Southern Baptist Rick Warren, pastor of Saddleback Church, has come out…man I just had a hilarious thought…has come out of the closet…back to reality…has come out in opposition to California Senate Bill 128. If passed, the bill would give terminally ill Californians the right to terminate their own life. Warren, whose son committed suicide in 2013, thinks that none of us should have the right to determine when we die. According to the Purpose Driven pastor:
“I oppose this law as a theologian and as the father of a son who took his life after struggling with mental illness for 27 years.”
“The prospect of dying can be frightening,but we belong to God, and death and life are in God’s hands…We need to make a radical commitment to be there for those who are dying in our lives.”
SB 128 would allow patients who are mentally competent and have fewer than six months to live, as determined by two physicians, to obtain prescriptions for medication to end their lives in a humane and peaceful manner, while protecting the vulnerable with strict guidelines and procedures.
Warren’s comments illustrate, once again, why there must be a strict separation of church and state. While Warren might find some vicarious purpose and meaning in suffering, many Americans do not. In Warren’s world, the Christian God is sovereign over all, including life and death. Warren tries to frame his objection as “wanting to be there for those who are dying,” but I suspect there are many Californians who have no need of Pastor Warren or any other pastor or priest “being there” for them during the last days of their life.
While the government certainly has an interest in protecting those who are vulnerable, mentally ill, or unable to make a rational decision, I see no compelling reason for government to forbid the terminally ill to end their life through drugs provided by their physician. Warren is free to suffer until the bitter end. He is free to let cancer eat away at his organs or allow ALS to turn him into a vegetable. If that’s what his God demands of him, far be it from me to deny him the right. However, millions of Californians do not worship Warren’s God, nor do the have such a noble view of suffering, death, and pain.
Chronic illness and pain are my “dark passengers”, to quote Dexter, the serial killer. I fully expect that I will continue, health-wise, to decline. I see no cure on the horizon and I highly doubt God is going to send Benny Hinn to fake heal me. There could come a day when I no longer desire to live in what Christians call this “house of clay.” I am sound of mind, OK, mostly sound of mind. Since God is not my co-pilot and I have no desire to be the poster child for suffering, shouldn’t I be allowed to determine, on my own terms, how and when I end my life?
Perhaps I will never reach the place where the reasons for living are no longer enough to keep me alive. There are days when the pain is unbearable and I ponder what death will be like. THE END. Lights out. I have the means of death at my disposal. I take medications that would surely do the trick, but maybe not. Perhaps they wouldn’t quite send me and Toto to the other side. Then Polly would be left with a brain-dead vegetable of a husband. Wouldn’t it better for a doctor to prescribe drugs that were sure to do the trick? If we can execute murderers surely we can help the terminally ill die when they want to call it a night. Wouldn’t this be the compassionate thing to do?
Many people are opposed to assisted suicide for religious or philosophical reasons. By all means, suffer to your heart’s content. But, you have no right to demand that others play by the rules of your religion or philosophy. I hope the California legislature will not allow Evangelicals and Catholics to pressure them into not giving the terminally ill a death with dignity option. The dying, if possible, should have the right to determine when and where the show ends. (please Dying with Dignity.)
A week and a half ago, Polly and I took a road trip south, ending up in Delphos, Ohio. In a post titled Luck, Fate, or Providence, I mentioned an event that took place while I was taking some photographs of an old canal:
…Polly and I took a road trip to Ottoville, Fort Jennings, and Delphos. Like most of our trips, I took my camera equipment with me. As we were wandering around Delphos, we stumbled upon a lock from the era of the Miami and Erie canal. Getting down to the lock was a bit treacherous for me. I wanted to get as close as possible, so I gingerly walked down the concrete abutment to the lock. I didn’t fall, slip, or trip. Lucky me, I thought.
After ten minutes or so, I was ready to return to the car. I had two paths I could take. I could retrace my steps or make a big step and little jump to ground level, Polly said she would give me a hand, so I chose the latter. Polly reached down, took my hand, and began to help me up. And then, our world went crazy. Polly couldn’t pull me up completely and I violently fell forward, knocking both of us to the ground. If my weight had been balanced slightly the other way, I would have no doubt went careening down the concrete abutment into the canal. The fall would have likely killed me.
The good news? My cameras escaped damage, though one of them does have a slight scrape. The hood on the lens kept it from being smashed. Polly ended up with bruised knees and I ended up with a twisted ankle and hip and a nasty, bloody contusion on my left leg. It is still oozing slightly today.
I know I was lucky. I should have retraced my steps. This was the safe and prudent choice. However, Polly was standing right there and she said she would help. Why not, right? She helps me out of the recliner and car all the time. What neither of us counted on was how difficult it is to pull up a 350# man. When Polly pulls me out of the car or the recliner I help her. This time? I was dead weight and I almost literally became so…
Yesterday, I had Polly take me to Urgent Care in Bryan. My left leg is swollen, an inch bigger circumference wise than my right leg. The contusion is weeping fluid and has become infected. I am white, the wound is red and yellow, and I am trying to keep it from turning black. (shout out to the Evangelical song, Jesus loves the Little Children, red and yellow, black and white, they are precious in his sight) I am taking an antibiotic. The doctor swabbed the wound and sent it to the lab. The lab will do a culture to determine what is causing the infection. If warranted, the doctor said he will change the antibiotic, but he thinks the one he prescribed should do the trick. This is the same leg, BTW, that I had a foot problem with last fall.
