Tag Archive: Chronic Illness

A Man and His Wife

polly gerencser 2013

Polly Gerencser, 35th Wedding Anniversary, 2013

repost from July 2013, edited and corrected

It is a warm summer day in Manistee, Michigan. A man and his wife of thirty-five years get out of their black Ford Fusion to view Lake Michigan. They love the water, and if their life’s journey had taken them on another path perhaps they would live in a cottage on the shore of one of the Great Lakes or in a small fishing village on the Atlantic coast.

But as fate would have it, Ohio has been their home for most of their marriage. No matter where they moved, be it Texas, Michigan, or Arizona, they always came back, like the proverbial bad penny, to Ohio.

For the past six years they have lived in rural NW Ohio, in a small community with one stoplight, two bars, two churches, a grain elevator, gas station and 345 people. They live in a town where nothing happens, and the safety and stillness that “nothing” affords is fine by them.

They have made their peace with Ohio. After all, it is where their children and grandchildren live. This is home, and it is here that they will die some moment beyond their next breath.

But from time to time, the desire to dip their feet in a vast expanse of water, to hear the waves crashing on a shore and to walk barefooted on the beach calls out to them, and off they go.

They can no longer travel great distances; four to six hours away is the limit.  The man’s body is used up and broken, most days he needs a cane and some days a wheelchair to get from point to point.  Long trips in the car extract a painful price from his body, a toll that is paid weeks after they have returned home.

But today, the water calls, and on a warm July day they travel to South Haven, Michigan and then up the eastern shore of Lake Michigan to Manistee. Their travels will later to take them to Sault Ste Marie before they return home to Ohio.

Few people are at the Manistee beach, so unlike South Haven where the beaches and streets are filled with pushy, bustling, impatient tourists. The man and his wife have been to South Haven many times, but as they see the scarcity of people and the quietness of Manistee they say, I think we have found a new place to stay when we vacation.

plovers manistee michigan 2013

The beach is owned by thousands of Plovers. It is an amazing sight to behold. The man and his wife are mesmerized by the birds, and the man, ever possessed of his camera, begins to take pictures.

Soon the serenity of the place is ruined by a stupid boy who sees the birds as worthy of his scorn and derision. The birds are covering the landscape of HIS beach, and he will have none of that. So he runs through the mass of birds screaming and waving his arms. This put the birds into flight, complaining loudly about the stupid boy.

The man and his wife turn their attention to the pier and lighthouse in the distance. She asks, Do you think you can make it? He replies, Sure. So off they go.

As they begin their slow, faltering stroll on the pier, they notice a sign that says, No Jumping or Swimming off the Pier. The man smiles quietly to himself as he sees four teenage boys doing what the sign prohibits.  He remembers long ago when he, too, would have looked at the sign and proceeded to do exactly what the sign prohibited. He thinks, the folly, wonder, and joy of youth.

As the man and his wife pass the boys in the water, one of them calls out and says, How are you today, sir? The man thought, Sir? Am I really that old?  He knows the answer to the question before he asks. For a few moments the man talks with the boys, then haltingly continues to walk down the pier with his wife.

Not far from the boys, the man and his wife come upon a pair of ducks: a male, his female, and their brood of ten young ducklings. New life. The man wonders: How many of the ducklings will survive their youth? He knows the answer and this troubles him a bit. A reminder, that, for all its beauty, life is harsh, filled with pain, suffering, and death.

The man and his wife turn back to where the boys are swimming. The man thinks, as he looks at the shallow water with its rock-filled bottom, This is a dangerous place to be diving into the water.

But the boys are oblivious to the danger. The man’s mind races back to the days of his youth, remembering a time when he too lived without fear, enjoying the freedom of living in the moment.

One of the boys climbs back up on the pier and prepares to jump into the water. The man, a hundred feet or so from the boy, points his camera toward him. The man quickly adjusts the shutter speed, focuses the lens, and begins to shoot.

boy manistee michigan 2013 (2)

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The man and his wife laugh as they watch the boy. Collectively, their minds wander back to a hot summer day in July when they joined their hands together and said, I do. Thirty-five years ago, they embraced one another and jumped off into the rock strewn water of life, and survived.

Together they turn to walk back to the car. As they pass the boys, the man shouts, I am going to make you famous. The boys laugh and continue on with the horseplay that dominates their day.

The boys will never know that their innocence, their sign-defying plunges off a pier in Manistee, Michigan, warmed the heart of the man and his wife.

