Tag Archive: Parkinson’s


A week has phased since my last blog post. I could have generated a few excuses, but none fit. I awoke Thursday morning stiff. Friday through Saturday, my neck felt like a volcano near eruption. I couldn’t hold a thing, had a hard time moving, and every muscle in my body regurgitated at the thought of moving, anything. Staying awake was difficult. Awake one moment, drowsy the next, then awake again.

Sleeping provided respite. I slept ten hours from Friday night through Saturday morning. Saturday to Sunday, thirteen hours. I felt comfortable enough not to use the restroom, though I did. When the act of laying down caused more grief than getting up, I nudged to the bed’s edge and stood. Shuffling over the cold hardwood floor provided momentary relief as I stood under a hot shower and wondered, “What the f***?”

I debated whether the Parkinson’s or osteoarthritis was the cause. Rigidity is seen in many Parkinson’s patients. Though not entirely understood, researchers believe stiffness is associated with the reduction of dopamine. If that is the case, then my Carbidopa-Levodopa failed and I should demand a refund. However, osteoarthritis pain can occur at either rest or night. In my case, nearly every part of my body was on fire, and more than once, I wished a ‘water scooper’ (aircraft that drops water on a forest fire) would drown me in Aquafina (purified water). Having inside knowledge of medical science, I know osteoarthritis usually does not affect the wrists, elbows, or shoulders. In the end, neither argument won.

Like many suffering in major illness, I am left with daily challenges. Whatever body part that’s inflamed today may not be tomorrow. Others experience it differently. Buddhists believe suffering is part of life. Pain is expected. Therefore, if a person experiences pain calmly, he can attain higher states of being without becoming emotionally distressed. At 2:26 AM, not sure I can buy Into that argument while every limb screams, “Holy Mary, Mother of God.” A pancreatic cancer patient once described abdominal and back pain, “I had woken up in the middle of the night screaming because of the pain, terrified to move because each time I did, it hurt more. It felt as if someone was stabbing my lung over and over again.” Such stories are not uncommon, and it’s hard to neatly fit spirituality when nature Is gnawing upon the body.

Even though I didn’t complain, the prospect of living under this type of pain is hard to fathom. I know pain is part of our human living experience. There is no way to escape and we often feel victimized. Being in pain also makes one anticipate further discomfort in the future and reminds us how finite our life is and of our fragility. Therefore, I chose my pain to be ‘teacher.’

My educator will help me to prepare for the pain that might be present as I die. Given a chance, I will try to explore whatever lessons that bring my life into greater focus and meaning, teaching me strength, patience, and giving me compassion and humility. Of course, I will take whatever medication is prescribed. Yet, maybe this pain level will allow me insights to endure, make me more mindful, and see the road ahead. Like others, I might even view it as a gift, like many of those dying realized their pain and suffering made their relationships more valuable and helped them reorder priorities.

There are numerous spiritual and psychological approaches to pain management. Medications make it possible to manage pain without diminishing awareness and provide one time to strengthen practice, be with others, and not have pain or be of an unclear mind. In such ways, I often say to myself: “I am in pain, but I am not suffering.” I say this to remind myself not to amplify the pain by building Some grand story. Rather, I can become ‘friend’ to my pain. Reach out to it. See what it needs. I may not know what to do, but the pain might. I can give it latitude, and try to see what it may teach. Therefore, I can use the experience of suffering to develop compassion for the lives of others who have pain like me.

Parkinson’s and constipation are brethren. These brethren dance hand-in-hand, just like that couple’s wedding you attended, knowing all the while of the painful divorce forthcoming. In theory, not all Parkinson’s victims experience constipation. I often reflect on this medical tidbit while sitting on the toilet as my body tries to crap the life out of me. Over the months, I’ve experienced dark blood, red blood, little blood, and no blood. I never thought of dancing after a bowel movement, but do when experiencing any movement without blood. My doctor grimaces at my descriptions and reverts to recounting protracted dissertation learned from some medical textbook seventeen years prior.

Common in Parkinson’s, constipation results from the slowness of movement (bradykinesia) and muscle rigidity. My physician noted 65% of Parkinson’s patients get this condition. “Not me,” I retorted. “I have it 100%.” This bit of levity goes unnoticed as she regurgitates a litany of god awful suggestions guaranteed to improve my situation. Recommendations included a dietician to advise on diet and fluids, a physiotherapist to help with abdominal exercises for passing stools, a speech therapist for any swallowing problems, and an occupational therapist who can suggest ways to overcome eating and drinking difficulties.
I’ve neither experienced any problem consuming kettle chips nor beer. Both go down easy. I am unsold on a physiotherapist, as I can barely walk 60 yards without extreme pain. My speech appears solid, “Hey, bartender? Draw me another brew.” I could swallow a laxative, but my only real experience with laxatives occurred in the military watching Calvin (whom we loathed) shit all night after consuming ninety percent of a brownie pan laced with Exlax. Therefore, I consulted my help desk: Google. When in doubt, ‘Google.’

