Tag Archive: Osteoarthritis

Please Do Not Offer or Send Me Unsolicited Medical Advice

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.

Are you on Social Media? Follow Bruce on Facebook and Twitter.

Thank you for reading this post. Please share your thoughts in the comment section. If you are a first-time commenter, please read the commenting policy before wowing readers with your words. All first-time comments are moderated. If you would like to contact Bruce directly, please use the contact form to do so.

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Contentment

contentment“Bruce, your problem is that you lack contentment.” I was stunned when my counselor told me this. I have been seeing him for years. I am beginning to wonder if it is time for a change. His words seemed sharp and judgmental. I felt as if he was ignoring me as a person and making a character judgment instead. Two weeks later, I am still talking about whether this judgment was correct. Polly would say, I’m sure, “Bruce, you are discontented over contentment.” :) Maybe.

Last week, I wrote a post titled, Living with Unrelenting Chronic Pain: Just Another Day in Paradise. I intended to write about contentment then, but the post, as is often the case, went in a different direction from that which I had intended. As that Spirit moves, right? It’s impossible to determine if I am content without first understanding the primary issues that drive my life: chronic illness, chronic pain, loss of career, loss of faith, OCPD, past emotional trauma. Pulling a singular event out of my life and rendering judgment based on it is sure to lead to a faulty conclusion. Think of all the clichés we use about understanding people: walk a mile in their shoes, see things through their eyes, judge not, lest you be judged. If we truly want to understand someone, we must take the time to see, listen, and observe — not something we do much of these days. We live in the social media era, a time when instant judgments are the norm. As a writer, I find it frustrating when people read a post or two and then sit in judgment of my life. In 2,000 or fewer words, I have, supposedly, told them all they need to know about Bruce Gerencser. Of course, I have done no such thing. Want to really get to know me? Sit down, pull up a chair, and let’s break bread and talk. Truly understanding someone requires time, commitment, and effort. I have been married for forty-one years. It took years for Polly and me to really get to know each other. And even today, I wonder, do I really know all there is to know about my lover and friend? I doubt it.

Contentment. What does the word even mean? Happy? Satisfied? Complacent? How do I determine if I am content? Do I even want to be content? Is contentment a desirable human trait? What would the world look like if everyone were content? The Apostle Paul wrote spoke of contentment several times:

  • I have learned, in whatsoever state I am, therewith to be content. (Philippians 4:11)
  • But godliness with contentment is great gain. (1 Timothy 6:6)
  • And having food and raiment let us be therewith content. (1 Timothy 6:8)
  • Be content with such things as ye have: for he hath said, I will never leave thee, nor forsake thee. (Hebrews 13:5)

“Bruce, you are an atheist. What the Bible says is irrelevant.” Tell my mind that. These verses were pounded into my head by my pastors and Sunday school teachers, and then, as a pastor, I pounded them into the heads of congregants. Just because you say, “I’m an atheist,” doesn’t mean that decades of training and indoctrination magically disappear. I spent most of my adult life trying to be the model of a “contented” Christian. Try as I might, I came up short.

My father was the epitome of “contentment.” Dad lived by the maxim que sera sera (whatever will be, will be). He was passive and indifferent towards virtually everything. Dad and I were never close. It’s not that we had a bad relationship; it’s just that he treated his relationship with me the way he treated everything else.

I was much more like my mom. Passionate. Contrary. Opinionated. Everything mattered. It comes as no surprise that I am a perfectionist; that I struggle with Obsessive-compulsive personality disorder; that I have high (and often unreasonable) expectations not only for myself, but for others. Ask my children about what they “fondly” call the Gerencser Work Ethic. Oh, the stories they could share. I am sure a few of you are thinking, “are you not admitting here that you are discontent?” Maybe, but I am not convinced that it’s as simple as that — as I shared with my counselor.

You see, I have always been a restless person. Does this mean that I am discontent? Or, perhaps, I am someone who needs a steady diet of new experiences. I bore easily. In my younger years, this resulted in me working a number of different jobs. My resume is quite diverse. The same could be said of the twenty-five years I spent in the ministry. I loved starting new churches. However, over time, these new churches would become old churches, and when that happened, I was ready to move on. I pastored a church in West Unity, Ohio for seven years. Awesome people. Not a problem in the world. Yet, I resigned and moved on. Why? I was bored. I was tired of the same routine Sunday after Sunday. It wasn’t the fault of people the people I pastored. I was the one with a restless spirit. I was the one looking for matches and gasoline so I could start a new fire.

dogs and contentmentMy counselor asked me if he could wave a magic wand over me and instantly make me content, would I want him to do so? I quickly replied, “absolutely not.” I told him that instant contentment would rob me of my passion and drive. “What kind of writer would I be without restlessness and passion?” I asked. He replied, “ah yes, that which drives creatives.” If being content requires me to surrender my passion and drive, no thanks. I am not interested. Now, I can certainly see where I would be better off if I, at times, let go and let Loki. I have never been good at “be still and know that I am God.” I like being busy. I enjoy “doing.” One of the frustrating problems I face with having fibromyalgia and osteoarthritis is that I can no longer do the things I want to do. My “spirit” is willing, but my “flesh” is weak. Does this lead to discontentment? Maybe, but I am more inclined to think that the inability to do what I want leads to frustration and anger, not discontentment.