It Doesn’t Always Happen to Someone Else

why me

As a Christian, I believed that if I prayed God would take care of me and he would make sure calamity didn’t show up at my doorstep. In those rare instances when it seemed that God wasn’t answering my prayer and I was facing disaster, I thought that God was either testing me or chastising me for disobedience.

I was relatively healthy until the early 1990s. I played basketball in the winter and softball in the summer. In the fall I cut wood, spending hours sawing felled trees into wood stove sized pieces. I hunted in the fall/winter, walking for miles in the Appalachian foothills. I was, by every measure, a healthy, but increasingly overweight man. Today, I am a crippled old man, worn thin by chronic illness and debilitating pain.

I am still amazed by how quickly the circumstances of my life have changed. It seems that life is being sucked out of me ever so slowly. Gone are the days of strenuous physical activity. Now I am happy if I can do things of physical nature a few days out of the month. Our home is littered with projects in various stages of completion. I will get to these projects soon, I tell myself. The pile of unread magazines on the bedside table continues to grow. I stubbornly refuse to cancel the subscriptions because I just know I am going to catch up on magazine reading one of these days. The same could be said for the unread books that line the shelves in the living room.

Recently, I went over to my oldest son’s home to wire their new bedroom and bathroom. My coming over to help quickly turned into me taking extra doses of pain medication and sitting on a chair while I told others what to do. I was able to get the circuits where they needed to go, and I suppose I could make myself feel good over my son still needing my expertise, but I quietly wept inside as I thought about how much I have lost. Any attempt to do something physically strenuous is met with the screaming objections of my body. I push through the pain, knowing that I will pay a heavy price for ignoring by body’s vociferous objections. I shouldn’t do these things anymore, but the only thing worse than not doing them, is feeling that my expertise and help are no longer needed. We all want to feel needed by those we love.

One of the biggest issues that dominates my every-other-week counseling sessions with Dr. Deal is my unwillingness to embrace life as it is. Even my family doctor has talked to me about the fine line between giving up and embracing the reality of how my life is. There will be no more days of playing basketball or softball. There will be no more days of feeling the sweat run down my face and back as I cut wood on a crisp fall day. There will be no more days of trudging through the woods playing a game of hide-and-seek with a cottontail rabbit or a fox squirrel. No matter how much I want it to be different, I will never be able to read like I once did. While the voracious appetite for the printed page is still there, the ability to process it is long gone.  This is my life, and there is not one damn thing I can do about it.

As a Christian I believed that my physical afflictions were the result of God making me more like Jesus. I believed the way to heaven was paved with suffering. I can confidently say that God never answered one prayer of mine when I cried out to him for physical relief or deliverance. I came to see that I was like the Apostle Paul who prayed for deliverance and God told him no. (2 Corinthians 12:6-9)

These days I now realize that the diseases that are  ever-so-slowly taking life from me are the result of a combination of genetics, environment, and lifestyle choices with a topping of “who the hell knows.” When I whine and complain about my lot in life and say “why me?” the universe shouts back, “why not you?”

Bad things don’t always happen to other people. It is not always another family’s child that gets cancer or is killed in a car accident. It is not always someone else who has a brain tumor, goes through a divorce, or loses a job. It is not always someone else who loses everything in a fire, tornado, hurricane, or a flood. The truth is that life is a big crap-shoot: good luck, bad luck, at the right place, at the wrong place, good genetics, bad genetics, growing up on the right side of the tracks, growing up on the wrong side of the tracks, marrying the right person, marrying the wrong person. The list is endless.

As I peruse the ways of humankind, it is clear to me that very few people live to be old without facing trial and adversity. It is just how life is. If there really is a God, I might find some pleasure and satisfaction in saying DAMN you God  But since there is no God, I am left to shout at a universe that yawns at my death-defying struggle. If the universe could speak it surely would say, this movie always ends the same way. Dead. Next.

It is futile to see life other than as it is. Wishing for days that are long since gone only results in depression and despair. We must embrace life as it is while we go kicking and screaming into the night. We have two choices in life: fight or roll over and die. Yes, life is unfair and bad things happen to good people. Shit happens and it doesn’t always happen to someone else.