Last Sunday, Polly drove us to Cincinnati, Ohio to attend the Cincinnati Reds-St. Louis Cardinals baseball game. We had a great time. There’s nothing like experiencing a live baseball game. When the stands are full, as they were on Sunday, the stadium comes to life. The cheers and the groans ripple loudly through the crowd, as Reds fans live and die with their team. In many ways, I find the live baseball experience to be a lot like a revival service. There’s that “feeling” in the air that resonates deeply with me.
That said, we have come to the conclusion that I can no longer take trips hours away from home. Driving to Cincinnati and back meant we were on the road for almost 8 hours. Whether we took the interstate or a state highway, the roads, thanks to a hard cold winter and a lack of infrastructure upkeep, pummeled my body. Mile after mile the roads bumped and banged my body, so much so that even double doses of pain medication couldn’t stop the pain.
As much as I want to cheer the Reds on in person, I know I can no longer do so. My body has issued its decree, cross this line and I will make you pay. As I have said many times before, a time would come that I was no longer willing to pay the price of admission, no longer willing to suffer the brutality of long trips. That time is now. I hate that it has come to this, but it is what it is.
Now this doesn’t mean that I can take shorter trips to places like Toledo, Fort Wayne, Magee Marsh, or Marblehead. An hour or two from home, along back roads at a slow speed, I can still do. There’s a minor league baseball team in Fort Wayne and Toledo, so I can still enjoy the live game experience. There’s plenty for us to see and do within a few hours of our home. There’s plenty of sites and out-of-the-way places to photograph. Instead of lamenting what I can’t do, I choose to focus on what I can do. This is me adapting to my environment. Shout out, Charles Darwin.
My chauffeur driving our 2015 Ford Escape. What’s real interesting is the gravel pit in the background. I sure wanted to climb down there and take some photographs.
We recently bought a new car, a 2015 Ford Escape. We made this purchase because I was having difficulty getting in and out of our 2013 Ford Fusion. The Escape sits up higher and has greater head and leg room, allowing me to sit comfortably, even when I have to twist my body to lessen the pain. We are quite pleased with the car. Actually it is an SUV, but we call it car. Health problems have robbed me of my ability to drive any distance but a short one. This is another thing I’ve had to adapt to. For decades, I did most of the driving and now I must rely on Polly to chauffeur me wherever I want to do. Again, it is what it is.
The nasty injury detailed at the start of this post has proved to be a wake up call for Polly and I. I no longer can afford to push the envelope, risking injury. Since I am diabetic, any type of wound is a concern. I pastored several people who lost their legs due to a cut or wound that morphed into an abscess drugs and doctors could not cure. Despite all our miracle-working drugs, there are viruses and bacteria that can and do kill us. I must take better care of myself, not putting myself in circumstances that could cause physical injury. When I walk with a cane, I tend to ignore my limitations. When using a wheelchair, it is obvious that I can no longer pretend to be Superman. While I refuse to give up, I must face reality and adjust my life accordingly.
The good news is that Polly will still be by my side. We’re in this together until death do us part. Her love and care make the pain and suffering bearable.
Several people have asked about my doctor’s appointment today. Although I do have gallstones, the surgeon does not think I should have my gallbladder removed. He said that I do not have classic gallbladder symptoms. Normally, the pain would be on the right side and vary depending on what I ate. My pain is sharp, constant, in the upper left quadrant. I can not sleep on my left side, back, or stomach. Right now, I am getting 3-4 hours of sleep a night.
So, watch and wait. Blood work tomorrow to make sure I don’t have pancreatitis. Could be pleurisy, but I have had it before and it always is made worse by inhaling. This pain is constant, deep. Could be inflammation, so I am also having my SED rate rechecked to see if it has gone up. As you might remember, under 20 in the norm. Last year, my SED rate climbed to 35 and then in December it jumped from 35 to 67. This is a sign of increasing inflammation, but where?
Doctor thinks I should have CT scan or MRI repeated again if pain doesn’t go away.
Only negative was having to listen to the doctor (surgeon) lecture me about my weight. I have never seen him before. He acted like he knew everything about me. He is a big believer in calories in/calories out determining a person’s weight. His ignorance reflects his age, 63. I said nothing and let him preach his sermon. He knew I had Fibromyalgia, osteoarthritis, and neurological problems, but, in his mind, I just needed to eat less. Never mind, he didn’t ask what I did eat. Had he done so, he would have found out that 90% of the time I don’t overeat. He thought my weight loss was wonderful. Never mind it is because I have no appetite. He could see my pants were falling off of me…but hey…no Big Mac and all will be well.
I am frustrated, tired, sick, angry, pissed off, depressed, and suicidal. I have those moments where I say to myself, no more. Maybe Polly would be better off collecting the insurance and finding herself a man that isn’t a physical wreck. She deserves better.