I’ll leave it to others to determine if I am content. I will leave it to the people who look at me and “read” my face, thinking my lack of a smile is a sure sign of discontentment; as if there couldn’t be any other explanation for my facial expressions — you know, such as chronic, unrelenting pain. Would it settle the contentment question if I tell people that I am generally happy; that I enjoy writing, shooting photographs, and spending time with my children and grandchildren?  I doubt it. Much like my counselor, people seize on anecdotal stories as evidence for their judgments of my life. I told my counselor about a recent visit to a new upscale pizza place in Defiance. I told him that the waitstaff left a lot to be desired, and our pizzas were burnt on the bottom (the restaurant uses a brick pizza oven). I told our server the pizzas were burnt. The manager gave us a 50 percent discount on our bill. My counselor seized on this story as a good example of my discontentment. Never mind the fact that I rarely complain about the quality of restaurant food. I just don’t do it. I am willing to give a place a pass, having managed restaurants myself. I know how things can get messed up. That said, I always wanted to know when an order didn’t meet customer expectations. No, customers are not always right. Some of them are idiots and assholes. But I couldn’t make things right if complaints never reach my ears.

Am I content? Probably not, but I sure as hell don’t want the kind of contentment preached by the Apostle Paul, modeled by my father, and suggested by my counselor. No thanks . . . I’ll take happiness with a slice of restlessness, and garnished with passion every time.

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.

Are you on Social Media? Follow Bruce on Facebook and Twitter.

Thank you for reading this post. Please share your thoughts in the comment section. If you are a first-time commenter, please read the commenting policy before wowing readers with your words. All first-time comments are moderated. If you would like to contact Bruce directly, please use the contact form to do so.

Donations are always appreciated. Donations on a monthly basis can be made through Patreon. One-time donations can be made through PayPal.

Living with Unrelenting Chronic Pain: Just Another Day in Paradise

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.

Are you on Social Media? Follow Bruce on Facebook and Twitter.

Thank you for reading this post. Please share your thoughts in the comment section. If you are a first-time commenter, please read the commenting policy before wowing readers with your words. All first-time comments are moderated. If you would like to contact Bruce directly, please use the contact form to do so.

Donations are always appreciated. Donations on a monthly basis can be made through Patreon. One-time donations can be made through PayPal.

Life Sucks — Sometimes

life sucks

In a few months I will draw my first social security check. My oldest son will turn forty in May, the same week my oldest granddaughter graduates from high school. Illusions of youthfulness no longer cover the reality that I am officially old, a curmudgeon whose best days are in the rear-view mirror. If I live to age seventy, six-sevenths of my life is gone, and if I live to eighty — not likely — three-fourths of my life has wafted away as steam rising from a radiator heater — the steam that used to entertain me fifty years ago as I stared out the school window, hoping for spring’s soon appearance. I am a pessimist by nature, choosing to see things as they are. My counselor and I were talking about people who love to point to spry, healthy, all-jacked-up-on-Mountain-Dew people in their eighties and nineties as examples of what any of us could attain if we would but do ___________ (fill in the blank with the latest, greatest health/fitness/lifestyle tip). While such people are well-intentioned, they are, in fact, delusional. The human race is a pyramid, with the Jack LaLannes of the world standing on the pinnacle. Most of us will not have such lives, and will, instead, face a variety of health problems as we age. And for some of us, our health problems will have begun long before we got old. In my case, I was fifteen.

At the age of forty, I was diagnosed with Fibromyalgia, and over the last two decades osteoarthritis has attacked my spine, neck, shoulders, hands, and feet. My orthopedic doctor says arthritis is like a wildfire spreading through my body. Throw in high blood pressure, diabetes, nerve pain, a torn meniscus, and a torn shoulder labrum, and, well, life sucks. Tonight, I photographed a local high school’s junior varsity and varsity basketball games. This required me to stand on my feet for an extended period of time. It was not long before the years-old ritual began: pain in my lower back, pain in my shoulders, pain in my feet — even with orthotics — culminating in burning numbness in my thighs and face. At half time, I sat down as I have done countless times before, rocking forward and back, relieving the pressure on L5 in my lower back. The pain subsides and the numbness dissipates, that is, until the buzzer sounds, telling me it is time to stand once again, camera in hand, ready to photograph young, athletic men who remind me of myself forty-five years ago.

I am sure some of you are thinking, if photographing the games cause so much pain, why do it? Simple. Yes, life sucks, but I have two choices. I can either rot away in my recliner watching M*A*S*H reruns, or I can force myself to get out of the house, knowing that the price of admission is pain. I choose the latter, having no desire to spend my days mindlessly watching TV. I take narcotic pain medications, NSAID’s, and muscle relaxers, hoping they reduce the pain enough that I can gut out whatever it is I want/need to do. This is not me whining or complaining. I don’t seek your sympathy. But I do have a point I want to make . . .