Let me end this post with a poem by Dylan Thomas, an early 20th century poet who died at the age of 39:

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieve it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Chronic Illness: Convincing Yourself Things Are Not as They Seem

i am fine thanks

Regular readers know that I battle chronic illness and unrelenting pain from the moment I get up until the time I fitfully fall asleep in the wee hours of the morning. For those of you who are new readers, let me give you the short version of my medical resume:

I have Fibromyalgia, which causes pervasive fatigue and muscle pain. I also have nerve pain in my face, hands, and thighs, loss of motor function and strength, osteoarthritis in every joint, including my back, frequent loss of bladder control, diabetes, and high blood pressure. Since late last year I’ve gone through numerous tests in an attempt to figure out why I am losing weight and frequently don’t feel like eating. An endoscopic ultrasound found a lesion on my pancreas and enlarged lymph glands. So far, they have not turned cancerous. I’ve been treated twice this year for squamous cell carcinoma (hip and lip) and several years ago I had a basal cell carcinoma removed from my nose. I have a labrum tear in my right shoulder and joint damage in my left shoulder, feet, and knees.  I require the use of a wheelchair and/or a cane to get around.

This is my life. There’s little I can do to change it. I hunker down and try to live the best way I know how. It’s been a decade since I’ve had what I call a good day. These days, a good day is one where the pain is manageable and I can work in the office for a few hours and maybe go to a football game with my sons. A bad day is one where narcotic pain medications do little to ameliorate my pain and I am left curled up in bed wishing I were dead. Depression is the dark passenger in my life, and there are times when I fight the desire to end the suffering and pain.

I know there is no cure on the horizon, no magical drug that will make everything better. I’ve been tested, retested, and tested again, so much so that I glow in the dark. I have blood work at least six times a year.  My last blood draw required seven vials of blood, and that was after the phlebotomist stuck me three times trying to find one of my deep veins that would give enough flow to fill seven tubes. Despite all these tests, I remain, to some degree, an enigma to doctors, a patient with symptoms that don’t neatly fit into a specific diagnosis box.

As a skeptic, atheist, and humanist, I accept that life is what it is. I know that a deity isn’t going to magically heal me, and I’ve concluded neither are doctors. I have two choices in life; either endure whatever life bring my way or roll over and die. So far, I’ve chosen to endure, Yes, I hope for better days and I certainly desire for the good days to outnumber the bad days. But, regardless of my thoughts and desires, the die of my life is cast. In eighteen months I’ll be 60 years old. I’ve lived a decade longer than my father, who died of a stroke at age 49, and five years longer than my mother, who killed herself 23 years ago. I’ve watched death rob me of those I love, and I have little doubt that death is lurking in the shadow of my life, ready to claim me for its own. Death, like life, is certain, and as anyone who is chronically ill can tell you, the prospect of death is an ever-present reality.

Yet, I can have delusional moments where I pretend I’m not sick. There are times I become quite depressed as Polly goes off to work each day. As a man who was taught that the husband is supposed to be the breadwinner, I find it emotionally and mentally  painful to watch the most important person in my life go to work every day so we can have a roof over our head, food to eat, and all the trappings of a typical Midwestern lifestyle. I tell myself that Polly was a stay-at-home mom for many years and now our roles are reversed, but I still wish I could be the one kissing my spouse goodbye and saying I love you as I walk out the door for work. I know this will never be the case, but I can, at times, trick myself into believing that I can once again be Bruce Before Illness and Pain.

The chronically ill are known for convincing themselves that things are not as they seem. Put mind over matter, well-wishers tell the sick person. I’ve tried just such an approach many times over the years. Sickness be gone, pain depart, I say to myself. I can do anything I want to do. The only thing standing my way is me! Try as I might to convince myself that a wonderful new day has dawned, it’s not long before reality slaps me up the side of the head and asserts its rule over my life.

I continue to scan the help wanted ads, looking for the perfect job for a broken down, incapacitated old man. Every once in awhile, I’ll apply for this or that job, thinking that the prospective employer will be sure to call. Rarely does the phone ring. Recently, I applied for a job that required 2-5 hours every other week stocking display counters at the local Meijer. I sent the company my resume, and a week or so later they contacted me for an interview. On the day of my interview, I made sure I looked my best, donning a crisply pressed shirt and dockers. Not wanting to give off the cripple vibe, I left my cane at home and uprightly walked into Meijer for the interview. I was sure that this was the perfect job for me. Just enough work to restore a bit of my self-esteem and provide added income for our household budget.

