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Reclaiming Humanity

I watched PBS’ four-part documentary College Behind Bars. The documentary tells the story of a small group of incarcerated men and women struggling to earn college degrees and turn their lives around in one of the most rigorous and effective prison education programs in the United States – the Bard Prison Initiative.

During the 4th episode, the internal reflection of Rodney Spivey-Jones challenged me to reevaluate my failures. Looking squarely into the camera, Mr. Jones reflected on his shortcomings. “We rarely get a chance to think about how we hurt the victims. And yet, that’s something that’s required of us when we go to the parole board. Once you can empathize with other people, you can realize that you’ve caused a lot of harm. If you can connect your pain to the pain that you’ve caused, there’s a responsibility there. And it’s hard to escape it.”

Over the past eight years, I revisited the concept of ‘making amends,’ a traditional term specifically designed to “correct a mistake that one has made, or a bad situation one has caused.” In May 2013, I wrote of twenty-six (26) severely painful situations that required amends. Seven (7) of the twenty-six (26) refused any communication, eleven (11) forgave, four (4) were never found, and four (4) others were works in progress. March 2019, I reconnected with a woman to whom I wrote 18 letters years prior. Despite those efforts, Mr. Jones caused reflection. Did I do enough?

What is enough? All of us are like Rodney Spivey-Jones. I have many people where I only recently thought of how I hurt them. Only a short-term diagnosis of ‘terminal’ forced me to explore the level of harm I caused? For instance, that woman in the military who I badgered for a date is ok now? Did she have a good life? That company I took quietly accepted over expensed travel reimbursements, could they have used that money to benefit another? And of the woman I married and divorced, did I leave you better, or just me?

The PBS documentary also followed former inmate Dyjuan Tatro, who was serving a 12-year prison sentence during filming. Not only did he pay for his crime, but he also made amends and laid the foundation for a better life post-prison. “It was in prison; through the Bard Prison Initiative, that I was able to turn my life around,” Tatro said. “When you’re in prison, and you don’t have any other opportunity, you have to make the most of the one that’s been given to you.” Tatro is making the most of every day. 

Our lives are a collection of ‘single’ days. As such, throughout much of my life, I embraced little ‘intentionality.’ Did I amend the errors of my past? Have I transitioned through restitution? Was there an apology, changed behavior, compensation, or generosity? Or, did I play the ‘victim’ card like decades earlier? Did I lay the foundation for a better life (whether here or in the next)? 

For so many years, everywhere I went before, I created a lot more damage than good. So much so, that I am unsure whether I could seriously restitute anything for past aggressions. As stated before, and as I state to God, I am accountable. Just as Rodney Spivey-Jones did on national television, the ‘buck’ drops at my shoes, and I must make amends. 

Even though I am down to nine months of a two-year ‘prognosis poor’ diagnosis, I have much to give and much to offer. I will continue to show that I am capable of redemption. God knows my life has value beyond the sum of my errors. One day, I hope God will note that this man was able to reclaim his humanity rather than succumbing to ignorance.

Reclaim yours too.

Only One Song

I’ve been told music is good for the soul and that music therapy may assist those with Parkinson’s and other medical disorders. Listening to music may also be of great assistance, including improvements in balance, singing, voice command.

Harry Chapin is one of my favorite singers. Except for that which is available on YouTube, I’ve never saw him play in concert. Accordingly, a recurring dream is to play a number of his songs on a guitar. Part of this fantasy is an ongoing dream of being a famous singer. Part if it is forgotten time when my soul simply wanted to express itself.

Supposedly, age has nothing to do with learning to play a musical instrument. One could be 15, 30, 40, 50, 60, or 70. I used to play guitar as a teenager, but had neither the time, energy, nor devotion to learn to seriously study. I could read guitar music and play its associated chord, but spent little time learning the meaning behind the music, the words, or even the composer’s heart. 

Years I read Beethoven wrote of about hearing loss. Symptoms and difficulties caused him continual problems, both professionally and socially. An autopsy revealed he had a distended inner ear, which developed lesions over time. Still, regardless of distress, historians claim Beethoven’s hearing loss never  prevented him from composing music. He heard and played music for decades, so he understood how instruments and voices sounded and how they complimented one another. He could always imagine in his mind what his compositions would sound like. 

I took a similar approach when recently acquiring an Ovation classical guitar. I studied how the Applause guitar was manufactured and was overly critical of the small blemish in the binding. But, we’re all imperfect. And such imperfections shouldn’t prevent us from creating our own kind of music.

