Archive for June, 2019


Treatment began early May. Two months later, I’m amazed at how much my life is tethered to technology.

For many, the smartphone is a magic wand that summons carry-out, pays for gasoline, can connect friends, track flights, make reservations and even order from the great big box store in the sky. With the exception of a few moments in my writings, I’ve focused on just how much this technology can destroy a life. Via some weird purchasing smartphone app, one could buy something from another country, make an ill-advised comment or get trolled, or get a ton of botnet emails on Facebook, Instagram or Twitter. I’ve retrieved the weather, texted a friend and checked the latest Chicago Cubs score.

Yet, it can be a lifesaver. September 14th, Siri was able to send a personal distress call. At 2:36 AM, I returned to life. My first comment was to apologize for not having this event at 2:36 PM.

In his article, In The Land Where the Internet Ends, New York Times writer Pagan Kennedy details how he drove down a back road in West Virginia and into a parallel reality. After passing Spruce Mountain, his phone lost service and remained comatose for days.

“I came in hopes of finding a certain kind of wildness and solitude. I live in Massachusetts, and I often disappear into the forests and rivers to clear my head. I’ve always loved the moment when the bars on my phone disappear. When I’m out of range entirely, floating along in a kayak, time grows elastic. I stare down into that other kingdom below me, at the minnows darting through the duckweed, and feel deeply free — no one’s watching; no one knows where I am.”

Like Kennedy, I so desperately wish to pull my phone out and hurl the damn things into the air. Yet, I cannot. My life is attached to the technology, intertwined by a host of technology genius, smartwatch, smartphone, and body. The aforementioned technology lives for me. As long as I live, it lives. Dare I pass, someone will wipe its system and become another person’s dread or wonder. Smart technology tracks everything–blood pressure, pulse, calories, exercise, sleep patterns, medications, and weight. I can communicate with my physicians, request medications, receive test results, schedule appointments, track both mood and thoughts. And, at the slightest miscue, it can notify emergency contacts and I might be afforded the opportunity to return.

Medical beeps and buzzes intricately denote bodily vital signs. And in that, I’ve noticed amazing things. For instance, April 25, on the day I learned of my tumor, my ‘Beats Per Minute” was 96. Two months later, after treatment, 66. Yet, this capability and inevitably only deepens the profound mystery of my own identity. I took birth in human form. Therefore, what force gave life? What forces allowed others the ability to create the technology that measures and assists this form (body)? And regardless of the answer, the world’s great spiritual teachings repeat I am not who I thought I was.

But does that mean there is no self or a search for true self? Or, is ‘self’ different? These are hard questions to answer. Technology can measure bleeps and blips, but identity, friendship, love and ultimately, humanity remains elusive to the critical eye. As such, the technology enhances my humanness, and the soul God hath given this vessel (me). I appreciate the fact that the best things humans enjoy (being human) is the same thing that will destroy my time here. Yet, the knowledge that I’m fully alive and awake is wondrous.

In being overly holy and righteous, we discard the wonder of humanity, of being created in the image of something beautiful and miraculous. I don’t believe such deep levels of righteousness is what God intended.

Like Thoreau, I too sometimes awake in the night and think of possibilities. I can catch an echo of the great exchange of love between humanity and eternal life. We have the ability to create an original work of art. This creation (body) does not originate from the bleeps and blips. I was not generated based upon programming. The technology connects my body to the world helps me understand and appreciate my humanity. And if I am strong enough to look beyond my own selfishness, maybe I can understand a small nugget of the divine–how spirit could become flesh. It’s not by luck. Maybe, rather, divine.

“I try to make sense of things. Which is why, I guess, I believe in destiny. There must be a reason that I am as I am. There must be.” ~Bicentennial Man~

Mike, a retired Air Force veteran, is a tall, leaner man. As an Air Force colonel, hundreds entrusted him to lead the squadron. In retirement, he entered the private sector and leveraged his military leadership for a second paycheck.

As one manager noted, Mike lived to work, often working 60 hours a week.

He cared little for the everyday emotional needs of those he led. His job was to lead. When a sympathetic word of support was required, he delivered it with a dry statement and a faceless smile. It was as if he read it from a book, similar to a bad actor reading dryly from a script.