Since November 2014, I’ve had a CT scan, MRI, ultrasound, endoscopic ultrasound, biopsies of pancreas and lymph nodes, numerous blood tests, and five office visits. Cost? My insurance paid out $25,000 of which I (we) owed over $6,000. Just today, after my latest appointment, we stopped at 1st Source in Fort Wayne, to sign papers for a $5,000 personal loan. Parkview Hospital refused to help us with the bill and demanded we pay the bill off in no more than 12 payments. To avoid them ruining our credit, we took out a personal loan.
All this money and I am not one step closer to knowing what is wrong with me. Last week, the gastroenterologist called and said he wanted the endoscopic ultrasound redone in 6-9 months. Why? I thought my biopsies were benign?
I am not writing this to solicit medical advice, money, or sympathy. This is not a cry for help. No intervention is needed or desired. This is me grabbing the hair on my hairless head and screaming ____________________. (fill blank in with appropriate swear word)
What I have detailed above has been my life since 2007. I’ve had Fibromyaglia since 1997, but, in 2007, I started having neurological problems. Numbness in my thighs, face, and feet. Burning, searing pain if I walk for every long. I’ve lost motor function and muscle strength. I can no longer drive the car and must use a cane or wheelchair to get around. The doctors initially thought I had MS, but after $20,000 worth of brain scans and tests, the doctors said “inconclusive for MS.”
Since 2007, I have also had basal cell skin cancer removed from my nose, a cyst removed from my leg, and carpal tunnel surgery. Last weekend, I had a nasty fall and almost fell down a concrete abutment into a canal filled with water. Instead of falling backwards, I fell forward, spraining my ankle and causing a huge, bloody contusion on my leg. Polly was trying to help me up the abutment when all of a sudden she lost her grip and I fell. She ended up with bruised knees. But hey, I got some great photographs.
Why are you writing this, Bruce? Beats me. Feels good. Time to play some Rage Against the Machine.
Yes, I feel like dying. Yes, I feel like throwing in towel. Yes, I feel like taking a Doctor House dosage of drugs and calling it a day never to wake up again. But, I can’t. The Reds are 3-0 and in first place. Maybe this is the year. Polly and I have tickets for Sunday’s Reds vs. Cardinals game. I can’t feel any worse than I do now…well I don’t think I can anyway, so I am going to keeping doing what I can do. As long as the sun is shining, there is gas in the car, and money in the checkbook, I plan on getting out of the house, camera in hand.
Four bottles of inexpensive wine we purchased at St. Julian Winery in Paw Paw. Michigan
She took the day off.
The weatherman says sunny and 55, I hope he’s right.
I busy myself getting ready for tomorrow.
Clean the house, I tell myself. Can’t leave if the house isn’t clean.
House is clean.
I put my camera equipment on the table, tripods behind the door, ready for loading in the morning.
I check the camera batteries and make sure the flash cards are installed.
No need for the GPS, we have iPhones now, so Google maps will direct us to our destination. Just to safe, I put some paper, a pen, a flashlight, and maps of Indiana, Michigan, and Ohio in my briefcase and put it with the camera equipment.
Clothes, shoes, wallet, jacket, and hat, all ready for the morning.
She will be home soon.
She sees that I cleaned the house. She smiles and shakes her head. She knows…36 years of knowing…
I want to be out of the house by 10, I tell her. And I mean 10, I add, knowing that I am fighting a battle I have lost more times than I can count.
A restless night, I get 4 hours sleep before she wakes me up.
The car is loaded, ready to go. Ten minutes late…
She drives. I want to drive but I know I can’t. I am no longer physically able to drive. I know this, but I still want to drive. She ignores me, knowing I will no longer put up a fight.
Off to Fort Wayne first to drop off papers at the hospital. I owe them $5,000.00. I hope they will reduce the amount I owe.
She wants to go Rome City to see an old, no longer functioning self-sustaining nunnery.
It’s not long before I start feeling every bump and thump as we ride over roads savaged by harsh Midwestern winter.
Our destination is South Haven, Michigan. Sunset is at 7:45. I want to get there by 6:00. How we get to South Haven is undetermined.
This is a Gerencser road trip, one our six children experienced many times. A general destination with no certain route.
The assault on my body continues. I complain some, but I know it is not her fault. If I had known this is how painful the trip was going to be, I would have stayed home. I am glad I didn’t.
North and West we travel, meandering down never before traveled roads.
I set Google maps to no highways or toll roads. We want to see what most people never take the time to see.
Amish, horses, buggies, laundry gently blowing in the wind. What a pleasant surprise.
Where’s their school, she asks. Soon, we stumble upon it. Look at all the bicycles and yellow vests.
Countless stops so I can get out of the car and take photographs. It’s not long before my shoes are muddy, muddying up the floor and mat cleaned the night before.
Sometimes, I stay in the car, using the window to steady my telephoto camera lens. We fuss a bit as she tries to maneuver the car so I can take a shot. We’ve been fussing for 36 years. It means nothing, our love transcends anything we could say to one another.
We finally come to a road we’ve traveled before. Soon we come to Paw Paw, Michigan. Let’s stop at the winery, she says, and I say, sure.
