Archive for June, 2020


On The Road to Kingdom Come: Golden Year(s)

Filed under: Life Lessons, Parkinson's — Leave a comment
June 29, 2020

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.

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Face Masks in a COVID World

Filed under: About Love, Life Lessons — Leave a comment
June 24, 2020

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.

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On The Road To Kingdom Come: Further Conversations

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June 19, 2020

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.

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On The Road To Kingdom Come: Presence

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June 16, 2020

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.

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On The Road To Kingdom Come: Conversations

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June 15, 2020

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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On The Road To Kingdom Come: Welcome to Your Future

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June 13, 2020

Oftentimes we choose badly. We barter on for the best opportunity to continue whatever morsel of time: strength, mental acuity and a life previously known just several weeks before. It is fantasy mind you. Yet we barter it all, even with the risk of a prolonged and terrible death–which is precisely what most will get.

Technically, the operation this old man received was a success. And two weeks later, the 88-year-old man and his 82-year-old wife, sat in the vascular surgeon’s office to hear the prognosis.

“Wow,” said Doctor S. “The stent looks great. The ultrasound shows the artery is wide open.”

The wife smiled. The man grunted.

“We’ll see you in two months.”

The stroke was significant, and he never recovered. In skilled nursing, the old man could barely remember why he was there; he spoke his son’s name when shown a picture of his dog; he neither say his wife’s name nor his son’s; and looked frail.

That old man is my father.

As I tried to explain to my mother, he could not be cured. Deep down, she knew there was not a cure. But admitting as much and assisting him was beyond her capability. Maybe, just maybe, that stent operation would produce a ‘miracle.’

Death, of course, is not a failure. It’s normal. Throughout the last decade, I repeatedly told my mother that modern scientific and medical marvels can significantly alter the course of human life. We can now push the final moment of many diseases farther outward. People can live longer than any time in history. In doing so, we hide the deeper reality, that such significant extensions do not come without cost. Eventually, the end makes itself known, whether it be in the lungs, brain, spine, kidneys, or heart. From there, there is no cure.

We left the doctor’s office this past Thursday knowing we’d never see dad at home again. Instinctively, my father knew he would never see his favorite lap companion (his dog) and spend Sunday’s petting while simultaneously watching Tiger Woods try for another victory. And, I wondered in the past few nights whether my mother’s ‘miracle was more for her or for my father. She always believed dad was the outlier, the guy who’d have a major injury at ninety and by ninety-one, climb the Himalayas’. Giving up meant giving up the life they built. Now, could either endure.

How did America become a world where we either have to go down with the ship or cede complete control of our life to live in a nursing home? Television is filled with young doctors performing endless miracles. We perform medical procedures (like stents), pat ourselves on the back and dish off our elderly into some unknown distant nursing home.

The reality is that most suffer alone. We depend upon nature and chance. Maybe we toss in a few overly quoted scriptures and beg for a miracle. Instead, society knowingly banishes people to Medicare/Medicaid with little options … too poor … too frail … too senile … or too broken down.

I studied my father for one last moment. “Welcome to your future bitch,” life responded.

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