The interview went well. I generally interview well. Having hired hundreds of people in my day, I know what an interviewer is looking for. I was pleasant, made eye contact, and asked the interviewer questions about herself, the company, and the job. She seemed to be excited about the prospect of hiring someone like me. Or perhaps, I just thought she was excited. Regardless, I left the interview thinking I would soon be stocking batteries at the local Meijer. A few days later I learned the company chose someone else for the job.

Not being chosen for an inconsequential, low paying job resulted in a weeks of depression and thoughts of suicide. Try as she might, Polly couldn’t rescue me and all my counselor could do was keep me holding on to the proverbial knot at the end of life’s rope. In time, the dark clouds lifted and I was able to put the rejection behind me.

I can convince myself that I can still work like I did before 1997, the year I was diagnosed with Fibromyalgia. I’ll convince myself that I can stand on my feet for hours at a time, even though I can rarely stand for more than an hour. Just shopping for groceries requires me leaning on a shopping cart, and by the time I leave the store my body is screaming in pain.

My body never lies, but I do. I lie to myself, and I often lie to Polly. I’ll tell Polly that I want to apply for a job at this or that store and she’ll give that look I’ve see uncounted times before. But I can do it, I tell her. I won’t know until I try, right?  The love of my life lets me drift on the sea of my delusion, knowing that I will sooner or later realize I can’t do what the job requires me to do. She never looks down on me or chides me for trying the impossible. She knows, based on almost 40 years of loving me, that I am a proud man, a man who has a hard time embracing his life as it now is.

Sometimes, I will inflict greater pain on myself, refusing to give in to what my body demands of me. Last Friday, my sons and I attended a local high school football game. The night before I got about 4 hours of sleep, and wisdom dictated that I cancel my plans to go to the game. So much for wisdom. I went to the game and endured three hours of being battered by people walking up and down the aisle. A man in back of me, thinking he still was in high school, spent the night cheering loudly and stomping his feet. Every time he stomped his feet my body rippled with painful shock waves. By the time the last touchdown was scored, I was ready to murder the man where he stood.

After the game was over, I haltingly made my way down to the ground. This particular school decided to build its football stadium a long distance from the parking lot, and I wondered if I was going to be able to make it back to the car. With head down, teeth gritted, I walked toward the car. My sons, still in their prime, quickly, even with grandchildren in tow, outdistanced me, and soon they were yards ahead of me. They stopped, allowing me to catch up, only to find me straggling behind a few minutes later.

During the game, we had been talking about Polly’s parents, her Dad’s upcoming hip replacement, and their unwillingness to change their way of life. Pride was their problem, we decided.  As I walked towards the car, a woman in a golf cart stopped and asked if I would like a ride to the car. Everything in my being said YES, but pride turned her offer of help away with a, no, I’m fine. Thank you. A few minutes later another woman in a golf cart stopped and  again asked if I needed a ride. I gave her the same answer I gave the first good Samaritan. My oldest son, watching my obstinate denial of reality, laughed and reminded me of my own pride. I chuckled, and then continued on my way to the car.

My son,of course, was right. It’s pride, the desire to rise above my illness and pain, that often brings more pain and debility. Try as I might to see my life as it is and embrace my new reality, I continue to have times when I attempt to conjure up the Bruce that existed before illness and pain took from me much of what made me a man. I look at old photographs and weep, lamenting a life that once was. And then I dry my eyes and remind myself that nothing I do can bring back that which is lost. The best I can do is embrace life as it is. I have a beautiful wife, six wonderful children, and ten awesome grandchildren. Surely, I’m blessed with that which many people would give anything for, I remind myself. I can choose to lament what’s been lost or rejoice over what I still have.

Today, I rejoice. Now, where’s the employment section of the paper?

[signoff]

How Fundamentalist Prohibitions Cause Needless Suffering and Pain

sin can make you sick

Polly’s father is almost 80 years old. In poor health, suffering from severe spinal deterioration and arthritis, Dad has decided to have a total hip replacement. While Polly and I are absolutely against him having the surgery, it’s his life and he is free to do what he wants. Dad is in constant pain and he hopes that having the hip replaced will lessen his pain. The doctor gave no guarantees and, having worked with many hip replacement patients when I worked for Allegro Medical, a Phoenix based direct medical equipment supply company, I’m worried that the surgery could make his pain worse or land him in a nursing home. It’s hard to stand by and do nothing as parents make decisions like this, but Dad and Mom are competent to make this decision, so we will do all we can to love and support them. We remind ourselves that someday we will be where they are.

