One of the hardest things about having a life-threatening disease is determining when to tell family. As many of you know, I’ve been hiding Parkinson’s and my cancer for some time, having told roughly nine people. And when you do, the thought of what to say is on the forethought of the brain. “Hey, the weather is going to be great this weekend. Daily high temperatures will be 84 degrees. And, oh, by the way, I have cancer. So, wanna grab a cheeseburger? There’s a great palce down the road?”
Tag Archive: God
Question: When diagnosed with severe illness, do you fight like hell or walk away (from life)? When faced with the ultimate choice, there may be offers of comfortable, safe, warm places to stay. However, in the end, will you choose the solitude and movement of life or pour a host of chemicals through your body’s veins in hopes of living three, six, or nine months more? There will be a myriad of kindnesses and struggles, each bringing people together and, on occasion, sometimes challenging their commitment to the vision set for themselves.
To be more visionary, stringing the body to repeated rounds of chemotherapy offers non-joyful, conflicted rounds of clinical togetherness through an endless maze of medical tests. Moments such as these highlight that aging in America makes people invisible. Even in crowded waiting rooms, in the thunderous booms of clanging bedpans, like a salmon swimming upstream against the tide of infirmity, one wanders the solitary existence of medical marvel. Even in such moments, it’s hard for the ship to remain moored, but it’s never wholly undone.
The shooter who killed six at a Virginia Walmart left a “death note” addressed to God stating the events weren’t planned but felt like evil was leading him. Unfortunately, the ‘evil’ narrative is similar to many other historical accounts of many atrocities. After the shooting, President Joe Biden stated he would try and legislate against automatic weapons. (I concur, but good luck. However, that’s not my broader point.) Mass shootings account for less than 1% of the roughly 40,000 people killed by guns each year. While the number of people killed by guns is way too high, the presumption that ‘Evil’ or ‘Satan’ leads them is more likely a symptom of mental illness.
Medical professionals have identified a relationship between hearing loss and dementia. Let’s review some basic facts first. The impact of audiology and memory care will exacerbate with an aging population. By 2050, the number of people older than 60 years will double, comprising 21 percent of the global population. As a result, those living with dementia will triple and cost nearly $2 trillion.
Though the exact association between the two conditions has not been identified, recent studies have proposed several theories. First, there is a possibility that hearing loss and dementia share a common cause. Thus, hearing loss and cognitive decline occur in parallel. As the brain degrades, so does hearing. But statistically, that’s not proven true. A second theory proposes that hearing loss places an increased demand on cognitive resources. Thus, information degradation occurs as resources are removed from cognitive tasks to support hearing. In such a scenario, listening causes the brain to work harder, burning out. The last theory proposes that a person with hearing impairment withdraws from social engagement and, therefore, experiences less cognitive function to interact with their environment.
The theory gaining the most traction is the second: that hearing loss places an increased demand on cognitive resources. Individuals who have untreated hearing loss (even mild untreated hearing loss) find social participation requires more brainpower, which drains mental effort. This process makes the brain more likely to develop dementia.
So, why am I posting this information on a blog? Well, I am one of those impacted by hearing loss. Additionally, I am 62 years old. Combining those two statistics with watching my father suffer from hearing loss made me want to get and use hearing aids. Yet, the years-long search for the perfect hearing aid was frustrating.
In the film My Life, Bob Jones begins making videotapes of himself after receiving a terminal diagnosis. In the tapes, he outlines his life, beliefs, and life lessons. However, at one point, Jones whispers to his son, “Dying is a really hard way to learn about life.” The ending scene is touching: At the time of death, he is shown on a metaphysical roller coaster with his hands releasing the railing, raising his arms freely in the air. Metaphorically, he lets go of life and finally enjoys the ride. In a way, the film’s director provides viewers the opportunity to contemplate what in their life requires healing.
As I’ve done every week for the last eighteen months, I checked the most recent COVID-19 numbers. Compiling COVID statistics for 38 states and 140 counties requires significant effort. First, one has to ensure infection rates, hospitalizations, and deaths are accurately recorded. Next, you must interpret that data and decided what information must be presented to executive management. Management then reviews that information and determines how specific healthcare operations in each location will respond to projected trends. For example, Alaskan healthcare operations, where care is rationed, require a different response than California, where COVID is declining.