Google tips were undesirable. First, relax. When on the toilet, it’s essential to relax. Don’t become preoccupied with your movement’s process. However, it’s hard not to be preoccupied when you can’t shit. Not sure about anyone else, but at 1:00 AM, sitting on the toilet, one gets somewhat preoccupied. Secondly, avoid medicines such as narcotic pain relievers, antidepressants, aluminum-containing antacids, blood pressure medications, drugs for Parkinson’s disease, and iron supplements can also cause problems. (No Sh**!) Avoiding them would kill me. The only medicine I’m not ingesting is antidepressants.

I wish I could have seen the clinician’s face upon reading my 140 character (or less) text via the healthcare app. “Request antidepressant. Thus, I won’t feel depressed about not being able to sh**.” I received a one-word response, “No.” They were kind to include a ‘cut and paste’ diatribe on “… drinking at least four to six glasses of fluids a day. Water and fruit juices are best for preventing constipation.” I wanted to reply, “What about beer? Beer has water?” However, I remember Christ stipulating not to put the lord to the test and turned to a better path.

I contacted a former Buddhist teacher in San Francisco. After the usual pleasantries, I asked about her natural remedies to treat constipation. “Buddha was considered a great physician and psychotherapist due to his compassion and wisdom,” she reflected, seemingly lost in the moment. “Therefore, you must know the suffering, abandon the cause, obtain cessation, and follow the path.” (Goddammit. I just need to sh**.)

In my physician’s waiting room, someone highlighted Anthony de Mello. It was placed on old Gideon’s Bible, you know the book all suddenly searched before receiving the “you’re pretty screwed” diagnosis. Highlighted in yellow, de Mello said, “Most of us suffer in the spiritual life because we do not accept ourselves. Maybe this is the biggest obstacle to the spiritual life. We cannot see our beauty or our power unless we see it against the backdrop of god’s loving us.” I’ve never considered my 1:00 AM toilet sessions as a failure to accept myself. Should I accept the fact that I can shit, can’t shit, or could shit? Certainly, most feel more power post-movement as opposed to pre-movement. Ugh … this is insufferable.

I decided to return to drinking, which eliminates suffering (albeit temporarily). “Hey, bartender. Draw another brew. I’ll be right back … Have to hit the room.” And, “Can I get an order of kettle chips?”

On an early weekend morning, I rolled over to the edge of the bed and realized I couldn’t get up. (At least initially I couldn’t get up.) “F●●●,” my body groaned. I reached for my cane, pulled myself upright, steadied on the bed’s edge.” I am getting old. Quickly. There’s a sobering likelihood that I will be one of the seven 65-year-olds who will be disabled before death. I’m not looking forward to it, but I find myself continually negotiating with ‘Father Time’ for a snippet’s reprieve.

Nora Ephron wrote, “What I believe … is that at a certain point in life, whether or not you’ve been diagnosed with an illness, you enter into a conscious, ongoing … negotiation between the two … This negotiation often includes decisions as trivial as whether to eat the second piece of pie as important as whether to have medical treatment that may or may not prolong your life.” I’m at a point where second helpings are intolerable. I know it. My body knows it. Call it intuition. Call it the ‘sixth sense.’ Call it, ‘Joe.’ Call it whimsical. Doesn’t matter. Most dying can name the time, and date life shifted.

July 15th, my body shifted. My back, stomach, intestines, and right hip awoke pissed off, as if to say, “We’re in charge, Obiwan. And we decided to drive off that cliff in the near horizon.” My former sister-in-law described a similar feeling. She awoke one morning, feeling something wasn’t right. “It was an ominous feeling,’ she casually noted during an afternoon lunch. A little over a year later, cancer claimed her life. Therefore, any notion that “70 is the new 50” never occurred to me, as I never expected to get to 70. My physician will test whether ‘60’ is my never ‘70.’

Several tests, including complete blood count and tumor marker, have been ordered. I won’t stumble into the results. I won’t get to read it online before hearing from my doctor. Post-results, I will hit ‘pause’ to wait and see what happens. I’ll internalize everything until I know just how true this ‘intuition’ (my decline) turns out, for I do not want to claim to be a victim. 