By now, you are probably trying figure out how the title of this post, How Fundamentalist Prohibitions Cause Needless Suffering and Pain, fits with what I have written so far. Let me explain. Dad was always a hard worker, often able to work circles around men half his age. He and I got along well because we both had that workaholic drive, the need to constantly be busy and get things done. However, at the age of 65, Dad was in an industrial accident that injured his back and required immediate surgery.

Soon, pain became an ever-present reality. Dad, having been taught that taking narcotics could lead to addiction, refused to take anything more than Tylenol or aspirin. Later in life, Naproxen was added to the mix as was Darvocet, a drug that was later removed from the market due to serious side effects. Dad would do his best to only take what he thought he needed, often only taking half a pill or going without taking anything for several days. No matter how often I reminded him that it would be better if he took the drugs regularly and on schedule, he continued to endure the pain rather than take the drugs as the doctor ordered.  A year or so ago, Dad’s doctor gave him a prescription for Tramadol and a few weeks ago he gave him a script for Oxycontin. Finally, I thought, he will find some relief for his pain and suffering. Sadly, that was not to be the case.

You see, Dad is afraid of becoming addicted and this is one of the reasons he is having a total hip replacement. In his mind, if he has the hip replaced, perhaps the pain will lessen and he won’t need to take the Oxycontin. No addiction, and God will be happy.  I would try to explain to him the difference between addiction and dependence, but I don’t think he’d hear me. Having been a narcotic user for over a decade, I know that I am dependent; I’m not an addict. I take the drugs as prescribed. I wish that Dad could see that being dependent is no big deal and that regularly taking Oxycontin will reduce his pain and improve his quality of life.  Unfortunately, thinking drug dependence is a sin keeps Dad from getting the full benefit of the drug.

This is a perfect example of how fundamentalist prohibitions cause unneeded suffering and pain. From preaching that says addiction (dependence) is a sin to viewing pain and suffering as some sort of test from God, many fundamentalists eschew drugs and treatments that would likely improve their quality of life. Better to suffer for Jesus, the thought goes, than to become dependent on narcotics. In just a little while, Jesus is coming again…so endure until you see your Savior’s smiling face.

As an atheist, I am deeply troubled by this kind of thinking. Since I think this life is the only one we have, we should do all we can to eliminate not only our own pain and suffering, but the pain and suffering of others. Since there is no heaven and no reward in the sweet by and by, why needlessly suffer? Better to become dependent on narcotics and have some sort of pain relief and improved quality of life than to go through life suffering, only to die in the end.  While I certainly think having a chronic illness and living with unrelenting pain has made me more compassionate, I don’t wish such a life on anyone, especially those I love.

How about you? Were you taught that taking narcotics and becoming dependent on them was a sin? Please share your story in the comment section.

Note

I pastored numerous people over the years who thought taking pain medications was a sign of weakness or lack of dependence on God. I watched one man horrifically suffer from bowel cancer, unwilling to take drugs for the pain. I’ve come to see that this is the Evangelical version of the Catholic self-flagellation.

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[signoff]

Have You Tried (blank)?

chronic illness

Because I am forthcoming about the health problems I have, well-meaning people often give me unsolicited medical advice. Sometimes, they don’t know what to say so have you tried ________________ becomes the secular version of I’ll pray for you. Other times, the person refuses to believe that what’s wrong with me can’t be fixed. Surely modern medicine, alternative practitioners, and witch doctors can fix anything, yes? Or so the thinking goes.

Many people have a simplistic view of health, sickness, and how the body works. They wrongly think that if I just eat right or takes this or that vitamin/supplement that every health problem I have will be cured. Some people think that doctors deliberately keep us sick so they can make money; that there is a grand conspiracy between doctors, hospitals, and pharmaceutical companies to keep people sick so they can profit from their sickness. According to people who think like this, I should see a herbalist, homeopath, reflexologist, acupuncturist, accupressurist, aromatherapist, chiropractor, or irridologist–anyone but a doctor. Armed with anecdotal, subjective stories about miraculous healing, they are certain if I would just get away from Western doctors that all would be well.

I am all for trying anything that is evidence-based and has a proven track record. What I’m not willing to do is waste my time on woo-woo (pseudoscience, quackery). Every week a family member, friend, or reader of this blog sends me an email with a link to a surefire cure for what ails me. They are certain, based on their superficial reading of an article, that if I will just try __________ I will be cured. Again, if there are peer-reviewed, double-blind-studied treatments that hold out the possibility of helping me, then I am all for  them. Sadly, most of the links sent to me are woo-woo.