So much wine, so little money. I sure could use a drink. We buy four bottles of inexpensive wine. As we checkout, I tell the young woman waiting on us that we were once part of a religion that forbade the drinking of alcohol. She replies, really? Her face tells me she’s never heard of such craziness. I go on to tell her that we were 50 years old before we drank wine for the first time. I chuckle and say, we are living the 60’s and 70’s a little late in life.
She needs to use the bathroom, so does our daughter with Down Syndrome. I’ll tell her I’ll take the wine out to the car, She says, OK, and hands me the keys.
I open the trunk of the car, put the wine in, and carefully wrap the bottles with a towel.
I slam the trunk of the car and reach into my pocket for the keys so I can unlock the car.
Panic. You didn’t. You fucking idiot. Surely, you didn’t lock the keys in the trunk? You damn idiot, yes you did.
Soon she comes out to the car and I tell her what I’ve done. I thought I had ruined our day. She calmly reaches into her purse and pulls out the second set of keys. Disaster averted.
I am mad at myself, still upset over the keys. 57 years, and I’ve never locked the keys in a car until today. My self-esteem takes another dive.
Back on the road, time to head to South Haven.
The roads continue to pummel me. She notices that I am writhing in the seat and says,I’m sorry. I say, it’s OK. It’s not, but only death will keep me from reaching our destination.
5:00 Pain meds. She notices I have taken the maximum dosage for the day, but she says nothing. She knows I will have to take extra pain meds to get through the day.
It’s 5:30 as we pull into the parking lot near the beach. She and I have been here many times. It’s our favorite place to be. There’s nothing better than watching a Lake Michigan sunset, especially when the one you love are by your side.
The sun is shining, it’s 54 degrees.
The Lake is frozen, the beach is covered with a mishmash of ice, melting snow, and sand.
People are out and about. One young woman is in flip-flops and a white sun dress. Silly humans, we are, worshiping the warmth of our star.
We make our way out to the lighthouse. I walking slowly, prodding the ground with my cane, making sure the slushy snow beneath my feet is firm.
We finally reach the point, the first time we’ve been here when the Lake is frozen.
People come and go as we stand there enjoying the warmth and the view. What a wonderful view…
A talkative woman stands nearby. Her back is to the sun and Lake. She seems only interested in talking to those who are near her. She’s lecturing a young couple about an upcoming sales tax initiative. She’s against it. She turns to me and asks, do you read? Yes. What do you read? Books. Philosophy? Yes. I’m thinking, really, here I am 3 hours from home, away from my blog, and I am getting quizzed about philosophy? The talkative woman asks, Who? I snap back, Kierkegaard. This satisfies her and she turns to the woman in the white sun dress and tells her she’s crazy for being out there in flip-flops and no coat. I thought, I’ll tell you who’s crazy.
We walk back to the car and drive to the bluff overlooking the Lake. I’ve never taken photographs from this spot before.
I set up my tripod and prepare both my cameras to take photographs of the sunset. The show will be short and sweet, I know I must be ready.
She gets out the portable camera I bought her for Christmas. She is quite proud of her work. I hear her camera beep, knowing she is photographing me going about my craft. I used to object, but I know my children and grandchildren will one day appreciate her photographs. I’m reminded of what my friend Tom told me, photographs are about the memory, the moment. That’s what matters.
Soon the show is over and we quickly load everything back into the car. The temperature is quickly dropping. By the time we get home it drops 20 degrees.
As we make our way down from the bluff, I ask her to stop at the beach. Just a few more shots, I say. She’s cold, so she stays in the car as I setup my tripod and take a few photographs of the lighthouse, now lighted by incandescent lights along the walkway.
It’s 8:15 as we walk into Clementines. All the adrenaline has dissipated and my body now screams for attention. I can barely eat. I use the bathroom before we leave, leaning against the stall, a few tears come to my eyes. Why does it have to be this way? Why does one day with my friend and lover cost me so much?
More pain meds.
I have a counseling appointment scheduled for tomorrow. She knows, and will cancel it in the morning. Bed is what awaits me come tomorrow and several days after that. It’s the price I pay for living, for experiencing the beauty of my wife and a Lake Michigan sunset.
It’s midnight as we pull into the driveway. We’ve been gone 14 hours and driven over 300 miles. Exhausted, she falls asleep in minutes. I take more pain medication and my normal nighttime meds. I’m so exhausted that sleep comes quickly.
12 hours later, I wake up, knowing that I must now pay for yesterday.
Is it worth it?
She’s at work now and she sends me a text. The sun is shining, want to go to on a road trip?
I have suffered with depression most of my adult life, especially since being diagnosed with Fibromyalgia in 1997.
Over the past two decades, not only have I had to contend with Fibromyalgia, I’ve had to deal with neurological problems that are ever so-slowly-robbing me of my physical strength and ability to walk. My cane and wheelchair are never far away. Some days, most days, are cane days, other days are wheelchair days. Some days are cane and wheelchair days, days when I want to use my cane to club the thoughtless people who walk in front me, try to get in front of me, or just stand there ignoring the fact that I can’t get around them. If illness and debility have taught me anything, they have taught me that some of my fellow humans are narcissistic, self-absorbed assholes who have no time or empathy for others.