Life changes.

Mike called me to his office and shut the door after entering. Considering the fact Mike has spoken maybe 15 minutes in the past 18 months, I expected some sort of downsizing. I know personally that a cancer diagnosis can affect a person’s work life to different degrees. Your decisions about working during and after cancer treatment depend on your financial resources, the type of work you do, and the demands of your treatment and recovery. Many people are able to continue working during cancer treatment. Others leave their jobs and then return after active cancer treatment ends. As a result, I tend to always tend to expect the worst.

“My wife has cancer,” Mike said dejectedly.

“I am so sorry.” After a long pause, “What stage?”

“Four.”

He got up from his chair, walked to the window and looked at the rain streaking across the glass. He quivered.

“I am unsure of what to do. The military benefits are insane. I can’t afford the time it takes to fight for referrals, or wait the three months until there is an opening at the specialist, or wait the six months to get my wife a referral at an outside clinic. They tell me I am required to make a co-payment, which is part of the deductible and that I would have to pay the remaining balance if the charges exceed the amount if the care provider is not part of the program. So much god damned paperwork.”

A small part of me wanted to say, “Dude. Welcome to the working world.” I didn’t. However, Mike isn’t alone.

In the road ahead, Mike will face insurmountable “insurance issues,” clerical errors, and times he will have no clue what to do. There will be urgencies. There will be applications for time off under the Family Medical Leave Act, but no salary. There may be a lost promotion, lost position or reassignment. And there will be pharmacuetical challanges.

A cancer patient I met was prescribed a critical self-injected medication to be taken at home. Prior authorization was received. However, the pharmacy handling the case refused to allow the physician’s practice pharmacy to fill the script. So, they forwarded it to the benefit mandated pharmacy. Unfortunately, the mandated pharmacy could not fill the prescription, and without informing the patient or his doctor, they outsourced the prescription to yet another pharmacy.

Then there will be the lies. When hitting the fork in the road, both doctor and loved ones will be forced to make a decision worthy of the Greek heroine Antigone.

Should the patient’s best interest be paramount or the requirements of the system?

Ethical issues are rarely cut and dry because you’ve got competing interests. No cargiver gets up in the morning and says, ‘I’m going to lie to people today.’ It’s more about saying, ‘How do I balance my obligation to be truthful with the desire to be compassionate.'”

Lastly, the hours. Like me, Mike will find endless hours of sitting still while emotions rage. Just as his wife’s body will clamor for relief, the mind will torture in a myriad of ways. Just like Richard Brown character from The Hours:

But I still have to face the hours, don’t I? I mean, the hours after… and the hours after that…

And just like millions before us, Mike will have to learn to be there for it all — to attend to the sensations, recognizing at that moment, as painful or imperfect or frustrating as it was, that this is the actual texture and content of life.

Life’s always changing.

To experience change — to noticed that nothing ever stayed the same — to know these thoughts, emotions, and sensations as the incessant flow of phenomena.

It is the nature of all things that take form to dissolve again.” — the Buddha

CancerTuesday night, while addressing the crowd at President Trump’s 2020 campaign kickoff rally in Orlando, Fla., the president’s eldest son called out Biden for his decades in Washington as a lawmaker and vice president, questioning why he had not pushed to find a cure before.

“What was the good one last week? Remember? Joe Biden comes out, ‘Well, if you elect me president, I’m going to cure cancer,'” Trump Jr. said. “Wow, why the hell didn’t you do that over the last 50 years, Joe?”

Hours later, President Trump kicked off his reelection campaign by promising to cure cancer, land on Mars, etc.

We will push onward with new medical frontiers. We will come up with the cures to many, many problems, to many, many diseases—including cancer and others and we’re getting closer all the time,” President Trump said. “We will eradicate AIDS in America once and for all and we’re very close. We will lay the foundation for landing American astronauts on the surface of Mars.”

Guess how many forms of cancer there are? Over 100.

My thoughts? In case you’re in a rush, Walgreens doesn’t have it. Curing cancer will be exremely difficult since there’s not a one-size-fits-all solution. This makes it very difficult to say that an approach for one form of cancer will be adaptable to all. Whether or not a cure for all cancer types is feasible is a matter of strong debate; although promising studies are continually published and covered by the media almost every day.