However, times are different than a year ago. After a year and a half, your team gains credibility. There is a well-developed cadence to performing these calculations and presenting useful, intelligible information. Then again, eighteen months ago was a different era, when people clamored for information and longed for some respite at home (or working from home). Throw in some false pandemic information, fake medication news, fake vaccine news, fake ‘stolen election’ allegations, and an attempted January 6th insurrection have pushed people to a breaking point.
I bent over and couldn’t get up. As I said to the doctor, it’s as if my brain was sending signals, by nothing below my waist responded. These past several days, nothing seemed to work right. Back at home, I couldn’t get comfortable. Nothing soothed the pain, standing, sitting, or walking.
It appears I will suffer.
“Then, I shall suffer with you.”
Eventually, I will be unable to move.
“Then, I will sit with you.”
And if I die?
“Then, I shall die with you.”
A week prior to Christmas I met my counselor. Personally, I believe she thinks I’m nuts.
As you may know, I skipped four of five stages of death. These stages included, denial, anger, bargaining, depression. Maybe I experienced each stage but I experienced them like Tortilla Flat in Arizona, population 6. It’s the sort of town where one presses the accelerator to ensure, that in the unlikely event of mechanical failure, there’s enough speed to coast to the other end.
Thus, her question, “Why haven’t you asked ‘why me?‘
Having a top secret clearance, I could say, “Classified.” Or better yet, “Because I’m fabulous.” Then again, maybe God didn’t intentionally send me a tumor. “Well, I personally don’t think it (tumor) was intended for me. The package was postmarked, ‘To whom it may concern.’” Truthfully, I have no answer. I just remember that since 2014, my physical symptoms seemed to be accelerating.
On a weird, yet personal note, there were times I reverse-engineered the ‘why-me‘ question.
My first experience with reverse engineering came during a football game where the only player in the history of the NFL died on field. Charles Frederick “Chuck” Hughes. Hughes was sent into the game against the Chicago Bears as an injury replacement. He made one catch for 32 yards and a first down. Three plays later, he was used as a decoy in a play. After the unsuccessful play, he was running towards the huddle with 1:02 left on the clock when he collapsed, grabbing his chest. Hughes was taken away by ambulance and the game continued. At age 11 I questioned God, “Why did I live and he didn’t? What made me so special and not him?”
Even today, as doctors search my colon for another tumor, someone will press me for an ‘why me‘ answer. I don’t have one. Sometimes, I ask the same question. For instance, ESPN college football reporter Ed Aschoff died of pneumonia at 34. My response? ‘Why him, not me?” And then there’s 13-year-old Broadway star Laurel Griggs.’ Ms. Griggs suffered from obstructive lung disease and died after a massive asthma attack. My response? ‘Why her, not me?“
Throughout all my questions, God has remained stoically silent. Sometimes, there are weird back and forth that can be both funny and maddening.
“Trust me.”
“What? Seriously?”
“Yes. Trust Me.”
“F*** me.”
“I don’t do that.”
So, yeah, the answer is there, but it’s not quite as detailed as preferred.
As a former rescue man, I know all of us have terrible things happen and it’s just a matter of when such a thing knock’s the door. Otherwise, in spite of all the awful things I’ve done in my life, I’ve been fairly lucky.
I have had many wonderful times in my life. I’ve traveled extensively, scavenged beaches and experienced many wonderful things. “Why me? Not Others?” Don’t know. I am clueless. I have witnessed the deepest levels of human caring. “Why me? And, why can’t others?” Hard to say. As such, each experience humbles me and compels me to become better. I experienced great love and suffered deeply from the loss. “Why did I suffer so greatly?” Who knows. Yet, through it all, God has always … always … always made time for me. And I presume He does the same for you.
Some claim I’m hedging bets, working both sides. True, my walk with God appears perplexing: Grew up Catholic, moved to agnostic, debated atheism, became Buddhist, and Spiritual. I still claim God is an awesome friend, And as my friend, I’m fairly positive He shook His head in disbelief of my misadventures. Yet who among us hasn’t given God the leftovers of both heart and priority? Then at the end of life, look back and regret the many missed opportunities. If you’re such a person, then I’m walking with you.