Every day is a pain day for me. Some days the pain is manageable and it fades into the background as I write. Other days, the pain is standing with both feet on my neck, threatening to turn me into a weeping, pathetic man. Most days are a balance between these extremes. I take my pain meds, try to function, and live for another day.
Along with Fibromyalgia, neurological problems, loss of function, and pain, I’ve had to deal with skin cancer, cysts, a recent pancreatic cancer scare, loss of appetite, on-and-off loss of cognitive function, a not-yet-repaired labrum tear in my shoulder, torn menisci in both of my knees, osteoarthritis, diabetes, and high blood pressure.
Healthwise, my plate is full. That said, I accept my life as it is. I am a realist. I don’t try to delude myself into thinking I am a young buck running through the forest in chase of a doe. I am a loving, kind, passionate man who, due to genetics, luck, environmental exposure, and personal lifestyle choices, has a body that is dying at a faster rate than others my age. I am a high mileage automobile that from a distance looks good, but close inspection reveals a lot of wear and tear.
All of this I embrace and own. It’s my life, I have to live it on the terms dictated to me by my body. Thinking happy thoughts, putting mind over matter, pretending things are different from what they are provide no help for me. Even when I was a young man, a healthy, strapping, strong man who hunted, hiked, cut wood, and could bend the world to my will, I tried to see things as they are.
Having a father die at 49 and a mother commit suicide at 54 tends to give one a particular perspective. Visiting sick and dying church members in the hospital tends to remind one that life is short. My experiences with the sick and dead have certainly shaped my understanding of life and I know path I am on, healthwise, leads to a fiery furnace. No not hell, silly. I am going to be cremated after I die.
My counselor has told me several times that it would be unusual for a person with the health problems I have to not be depressed. He knows I struggle with suicidal thoughts, but he also knows that these thoughts are driven by the chronic, unrelenting physical pain, Through kindness, compassion, friendship, and support, he keeps me from falling down the rabbit hole, never to be seen again.
As many depressives will tell you, it is often little things that worsen their depression. For me, it’s not the chronic illness and unrelenting pain…it’s the little, unexpected things that push me towards the abyss. Things like:
Falling and wrenching the shoulder that has the labrum tear
Getting out of the house so I can take photographs, only to find out I left the SD card in the card reader
Emails and texts to friends who never respond
Health advice from people I have repeatedly asked to stop pretending they are doctors
People asking me, have you tried this, that, this, that, this, that, this, that, this, that, this, that…
Dropping a dish on my foot
Stubbing my toe in the dark on something that is not where it is supposed to be
Nothing in the refrigerator I want to eat
The printer running out of ink or toner
Needing a quarter for a cart at Aldi and not having one
The batteries in the remote dying just as I get comfortable in my chair or bed
Making an error in the checkbook
Store clerks who treat me as if I have a disease or worse yet, treat me as if I don’t exist
Finding out last night’s dinner stained my favorite shirt
The DVR not recording a show I wanted to watch
No milk and I want to eat a bowl of cereal
Silly stuff, I know. But, here’s what you need to understand: for those who live with chronic illness and pain, there’s a cumulative effect. Their lives are already filled to the brim with the struggles that come from their illness. It’s often all they can do just to live another day. So, when a small insignificant thing is thrown on top of their load, it can and does bring them crashing down.
Try to remember this the next time you think your suffering friend is overreacting to a small matter: it’s not that one thing that is the problem; it’s the accumulation of numerous small things that have left your friend or loved one curled up on the bed wanting to die.
Joni Eareckson Tada was severely injured in a diving accident in 1967. For the past forty-eight years she has been a quadriplegic. Tada’s life story was popularized in a best-selling book titled Joni.
In the Friday, June 25, 2010 edition of the Defiance Crescent-News, there was a story about Tada undergoing treatment for breast cancer (behind pay wall).
As I read the article, what astounded me was Tada’s comment about God’s involvement in her breast cancer.
I’ve often said that our afflictions come from the hand of our all-wise and sovereign God, who loves us and wants what’s best for us. So, although cancer is something new, I am content to receive from God, what ever he deems fit for me. Yes, it’s alarming, but rest assured Ken and I are utterly convinced that God is going to use this to stretch our faith, brighten our hope and strengthen of our witness to others.
In other words, God gave Tada breast cancer because he loved her and deemed it best for her. God gave her cancer so that she and her husband would have more faith and be a stronger witness to others.
Tada’s God is best described as a know-it-all deity who afflicts humans with sickness, disease, suffering, and death because he loves them and wants to increase their faith in him. He then wants them to use the afflictions he gave them to tell others what a wonderful God he is.
Crazy, isn’t it? I doubt if Sigmund Freud could even figure this out.
The Christian interpretation of the Bible presents God as a father and the Christian as a child. Good fathers love, protect, and nurture their children. They don’t beat them, abuse them, or afflict them with suffering. Every right-minded human being knows what qualities make for a good father. We also know what qualities make for a bad father.