Therefore, I accepted my Applause as a living soul that will allow me to be creative, express myself and produce harmony at some level. Just as all things are interconnected, each one of us is part composer, part conductor. We shuffle through each day in hopes of creating our own music—to hear it, to play it, and to become inspired through it. 

I believe Chapin hinted at this type of synergy in his lyric “You Are the Only Song.”

“… when you sing from the inside
You hope that something shows
And that it why
Yes you are the only song, the only song I need
You’re my laughter and you’re my lonely song
You’re the harvest and you’re the seed
And you’re my first and my final song
For you own me indeed
Oh yes, oh yes,
Yes, after all is said and done
You’re the one song that I need”

In the end, I will try and create whatever music possibly. I will not become a star. I will not be ‘discovered’ by some record executive. I will study, learn the craft, the meaning, and soul. I do it for God and myself. Why? To reclaim an unfilled calling.

I will play these songs to silence
In empty rooms or crowded halls
I will sing to God in standing room
I’ll sing em’ to the stars

It’s just as God would want playing for the only song—the one song we need.

In my last blog post, I discussed losing communication. I find there’s always a way to rejuvenate and recharge. The resulting mental peace, inner satisfaction, and clarity are what makes me stronger. Lastly, I found the level of pain and pain medication has hampered this ability. The result often leaves me asleep after a few minutes.

If one is over-stressed or has been dealing with sleep-deprivation, it shouldn’t come as a surprise if you fall asleep. My original meditation teacher stated outright that sleep cannot be dismissed, that the body will take what it needs. After several weeks of dealing with a parent in palliative care, flying across the country, and living in a single guest room, returning home, and working remotely was physically exhausting. 

This repeated sleep condition has deprived me of a critical link in this world. Communication with a friend has been a godsend to the hustle and bustle of our overly crisis-prone times. Last week, I told my healthcare case manager, “I know she’s still there,” I told my case manager. “… I can’t communicate as clearly as I could before. I want her to know that I miss her and our conversations. However, it seems I’ve misplaced the phone number.

The person I’ve been meditating upon has been a source of inspiration. Many who’ve lost a relative or friend have stated the most common way they know a family member or friend is nearby is through a sense of presence. Likewise, I can sense Ms. K. at various times throughout the week, even being touched. I have not experienced the same with other long passed family members or friends.

In-depth communication in meditation has been significantly impacted (maybe ‘restricted’ is a more appropriate word) these past several weeks. And finding the solution has been equally challenging. In the course of searching for a resolution, I may have found a path that might be helpful for all of us during such times.

First, all relationships require work. Each partner must be committed to listening, letting go of control, practicing vulnerability, overcoming resistance to change, being honest, even in the face of fear, and focusing on your work rather than trying to change your partner. 

I may have taken my meditation partner for granted. I have to realize that this is not a ‘one side benefits more than the other.’ Like most, my relationship was meant to be win-win, not win-lose, or mostly-win mostly-lose. It has to be interdependent, a relationship where each side is willing to come together to make something more significant. 

Second. I need to ask better questions. What steps can I do to positively inject a sense of value, even if it means becoming a better listener? Can I reflect upon my errors and understand the positive differences I make now?

Third. What can I do to maximize that which I currently have? I’ve already mentioned that I can sense my partner at various times throughout the week. I also believe she touches me, as well. Therefore, since everything has not been completely severed, how can I maximize what I already have? How can I enrich that which I already have? 

Life is an adversity response business. We have to create possibilities that do not currently exist. We must learn to course correct. We have to presume relationships in both heaven and earth require a continual course correction. If we do, we’ll find we’ll have created a significant relationship.

Almost everything in Buddhism boils down to fear. Suffering is caused by fear, and either panic or freezing stops us from speaking up against injustice and often causes people to leave the path of goodness (i.e., the universal truth). When we get too deep, fear smacks us across the face and says, “This is no longer good.”

In meeting my case manager for the first time since March, I admitted to a host of fears: mainly losing my compass (i.e., the fear of the unknown); that I hadn’t processed my Parkinson’s Diagnosis; the fear of being unable to work; and, (after seeing many COVID-19 patients) the fear of dying a long and painful death (as opposed to quick and easy).

The compass throughout this ordeal was Ms. K. I have been successfully able to communicate clearly and thoughtfully since early 2019. As advancing pain presses, I fall asleep during meditation and fail to seize the opportunity for reflection of world’s events. (Ok. Maybe it’s about my circumstances.) 

“I know she’s still there,” I told my case manager. “. . . but I can’t communicate as clearly as I could before. I want her to know that I miss her and our conversations. However, it seems I’ve misplaced the phone number.”