My wife, Polly, was, until last year, destined to be one of those eighty-somethings standing of the pinnacle of life. She rarely got sick, and the only time she was in the hospital was to give birth. Polly has worked at Sauder Woodworking for twenty years. Up until recently, she had never missed a day of work. Never, not one day. Polly expected to live a healthy life all the way to the finish line. Naive? Perhaps, but past experiences suggested she had “good health” genes. One early morning, however, everything changed. Polly woke up me up, saying her heart was racing. Sure enough her pulse rate and blood pressure were quite high. Off to the emergency room we went, and hours later it was determined Polly had AFib. Two months later, Polly started bleeding internally, requiring two outpatient surgical procedures. A month or two after that, Polly broke a molar. The dentist could not fix the tooth, so it had to be surgically removed. A few months after that, Polly had to have surgery for a deviated septum. By then, both of us were singing the LIFE SUCKS tune. Surely, better days lie ahead, we thought. Unfortunately, the worst was yet to come. In January, Polly began having severe bowel problems. This eventually landed her in the hospital. Numerous tests later, it was determined Polly has ulcerative colitis — a diagnosis that explains some of the problems she has had in recent years. Six days later, Polly left the hospital, her life changed forever. Life sucks.

And then, our water heater quit working. A small thing, to be sure, but I thought, doesn’t the shit ever stop flowing our way? I want to think that better days lie ahead, but I don’t know what tomorrow might bring. All I know to do is to endure, believing that there will be moments and days when life doesn’t suck. Sometimes you have to look really hard to find them, but they do exist. I remember a particularly painful day last summer when the family was over for dinner. Quite frankly, I just wanted to be left alone, but this event had been scheduled for a long time so I put on my weary fake smile and endured. But there came a moment when I was sitting in my lawn chair outside watching my younger grandchildren play. So full of life, filled with energy and silliness. I found myself, in that moment, enjoying life; a brief respite from pain and suffering. It was a reminder to me that, yes, life sucks, but there are the joys of life, the reasons for which you continue to get up, breathe deeply, and live.

Earlier this week, I attended band concerts for my fifth-grade grandson and my seventh-grade granddaughter. The fifth-grade concert was, well, good job, kids. Keep practicing! The seventh-grade concert, however, was phenomenal. My granddaughter plays in the jazz band, and I was quite impressed with their skill level. She has come a long way — talent-wise — in three years. I sat on the front row. This made me an easy target for thoughtless, careless people. Three times, people plowed into me. One teenager knocked my cane out of my hands. I wanted to scream, I am a big man! Can’t you people see me? I said nothing, choosing instead to endure their punishment. And it was worth it. Once the music began, I found myself in one of those “life is good” moments. I have the privilege of watching my grandchildren grow into teenagers and young adults. My dad died at age forty-nine and my mom committed suicide at age fifty-four. None of my children or grandchildren ever got to know my dad. He was dead by the time they were born. My oldest two sons remember my mom, but that’s it. I have often wondered what my mom would have thought of my redheaded daughters or my grandkids. Alas, heart disease and mental illness ended my parents’ lives on a “life sucks” note. I wish it could have been different. I wish my children and grandchildren had the opportunity to know my parents. But all the wishes in the world won’t bring them back from the dead. All I can do is try to keep their memories alive through stories and photographs.

Yes, life sucks, but I am grateful for those moments in time when it doesn’t. I am blessed to have a wonderful wife and family. And even though the pain is unrelenting, I continue to try to look for those times when I am reminded that life is good; that even in the midst of suffering, there are moments of joy. All I know to do to is get up each day and hope for the best. I don’t know what any one day might bring, but I remain hopeful that in the midst of stormy weather, the rain will cease and the sun will shine — that is until a meteor wipes me (and you) off the face of the earth. 🙂

About Bruce Gerencser

Bruce Gerencser, 61, lives in rural Northwest Ohio with his wife of 40 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.

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.

Thank you for reading this post. Please share your thoughts in the comment section. If you are a first-time commenter, please read the commenting policy before wowing readers with your words. All first-time comments are moderated. If you would like to contact Bruce directly, please use the contact form to do so.

Donations are always appreciated. Donations on a monthly basis can be made through Patreon. One-time donations can be made through PayPal.

The Daily Indignities of the Physically Disabled

handicapped bathroom

Warning! Bathroom talk ahead. If you can’t bear to read about bodily functions, it might be best if you stop reading after the story about the baseball game.

I am physically disabled. Due to muscle and joint problems — which have left me with increasing debility and pain — I always walk with a cane or use a wheelchair. Anyone who has ever seen me walk can immediately tell that I have physical problems. When entering the grocery store, people will often wait until I make it to the door and then walk in behind me. If I see that this is happening, I usually say, oh no, you go ahead. I am a slow-moving vehicle. We all have a laugh and they quickly walk through the door.

Slow-moving vehicle — that describes me well. I can’t run, bend forward more than forty to sixty degrees, and I am prone to falling, especially when I hit raised sidewalks or miss seeing that there is a step ahead. Fortunately, I have not broken anything. I have, however, pulled neck, back, and hamstring muscles, along with injuring my shoulders, knees, and ankles. Often, the greatest injury comes when I try to keep myself from falling; that moment where I tense up my body and try to stay balanced. On more than a few occasions, I have kept myself from crashing to the ground, only to be unable to get out of bed the next day because I pulled this or that muscle or wrenched this or that joint. Such is life …

It would be easy for me to throw in the towel and resign myself to never going out in public again. I have all the physical reasons necessary to justify becoming a full-time couch potato. Of course, giving in only hastens my death. I know I need to be as active as possible, so I push myself to do things that cause physical exertion and pain. Athletes often wear shirts that say No Pain, No Gain. I remember living out that mantra as a young man when I played baseball and basketball; and even as an adult athlete — well into my thirties. Today, it’s lots of pain, period.