Then again, Trump:

  • “[is a] Very intelligent person;”
  • “I do get good ratings.”
  • “One of the great memories of all time.”
  • “I’m a very stable genius.”
  • “I went to an Ivy League school. I know words. I have the best words.”

As a Buddhist, Trump’s statements are directly opposed to the concept of ‘Ahimsa.’ Ahimsa is an important spiritual doctrine shared in many faiths. It means ‘non-injury’ and or ‘non-killing’. Trump’s statements are nothing more than false hope.

Therefore, don’t line up at the Walgreens any time soon.

A Kansas mother posted videos about giving chlorine dioxide (basically industrial bleach), to her sons. Laurel Austin documented her son Jeremy’s first dosing of chlorine dioxide on YouTube. Austin a mother of six, four of whom are adults with autism has tried almost every fad online “cure” for autism — a developmental disorder that has no known cure — including treatments for heavy metal poisoning, hormone therapies used in chemical castration and “natural” remedies such as cilantro and algae.

Nothing worked. Including the bleach.

The solution Austin uses was first promoted decades ago by former Scientologist, Jim Humble. Humble touted the mixture as a cure for AIDS, cancer and almost every other disease known to humanity. in October 2016, after years of investigation by the United States and other countries, and just days after ABC News tracked him down in Mexico to ask about the dangerous game prosecutors say his church is playing with desperate people, Humble wrote:

“There are certainly times I have said some things that I probably should have said differently. For lack of a better way to express things at the time — or because others put words in my mouth, in the past I have stated that MMS (Mineral Miracle Solution) cures most of all diseases. Today, I say that MMS cures nothing!”

Few four-letter words in disease management are more frustrating than the word “cure.” I believe I got ‘sick’ during my military rotation on Guam. In four decades of being sick, I’ve been repeatedly told about cures. I just took this one supplement or went on that one diet, all of my troubles would end. I’ve been told to drink more water. Why hadn’t I thought of that?

Random cures popped up everywhere. First, there was shark cartilage supplements. Then there was Bee venom. Let’s not forget acupuncture. Now turmeric is now in vogue. You know, that magic root used in Indian cooking that turns food and fingers a burnt yellow. Yeah. I only presume that some nameless researcher, at an Indian restaurant, picked up a piece of turmeric and said, “Gee. I bet this will cure cancer, arthritis, heart disease, multiple sclerosis, and gout.

As a Buddhist, living with a terminal disease is about learning how to accept and how to adjust. It’s about recognizing progress; being grateful for what I can and can’t do while still remaining optimistic. The tumor in my neck doesn’t define me, rather I define myself. I strengthen in the moonlight of night and live to tarry another day. When all is said and done,my greatest strengths are drawn from tender and heartfelt moments shared with others. There within that body of love, is a door unto another world, that keeps on hoping.

I close with the following story.

A preaching professor at Harvard University tells the story of the year his 5-year-old son was working on an art project in his kindergarten class. It was made of plaster, resembled nothing in particular, but with some paint, sparkle and time in a kiln, it was ready to be wrapped as a gift. He wrapped it himself, and was beside himself with excitement. It would be a gift for his father, one three months in the making.

Early in December, when the child could hardly contain the secret, the last day of school finally came. All the parents arrived for the big Christmas play, and when the students left for home, they were finally allowed to take their ceramic presents home. The professor’s son secured his gift, ran toward his parents, tripped, and fell to the floor. The gift went airborne, and when it landed on the cafeteria floor, the shattering sound stopped all conversations. It was perfectly quiet for a moment, as all involved considered the magnitude of the loss. For a 5-year-old, there had never been a more expensive gift. He crumpled down on the floor next to his broken gift and just started crying.

Both parents rushed to their son, but the father was uncomfortable with the moment. People were watching. His son was crying. He patted the boy on the head and said, “Son, it’s OK – it doesn’t matter.” His wife glared at the great professor. “Oh yes, it matters,” she said to both of her men, “Oh yes, it does matter.” She cradled her son in her arms, rocked him back and forth, and cried with him.