In M*A*S*Hs’ “Pressure Points” episode, Sidney Freedman claims he’s conducting fact-finding medical research on stress. After making the rounds, Freedman meets Col. Potter. 

Truthfully, Potter called Sidney. Potter shares his feelings that his surgical skills are “. . . a lot less perfect than I can accept.” He’s worried but insists nothing’s wrong and wished to vent. Near the episode’s end, Potter tells Freedman he’s anxious about losing his touch (as a surgeon), and the idea of performing surgery fills him with terror. 

I’ve joked to colleagues and friends how surprised I am that my employee badge still works.

“Hey. How was your weekend?”

“Great,” I noted.

“Anything new or exciting?”

“Well, my badge worked.”

As M*A*S*H’s “Pressure Points” episode concludes, Sidney reminds Potter that someday he will get too old to be a surgeon. At this moment, the fear of failing has taken precedence. Whether or not that affects him is purely under Potter’s control.

My world is not as nuanced as a surgical room, for it is abundantly clear people are unobservant and aren’t paying that much attention. I come and go, and any notation of a trembling hand can quickly be dismissed to a remote COVID shift work or lack of sleep. When my work starts going downhill, I’ll have to recognize that the time has come to discuss the issue. I know that as time goes on, it’s going to get tougher to do the job. However, fear cannot be the driver of that moment.

As noted, there are other issues besides work that require my attention. However, it’s essential to remember Buddhism 101: fear must never be the driver of anything.

~ Fear does not prevent death. It prevents life. ~

Buddhist Teaching

For most, dying is slow. It’s about the minutia, the ever so quiet, stealthy diminishing ability to perform the ordinary.

Sherri Woodbridge phrased it as a silent thief, slowly robbing one of who they were and been. Through it all, those of us experiencing such dilemmas try to maintain a sense of normalcy. For instance, my left-hand refuses to stop shaking. The shaking doesn’t prevent me from doing anything, just makes everything harder. I can still button my shirt, but not as quickly as a week ago. I can still make a salad some days. I can still sew a button, only if another threads the needle.

It’s all part of change. Everything is impermanent. Of course, we all change. True to form, people change–healthy or otherwise. We fall in love; fall out of love; become addicted, become free. Some choose wisely. Others choose unwisely.

In the song ‘Turn! Turn! Turn!‘ The Byrds highlighted the never-ending cycle.

To everything (turn, turn, turn)

There is a season (turn, turn, turn)

And a time to every purpose, under heaven.

Pete Seeger wrote Turn! Turn! Turn! from Ecclesiastes. Released at the height of the Vietnam war, the song’s plea is for peace and tolerance. The Vietnam war had its season and we are reminded that time, pain, and suffering has a season. Every one of us experiences this never-ending cycle.

The Buddhist compass within me points to impermanence. We arise, change, and disappear. My hand worked fairly great a year ago. Today, not so much. The impermanence of a non-functioning hand is nothing new. Instead of loss, I want to profoundly remember the beauty of what it means to exist. Impermanence is the path, the vehicle, to that appreciation. Over time, in my own soul, nature presents itself and I was able to unlock a deeper meaning of our current challenges.

The loss of hand function would not change who I am in the eyes of another. The frustration rests within in my soul, for my fear is that in my life, my career, may be dependent upon how valuable I am to others. I presume God will let me off the hook of this endless chore of self-improvement, of being that one person recognized by world aa an authority on whatever. I was never an authority. Never will.

Impermanence will allow me to unlock God’s message of humanity. However, that doesn’t mean I won’t miss the ability to zip my pants. Ha. It means I will accept life’s ever-changing cycle, even my own.

No one has an incurable disease until someone tells you they have it. You may have symptoms for weeks, months, or years, but until a doctor sits down with you, looks squarely in the eyes, and says it, you just don’t know about it. Of course all your symptoms could be something else. They could be nothing. Symptoms could be major, could be minor, laughable, painful; all of the above or none of the above.

As mentioned before, I went to the neurologist earlier this year expecting to be expected to be laughed out of the office, similar to years before. However, in a twist of fate, the doctor looked me squarely in the eyes and said, “You have Parkinson’s.”

I never fully processed my initial meeting, never got the chance. No sooner had I received my prognosis, COVID arrived and all hell broke loose – twelve hour a day shifts, bad food, and political leaders refusing to provide any semblance of what they were hired to do, like leadership for one.

