. Some of the readers of this blog — dear folks who have over the years become my friends — offer up their love and support and I deeply appreciate their kindness and compassion. I know, as people watch the spectacle of my life, they are frustrated and discouraged, knowing that this may not have a good outcome. I resigned myself to this fact a long time ago. If not today, it will be some other day, sooner rather than later, that will be my last. Like you, I want to live until I die. While I may have moments when I contemplate suicide, most days I try to live the best life possible.

Several years ago, I read a wikihow.com article titled How to Understand Someone With Chronic Pain. I thought the points in the article might be helpful for my family and friends and for others who are intimately connected to someone with chronic pain. Here are some of the points and a highlight quote from each. I encourage you to read the entire article.

Remember that being sick does not mean that the sufferer is no longer a human being.

Chronic pain sufferers spend the majority of their day in considerable pain. If one visits or lives with a chronic pain sufferer, the chronic pain sufferer may be unable to enjoy things they used to enjoy. The chronic pain sufferer remains aware, and desires to do what they used to perform. The chronic pain sufferer feels as if they are stuck inside a body in which they have little or no control. They still want to enjoy work, family, friends and leisure activities, however much pain puts that enjoyment out of reach.

Learn the code.

Chronic pain sufferers will often talk differently from people free of constant pain. A numeric pain scale is used as a quantitative measure for identification of intensity for pain so the health care providers can measure effects of treatments. The measure describes pain on a scale from 1 to 10; the 1 is “no pain at all, feel wonderful” and 10 is the “worst pain ever felt.” Do not assume the chronic pain sufferer is not experiencing pain when they say that they are fine. The chronic pain sufferer attempts to hide the pain due to lack of understanding in others.

 Recognize the difference between “happiness” and “healthy.”

When you have the flu, you probably have felt miserable. Chronic pain sufferers have experienced pain from 6 months to many years. Pain has caused them to adopt coping mechanisms that are not necessarily reflecting the real level of pain they feel.

 Listen.

The previous two steps made it clear that chronic pain sufferers can speak in code or make their pain seem lighter than the reality. The next best thing that you can do is to listen to them properly, and to make it clear that you both want to hear what they have to say and that you really have heard it. Use your listening skills to decode what they’re hiding or minimizing.

 Understand and respect the chronic pain sufferer’s physical limitations.

Being able to stand up for ten minutes doesn’t necessarily mean that the sufferer can stand up for twenty minutes, or an hour, or give you a repeat performance whenever. Just because the person managed to stand up for thirty minutes yesterday doesn’t imply that they will be able to do the same today…With chronic pain however, it is confusing to both the sufferer and the onlooker, and their ability to cope with movement can be like a yo-yo. The sufferer may not know, from day-to-day, how they are going to feel when they wake up, and each day has to be taken as it comes.

 Leave your “pep talk” for your kids and your gym buddies.

Realizing that chronic pain is variable, keep in mind that a pep talk can be aggravating and demoralizing for the chronic pain sufferer. As already noted, it’s quite possible (for many, it’s common) that one day they’re able to walk to the park and back, while the next day they’ll have trouble getting to the next room. Therefore, it’s vital that you don’t fall into the trap of saying: “But you did it before!” or “Oh, come on, I know you can do this!”

 Never use throwaway lines.

Assuming you know best by making such statements as “Ah well, that’s life, you’ll just have to deal with it”, or “You’ll get over it eventually. Until then, you’ll just have to do your best”, or worst of all, “Well, you look well enough,” etc., are lines that might make you feel done and dusted with the topic but they are both a form of distancing yourself from the person and making the sufferer feel worse and out of hope.

 Check your own patience.

If you’re impatient and want them to “just get on with it,” you risk laying a guilt trip on the person who is suffering from pain and undermining their determination to cope. They probably have the will to comply with your requests to go out and about with them but have neither the strength nor the coping capacity as a result of the pain.

 Be sensitive when suggesting medicines or alternative treatments.