In a few minutes, the crying ceased. “Now,” said the mother, “let’s go home and see what can be made with what’s left.” And so with mother’s magic and a glue gun, they put together from the broken pieces a multi-colored butterfly. Amazingly, the artwork after the tragedy was actually much more beautiful than what it had been in a pre-broken state.

Rather than looking for the magic cure, see what can be made with what’s left.

Three weeks ago, Ms. Kalabash, my 63-year-old neighbor, stopped me before my travel to Sacramento. She noted how the cool early morn temperature floated through her shoulder-length hair, of the crisp morning air, and of the birds jotting from tree to tree.

“Beautiful morning. Just beautiful,” Kalabash exclaimed. Noting my luggage, “Where are you off to this week?”

“Ah. To the desert –Sacramento.”

“Why? What the hell’s there?”

“Ah, someone decided it was a great place to build a company headquarters.”

She raised an eyebrow while simultaneously wrinkling her nose. “Well,” she paused. “Have a great trip.”

It was the last time I saw Kalabash.

Three days ago, a realtor notice posted a for sale sign the community bulletin board. Deep in debt from recurring years of arthritic pain, and no hope blooming over the horizon, she went to bed on June 10th and never awoke. Some speculated she passed from lack of proper medical care. Others claimed she downed a series of pills in sequence and committed suicide.

Meeting her daughter yesterday afternoon, her daughter indicated Kalabash was over $60,000 in medical debt, even with insurance. “My mother couldn’t keep up,” wiping away an errant tear. Kalabash racked up more than several thousand dollars in out-of-pocket medical expenses—doctors, x-rays, surgeons, anesthesiologists, radiologists, and pharmaceuticals, you name it. She had health insurance. However, the policy had a $6,000 deductible.

Herein lay just one debate over the future of the Affordable Care Act—just because a person is insured, doesn’t mean healthcare is affordable. Years and years of deductibles add up. For those with lifetime illnesses, physicians, hospitals, pharmaceuticals, and other medical costs are killers.

And like many others before, Kalabash became invisible. She disappeared into the night.

Kalabash became invisible – to everyone.

Invisible. Strange word.

Like Kalabash, I don’t look sick yet. Like Kalabash, I’ve told nothing of my health to but only a limited few. Clothes hide weight loss; drugs help me walk; smiles and laughter disarm the curious. As a result, I can find myself not wanting to go out, even if I if can, because the importance of willing to be accepted is more critical than the months remaining. How I look doesn’t necessarily reflect how I feel.

Invisibility can bring tragic consequences. Kalabash feared misunderstanding over what it meant to be disabled. Too sick to work and be active also meant she couldn’t go out to a restaurant or experience a night out. She feared her long-term disability payments would be revoked if someone saw them being active in some way, perhaps going to the store.

Kalabash felt the burden was on her to be invisible to others. It turns out; she died that way.

For those living an invisible life, Author Toni Bernhard wrote:

… I remembered something a [Buddhist] teacher had said: ‘If your compassion doesn’t include yourself, it is incomplete.’

Bernhard’s comments will come as a challenge to many, but looking at myself,  maybe I need to stop blaming myself for getting sick. It might help if the world does the same.

Accountability

This past week, former school resource office Scot Peterson was arrested. We the citizens, we the country, former officers, legislators and parents of the victims willing vilify Peterson. For taking cover rather than confronting the killer, Peterson has been branded a coward, nationally heckled and vilified.

We vilify Peterson for failing to confront the Parkland school shooter, his retirement, his pension, and his life. As such, Broward County prosecutors charged Peterson with seven counts of child neglect with great bodily harm, three counts of culpable negligence, exposure to harm, and one count of perjury.

Damn it. Peterson’s responsible.

“He should rot, that’s how I feel,” said Fred Guttenberg, whose 14-year-old daughter, Jaime, was on the third floor when she died. “My daughter was one of the last to be shot. My daughter absolutely could have been saved by him and she wasn’t.”

“If Scot Peterson had done his job my son would be alive today,” said Linda Schulman, Beigel’s mother. “One hundred percent had he done something, the active shooter would not have made it to the third floor, had he done his job, instead of standing outside like a coward.”

How many are so positive their child would be alive today if Peterson acted remains unclear. But they’re positive.