There’s always hope that the last neurologist made a mistake and my current neurologist would say. “our bad. Sorry. you are just fine. Go forth and propagate.”  In reality, how many of us really have such luck, as we all die from something. Yet somewhere inside me, there was a little speck of hope that somehow, all this, the Parkinson’s, the tumor, and poor prognosis would be explained away by a bad burrito eaten several years prior. 

No such luck. Within minutes of my telehealth appointment, my neurologist confirmed my plight. 

We had your scans and physical assessment reviewed by another neurologist. And that neurologist confirmed your diagnosis. You have Parkinson’s.”

There was no mention of being years late. There was no, “Sorry dude for being tardy.” None of that. After usual conversation of current symptoms, medicine schedule, and symptom management, we ended on prognosis.

“Basically, we think you will get anywhere from 1 to 3 good years. This will be our ‘golden period.’” 

“Golden Period?’” I thought. Since this has been raging undiagnosed for years, how much of my ‘golden period’ was swallowed by bad burritos? Ah. Maybe I should be grateful. I have more  time remaining than others. Many people experienced diseases which have taken them quickly and way too soon.

I used to have no identifiable issues. And, all the symptoms I do have, l used to be able to successfully mask. That’s no longer the case. Tremors, stiff muscles, and dropping things are common. Nightly hours of insomnia are taxing and l am unsure just how long I can physically work. Lastly, Lord only knows if my tumor has grown or not, for a surgical, post-op follow-up was washed away during COVID’s tsunami.

The ‘golden year(s)?’ What the hell is that? Last March, I was told I would have a couple of good years left. My neurologist is saying if the tumor, or remnants thereof, doesn’t wipe me out by two years, maybe I will get an additional year or two … or … maybe not.

Sigh. Experiences from just a year ago seem so far away. No matter. I remain exhausted and wish for nothing more than one pain-free day.

I spent 9 hours back at war–meaning I spent hours assisting medical clinicians in calibrating equipment that will keep hospital patients alive. I captured and edited the photo that shows the grooves from my N95 Mask.  The grooves etched into my cheeks up to my ears will remain for several hours.

For months clinicians have braved face mask scars while working long hours to treat coronavirus patients. They are the heroes, not me. I just crunch numbers and keep machines alive, that in turn will keep patients alive. Real heroes are the men and women who work the front lines, spending hours triaging, processing, recording, and treating patients. It has been a privilege working side-by-side with them, every day, day-in, day-out.

I returned from Arizona a few days prior to Trump’s Phoenix rally. Phoenix’s mayor says mask requirements won’t be enforced at the Trump rally. Why not?

Well, The Dream City Church, the megachurch that hosted Trump’s re-election campaign rally announces a dreamy COVID-19 cure-all.  Their megachurch installed a new air-purification system. Not just any ol’ air-purification system, but one that will kill 99.9 percent of the Covid-19 coronavirus in the church. I am positive Jesus approved that announcement.

“. . .  when you come into our auditorium, 99 percent of COVID is gone, killed, if it was there in the first place. You can know when you come here, you’ll be safe and protected. Thank God for great technology and thank God for being proactive.”

Praise Jesus. Thank you, God.

The true vision of Christ does not come from an orange-toned figure proselytizing his own righteousness backed by Church idiots. You want to really see the face of God? Go to any emergency room exit and watch clinicians coming out for a breather or leaving. View the face mask scars. See their pain and walk five minutes in the life of a patient dying from a lack of breath.

When the president mocks mask wearers for appearing weak and sees face coverings as a political statement against him, it’s no surprise that some Americans are loudly declining to wear them.

My friends will claim that me trying to shame people into healthier behavior generally will not work. So, is that what this blog post is about? Shaming? No.

We depend on the trust and kindness of others to protect our wellbeing. That is part of being an American, that is why we must wear a face mask. We wear seatbelts, don’t we? Most wear helmets while riding motorcycles, skiing, and skateboarding? Yes? We wear safety harnesses on rollercoasters. Right?

Masks will not deprive anyone of oxygen. They do fog glasses; make the skin itch; produces sweat; appear ‘uncool.’ You have to remember them when walking out the front door (or risk getting nearly all the work and returning home to retrieve it … like me). And, masks constantly remind Americans of what they want to forget: that in spite of everything, the pandemic hasn’t ceded.

For me, it’s about the scars on my face. It’s about love; it’s about genuinely wanting to keep our community safe; about recognizing that face masks will reduce the risk of coronavirus transmission. If you cannot understand that message, then I will see you soon . . . probably during my shift.

End of LifeMedical technology has forgotten death’s role and its importance. We have to be something more than extending time. Walking the halls of many hospitals, I found numerous people who want to share memories, exchange wisdom, and settle relationships, establish legacies, make peace with God, and ensure that those who are left behind will be okay.