A father who has the power to heal and doesn’t is a bad father. A father who causes suffering, sickness, and disease when he could do otherwise is a bad father. A father who afflicts his child with breast cancer is a bad father. A father who gives his child breast cancer so she can tell everyone what a wonderful father he is, is a bad father. From my seat in the pew, this God-the-father, as presented by modern Christianity, is a bad father.
Tada’s argument for a breast cancer-giving God is one of the reasons I left Christianity. I could no longer believe in a loving God that willingly afflicts and kills his children because he has determined that it is best for them. This God demands the Christian bear whatever affliction he brings upon them, and in true narcissistic fashion also demands that they love him while he is afflicting them. I want nothing to do with such a capricious, vindictive, warped God.
Disease, sickness, suffering, and death are all around us. If God could do something about these things and doesn’t, what are we to make of such a God? What are we to make of a God who is seemingly involved in the intimate details of life, yet when things really matter is absent without leave (AWOL)?
Christians sing a song that says “what a mighty God we serve.” A mighty God? In what way is the Christian God mighty? Batman and Superman were mighty gods. They used their powers for good. They were always on call, ready at a moment’s notice, to swoop in and help those in need. But the Christian God ? It seems the bigger the need the harder he is to find. As I noted in another post, God seems to involve himself in trivial matters like getting a woman a $200 refund on her plane ticket, but he seemingly can’t be found when an environmentally catastrophic oil leak needs plugging. Perhaps we need to forget about this God and turn on the Bat signal.
I am saddened by Joni Eareckson Tada’s affliction with breast cancer. Being a quadriplegic for over fifty years is enough suffering for one lifetime. But I know just because you have one health problem in life doesn’t mean you won’t be afflicted again. As I have learned in my own life, just because I have Fibromyalgia doesn’t mean I won’t get some other disease. Life isn’t fair. Life can be cruel. I’ve known Christians whose lives were devastated by one tragedy or sickness after another. If God is the one dumping all this on them, it would seem proper to ask God to move on to someone else. “Please God afflict sister so-and-so. She is in perfect health.”
Christians often quote the verse that says God will never give anyone more than they can bear. In other words, no matter what you face in life, God has determined you can bear it. This verse always leaves God off the hook. God, who is sovereign over all things, determines that you can bear to have cancer, AIDS, Fibromyalgia, ALS, MS, emphysema, or any other dreaded disease, so he afflicts you. You are expected to bear whatever he brings your way. If you don’t, it is your fault. Your failure to bear your burden shows that you lack faith.
Reality paints us a different picture. Many Christians, if not most, do not bear their burdens as the Bible says they should. I have counseled hundreds of Christians over the years who were weighed down by the burdens given to them by God (so they thought). At the time, I encouraged them to have more faith, but rarely did the faith of the afflicted rise to the weight of the burden. Most often, the burden broke their back. Sadly, many of these people continue to walk around, stooped over and crippled, all the while singing “what a mighty God we serve.”
There is a hypocritical vein in this line of thinking. The theory is this: God afflicts his children with suffering for their good because he loves them and wants to increase their faith. I would ask then, why do Christians go to the doctor and take prescription medications? It seems to me that not seeing the doctor and not taking medication would result in a greater increase in faith. Surely a sovereign, omnipotent God is bigger than high blood pressure or diabetes and surely a sovereign, omnipotent God is bigger than any pain a Christian might have, right?
There are Christian sects that do have this kind of faith. They don’t go to doctors and they refuse to take medication of any kind. And every few years we have the privilege of reading about them in the newspaper when they are charged with manslaughter or child abuse for failing to get proper medical care for one of their children.
For me personally, it is more palatable for there to be no God, or a God that is not involved in his creation, than there is a God that afflicts people because he loves them and wants to increase their faith. Such a God is a monster of vast proportions, a God unworthy of worship.
I recognize that sickness, suffering, and disease can be instrumental in shaping us and changing us and making us better people. But this is far different from a loving God-the-father afflicting us so that we will love him, have more faith, and be better witnesses. Such thinking is barbaric and best relegated to the ancient past it came from.
Many Fibromyalgia sufferers have days where they can’t bear to have someone touch them. Yesterday was one of those days for me. Polly came into the office and started to put her hand on my shoulder and I barked, DON’T! Polly knows when I say this that I am having a “please don’t touch me” day.
Most days, the nerves in my skin are quite sensitive. This sensitivity is part of the problem I have with chronic pain. I hurt everywhere, from head to toe. It has been years since I have had a day where I could say, I feel pretty good today. Fibromyalgia primarily affects the muscles. I also have osteoarthritis. Fibromyalgia+osteoarthritis+nerve pain=unrelenting chronic pain. Fibromyalgia+osteoarthritis+nerve pain+narcotic pain medication=less unrelenting chronic pain.
As anyone who lives with chronic pain can tell you, pain medications do not make the pain go away. They lessen the pain spikes and provide a break in the pain cycle. When normally healthy people take narcotics to alleviate pain, they often feel a buzz from the drug. Some people become quite loopy. That’s not how it is for people who are on a long-term pain management regimen (as I have been for over ten years). Unless the chronic pain sufferer takes narcotics like Dr. House, it is unlikely that they will feel a buzz or become loopy. They will feel a lessening of the pain, a break in the pain cycle, but otherwise they will be as normal as normal is for them.