I am now sixty-one years old. I know there is coming a day when I won’t be able to carry out even the limited things I now do. Every year brings decreased mobility. I struggle psychologically with watching my wife do many of the things I used to do. I find it embarrassing to watch Polly weed-eating the yard or doing other physical activities that were once my domain. There are times I feel less of a man when Polly does these things, but I know she’s doing them because she loves me. There are times she will do things only to make sure that I CAN’T do them, knowing that I will try to do them, causing myself increased suffering and pain.

Today, I went to a nearby golf course to shoot photographs for a local high school golf team. Two years ago, I started shooting high school sports. I take the photos free of charge. I see it as a way to give back to the local school district and to provide parents with professional quality photographs of their athlete children. I know parents appreciate the photos, and on the back end it has driven some paying business my way.

I arrived at golf course around 3:30 PM. This was my first time shooting a golf match. I was nervous about how best to photograph the golfers, what aperture and shutter speed to use, and how much walking I would need to do. As always, my sidekick, my twenty-nine year old daughter with Down syndrome, was with me. I talked to the coaches, learning how the players would play the course. I thought, man I really need to rent a cart. (I always pay my own freight, be it tickets or golf cart rentals.) I went in the clubhouse to inquire about a cart, only to find out none was available.

As I exited the clubhouse, a man came up to me and said, Bruce, is that you? I paused for a moment, and then he gave me his name. He was my last pastor, a young United Methodist cleric whom I really liked. He and I had numerous conversations about theology, history, and life. Both he and his wife were delightful people to be around. I thought he and his family had moved away a couple years ago, but discovered they still lived in the area and their two oldest sons were on the golf team. We had a delightful talk, and I was reminded of how much I missed talking to him.

While we were talking, several golfers finished their round and returned their carts. The wife of my former pastor said, Bruce, you ought to see if they have a cart for you. Good idea, I thought. I went into the clubhouse and inquired as to cart availability. The girl taking care of cart rentals said, yes, two carts just came in. I told her, great! I am here to photograph the match for __________ school. She had me sign the rental sheet, and then said the cart would be free of charge. Come to find out, unbeknownst to both of us, the owner/manager of the course had promised my cart to one of the coaches.

I took the key for the cart, and off I went to the tee for the first hole and the green for the ninth hole. I had planned to drive to the other holes, hoping to catch all the school’s players in action. One of the coaches told me that the groups were staggered, so everyone one of them would eventually end up either driving off the tee for the first hole or putting on the green of the ninth hole.

As I was standing, waiting for match to begin, I chatted with one of coaches, the aforementioned pastor and his wife, and a photographer for the local newspaper. This was the first time the coach and I had any sort of extended conversation — light chit-chat as we awaited the start of the match. As we were talking, the manager/owner came up and joined our group. He let it be known that my cart was the coach’s cart. I replied, no it is mine. He said, no it’s not. Did you pay for it? That cart belongs to the coach. I reserved it for him. Confused, I replied, the girl up at the clubhouse gave me the cart. I am here to photograph the match for ______________.  The manager/owner, with a stern face, replied, I didn’t know that. No apology, no sorry for the misunderstanding or let me see what I can work out.

The coach let it be known that he was fine with me having the cart. Once I determined I could do what I needed to do without the cart, I went to the coach and said, here you can have the cart, I’ll be fine. The coach knew I was disabled. He coaches several other sports I have photographed. He said, are you sure? I replied, yep, and then made a joke about having a stroke and his name being the last words on my lips.

After an hour or so, I found myself quite fatigued, so I decided to call it a day. I went to the clubhouse to let the girl who handles the rentals know that I had given the cart to _____________. I then told her that the owner/manager thoroughly embarrassed me in public. I explained to her what happened and recounted what he said. She had no idea the cart was reserved for the coach (who, by the way, said if he got a cart he would chauffeur me from hole to hole). She asked if I wanted to talk to manager/owner. Still angry over his words, I replied, no, he’s an asshole and that’s all I need to know. She profusely apologized, but I stopped her, saying, hey it wasn’t your fault, it was his. As is often the case, low-level employees feel the brunt of criticisms over things they had nothing to do with. I always make sure to let them know that my ire and dissatisfaction is directed at the offender, and not them.

Several weeks ago, Polly and I, along with Bethany, attended a Toledo Mud Hens/Louisville Bats baseball game. Two of our sons and their children were also at the game. I was quite fatigued before the start of the game, and by the end — due to the heat and humidity — I felt quite distressed physically. Thanks to my failure to take care of myself and drink enough fluids, I began to notice the symptoms of heat exhaustion. The game was nearing its conclusion, but there were fireworks afterward and we wanted to see them. I turned to Polly and said, We really need to go. I’m sorry, but I really feel sick: light-headed, clammy, weak. 

I told my children I wasn’t feeling well, and then we made the long, arduous climb to the concourse. By the time I reached the peak of Mount Kilimanjaro, I was short of breath and could hardly walk. I had a momentary thought of telling Polly that I needed medical attention, but I thought, we are parked close by, and I if I take it slowly — as a turtle “running” across the road — I will make it to our car.