They want to end their story on their own term. This role is among life’s most important, for both the dying and those left. I think we find more ways to deny patients this role. Over and over, medicine inflicts deep wounds into the end of life and then stands oblivious to the harm.

The tough issue is to recognize that the small fixes provided by technology do not change the larger picture. Therein, we fail to recognize that fixing specific problems may not fix the patient.

I have 14 years of experience as a healthcare consultant. The real sorrow is that we (family and friends) are unable to significantly impact nature’s course. In the end, we can only accept its education. A patient once highlighted his sorrow.

“I woke up this morning I couldn’t stand up. I couldn’t push the pillow up in the bed; couldn’t use a toothbrush; couldn’t pull my pants or socks on; and it’s hard getting to sit up. But the doctor told me I was doing great.”

Society threw medical technology at the man but failed to understand the patient’s biggest fears? How about concerns? What goals were most important? What trade-offs would the patient be willing to make?

For human beings, life is meaningful because it is a story. A story has a sense of a whole, and its arc is determined by the significant moments, the ones where something happens. A seemingly happy life may be empty. A seemingly difficult life may be devoted to a great cause.

All of us have purposes larger than ourselves. Those are the conversations both the living and dying want to have.

What I found in this experience (even in dealing with my own illness) is that a large part of end of life tasks is simply being present, helping one negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances. For my mother, these are real worries (and to some extent, real terrors). No one conversation can address them all. Arriving at an acceptance of dad’s mortality and a clear understanding of personal limits against the possibilities of medicine can and cannot do is a process, not an epiphany.

In my years of working in healthcare, there is no single way to help people through it. There are some general rules: You sit down. You make time. You’re don’t determine whether they want treatment X versus Y. Simply spending time trying to learn what’s most important to those impacted—so that I can provide information and advice on the approach that gives them their best chance of achieving whatever goal(s) they deem critical. This process requires as much listening as talking.

During this time, I have found that if one is talking more than half of the time, then one is talking too much.

Several days after seeing my father, I requested my mother get approval to see a counselor. “Doesn’t matter if you utilize the service. At least you have access to grief counseling should you choose.”

In her HMO, all counseling require preapproval. Accordingly, we made an appointment with her (and my father’s) primary care physician. Of course, the doctor preapproved the request. And while doing so, he mentioned that he’s personally seen several cases where 85 plus year-olds have recovered quite well from stroke. “Took several years,” he nodded. “But it can happen.”

I agree with him. I too, suppose, one can recover from the type of damage my father suffered. The reality is vastly different for 98% of 85 plus stroke patients. They are told, that with physical therapy, they would learn to walk again and return to their life. Most never will.

Most of us will be confined to wheelchairs and the rigidity of nursing home life. All privacy and control gone. We will awaken per schedule, bathed, and dressed per schedule, eat per schedule, watch television per schedule, and returned to sleep per schedule. The remainder of the last several years will be filled with a succession of roommates, never chosen, and jammed together like an incarcerated rat.

My father’s only crime? Being old. At one time in his life, my father had possibilities. Now he doesn’t. So, rather than thinking of something new and inventive for our elderly, we ban them from society by shuffling them off to brick corridors guarded by keypad locks and cameras.

I think the only way death becomes meaningful is to see oneself as part of something greater. Maybe there is a greater goal. If you do not find the ‘greater good,’ mortality is a horror show. As my body dies, I look at my father and wonder if I can find comfort in companionship, everyday routines, the taste of good food, the warmth of sunlight. Will I ever become less interested in the latest technology and more interested in simply being? It’s in my father’s frailty that I search my inner being and identify a purpose outside myself that makes living feel meaningful and worthwhile.

All journeys have the same ending–at a place nobody wants to go. Peaceful death during one’s sleep and swift catastrophic illnesses are exceptions. For most, death comes only after long medical struggle with an ultimately unstoppable condition—cancer, dementia, Parkinson’s, organ failure, or the accumulating debilities of age.

I still haven’t told my family of my tumor surgery, or the extensive osteoarthritis in my neck, back, knee, feet and hands. I haven’t said anything of my Parkinson’s diagnosis. I haven’t told them I’m dying.

Yet, I look at my father and outwardly admit I don’t want medicine to eat my flesh. I don’t want endless bouts of multiple chemotherapy regimens, last-ditch surgical procedures, experimental therapies, especially when the ultimate outcome is particularly clear. I would rather move on.

Moving on. That is the conversation we need. How can we gracefully move on from a world that refuses to let us go?

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