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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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Why Are Some Evangelicals Obsessed With My Weight?

bruce gerencser 2015-002
Bruce Gerencser, 2015

Some Evangelicals who stumble upon this blog or find my page on Facebook take a look at my profile picture and, based on what they see, personally attack me by making derogatory comments about my weight or physical features. (see Did You Atheism Will Make You Fat?) Let me give you a good example of this. Several years ago, I received an email from a man named Bill Higgins. Higgins came to this blog via a Google search for “David Hyles Scandal.” His search gives away his religious preference; he is likely a Fundamentalist Baptist, the meanest and nastiest of the Christian species. Here’s what Higgins had to say:

I’m not that good of a Christian so I don’t mind saying this.

Why would you put a picture of you fat face on your website. I don’t respect fat people unless they have an excuse. I think you are just fat because you are lazy and spend to much time on your computer.

I don’t dare respond via email to people like Bill Higgins. To do so means I am giving a low-life like Higgins my email address and once I do that the emails never end.

I want to be clear about a few things. I know I am overweight, I am fat, obese, a lard-ass, whatever term people want to use for people like me. On most days, I am not ashamed of this fact. I don’t try to hide who I really am by using a picture of me taken 35 years ago. I am quite comfortable in my own skin, even if I have a lot more of it these days.

I wasn’t always overweight. When  I was 18 I was 6 foot tall and weighed 160 pounds. I played competitive sports all through school and continued to do so until I was in my early 30s. When Polly and I married in 1978 I weighed 180 pounds. After a few years of marriage, my weight reached 225 pounds and as long as I was physically active my weight stayed in the 225-250 pound range.

I have what people call a fire-plug build. My weight is pretty well-distributed from top to bottom. I don’t have a huge pot-gut like many men my size do. Ironically, because of my physical build, people often underestimate my weight. When I stopped playing competitive sports and started spending more time in the study, my weight began to climb. As I reached middle age, it became harder and harder to lose weight.

24 years ago, I came down with mononucleosis. My doctor treated me for months before he decided to do a mono test. By then, I was in big trouble and I ended up in the hospital. My liver and spleen were swollen, my tonsils and adenoids were white from the infection that was overrunning my body, and the internist told me there was nothing he could do for me. Unless my immune system kicked in and started fighting the infection, I would likely die. Well, it’s 2015, so it looks like I made it.

Mononucleosis in older adults is a serious matter. It can kill you. While I survived, the mono did a number on my body.  Mono left me with a severely compromised immune system and oddly it altered my  normal body temperature from 98.6  to 97.0. A few years later, I began to have widespread muscle and joint pain and I was fatigued all the time.  After a few years of seeing  specialists, they determined I have Fibromyalgia.  I was officially diagnosed with Fibromyalgia 18 years ago.

In 2006, I began to develop neurological problems; numbness in my thighs, face, arms and hands; loss of motor skills; memory problems. After tens of thousands of dollars of tests, several brain scans, MRI’s, CT scans,  and multiple specialists, it was determined that I have “we don’t know what the hell is wrong with you.”   While many of my symptoms point to multiple sclerosis, no doctor has been willing to say I have MS.

Last month, I wrote:

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

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

bruce 2015
Bruce Gerencser, 2015

Earlier this year I had an endoscopic ultrasound and a colonoscopy done in the hope that doctors could pinpoint why I have no appetite and why I am losing weight. (I’ve lost 50 pounds since Christmas 2014). While the weight loss has leveled off, I still have days where I have no appetite.  The tests found a lesion on my pancreas, and stones in my gallbladder. Good news? No cancer, though the lesion on my pancreas must be carefully monitored.

And then there’s my battle with skin cancer. Two months ago, I had a squamous cell carcinoma removed from my hip. In 2007, I had a basal cell carcinoma removed from my nose. I am currently going through topical chemotherapy treatment for cancer and precancer on my lower lip. My lower lip is a bloody, ugly mess, but it beats having to have invasive, disfiguring surgery done on my lip. Thanks to being a fair-skinned redhead  and repeated blistering burns as a child and young adult, I suspect I will be battling skin cancer the rest of my life.

As you can see, my health plate is full. I’ve resigned myself to the fact that unless someone comes up with a cure things won’t get better for me. I choose to embrace my life as it is. Wishing things were different doesn’t change how things are. The pervasive pain, muscle problems, and neurological problems, have debilitated me to such a degree that, on most days, it is all I can do to get up, do a little work in the office, and then spend the rest of the day in the recliner.