I finally made it to the exit, thinking, I made it. All I have to do cross the street, walk a couple of hundred of feet, and sweet, wonderful, life-saving air conditioning awaits me. I noticed a Toledo police officer was blocking the street and forcing people to walk elsewhere (due to the fireworks). I thought, the car is right there. I can see the ship on the horizon, deliverance draws nigh.

Polly was walking behind me with Bethany, and unbeknownst to me, she decided to walk to the corner and cross the street. I went up to the officer and said, I am really, really sick. I would like to cross the street here so I can quickly get to the car. He replied, what’s wrong with you? At that moment, I wanted to, with what meager strength I had left, scream at the officer. Instead I told him I was really sick; that I felt weak and clammy. If the officer had bothered to LOOK at me, he would have noticed that I was profusely sweating; that my shirt, ball cap, and pants were soaked with sweat; that I was walking with f-u-i-c-k-i-n-g cane. Instead, he replied, if you are so sick, how come no one is helping you? I turned, thinking Polly was behind me, only to find out she was half a city block away, crossing the street at the crosswalk. I told the officer, that my “help” was at the street corner. Look I am really, really sick, I said. I just need to get to my car. The officer looked at me with a stern face, one that said, I don’t believe a word you are saying, and said, Go on… (meaning cross the street). For a brief moment, I thought about dropping over in the street from exhaustion, thus proving the point that I really was sick. Instead, I slowly motored on, reaching the car just as Polly arrived with the keys. She unlocked the doors, and I collapsed into the passenger’s front seat. Polly quickly started the car and turned on the air conditioning. I stripped off my sweat-filled shirt and hat and tossed them into the back seat. I made it, I told myself, knowing that I had pushed myself too hard and that I could have collapsed from heat exhaustion. Lesson learned — maybe.

Last weekend, Polly and I, along with Sinnuh (my latest nickname for Bethany, a corruption of the word Sinner, from the hit TV show on the USA Network) went to the Henry County Fair. We planned to tour the grounds and then watch the tractor pull. We found good seats and settled in to watch turbocharged, fuel-injected 1,800 horsepower machines see how far they could pull a weight sled. A perfect night for me: loud tractors and the smell of alcohol fuel; much like the smells at the dirt tracks I frequent.

An hour or so into the show, I felt THAT. I said to myself, no, please God no, not THAT!  As is God’s custom, he was nowhere to be found. I turned to Polly and said, I need to use the bathroom. She replied, okay. I told her, not that kind of using the bathroom. I am all cramped up. She looked at me with lugubriousness, knowing how fearful I was of using public bathrooms to take a shit. This, by far, is the one thing I fear the most. Dirty toilets, single-ply toilet paper, lack of privacy, did I mention dirty toilets? I get distressed just thinking about having to use a public toilet.

I always try to make sure my bladder and intestinal tract are empty before I go to a public event. When I left the house, I thought I was good to go, or better put good not to go. Unfortunately, I will occasionally have what I call the mother of all shits — an experience I don’t wish on anyone. I can “feel” when one is coming on, and that’s exactly what I felt at the tractor pull.

As I stood to make my way down to the concourse, I let out a big fart. I am sure the people behind me thought, OH MY GOD. I, one the other hand, was grateful that it was gas and not fecal matter. Built back in the days when privacy and handicapped access were not important, the bathrooms were under the grandstands. I knew using the toilet was going to be an adventure; adventure as in having to spend the day with Donald Trump. Not g-o-o-d.

man using toilet

Waves of cramps let me know that I better find the bathroom soon. I entered the bathroom, looked at no one (it’s a man thing) and made my way to the farthest stall. Finally, I thought, I made it. I quickly dropped my pants, checked the toilet seat for pee, and boom all of Polly’s wonderful cooking — and three crunchy tacos from Taco Bell — exited my body. The stall door had no latch, so as I sat there doing my business, I held the door shut with the handle of my cane. I hoped that the busy kids who entered the bathroom would see my cane and not try to expose Santa in all his glory.

I sat there for a few minutes, reading emails on my phone and letting my muscles relax. I stood up to wipe my ass, only to find out that the toilet paper was the cheapest single-ply toilet paper you could buy. Awful stuff. A sure guarantee that you will end up with shit on your fingers. Worse yet, the stall walls only came half way up my chest. Here I was, leaning against the plywood stall wall so I could wipe my ass — which is an ordeal in and of itself — looking as if I was peering over into the next stall, breaking the cardinal man-club rule: no looking. (Due to a loss of mobility, cleaning up after defecating is quite challenging. The doctor suggested Polly could help. I told him point blank, my wife is never going to wipe my ass. NEVER! I would rather be dead than have her do that for me!) Finally, I pulled up my pants, only to find out that my suspenders were wet and stained from lying on the pee-soaked floor. After a few moments of reflective cussing, I got myself together, ready to watch the next class of tractors.

Just as I was getting ready to exit the stall, my bowels said, oh no you don’t big boy. A sluggish meal had finally made it to my sphincter muscle and it was demanding exit. I thought, @#$%#@, really?  Yes, really. And so, knowing the sluggish meal would not wait, down went my pants, down went my ass on an undersized, low-profile toilet, and down went the last contents of my bowel. I once again read my email and approved comments as I waited for the physical calm to come. Finally, it arrived, and I stood, gathered up a long strand of single-ply toilet paper, tripled it over, attempted to make my ass look presentable, pulled up my pants, zipped them, pulled my pee-stained suspenders over my shoulders, and exited the stall. I made my way back to the grandstand, telling Polly that I had the mother of all bowel movements, and that my pants and suspenders will definitely need washed.  We looked at each other, smiled, laughed a bit, realizing that this was just another day in the life and times of Bruce Gerencser.