On “please, don’t touch me” days, the pain medications don’t work like they normally do. I am unsure as to the physical reason for this, but I know that I can double my pain medications on a “don’t touch me” day and it has little effect. I just have to tough it out, knowing that the next day will likely be better.
Sometimes, I can feel a “don’t touch me” day coming on, as I did this time. Saturday evening, I went to a Defiance High School basketball game with my oldest son and grandson. Polly dropped me off at the school around 5:30 PM so I could watch the junior varsity game. Jason usually shows up about 30 minutes before the start of the varsity game. On Saturday, I wasn’t seated for very long before I felt the nerves in my body go into overdrive. They were singing and I was crying the blues. I texted Jason and asked him to buy me something to drink as soon as he got there. I told him my pain levels were off the chart. He arrived early and I was able to take some extra pain medication.
Not that it helped much. Sitting in back of me was a mother with several young children. These children spent the night kicking and bumping into me. They weren’t doing it on purpose, so I bit down on the proverbial stick and endured. In the stands above us were several herds of elementary school children. They were there to provide the halftime entertainment. As they rumbled down the bleachers to the floor, I literally felt every footstep. Again, it’s wasn’t their fault. I am the one with the pain problem, and I am the one that put myself in a circumstance where my pain could be exacerbated.
Why I am telling you this? Perhaps you know someone who lives with chronic pain. If so, perhaps this post will give you a little insight into what they might be going through. Perhaps you have seen them grimace when someone touches or bumps into them. They might be having a “please, don’t touch me” day. If they are anything like me, they will endure the pain for the sake of not appearing crabby or difficult. Chronic pain sufferers want to be seen as normal, and often they will silently endure the pain unintentionally inflicted on them by others.
People who know me well will generally ask how I am doing before hugging me or shaking my hand. Some of them even know how to read my face. As much as I try to hide the pain, it reveals itself in my face and eyes. I normally have sparkling blue eyes, but when I am in a lot of pain, depressed, or physically having a difficult day, my eyes will turn gray. I don’t know WHY my eye color changes, I just know it does.
Bruce 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.
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.
1971-1972 was an eventful period for me. I was saved at an Al Lacy revival meeting, baptized, and called to preach. My parents divorced and remarried. I missed almost a month of school due to coming down with mumps and chicken pox. What a year, right?
I also saw a doctor for unexplained pains in my joints, especially my toes and elbows. The pain was so bad I couldn’t throw a baseball and THAT was a big deal to me at the time. The doctor said I was having “growing pains”. I did grow a lot in 9th and 10th grade, over 7 inches, so growing pains, at the times, made sense. I now know that the doctor didn’t know what was wrong with me and gave me a meaningless diagnosis.
If that wasn’t enough, some of the neighbor boys and I decided to go swimming in one of the nearby ponds along I-75. The pond was dug out when they needed dirt for overpass construction. I had fished this pond many times, and in the winter the neighbor boys would skate on the pond and play hockey.
A day or so after swimming in the pond, we all came down with mysterious blisters on our skin. My parents took me to the ER and one of the boys had to hospitalized. Doctors theorized that we are “exposed” to something in the water. We later found chemical barrels that had been dumped in the pond. I have often wondered what I was exposed to on that warm summer day in 1971?
And, I must not forget, 1971 was the year I was stung by a bee and had to be rushed to the ER because my air way was swelling shut and my eyes were swollen shut. Evidently, I was allergic to bees. (I am still allergic but less so since I had allergy shots years ago)
When I was 18, I started having swelling in my big toes. The Arizona doctor said I had gout. Other doctors, years later, said I didn’t have gout. At the time of my original diagnosis I had high uric acid levels, the telltale sign for gout. Years later, my uric acid levels were normal. So, did I really have gout? I don’t know.
As I got older, doctors treated me for chronic bronchitis and arthritis. One doctor told me the arthritis was the price I paid for playing contact sports. Years later, a different doctor told me the first doctor was full of crap. Yes, I now had arthritis in my shoulders, back, feet, and hands, but there was no way to KNOW if it was caused by contact sports. Dueling doctors, the bane of the chronically ill who are looking for answers.
In 1989, I came down with pneumonia. The doctor wanted to hospitalize me, but we didn’t have insurance so he agreed to treat me at home as long as I came to see him every few days. Years later, I had another bout of pneumonia, along with several bouts of pleurisy.
In 1991, I began to feel tired. The doctor thought I had a virus of some sort. This went on for weeks and weeks until the doctor decided to do some tests. He found out I had mononucleosis. I was 34 years old and mono can cause serious problems for adults. It did for me.
The doctor put me on a herpes drug. Mononucleosis is caused by the Epstein-Barr virus, and since herpes is caused by the same virus the doctor though the drug might help. It didn’t and a week later Polly rushed me to the ER in Zanesville, Ohio where they immediately admitted me. I had a high fever and my spleen and liver were swollen. There was so much infection in my system that my tonsils and adenoids were white.