On the days when I think I am feeling better, I try to do some of the projects that need to be done around the house or yard. These activities tend to wear me out quickly and I often pay a heavy price for overdoing it. A few hours of work in the garage or yard often results in me having to spend a couple of days in bed or sitting in my recliner. Part of my problem is that I have never been good at doing anything halfway. Moderation? Not in my dictionary. Unfortunately, my inability or unwillingness to pace myself often extracts a hefty physical price from me. Like my friend Michael Mock told me, Bruce you are just one of those kind of people who just have to crash and burn. Out of the ashes I rise again only to start the process all over again.

An inability to do much of anything physically means I don’t burn off a lot of calories. I am not a glutton and Polly and I, for the most part, eat healthily. Because I am quite sedentary, it’s hard to have meaningful weight loss. It is not that I don’t do anything physically, but due to the physical problems I have I simply cannot do the physical things I want or need to do. It doesn’t help that I have to use a wheelchair or a cane to get around. I have turned into a slow-moving vehicle. I do what I can, but there are days and weeks that the pain is so severe that all the mind over matter pep talks in the world won’t help me move.

karah and bruce gerencser 2015
Karah and Bruce Gerencser, 2015

Some days, I can’t even bear to have anyone touch me. It just hurts too much. I love it when the grand kids come over, but by the time they are done tramping by my recliner, bumping into me, and jumping in my lap, I feel like the day after a bruising football game. I love having my grand kids around and they are one of the big reasons I get up in the morning and face another day. When they are here I grin, grit, and bear it, giving praise to the gods, of Vicodin, Tramadol, Naproxen, and Zanaflex. I would rather die than not be able to have my grandchildren sit on my lap. (see Please, Don’t Touch Me)

Back to Bill Higgins and his comments about my weight. Yes, I am overweight and there is little I can do about it. I try to watch what I eat, limit my carbohydrate intake, and eat my veggies. Yes, I do spend a lot of time in front of the computer and I watch a lot of TV. I also spend hours a day blogging, answering email, and reading. I would probably do less of these things if I could, but I can’t, so I am grateful for being able to read, write, watch TV, and search the internet.

Of course, Higgins, and others like him, don’t care about any of these things. In their mind, I am a fat, lazy, worthless human being and they enjoy trying to destroy me with their words. Do Higgins’s words hurt? Sure. Like most people, I want to be liked and respected. No one like being verbally assaulted. The internet protects people like Higgins from being held accountable for what they say. There is nothing I can do about this. As long as I am a public figure and write about the things I do, I know I am going to attract people who take great pleasure in demeaning me. Little do they know that their hateful words say more about them than they do me.

Thanks for reading. This is not a plea for understanding or support or a request for links to the latest, greatest cure-all or diet. This is me talking out loud. Maybe someone will find a bit of encouragement or understanding from what I have written.

Just Because I’m Fat Doesn’t Mean I Need to Change my Diet

bruce and polly gerencser 1978
Bruce and Polly Gerencser, February 1978 I am a size 30 waist and size 40 suit.

Rant ahead. Raw feelings revealed that might offend others. You have been warned!

I am quite open about my health and my battle with depression, chronic illness and pain. As most readers know, I recently had an endoscopic ultrasound to see if I had pancreatic cancer. I didn’t, which is good news, but the one thing that has irritated me through this whole process is the assumptions that people make about my lifestyle. If I would only do _______________, then all would be well, or so these I’m-not-a-doctor-but-I-stayed-at-the-Holiday-Inn people think.

Let me state the obvious: I am obese. I’ve been overweight for 30 years. Thanks to recent health problems, I have lost 35 pounds. I weigh less than I did at any time in the past decade. I do not feel one bit better for having lost the weight. My feet are still invisible and I can assure you that losing weight does not make your penis longer.

Are you laughing? A pastor told me years ago that he read you gain an inch in penis length for every 30 pounds you lose. According to this dimwit’s advice, if I got down to my BMI chart weight, I would gain six inches. That would certainly be porn-worthy.

Ten or so years ago, I saw an orthopedic doctor about a problem I was having with my left knee. After taking less than two minutes to talk to me about my knee pain, he pronounced that I needed to lose weight. Duh, like I don’t know that? But here’s the thing about my knees. I have a torn meniscus in each knee. I have had these tears since 1981. A doctor wanted to do surgery 30 years ago, but I decided to cut back on the amount of basketball I was playing instead. When I injured my knees, I was quite fit. I played basketball three times a week in the winter and spring and played softball several times a week in the summer.  My weight had NOTHING to do with my knee problem, but all the orthopedic doctor saw was an overweight man and he judged me without knowing the first thing about me. (My first sports related knee injury happened in 1973 when I was 16 years old.)

I am 57-year-old, fat man. Thanks to Fibromyalgia and a host of other problems not related to my weight, I can no longer physically do many of the things I used to do. (I must use a cane or wheelchair to get around.)  People who haven’t walked one step in my shoes or lived one day with the pain I have are quick to offer unsolicited advice about everything from exercise to diet to the latest, greatest alternative medicine. These advice givers take a bare amount of information about me, make some assumptions, and conclude I need to do ______________.