I Don’t Want to Die, I Just Want the Pain to Stop

pain to stopYet another visit to the doctor’s office, visit number eleven since November — primary care doctor, dermatologist, cardiologist, podiatrist, and today a visit to my orthopedic doctor. For the past six months or so, I have been having a problem with my right hip. I would get a dull ache in the hip and at times it would give out on me, sending me banging from wall to wall, much like a steel ball in a pinball machine. Over the past two weeks, the pain in my hip has gotten significantly worse, and on occasion I have been unable to walk without help or a cane. I thought, what the hell is going on now? Just what I need, another fucking problem to deal with!

My orthopedic doctor — a physician’s assistant — is a straight-shooting, no bullshit practitioner. He tells me the truth, and doesn’t promise medical miracles. I have osteoarthritis from my neck to my feet and in many joints in between. My doctor told me I have a wildfire spreading through my body. Surgery “might” help for some of your joint problems, he told me last time, but we could also make your problems worse and leave you in more pain. At a previous visit, he asked me how my right shoulder was. I have a labrum tear. I told him, it hurts, but I get by. He replied, see, here we are two years later and you are still getting by. If we had cut on you, things might have turned out worse for you. I appreciate his honesty.

The good news from today’s visit is that my hip is fine. The bad news is that the ever-narrowing disc spaces in my lower back are affecting the nerves that control my hip’s movement. Pressure on these nerves is causing my hip to give way. This is why when I sit for a long time, I can hardly stand straight and the hip doesn’t work as it should. Once I stand for a while and get straightened up posture-wise, the pressure on the nerves is decompressed and everything works as intended.

There are days when I just want to put an end to it all. People who suffer with chronic illnesses and endure unrelenting pain often have thoughts about suicide. Well-meaning people tell me that they are praying for me, or that I need to put mind over matter. I love it when someone tells me, you know, there are people who are worse off than you. And this helps how, exactly? There will always be people who are sicker than I am or have more pain than I do. And there are countless people who are in good health, and their biggest pain is a zit on the end of their nose or a backache from too much headboard banging. Each of us lives in a contained world unto ourselves. My health problems and my pain are mine alone to bear. Just think of Jesus’ suffering, Bruce. He did it all for you, Christians tell me. What, a day or so of pain, a long weekend, and then a pain-free body? Jesus had it easy I would trade places with him in a heartbeat. Let Jesus walk in my shoes for a while — not that he can, he’s dead. Conjuring up an imaginary suffering deity as a way to “encourage” those who are in real pain is not any more helpful than that same God spitting on the dirt making some mud, and using it to restore a blind man’s sight. Forget the theatrics. If Jesus is really the Great Physician, what’s he been up to for the past two thousand years? I know a lot of people who sure could use his help. His inattention makes me wonder if he is actually dead, and what’s really going on here is that the Christian church has been playing a con-game for the past twenty centuries. Just keep praying. Jesus will heal you — some day.

suffering and pain

People with chronic pain have often suffered for years. Their lives are an endless repeating of the movie Groundhog Day. I endure the day, collapse in bed, spending several hours getting to sleep, only to start the process all over again the next day. And pain is just one of the plethora of issues I must deal with every day. I am not complaining. I accept life as it is, doing what I can to lessen my suffering. I don’t expect my doctors to work miracles, nor do I anticipate waking up one day and finding myself miraculously healed. That’s not how things work in the real world. Thousands and thousands of prayers have been offered on my behalf, and I spent the better part of twenty years daily asking God for healing. As the mythical Christian God is wont to do, he remained silent.

When I write about suicide, people immediately worry that I am about to pull a David Foster Wallace. Not today, my friend, not today. All I am saying here is that chronic illness and pain drive people to ponder ending their lives. In fact, it is totally normal to have such thoughts. It’s not that I want to die — I don’t. I want to live. I want to watch more sunsets over Lake Michigan with the love of my life. I want to eat Polly’s food and make love to her. I want to hear Bethany laugh while watching a stupid movie. I want to go to stock car races and baseball games with my sons. I want share Thanksgiving and Christmas with my family. I want to watch my grandchildren come of age, go off to college, and perhaps have families of their own. I want to watch the trees, bushes, and plants Polly and I have planted grow to maturity, covering our yard with summer beauty and shade. There are so many things I want to do, yet when my body is wracked with pain, all I can think is this: PLEASE MAKE IT STOP!

You see, that’s what healthy people don’t understand. It’s not that people such as myself want to die, we just want the pain to stop. Oh, how I yearn for a day  — just one day — of waking up in the morning pain-free. Some of you reading this post know what I am talking about. You understand longing for a day without pain, yet you know such hope doth fantasies make. For the present, we live between the one certain cure — death — and a life of finding meaning and purpose. For me personally, writing, photography, family, and hoping the Cincinnati Reds will, one more time in my lifetime, win the World Series, are those things which give me meaning and purpose. When I devote my energies to those things. thoughts of suicide diminish. That said, suicidal thoughts will never, ever go away, and I have, through anguish and tears, thought on more than one occasion this year, ENOUGH! But today I say to myself, LIVE. Who knows what tomorrow may bring. For now, I focus on the things that matter, hoping they continue to provide reasons for living.