Some may not appreciate suggestions, and it’s not because they don’t want to get well. They may have heard of it or tried it already or some may not be ready to cope with new treatment that can create an additional burden on their already over-burdened lives. Treatments that haven’t worked carry the emotional pain of failure, which in and of itself can make the person feel even lower.

 Don’t be put off if the chronic pain sufferer seems touchy.

If that’s the appearance, it’s probably because they are. It’s not how they try to be. As a matter of fact, they try very hard to be normal. Just try to understand. They have been going through a lot. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, they do their best to cope with this, and live their lives to the best of their ability. Just accept them as they are.

 Be helpful.

The chronic pain sufferer depends a great deal on people who are not sick to support them at home or visit them when they’re too sick to go out. Sometimes they need help with shopping, cooking, or cleaning. Others may need help with their kids. They may need help getting to the doctor, or to the store. You can be their link to the “normality” of life.

Is there anything you would add to this list? Please leave your astute observations in the comment section.

Bruce Gerencser, 68, lives in rural Northwest Ohio with his wife of 47 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.

God Gave Me Breast Cancer Because He Loves Me

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calvin and hobbes god

Joni Eareckson Tada was severely injured in a diving accident in 1967. For the past fifty-three years, she has been a quadriplegic. Tada’s life story was popularized in a best-selling book titled Joni: An Unforgettable Story (1976) and the movie Joni (1979).

In the Friday, June 25, 2010 edition of the Defiance Crescent-News, there was a story about Tada undergoing treatment for breast cancer (behind paywall).

As I read the article, what astounded me was Tada’s comment about God’s involvement in her breast cancer.

Tada said:

I’ve often said that our afflictions come from the hand of our all-wise and sovereign God, who loves us and wants what’s best for us. So, although cancer is something new, I am content to receive from God, what ever he deems fit for me. Yes, it’s alarming, but rest assured Ken and I are utterly convinced that God is going to use this to stretch our faith, brighten our hope and strengthen of our witness to others.

In other words, God gave Tada breast cancer because he loved her and deemed it best for her. God gave her cancer so that she and her husband would have more faith and be a stronger witness to others.

Tada’s God is best described as a know-it-all deity who afflicts humans with sickness, disease, suffering, and death because he loves them and wants to increase their faith in him. He then wants them to use the afflictions he gave them to tell others what a wonderful God he is.

Crazy, isn’t it? I doubt if Sigmund Freud could even figure this out. How is this any different from a violent sadist expecting his victims to praise him for not killing them. “Hey, I cooked them awesome dinners while they were hanging in my basement!”

The Christian interpretation of the Bible presents God as a father and the Christian as a child (a son). Good fathers love, protect, and nurture their children. They don’t beat them, abuse them, or afflict them with pain and suffering. Every right-minded human being knows what qualities make for a good father. We also know what qualities make for a bad father.

In his best-selling book, The God Delusion, Dr. Richard Dawkins described the Bible God this way:

The God of the Old Testament is arguably the most unpleasant character in all fiction: jealous and proud of it; a petty, unjust, unforgiving control-freak; a vindictive, bloodthirsty ethnic cleanser; a misogynistic, homophobic, racist, infanticidal, genocidal, filicidal, pestilential, megalomaniacal, sadomasochistic, capriciously malevolent bully.

Anyone who has read the Bible knows that this is an accurate description of God, the “father.” If God was Santa Claus, he would definitely be played by Billy Bob Thornton, of Bad Santa fame.

A father who has the power to heal and doesn’t is a bad father. A father who causes suffering, sickness, and disease when he could do otherwise is a bad father. A father who afflicts his child with breast cancer is a bad father. A father who gives his child breast cancer so she can tell everyone what a wonderful father he is, is a bad father. From my seat in the pew, this God-the-father, as presented by modern Christianity, is a bad father.

Tada’s argument for a breast cancer-giving God is one of the reasons I left Christianity. I could no longer believe in a loving God that willingly afflicts and kills his children because he has determined that it is best for them. This God demands the Christian bear whatever affliction he brings upon them, and in true narcissistic fashion, he also demands that they love him while he is afflicting them. I want nothing to do with such a capricious, vindictive, warped God.