“My heart is just beating because we’re over a year here and this is just now happening,” said Gena Hoyer, mother of 14-year-old Luke, who died in the shooting. “This is long overdue.”

“He needs to go to jail and he needs to serve a lifetime in prison for not going in that day and taking down the threat that led to the death of our loved ones,” said Lori Alhadeff, whose daughter, Alyssa, 14, also died that day. “It was his duty to go into that building and to engage the threat, and he froze and he did nothing.”

“It’s been a long time coming,” said Andrew Pollack, whose daughter Meadow, 18, was killed, also on the third floor. “Accountability is all I wanted, and now it looks like it’s happening.”

Accountability?

I am not a supporter of Peterson. If he failed, he failed. If he perjured himself, he should face the consequences. However, after we’re done staking this man to a cross, we need to take that same passion and convict ourselves – each and every one of us. We are just as responsible for every dead person, from Columbine to current. We can’t stake decades of pain upon one man.

If we convict him, we have to convict ourselves. Allow me to explain.

Since the Parkland shooting in February 2018, over forty school shootings have occurred. In the minutes and hours after Parkland, Florida shooting, politicians began what has become something of a grim ritual: offered “thoughts and prayers” to the victims and deflect.

The nonpartisan Center for Responsive Politics estimated that during the 2016 election, the NRA and affiliates spent a record $54 million to secure Republican control of the White House and Congress, including $30.3 million to help elect Donald Trump.

The NRA funneled more than $1 million to re-elect Senator Marco Rubio. John McCain garnered $7,000,000. Burr received $6.9 million. Blunt hauled in $4.6 million. Garner got $3.8 million. And so on, and so on and so on.

However, Americans elected Rubio, McCain, Burr, Blunt, Garner and so on, and so on and so. We accepted prayers from the masses, said it sucks and moved on.

NBC estimates Americans own an estimated 15 million AR-15s. Of the 340 mass shootings between 1966 and 2016, at least one handgun was used in 76 percent of events, compared to less than 30 percent of events that involved any rifle, not just those categorized as assault-style. Assault-style rifles in particular were present in 67 of the 340 shootings (20%).

In fact, since 2007, at least 173 people have been killed in mass shootings in the United States involving AR-15s, according to a New York Times analysis. The grim list includes crimes in Newtown, Conn.; Las Vegas; San Bernardino, Calif.; and now Parkland, Fla.

When we’re done vilifying Peterson, I hope God holds a mirror to our faces and publicly states:

“How about it? How many would be alive had YOU acted?”

I once heard a nurse refer to the cancer clinic waiting room as “cell block death.” She refused any notoriety as the originator, but its description stuck.

Cancer can be the ultimate waiting room. We wait for a diagnosis and then to learn more about our diagnosis. We wait for test results. Then we are in the ultimate waiting room after treatment, waiting to find out if our cancer will return and if we will ultimately survive our cancer. We wait for years wondering if we are safe, if we have beaten cancer.

The woman sat across from me, emotionally lost, either as a result of a broken romance, life changes from a serious illness, or maybe a demanding employer. In my time, I’ve seen a lot. Even though my shinning armor had rusted, I reached back into my days of dreamlike knighthood and reached out.

Huh? I’m sorry?

I asked if you were ok? You seem concerned.

Oh,” collecting herself. “My bossed called. Asked if my cancer treatment would impact my brain and thought process.”

God,” I said horrifyingly. “I am so sorry.

I am only on my second treatment. I have breast cancer, not brain cancer. I never experienced anything like this before. Have you?”

Ah,” chuckling nervously. “Ah,” pausing again, “Three weeks ago, a supervisor called the sister of a deceased employee three hours after the funeral and demanded when she would ship the company laptop to Information Technology.

Oh my God,” raising her palm to her lips. “That’s awful.

Yup,” with a pause. “When HR heard, HR sent an email to all managers to never, ever do that again, that any communications with a deceased employee’s family comes from HR.” Rolling my eyes, “Imagine, someone had to tell them this.

Sheesh,” shaking her head in disbelief.

Yeah, idiots are out there. Unfortunately, some are in management. When I was in consulting, I witnessed a CEO ghost-pepper mad that the company hadn’t fired an employee prior to receiving a liver transplant, ‘…it was going to affect our health-care plan,’ he stated.