I know the goodness in you will urge you to try to encourage me in the comment section, a text, or an email. There’s no need, friends. This is just me talking out loud and being brutally honest about life. I may die today, but it will not be by my own hands. My sister has a project she needs her wise, aged, technologically savvy smart-ass of a brother to take care of (she reads my blog, so I just had to say that).  I can’t leave her in a lurch. And besides, NFL football starts soon. How about them Bengals?

About Bruce Gerencser

Bruce Gerencser, 61, lives in rural Northwest Ohio with his wife of 40 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.

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.

Thank you for reading this post. Please share your thoughts in the comment section. If you are a first-time commenter, please read the commenting policy before wowing readers with your words. All first-time comments are moderated. If you would like to contact Bruce directly, please use the contact form to do so.

Donations are always appreciated. Donations on a monthly basis can be made through Patreon. One-time donations can be made through PayPal.

Questions: Bruce, How is Your Health?

questions

I recently asked readers to submit questions to me they would like me to answer. If you would like to submit a question, please follow the instructions listed here.

Paul asked, “Bruce, how is your health?”

The short answer is “fine.” When people ask me about my health, I usually use “fine” or one of my other discussion killers such as “super-duper,” “I’m on top of the world,” or “so far so good.” These rejoinders are, of course, lies, but as most people with pervasive health problems know, most people who inquire about how you are feeling are just trying to be polite. They really DON’T want a head-to-toe rundown of all that ails you. My wife’s aunt asked me the other day how things were for me. I replied with “fine,” and then I added, “you really don’t want to know about my hemorrhoids, do you?

Paul, on the other hand, sincerely wants to know how I am doing health-wise. The remainder of this post will detail the day-to-day struggles I have with chronic illness and unrelenting pain.

Where-oh-where do I begin? Let me start with the big-ticket health problems. First, I have fibromyalgia. This remains the overarching problem that dominates my life day-in and day-out. With fibromyalgia, I have fatigue and widespread muscle spasms and pain. I was first diagnosed with fibromyalgia in 1997. Second, I have osteoarthritis in my spine, neck, hands, shoulders, and feet. In other words, everywhere. Third, I have high blood pressure, which is treated with medication. Fourth, I am diabetic. Currently, I take two different diabetes medications.

Adding to these things is the fact that I was treated for skin cancer twice over the past year. I see a dermatologist every six months to atone for the youthful sin of repeated blistering sunburns as a child. Several months ago, I found out that I have two Morton’s neuromas and bursitis in my left foot. The best way I can describe the pain is having your foot hit with a hammer — repeatedly. Because I am diabetic, I am unable to have the foot surgically corrected. I have chosen to live with the pain instead of risking the loss of my foot from surgery complications.

Recent months have brought increasing nerve pain in my legs. This, by far, is the biggest problem I face, because it affects my ability to sleep. It is not uncommon for me to take two to three hours to fall asleep, and even then I rarely sleep through night, thanks to pain and a weak bladder. If there’s one aspect of my health that leaves me wanting to die, it’s nerve pain. Narcotics help, but the pain never goes away. I mean n-e-v-e-r.

Doctors continue to monitor a lesion I have on my pancreas. So far, I am cancer-free. I will likely have to have lesion biopsied again next year.

I continue to battle depression. My depression is primarily driven by my health problems. When pain levels are severe, so is my depression. I had been seeing a counselor, but he and I have become good friends, and this, unfortunately has ruined our professional relationship. My last two visits were spent talking about politics and Donald Trump. I am looking for a new counselor, but so far, I have not found a local counselor who is not faith-based.

The sum of these things and a niggling list of other things I won’t mention have severely limited my ability to get around. Most days, I walk with a cane. Some days, especially when what we are doing requires a lot of walking, I use a wheelchair. Over the past year I have noticed that my ability to walk is slowly declining. I continue to push myself, but I sense there is coming a time when my walking days will be over.

Most days, I have a short window where I feel good enough to write, work in the office, edit photographs, etc. I do what I can. There are times when I push myself too hard — an unwise move — and when that happens I often end up in bed for several days.

I want to conclude this post with a few please do not do these things:

  • Please do not ask me if I have tried _____________. I am under the care of competent doctors whom I trust with my medical care. They know my body far better than you.
  • Please do not tell me you are praying for me. I understand praying might be your way of showing empathy, but telling an atheist you are praying for him is not helpful. If you MUST pray, I don’t want to know about it.
  • Please do not read into what I have written in this post. I am not suicidal, and if I become suicidal I doubt your email will stop me from ending my life.
  • Please do not try to “encourage” me with rah-rah, happy-as-a-seal-with-a-ball words. I do not find such words helpful or motivational. I am just not built that way. I am a pessimist, a grinder who stoically embraces what life brings my way. I have always been this way.
  • Please do not ask me about my diet. I actually eat a lot of vegetables, fish, and all the things you are sure I don’t eat.
  • Please do not ask me if I am taking this or that supplement or drug. Over the past twenty years, I have tried dozens of medications and supplements. Every time a paper is published that says ________________ might help fibromyalgia patients, I ask my doctor what he thinks. More often than not, we give it a try.