An internist came in to see me and told me that my immune system was crashing and that if it didn’t pick up there was nothing they could do for me. This was the moment, THAT moment, when I realized, for the first time, that I was mortal. Prior to this moment, dying never crossed my mind. I had a family and church to take care of and I had thought of and no time for dying.
After my release from the hospital, I spent about a month in bed. I lost over 50 pounds. From this point forward, I became more susceptible to viruses. It seemed then and still does today that I catch any and every bug that is floating around.
Pain Always Looks Good on Other People
The strangest thing to come out of the mono episode was my normal body temperature changed. My new normal is 97 degrees. This poses a problem any time I get a new nurse and have a fever. She will take my temperature and say, it’s up a little, 99.8 degrees. I will then mention that my normal body temperature is 97 degrees, so 99.8 degrees for me is like 101.4 degrees for a normal person. Sadly, most nurses ignore me.
In 1996, I began to feel tired all the time. I mean really, really tired. And my muscles hurt. I went to one doctor who basically told me it was all in my head. I went to another doctor, the doctor who is still my primary care doctor, and over the next year he concluded I had Fibromyalgia. Since 1997, my primary diagnosis has been Fibromyalgia.
For about 10 years, my symptoms would come and go, always there but not always prominent. Being a work-a-holic with a Type A personality, having Fibromyalgia certainly cramped my ability to burn the candle at both ends, but I learned to manage my symptoms. Well, not really. I would work, work, work and then crash. I continue to repeat this cycle today. I have never been very good at taking it easy or resting. Of course, now it is different for me because I can no longer put mind over matter. My body has the upper hand and it controls many aspects of my life. I manage, but I no longer have the ability to ignore what my body is telling me.
In 2007, I began having neurological problems that my doctor doubted were Fibromyalgia related. I now had numbness in my face and thighs and I was losing muscle strength. A 15 minute walk in a store proved to be (and still does) a very painful and debilitating experience. By the time I am done walking, my thighs are numb, yet they are burning. The numbness and burning subside once I sit down in the car.
My primary care doctor sent me to Toledo to have a complete battery of tests, including a lumbar puncture. He wondered if I had multiple sclerosis. The tests came back inconclusive, and two brain scans later I am no closer to knowing what is causing the neurological problems. Some day my tombstone will read, Died of Hell if I Know Disease.
Today, the pain and debility continue to render me a shell of the man I once was. While I am grateful for still having most of my mental faculties (outside of the short-term memory problems I have, I do miss Bruce Almighty, the man with a strong body and a strong grip, able to do whatever he put his mind to. Those days are long gone and all the wishing in the world won’t bring them back. But, wishing is what old men do, especially those whose bodies are racked by the ravages of disease.
Age has added diabetes and high blood pressure to my plate. A slight bit of good news? My recent A1C level was 6.5. This means my diabetes is well controlled. Yea!
Recent months have brought new problems. I detailed those in a previous post. Tomorrow, I have an MRI and hopefully we will then know if it is something, maybe something, or nothing. After my recent CT scan, I spent significant time reading about pancreas and gallbladder problems. My doctor knows I will always educate myself. I want to be an informed patient.
I had an appointment with him a few hours ago. Refills, a new prescription for the horrible constipation I now have. I asked him what he thought about the CT scan results. He said he didn’t want to speculate and wanted to wait for the MRI results. Hopefully, he will receive the results sometime late tomorrow and call me.
I asked my doctor if the MRI could definitively determine if I had pancreatic cancer or a pancreatic cyst. He said, yes. I told him I had done a fair bit of reading on the subject. I laughed a bit and said, my diagnosis ranges from watch and wait to it sucks to be you. The doctor smiled. He knows my diagnosis is correct. If it is pancreatic cancer, it does suck to be me. He hopes it is not. If it is, then it is likely I will have to have a biopsy done. He also thinks I will need to have my gallbladder removed.
I am detailing my story to hopefully give readers some sort of context for understanding the health problems I have. For me personally, I wonder how I got to where I am today? Did my current health problems find their root in 1971-72 and it has taken all these years to bear fruit? Perhaps mononucleosis altered my immune system? Was I exposed to a cancer causing chemical in pond water 40 plus years ago?
I don’t think I will likely ever know. I do subscribe to the cumulative effect theory. Environmental exposure, eating habits, poverty, and genetics added together have brought me to where I am today. It’s not one thing, it’s everything, everything being life. We all have to die of something and my something has made itself known. (that is if I don’t trip over the cat in the middle of the night and break my neck)
Recently, someone asked me if I was worried about the possibility of having cancer? (I have already had cancer, skin cancer) They said, answering for me, how could you not be worried, right? Just asking this question reveals they don’t know me very well or haven’t been paying attention. Worry is not part of who I am. I am stoic about life, perhaps even a bit fatalistic. If I have cancer I can’t change that I have it. Worrying and fretting does me no good. In fact, it increases my pain levels. So, I try to channel my inner Buddha and relax. Life is what it is and all I can do is take what comes. Yes, if it is cancer, I will have decisions to make. If it is not cancer, I will still have decisions to make. Either way, I will educate myself and make informed decisions. Isn’t that all any of us can do?