When you’ve suffered for a long time and have to deal with unrelenting pain each and every day, it is easy to get upset when someone with good intentions says have you tried _______________. I try to be polite, realizing the person just wants me to be better, but the constant unsolicited medical advice does wear on me.  My health problems are very much a part of the fabric of my life and I think it is important for me to write about them, but I find I am less willing to do so because of the unsolicited medical advice that comes when I do.

I am well read on the subject of Fibromyalgia, auto-immune diseases, and arthritis. When I was first diagnosed with Fibromyalgia 17 years ago, I read every book about Fibromyalgia I could get my hands on. When new studies come out I read them and try to look at the methodology the study used to come to its conclusions. Many studies have come and gone, with most of them offering little hope to people with Fibromyalgia. While doctors and researchers continue to study the various diseases that afflict me, so far there are no cures.

Over the years, I’ve tried numerous drugs, supplements, and treatments, all to no avail (along with tens of thousands of dollars of tests). At this point in my life, I am satisfied that I have done all I can do. For someone like me, hope can be a cruel thing. Better to embrace life as it is than to constantly hope for that which will never happen. It’s unlikely that a new drug or a new treatment for Fibromyalgia will be found in my lifetime (and no, Lyrica is not a cure for Fibromyalgia). Researchers are a long way from definitively understanding what causes Fibromyalgia,  and even further away from coming up with a treatment for it. And even if a cure for Fibromyalgia is found, I would still be left to deal with arthritis, a disease that can be managed but not cured.

I appreciate every one of you who has supported me over the years. Your gentle encouragement and love mean the world to me. While doctors can do no more for me, your support  gives me strength and motivates me to get up in the morning (or early afternoon) and continue to write for this blog.  Thank you for making a real difference in my life.

Bruce

Note

Last night, Polly and I watched the first episode of The Daily Show with Trevor Noah. (It was awesome, BTW.) Comedian Kevin Hart was Noah’s guest. Noah asked Hart about his commitment to physical fitness and Hart told him that running was the most important part of his fitness regime. He then went on to say that he sees himself as an evangelist of all sorts for running.  Hart said, everyone can run!  I hollered, no, dumb shit, they can’t. I can’t run, nor can I walk long distances. I know I will never run again and I have no doubt that I will someday be wheelchair bound. As it is, I can walk or stand on my feet for, at most, an hour. When we go to the grocery, I must hold on to the cart so I can stand upright (it also keeps me from falling).  Fifteen to thirty minutes into our shopping, I will feel warm, stabbing pain in my upper thighs, face, and lower back. A few minutes later, these areas will burn and feel as your foot does  when it  falls asleep. Doctors theorize this has to do with my back and the numerous narrow disk spaces I have, especially in the lower back. So, run? Not a chance. I’m just happy to walk through Meijer without having to bend over the cart or sit down to relieve the pain.

One thing that would help is medical marijuana, but it is not legalized in Ohio.

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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.

I Refuse to Accept This

accepting things as they are

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

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

I have been criticized, often behind my back, for the stoic attitude I have about my health. Since 1997, when I was first diagnosed with Fibromyalgia, I’ve seen numerous doctors, had more blood tests than I can count, and have had repeated scans and procedures. Just this past year alone, I’ve had an endoscopic ultrasound, colonoscopy, CT scan, MRI, and 3 x-rays. Several months ago, I tried using Lyrica again. As before, it helped, but I gained 17 pounds of fluid in one month. Not good when you are already overweight.

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.

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

The Bruce and Polly Fantasy Game

white birch clare michigan 2003

House we rented in White Birch, a wooded community north of Farwell, Michigan. At the time, I was pastoring Victory Baptist Church, Clare Michigan 2003


white birch clare michigan 2003-001

House we rented in White Birch, a wooded community north of Farwell, Michigan. At the time, I was pastoring Victory Baptist Church, Clare Michigan 2003

Depression Sea is roiling today, my mind is twisting, turning, and dying.

She knows, she always knows. My face and body language tell a story she’s read time and again.

She worries that this time the story might have a different ending.

I’m at the doctor’s office.

Wasn’t I here last month? I already know the answer, having made the trip eight times and the year isn’t even half over.

As we wait for the nurse to call my name, we play the Bruce and Polly Fantasy Game®.

Playing the game allows me to change the monotonous, deadly channel that keeps playing over and over in mind.