When my favorite singer, Harry Chapin, died in 1981, his widow reported that Harry’s music supported 17 relatives, 14 associations, seven foundations and 82 charities. Harry wasn’t interested in saving money. He always said, ‘Money is for people,’ so he gave it away‘ (to fight hunger). Even though Chapin questioned God in life, he lived a Christ-like life. My response. ‘Why him, not me?“
So, yes. I have regrets. “Why me? But not unlike others.“
However . . . In the end, I’m fairly lucky. I have no clue why, but I accept the time remaining. In the end, I just have to trust.
And He whispers, “Yes. Trust Me.”
Years ago, Ron Srigley taught a class in which many students failed the midterm. Not just failed, but failed miserably. He asked the students what went wrong. After a few moments of silence, one young woman put up her hand and said: “We don’t understand what the books say, sir. We don’t understand the words.” Srigley looked around and saw guileless heads pensively nodding in agreement.
I experienced a similar phenomenon several weeks ago in a restaurant outside Tucson, Arizona, after a beautiful meal, I requested a $100 gift certificate for my parents. New to completing such a task, the manager assisted the young server.
Manager, “Make sure you write ‘For food and non-alcoholic beverages.’”
A pause ensued as I watched the young server.
“Ugh,” she anguished. “How do you spell ‘alcohol?’ I need my cell phone.”
Mark Zuckerberg’s reformulated Facebook’s mission statement aims to “give people power to build community and bring the world closer together.” The price for this form of community is the loss of human relationships. All of us stick our faces into our phones when face to face communication is required. Why? Mainly because we don’t know how to communicate.
I wonder if God uses a cell phone? Not sure. In 2017, a blog author outlined 15 must-have apps Christian Apps that will inspire growth. Likewise, there’s a list of 15 Buddhist Apps that will provide daily inspiration and joy. There are at least “7 best prayer apps” guaranteed to grow your faith (as opposed to the 100 or so non-guaranteed). There are apps that will remind you to pray and others that will ask others to pray. (Mind you, I am unclear why the phone’s calendar appointment couldn’t do that function, but nonetheless.) By the way, Google can now point you in the right direction for Mecca, and there’s a host of religious dating apps. Lastly, God now has a television show “God Friended Me,” in which an atheist gets a friend request from ‘God’ via Facebook.
So…does all of this help with our connection to people, and likewise, to God? We’ve become so used to not talking that it scares many to have such serious conversations. Now, any of us risk that one incorrectly used exclamation point will end a friendship. And certainly an inappropriate picture has plummeted careers. It’s a point our current leaders have learned: The lack of face-to-face interaction demeans and depersonalizes. It’s a subset of society and or religion altogether.
For instance—I kid you not—I just received a text message from someone from Denver, Colorado (720) ***-****. I have no clue who the person(s) is/are. It could be anyone. I presume it is a woman, for the person(s) sent an anime of a woman dressed in a Santa outfit riding a dragon. However, I presume the person wishes me ‘Happy Holidays.’ It could be ironic. Just the other day I was praying, and jokingly said to the deceased person I prayed about, “Ah. Send me a text letting me know how you’re doing.” Maybe it’s visible proof that God allows cell phone use. However, the test came from an Android phone. Does that mean God uses only Android? Irregardless, hate to see that one-time text charge from the hereafter.
Looping back to Ron Srigley, Srigley offered his students extra credit if they gave up their phones for nine days and wrote about the experience. Twelve students took the offer. The results were impressive, as many students wrote of being both distracted and morally compromised.
- Kate: “Having a cell phone has affected my code of morals, and this scares me … I regret to admit that I have texted in class this year, something I swore to myself in high school that I would never do … I am disappointed in myself now that I see how much I have come to depend on technology … I start to wonder if it has affected who I am as a person, and then I remember that it already has.”
- And James, though he says we must continue to develop our technology, said that “what many people forget is that it is vital for us not to lose our fundamental values along the way.”