My cancer scare has encouraged people to give me advice about how and what to eat. Everyone has a diet for me, sure to fix what ails me. But, here’s what’s wrong with their advice: they don’t know how or I what I eat to start with. If they did, they would refrain from giving me unsolicited advice I do not need.

What’s the underlying assumption here? If you are overweight, fat, obese, plump, a tall person in a short body, or whatever term is used to describe your largesse, the assumption is you don’t eat right. Over the past few weeks, more than a few people have told me I need to change my diet. Eat this, don’t eat that. Eat less of this, more of that.

Here’s the thing, my eating habits, 95% of the time are fine. I eat lots of veggies and have a varied diet. Most of time, I don’t overeat. I will consume eat a candy bar from time to time, along with a donut here and there, but I don’t drink pop. If we buy cereal, I will eat it and if we don’t I won’t. Most of my meat-eating is fish and chicken. Simply put, my diet is not the problem.

I am never going to be a vegan, vegetarian, or a raw food eater. It ain’t gonna happen. If that’s how you eat, fine, but I have no desire to eat as you do. I try to eat responsibly and healthily, but I have no desire to obsess about food and turn it into a religion. I read labels, count calories and carbs, and try to have a lot of fiber in my diet. I don’t need any more information about food and diet. I know all I need to know.

Here’s the real problem I have with those who preach the change your diet gospel to me. They take what works for them and they assume it will work for everyone. They practice bad science when they equate the health problems I have with diet. I know of no study that equates a bad diet with Fibromyalgia. I have MS-like neurological problems. I know of no study that equates a bad diet with Multiple Sclerosis.

Yes, I have high blood pressure, but even here, is my high blood pressure caused by my weight or diet? I doubt it. I took the time a few years ago to research my medical records all the way back to when I was six years old. I found an interesting thing; my blood pressure was marginally high way back when I was a teenager. I have an aunt on my Mom’s side, along with several other relatives, who have high blood pressure. But, here’s what’s interesting: none of them is overweight.

I have one health problem that is directly related to my weight and diet and that is diabetes. When people hear that a person is diabetic, they assume the person is on insulin. I am not on insulin. I take a small amount of medicine each day. My blood glucose levels are under control and my A1C level is on the high side of normal.

Let me sum up this post. Yes, I am fat but there is little I can do about it. I try to eat well and I don’t, most of the time, over feed. I’d love to run, play ball, and exercise, but I can’t. Those who have the kind of problems I do know this, and they, too, have had to deal with the judgements and comments of the exercise police. I do what I can. I am not a lazy person; if anything, I tend to overdo.

I know this is hard for the physically fit to understand. Through the lens of their personal experience, they judge fat people, concluding they are lazy and indulgent. This may be the case for some fat people, but I know one obese Hungarian for whom that is not the case.

Here’s what I want from family and friends. I want love and support. I don’t need fat shaming or subtle condemnation. I don’t need diet books, diet articles, or personal opinions about my eating habits and diet. I know all I need to know about food, diet, Fibromyalgia, chronic illness, and chronic pain. A lack of knowledge is not my problem.

Why is that people take it upon themselves to offer unsolicited advice about diet and food? The same goes for medical advice from people who have no medical training and don’t know the intricacies of my health problems. I have a good primary care doctor. I know how to read and I know how to properly and sufficiently investigate the various health problems that afflict me. Again, I am well cared for and educated.

I have a great marriage — 37 years to a wonderful woman. Not everyone has a marriage like Polly and I have. I have friends who have challenging marriages. I also have friends and family who have had their marriages end in divorce. Imagine me writing them and telling them, based on my own marriage, how to have a successful marriage. Imagine me writing my divorced friends and telling them how they could have avoided a divorce if they had just read and practiced Bruce and Polly’s 27 steps to a Long Marriage©. Offensive, yes? Why then is unsolicited advice about diet and eating habits any different?

Yes, I could stand to lose some weight. Yes, I could ALWAYS eat less of this and more of that. Yes, I could always make improvements in my diet. I am quite good at self-judgment and I know the difference between lazy and can’t. What I want from my family and friends is love and support, not unsolicited advice and judgment. When I want or need the advice of others, I will be sure to ask for it.

Now, let me get the ice cream out, put  six scoops of rocky road in a bowl and cover it with hot fudge, whipped marshmallow, pineapple, nuts, and a cherry on top. Oh wait, there is no ice cream in the freezer. Damn! I need to get Polly to bring home some healthy ice cream.

Note

Here’s my listing in Conservapedia’s wiki on Atheism and Obesity

conservapedia bruce gerencser

 

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