We look at one another, smile, and begin the game.

The game always has the same answers, but we like to play anyway.

In the Bruce and Polly Fantasy Game®, we take shared places and experiences and meld them into one. A fantasy, to be sure, but who knows, maybe we’ll strike it rich, rob a bank, or write a book detailing where Jimmy Hoffa is buried.

Spring in Ohio, with its promise of new life and flowers.

Fall in Ohio, with its crisp air and changing colors.

Winter in Arizona, no snow for us, we survived the Blizzard of 78.

Summer in the Upper Peninsula , nestled as close to our Canadian friends as possible.

Our rented  house from White Birch, Michigan, with a 1970 green Nova SS sitting in the drive.

bruce 1970 nova ss

Bruce putting water in 1970 Nova SS, March 1976, somewhere in Kentucky

Package these things together and magically move them to the eastern seaboard, to a small, out-of-the-way fishing community on the shore of the Atlantic.

Turn the house so it fronts the Ocean, allowing us to sit on our deck and watch the sunrise and the fishing boats making their way to the secret spots known only to those whose hands and face bear the weathered look of a lifetime spent fishing.

Nearby live our children and grandchildren. Not too close, yet not so far as to be beyond an invite to a Saturday night BBQ.

This is Bruce and Polly’s fantasy.

She remains worried, wondering if the slough of despondency will bury the man she loves.

All I want is for the pain to stop.

Is that too much to ask?

I already knows the answer. I always knows the answer.

The nurse calls my name and I  haltingly walk to the exam room.

No weight gain, medications the same, pulse 78, and blood pressure just a little high. Refills ordered, sure is hot, hate the humidity, how’s Bethany, he’ll be in to see you soon.

The doctor walks through the door and sits near me.  Eighteen years we’ve danced to this tune, both of us now dance much slower than we once did.

The doctor thinks I am chipper today, better than last month.  Little does he know what I’m really thinking. We talk about the Reds, Todd Frazier, Johnny Cueto, and the All Star game. I promised the nurse that we wouldn’t do our thing, our thing being shooting the breeze while other patients wait. I lied. He’s behind and I’m to blame.

We shake hands and afterward I put my hand gently on his shoulder.  I tell him, see you in two months. This sounds like a lie, a hollow promise with no hope of fulfillment.

I want to live.

I want to die.

We stop at St. John’s produce tent and buy some local strawberries. $3.50 a quart. We buy some Georgia peaches too, which will turn into pies for Sunday. The strawberries will top the angel food cake she will make in the morning; just like every other June 19th for the past thirty-seven years.

bruce and mom 1957

Bruce and his mom, July 1957

June 19, 1957, in a building years ago torn down and replaced with a new one, at 9:01 AM I drew air into my lungs for the first time. A new life born into poverty in a nondescript rural Ohio community, delivered by a doctor who also worked as a veterinarian.

The path is now long and how much path remains is unknown.

Will the game be called today or will we get to play, for the nth time the Bruce and Polly Fantasy Game®?

I’m still betting on playing the game.

Note

For those who struggle with chronic pain and illness, a birthday can often lead to deep depression, a reminder of all that has been lost. While the healthy focus on all they have, those in pain and who suffer from years of chronic debility can, and often do, focus on how much they have lost. Yes, it is wonderful to have a sliver of life to hold on to, to have a spouse, children, and grandchildren who love you, but nothing can ameliorate the sense of loss.

This is not a cry for help. I am just talking out loud with friends.

Medical Marijuana and Relieving Pain and Suffering

letter to the editor

Letter to the Editor of the Defiance Crescent-News, submitted on June 14, 2015

Dear Editor,

Rarely a week goes by when there is not a letter to the Editor from a fundamentalist Christian demanding their moral code and peculiar interpretation of the Bible be accepted by all.  Even when they aren’t quoting the Bible or reminding local unwashed, uncircumcised Philistines of their impending doom, their letters reflect an addled worldview, one shaped by an ancient book they think offers them unchanging truth. If their beliefs were kept in the church house, non-Christians would care little and hope that one day they would see the light. However, their beliefs are not kept in the church house, and because of this people of science, reason, and common sense must continue to push back as Christian fundamentalists try by legal and political means to force people to live by a worldview that is better suited for the dustbin of human history.

