Tag Archive: Disability

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.

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.

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

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

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

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

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

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

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

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

About Bruce Gerencser

Bruce Gerencser, 60, lives in rural Northwest Ohio with his wife of 39 years. He and his wife have six grown children and eleven grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist. For more information about Bruce, please read the About page.

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

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

new pain schedule

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

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

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

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

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

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

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

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

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

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

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

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

you can do it

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

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

About Bruce Gerencser

Bruce Gerencser, 60, lives in rural Northwest Ohio with his wife of 39 years. He and his wife have six grown children and eleven grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist. For more information about Bruce, please read the About page.

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

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Better to Try and Fail Than Not Try at All?

failure-homer-simpson

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

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

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

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

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

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

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

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

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

[signoff]

The Invisible Man in the Chair

wheelchair

Let’s go to the Botanical Garden in Toledo, I tell my chauffeur. I want to photograph the spring flowers.

The sun is shining, the air is cool, a perfect day.

The car is loaded: camera, tripod, cane, and wheelchair. All the necessary tools of an aging crippled photographer.

Are you sure you want to push my fat ass around, I ask my chauffeur. And just like every other time I ask this question, she smiles and says yes.

The Toledo Botanical Garden is 50 miles or so from home. We arrive around 4 PM. Several hours of great lighting left, I tell myself. We pull into the parking lot, finding it full cars, limousines, and small buses. It’s prom night and hundreds of area high school student are at the Garden to get their photograph taken. They are dressed in ill-fitting dresses and tuxes, each trying to outdo the other on their special night.

We finally find a parking spot. Actually, we make a parking spot where there isn’t one.  I ask my chauffeur, are you sure you want to do this? Like always, she smiles and said yes.

The wheelchair is unloaded and I am soon being wheeled along the paved walkways. I made sure before we left home  that the walkways were wheelchair accessible. As we quickly find out, their idea of accessible is very different from ours. From potholes to broken cement to hoses stretching across the walkways, my chauffeur has great difficulty navigating. I hear her breathing become more labored. I turn to her and say, we can go if you want to. And just like every other time I ask this question, she smiles and says no. She knows, thanks to unrelenting pain, I rarely leave home. She wants me to have a good time.

Hundreds of high school students are gathered in groups throughout the Garden. Avoid obstructions, I tell myself. Go this way, avoid the crowd. But, no matter how we try to avoid the clustered students, we eventually are forced to stop and wait for them to move so we can pass.

The invisible man, that is what I am to these students. They stand towering above me and my slumping body. We wait, hoping they will notice we can’t get by them. Few pay attention to the man in the wheelchair. Don’t get upset, I tell myself. They will move.

As we come up one of the walkways, I notice a large group of students standing on the walkway. I say to my chauffeur, let’s go home. She replies, no, they will move. As we close in on the group many of the students move allowing the Moses in the wheelchair to part the Red Sea. One student refuses to move. His girl turns to him and says, hey let the guy go by. He looks at me with eyes I have encountered many times before and moves just enough to let me get by. His girl is none to happy with him. With anger in her eyes, she pushes her man and tells him MOVE! Put in his place, the towering student complies and moves so I can pass by.

Such is life in the chair. I think everyone, healthy or not, should spend some time in the chair. Believe me, the world looks completely different from the seat of the chair. Simple things like navigating the grocery store become an insurmountable task. Are people callous or indifferent to the handicapped? Sometimes, but most people have no frame of reference for understanding the challenges of having to use a wheelchair. (or a cane) They can walk and move at will. Any obstacle can be moved or navigated around. For the  person in the chair, obstacles that are nothing for a healthy person, become a source of frustration.

I do my best to avoid crowds when I must use my wheelchair. But even then, at three in the morning at the local Meijer, shelf stockers often make the aisles impassable. They have a job to do, but I’d sure like to buy some groceries. I’ve concluded that there is no good time to go shopping. I must mentally prepare myself for the indifference of others. I must grit my teeth and ignore the pain inflicted on me by thoughtless shoppers. I think, someday, they will be where I am and then they will understand.  For now, I am just the invisible man in the chair.