She chuckled, “What kind of consulting was this?

Healthcare.

She roared in laughter. “Yet, here you are.”

Irony of ironies.” shrugging.

I handed a business card and requested that should she ever need someone, to either write an email or call. She smiled, slipped the business card and mouthed the words ‘thank you.’ In the days following, she has not contacted me.

Contrary to the public perception, the statement “first, do no harm” it isn’t a part of the Hippocratic Oath at all. “First, do no harm” is from “Of the Epidemics.” I’ve met many a ‘professional,’ both in and out of healthcare. Let me say this, helping the sick is ‘optional.’

For all on the road to kingdom come, it’s up to us to take care of the sick, the disabled or those in pain. If we see someone struggling with a heavy load or difficult task, we step in and share their burden – share the pain.

“Cancer is like being stuck in the middle of the road with a bus barreling down on you, but you can’t tell how close it is or when it’s going to hit you.”

~Susanne Kraus-Dahlgren~

I flew into St. Louis Friday to attend a memorial for a coworker who passed about a week prior. I remember the call.

Heart attack,” Ms. J. muttered while listening in stunned silence.

The pause was long.

Heart attack,” she whispered in disbelief.

Bob J. was a year-and-a-half older. At 61, he lived a wonderful life and was appreciated by many. Husband, father, caretaker to many abused pets. He was also a suffering Cubs fan. And if he had watched the ending of yesterday’s Cubs-Cardinals game in St. Louis last night, he be dead. So, maybe he got lucky.

Like many before us, I took it for granted that Bob would be around for years. I never told him of my tumor. I never bothered to figure out how I would broach the subject, I just figured he would always be around and I would ‘get to it.’

Life is strange. I attended the Saturday memorial. Late afternoon, I sit listening to jazz pumped via a Bluetooth headset while sipping ice tea at Barnes and Noble. In a few hours, I will sit at a bar and watch the Boston Bruins-St. Louis Blues hockey game. And all the while, I will look upon the lives before me and realize life goes on. Life always does. The world didn’t stop for Bob. It won’t stop for me either.

Of course old acquaintances gathered and gabbed memoriors from a life unavailable.

Ah, the good ol’ days,” Larry chuckled.

Ah, the ‘good ol’ days.’ It was a life before downsizing, when our business hummed at breakneck speeds. Bob, myself and countless others were part of that life. We remembered a life filled with Bob; a life filled with each other; a life filled with laughter. We told tall stories. We laughed. We shook hands. We promised to LinkedIn. We promised to connect. We promised to stay in touch.

We won’t.

None know my story. So, within the course of the normal ‘getting to know you‘ conversation, there are landmines to navigate . . . like how much to say. Friendships are fragile–come too strong, be written off–wait too long, become insincere. I mean, when is the right time to drop the “I’m going to die” bomb?”

How you doing?

Me?” pointing to myself. “Oh, I am going to die in a couple years. Maybe sooner.

Most haven’t learned what I learned, that the beautiful death portrayed by heroes and heroines in Hollywood film is an exception, not the rule.

Prior to Bob’s memorial, I took a customary shower. Gazing for a moment in the mirror, I realized how thin I’ve become. Clothes don’t longer fit. A belt with extra holes that compensates for a dwindling waste. Skin tinged from small streaks of purple, a byproduct of drugs oozing through my veins. There will be no verbal cue. No one will say it. But their eyes will verify that the rose-tinted death we all aspire will not occur me.

As a Buddhist, I realize y body is rented. The day is rented. Nothing will last. And if we live from a mindset of “I am entitled to this,” or “I deserve such-and-such,” we’ll get stuck trying to hold onto something no longer there. Either we change or the world will force us to change.

There are many lessons. First, life goes on – until it doesn’t. Second, the idea of having time for preparation, a time to say goodbye, to receive love and give love, is the kind of death any would choose is wonderful. We all want a death, without suffering, to do what we want to do. Only a handful will get it.

It would poetic for me to say my death should be free of pain, free from suffering, free of deterioration, and free of complications. But that’s not death. That’s a dream. Therefore, the goal should be to have a deeper compassion for others and a greater appreciation for the life that remains.

In doing that, life will go on. And that’s the final lesson Bob taught.

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