Take a recent letter writer who vehemently opposes legalizing the use of medical marijuana in Ohio. Even though they didn’t mention one Bible verse, their letter dripped with the fundamentalist presupposition that suffering and pain are in some way noble and good for us. Numerous Bible verses would certainly lead one to conclude that suffering and pain have probative value and makes us closer to God and keeps us from clinging too closely to this life. If we buy into this kind of thinking and accept Jesus as our Lord and Savior, a life after death that is free of suffering and pain awaits us.

Sounds sublime, right? But, what if there is no life after death, no divine payoff for trudging through life suffering for Jesus and enduring pain because it will make us stronger?  What if the only life we have is this one? Well, that changes everything. If this life is it, and I think it is, then we should try to relieve not only our own pain and suffering, but that of others. As a committed humanist, I would never want to withhold from anyone that which would relieve or end their suffering and pain. Whether it is narcotic pain medications, medical marijuana, or physician assisted suicide, I want every human to have at their disposal the means to lessen their suffering and pain.

Any religion that values suffering and pain is one that should be roundly criticized and rejected. And if Jesus were alive today, I suspect he’d agree with me.

Bruce Gerencser
Ney, Ohio

Wanting to Die


There are good days.

So so days.

Not good, but will make until tomorrow days.

Then there are I want to die days.

Not really die.

Well, some days I really do.

Sometimes wanting to die is a state of mind.

Other times the desire is as palpable as the heart beating in my chest.

Am I my mother’s son?

Will her suicidal path be mine?

Will a day come when I can no longer bear to endure another sunrise having not known the relief of sleep?

There are times that thoughts of suicide are a dark passenger, one that lurks in the shadows making itself known when the pain becomes unbearable.

Two of my sons are helping put in a gas line for our new stove.

Not really ours.

Polly’s dream stove.

I have a plan, but five hours later I tap out, admitting that the planned path from meter to stove will not work.

I wonder, do my sons think I am stupid, a feeble man who can no longer see every obstacle and a way to get around them and reach the objective?

I am no longer THAT man.

Gone is the man who could have his way with world.

Gone is the man who could work night and day until the project is completed.

Gone is the muscle, the brawn, the mental and physical wherewithal to have my way with whatever I set my hands or mind to.

I am left with the shell of the man I once was.

Pain, from the muscle bands attached to my skull to the joints in my feet and every place in between.

At best, narcotics provide a brief respite from the pain.

At worst, they are like taking aspirin for a migraine, like pissing into the wind of a hurricane.

As my oldest son finds a new route for the gas line, I go to the garage.

I am alone.

Really, really alone.

My sons don’t need me.

Without or without me the gas line will be finished and Polly will be in cooking heaven.

I bend over the bench in the garage and I weep.

Why won’t the pain stop?

Dumb question, I know the answer.

Do I want to live like this for another day?

I find this question hard to answer.

As I type this my entire body screams for deliverance, but I know only death will quell the screams.

Am I ready to die?

Today?

Now?

No, not today.

Not now.

I want to eat what Polly cooks on her new stove.

Understanding and Helping Those Who Live With Chronic Pain

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

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

Since November of last year, I’ve had to deal with new health problems that so far have doctors perplexed. First, they thought maybe it was pancreatic cancer or my gallbladder. After $25,000 of tests, procedures, and office visits, my symptoms remain unabated and the only thing I know is that I don’t know. In fact, they’ve gotten worse. For six weeks now, the left upper side of my chest/abdomen has throbbed with pain. I told my doctor that it feels like I have been hit in the ribs with an Aroldis Chapman fastball. For those who are not baseball fans, Chapman is a pitcher for the Cincinnati Reds. He throws the ball over 100 miles per hour.

This pain is not my lungs, and a set of back x-rays last week revealed arthritis, no shocker since I have osteoarthritis in many of my joints, but no fractures or compressed discs. Tomorrow, prior to going to the Dayton Dragons-Fort Wayne Tin Caps baseball game, I have an office visit with a colorectal doctor. The plan is for me to have a colonoscopy done as soon as possible. Sometimes,  colon cancer can cause the type of pain I am having. In the mean time, I try to deal with the pain the best I can, tasking extra medication and using moist heated pads. Since I can only sleep on my right side, this pain has turned my attempts at sleep into one long fight to find just the right spot to lie so the pain is less severe.

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

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

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

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

Learn the code.

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

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

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

 Listen.

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

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

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

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

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

 Never use throwaway lines.

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

 Check your own patience.

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

 Be sensitive when suggesting medicines or alternative treatments

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

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

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

 Be helpful.

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

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.

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