Many people think that every health problem can be “fixed.” I’m here to tell you that such a belief is as every bit as fantastical as believing Jesus resurrected from the dead or Mary, the mother of Jesus, was a virgin. I am a realist. I accept life as it is and do what I can each and every day to make a meaningful difference in the lives of others. I hope I do so through my writing, photography, and operating the TV remote for Polly.

About Bruce Gerencser

Bruce Gerencser, 61, lives in rural Northwest Ohio with his wife of 40 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.

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.

Thank you for reading this post. Please share your thoughts in the comment section. If you are a first-time commenter, please read the commenting policy before wowing readers with your words. All first-time comments are moderated. If you would like to contact Bruce directly, please use the contact form to do so.

Donations are always appreciated. Donations on a monthly basis can be made through Patreon. One-time donations can be made through PayPal.

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

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

February 27, 2018

Dear Deb,

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

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

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

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

Thank you for taking the time to read my letter.

Bruce Gerencser
345 East Main Street
Ney, Ohio 43549

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

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

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

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

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

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

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

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

Please Stop the War on Chronic Pain Sufferers

vicodin

Every day, there is a breaking news report warning readers about the opiate epidemic. These reports detail the alarming uptick in deaths related to opiate use. These deaths are ALWAYS caused by drug abuse, a fact that is often lost in the sensationalized details of death by opiates. The FDA and  federal and state governments have called for and enacted new laws and regulations meant to curb opiate use and abuse. One former FDA chief even went so far as to say that doctors were wrong to think that alleviating pain was an essential part of patient care. Some regulatory agencies suggest that doctors should encourage chronic sufferers to use over-the-counter medications or alternative treatments such as massage therapy or acupuncture. And for those sufferers who have tried everything and are still in pain? Suck it up. We have a drug epidemic on our hands and we don’t have the time to care about your pain and suffering.

As long-time readers know, I live with unrelenting, chronic pain. Fibromyalgia, osteoarthritis, narrowing lower back disc spacing, and non-specific neurological problems have landed me in a wheelchair and robbed me of any meaningful opportunities for working outside of my home. (Here’s hoping my upcoming book will be a New York Times bestseller.) There is no such thing as a good day for me. Days are rated on a scale of tolerable pain on one end to screaming pain that makes me want to end my life on the other. Each and every day I take four 12.5/325 mg. Vicodin and four 50 mg. Tramadol. When needed, I also use hot compresses and a TENS unit. One thing is for certain…when I go to bed tonight one thing that will await me when I awake in morning is pain.

I have been seeing the same primary care doctor for 19 years. I first saw him when I began to feel tired all the time. From that came a diagnosis of Fibromyalgia. My doctor has had to helplessly watch as my body has turned on itself and rendered me an invalid. While he can treat my diabetes and high blood pressure, and send me to specialists to address other problems such as cancer that threaten my existence, there is little he can do for my pain except commiserate with me and then prescribe narcotic pain medications. He knows — because I remind him of it from time to time — that  I do not expect him to fix what can’t be fixed. I am a realist. I accept my life as it is. What I do expect from him is help with my chronic pain. He has always put my needs first, but thanks to increased government scrutiny, my doctor is increasingly finding it hard to properly help with my pain.

My doctor is now required to closely monitor the total narcotic load of his patients. My load stands at 60 percent, well below the 80 percent threshold where my doctor is required to justify his treatment of my pain. He is no longer permitted to write narcotic prescriptions with refills. I must see him every two months, at which time he writes me two prescriptions for my pain medications. My doctor believes the government is now standing between doctors and their ability to provide competent care to their patients. It now costs me $181 every time I see my doctor. This means that it costs me over $1,000 a year just to get my narcotic prescriptions. Drug companies, always looking to increase the bottom line, have increased the cost of my Vicodin prescription by 300 percent since 2013. All told, it costs over $1,500 a year just to treat my pain. Since I am on a consumer-driven, high deductible ($3,000, to reach 80/20 and $6,700 maximum out-of-pocket) insurance plan with no drug benefit, most of my pain relief costs come right out of my wallet.

And even worse, I am treated as if I were a criminal. I recently had to sign a drug contract that permits my doctor to randomly test my urine — at my expense —  to make sure I am actually using the prescribed pain medications. I have NEVER abused my pain medications, but because federal and state governments can’t or won’t regulate pill mills and illicit narcotic use, I am punished for the criminal behavior of others. As is often the case, people who play by the rules are punished because of the bad behavior of others.

If regulatory agencies don’t come to their senses, doctors will be forced to break the Hippocratic oath. No longer able to find affordable pain relief, patients will turn to street drugs or alcohol. Some patients will likely choose suicide over a life of unrelenting pain. Is this really the goal of another phase of the failed war on drugs? What about marijuana? you ask. When legalization comes to Ohio, chronic pain suffers such as myself will be likely be forced to see pain doctors who use draconian methods to manage their patients’ needs. Office calls will be more expensive and random drug testing will become mandatory every visit. As is always the case, this economic burden only adds to the sufferer’s pain, a reminder yet again that patient needs do not come first.

Do you suffer with chronic pain? How has your treatment changed in recent years? Please share your thoughts in the comment section.