Of course, I write all of this with full knowledge that, for all practical purposes, I’m a blogger. Still, I doubt if the (720) area code text was from God or otherwise. And maybe, just maybe, God does follow my blog. Never know, right? I have no clue, but I’ll keep you apprised. My point is simple, put the phone down and meaningful conversations, both personal and spiritual.
God wants personal, not a text. And those you love deserve the same.
I awoke stiff. Without personally checking emotion at the door, I could have screamed — the cervical bones within, and maybe the tumor within, grows angrier each day. Still, things moved. Legs worked. Arms worked. Fingers grasped. Nothing seemed to operate efficiently as yesterday.
It’s a sick person’s life. The body groans. Maybe it’s a moaning borne from careless days of abandoned discretion, discarded thoughts and pushing the barriers of my body beyond natural law.
My brother asked, “What caused the tumor? Something caused it.”
In truth, it could have been a wanton disregard of my body. Maybe carelessness. Maybe even genetics. Could also have been exposed to white phosphorus emissions, a heavy dose of radiation, exhaust carcinogens from having worked 12 years a slave for American Honda or any number of exposures.
I could only muster, “Life. There is no reason. Shit happens.”
“Maybe there’s a ‘new normal,’” he replied.
A new normal. Hmm. ‘New normal?’ How does one define ‘new normal?’
For anyone with a terminal illness, there comes the point in time when ‘normal’ undergoes several stages of metamorphosis. Paraphrasing from Heinrich Harrer, “I am now in a place where time stands still, yet everything moves.” Prediagnosis, the world stopped for no one. Post-diagnosis, the world stopped for no one. All of us are skateboarders on a cosmic marble.
Life continues regardless of trials, tribulations or triumphs. At work, there are projects, plane tickets, phone calls and money spent to complete them all. Nights are filled with my mother’s surgeries, my father’s dementia, and any number of assorted crises from friends, family and neighbors alike. Strangely, each offers a reprieve from my burden, yet none affords the pardon silently sought.
My life stopped April 22, 2019, 1:09 PM. Diagnosis? Tumor. I wonder if others experienced the same.
I’m not an expert in medical systems, PET or MRI. But I’ve had enough training from countless EHR installs that even I could tell across the room. My PET scan measured how much work cells were doing. Cancer is very active. And part of my neck scan looked light city at night, from an airplane. When there is no cancer, the film appears dark. “Double Fucked,” or DF, as some nurses call it, looks like downtown Los Angeles. My scan didn’t look like Los Angeles. Instead, it looked like Saint Louis.
The doctor used many words — the last few reinforced what I already knew. Treatment will focus on arresting the tumor. “Quality of life,” not cure.
The EHR delivered the scan electronically. I read it on April 22, 2019, 1:09 PM. The day my life stopped.
An acquaintance from work noticed I was lost in thought.
“Homesick?“
“Interesting question,” I thought. “Wherever I live, I shall feel homesick for upstate New York. I often think of walking the banks of the Hudson River, where I can still hear the cries of wild geese and deer as they darted throughout the clear, cool moonlight. I remember no other home, not even that of my childhood where I can be so instantly immersed.“
Admittedly, I wished to have been walking the Hudson, where both comfort and hope percolated and bathed the soul. It’s where I felt the presence of God, just as I do now. And just like MacClean wrote, “I am haunted by water.” The Hudson haunts me.
Laying in bed, a breeze spilled through the open window. I mustered to sit forward and peered outward at the cars three-quarters of a mile away. A silence fell upon me. There, in the late-night silence, my thoughts stirred. Not everyone will understand my journey. And that’s OK. I have to this life, for I can live no other.
Once again, I paraphrased Harrer, looked up to the stars above, and silently whispered unto the heavens.
“I can’t say I know where you want me to go, nor if my bad deeds can be purified. There are so many things I have done that I regret. But when I come to a full stop, I hope you understand that the distance between us is not as great as others may claim.”
I rolled back to bed and muttered to the Godly presence still with me.
“It’s not what has happened to me that counts, it’s how I choose to respond. I will give my best.”
Laid quiet for some time. I sighed heavily for a moment. Just like others before and after me, my life will change irretrievably; priorities, aspirations, and promises would go unfulfilled.
“By the way, please start time again?”