Disease, sickness, suffering, and death are all around us. If God could do something about these things and doesn’t, what are we to make of such a God? What are we to make of a God who is seemingly involved in the intimate details of life — helping Granny find her car keys — yet when things really matter, he is absent without leave (AWOL)?

Christians sing a song that says “what a mighty God we serve.” A mighty God? In what way is the Christian God mighty? Batman and Superman were mighty gods. They used their powers for good. They were always on call, ready at a moment’s notice, to swoop in and help those in need. But the Christian God? It seems the bigger the need the harder he is to find. As I noted in another post, God seems to involve himself in trivial matters like getting a woman a $200 refund on her plane ticket, but he seemingly can’t be found when an environmentally catastrophic oil leak needs plugging or forest fires are destroying lives and property. Perhaps we need to forget about this God and turn on the Bat-signal.

I am saddened by Joni Eareckson Tada’s affliction with breast cancer. Being a quadriplegic for over fifty years is enough suffering for one lifetime. But I know just because you have one health problem in life doesn’t mean you won’t be afflicted again. As I have learned in my own life, just because I have fibromyalgia doesn’t mean I won’t get some other disease. Life isn’t fair. Life can be cruel. I’ve known Christians whose lives were devastated by one tragedy or sickness after another. I know one Christian woman whose oldest son recently committed suicide, her middle son is in prison for murder, and her youngest child died of Non-Hodgkins lymphoma at age 23. Yet, she still devotedly praises God for his manifold blessings. If God is the one dumping all this on them, it would seem proper to ask God to move on to someone else. “Please God afflict sister so-and-so. She is in perfect health.”

Christians often quote the verse that says God will never give anyone more than they can bear. In other words, no matter what you face in life, God has determined you can bear it. This verse always leaves God off the hook. God, who is sovereign over all things, determines that you can bear to have cancer, AIDS, fibromyalgia, ALS, MS, emphysema, or any other dreaded disease, so he afflicts you. You are expected to bear whatever he brings your way. If you don’t, it is your fault. Your failure to bear your burden shows that you lack faith or you have secret sins in your life.

Reality paints us a far different picture. Many Christians, if not most, do not bear their burdens as the Bible says they should. I have counseled hundreds of Christians over the years who were weighed down by the burdens allegedly given to them by God. At the time, I encouraged them to have more faith, but rarely did the faith of the afflicted rise to the weight of the burden. Most often, the burden broke their back. Sadly, many of these people continue to walk around, stooped over and crippled, all the while singing “what a mighty God we serve.”

There is a hypocritical vein in this line of thinking. The theory is this: God afflicts his children with suffering for their good because he loves them and wants to increase their faith. I would ask then, why do Christians go to the doctor and take prescription medications? It seems to me that not seeing the doctor and not taking medication would result in a greater increase in faith. Surely a sovereign, omnipotent God is bigger than high blood pressure or diabetes, and surely a sovereign, omnipotent God is bigger than any pain a Christian might have, right?

There are Christian sects that do have this kind of faith. They don’t go to doctors, and they refuse to take medication of any kind. And every few years we have the privilege of reading about them in the newspaper when they are charged with manslaughter or child abuse for failing to get proper medical care for one of their children.

For me personally, it is more palatable for there to be no God, or a deistic God that is not involved in his creation, than there is a God that afflicts people because he loves them and wants to increase their faith. Such a God is a monster of vast proportions, a deity unworthy of worship.

I recognize that sickness, suffering, and disease can be instrumental in shaping us and changing us, and making us better people. But this is far different from a loving God-the-father afflicting us so that we will love him, have more faith, and be better witnesses. Such thinking is barbaric and best relegated to the ancient past it came from.

Bruce Gerencser, 68, lives in rural Northwest Ohio with his wife of 47 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.

Depression: It’s the Little Things

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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, 68, lives in rural Northwest Ohio with his wife of 47 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

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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, 68, lives in rural Northwest Ohio with his wife of 47 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.