I never thought that anyone would be sorting through my life history 30 years ago. And at this point, there’s no optional editing that can be performed. History is written. I know how the scales of justice both God and man weigh each detail on trial. Afterward, everyone alive will understand I was no victim. It’s unavoidable. Accept it and move on. 

Moving forward is an interesting concept. Buddhists believe most illnesses are primarily karma’s negative energy-consuming the sufferer. If so, I have acquired a s●●●load of it. Such karma stems from greed, anger, and stupidity, including eating pizza, beer, and onion rings. I suppose a lot of cancer is avoidable. Not smoking reduces lung cancer significantly. Avoiding red meat reduces other forms of cancer. Protection from sun exposure reduces skin cancer. For me, cancer is … cancer. Just is. It’s part of life (at least mine anyway). I will take this situation like others and make it part of the path. The path is exclusive. It’s not filled with only right situations, but any situation. Fortunately, I have time to prepare. 

When told of the odds of my survival (a couple of good years), I instructed my physicians I was not interested in hearing about weird drug trials, new medications, or life-saving operations. What good would it do me? I decided to live until death. I refuse to get waylaid by the kind of emotional baggage that frequently accompanies others. Life is short. Admit your wrongs, make amends when you can, and live until death.

After learning being diagnosed with “high-functioning” autism, writer Helen Hoang never told her mother. “I hadn’t really known how to tell her. More than that, I’d feared her reaction, so I’d simply avoided the topic around her altogether.” When I was diagnosed with a tumor last year and Parkinson’s this year, only five knew of my tumor, and only three (my doctor, my case manager, and a friend) knew of the Parkinson’s. Only three knew both, those being my doctor, my case manager, and a friend. Avoidance will either be my enemy or friend.

My doctor has routinely asked why I haven’t told any relatives. Chagdud Tulku Rinpoche said, “Death and dying is a subject that evokes such deep and disturbing emotions that we usually try to live in denial of death.” My brother is not particularly adept at dealing with it. And to be fair, most of us aren’t. Dealing with a terminal illness is hard enough without family instructing me to suck it up, swallow some Vitamin C, or work it out. Such a pronouncement would change every interaction; none of them are genuine. When I told my brother about the tumor, he was driving on the highway after flying lessons. Rather than waiting for a more suitable time, he listened to my diagnosis, demanded a second and third opinion, complete several other medical tests, and get back to him. He never called again, even when the date of the surgery came and went. The process of hiding or masking fits better in America’s society.

My military call-sign was ‘Chameleon,’ meaning I could almost on cue, adapt to any situation. I’m very good at it. I learned to blend as a kid because I saw people treated me, ‘different,’ ‘not socially adept,’ etc. Underneath that easygoing facade, was a soul struggling and found the minutiae of social interaction draining. The military changed that and trained me to adapt. It’s an acquired skill I continue to leverage and flawlessly execute.

I’ll admit, for months, I have considered coming clean. I almost came clean to my boss at work about the Parkinson’s diagnosis, but I know its impact on my career, for he was the second person informed of the tumor. Beyond that, I don’t want to have my illness define me, turning every conversation into a series of “how are you?” and every email into “here’s the latest cure you must investigate.” Nor do I want someone telling me to suck it up. Such conversations would provide neither meaning nor purpose. I aim to find out what the truth is for me and to live without vulnerability.

Vulnerability mustn’t be turned against me. It’s bad enough to battle a tumor Parkinson’s at the same time. I am unsure if I can fend off youth’s naysayers, demanding I fit into their mold. I don’t want to be the guy who seeks every nuanced therapy that provides marginal to no benefit. I want to live but live under my control, not under another’s umbrella.

Before the end of the year, I will tell my family. In subsequent days, conversations will become harder, and silences will grow. Relatives living in Chicago, Wisconsin, Florida, and elsewhere will email and either express regret or outrage at being uninformed. The ultimate question for every conversation will be, “Why?” And, it’s a fair question.

I have read many blogs where readers posed such philosophical questions of determining the proper moment to inform others of their terminal illness. Blogger Molly Kochan stated, “I have chosen to navigate this journey privately, with a handful of supportive friends and family. It was important to me to not be seen as a “patient” or as cancer.” I do wonder if my selfishness would impact others to such a degree that those affected would never move on. And so I say, “Yes. Eventually, they would find it within themselves to move on.” Therefore, I hope everyone focuses not on my final days (or year(s)), but rather upon leading the kind of life that will impact others. And should that be the result, then I would be truly inspired.

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.

In the Elizabeth Kubler-Ross five stages of death, Depression is fourth. In this stage, one is likely to feel like withdrawing from life, feel numb, live in a fog, and not want to get out of bed. That wasn’t me. As subtle as it was, my stage was able to poke hole my otherwise stable façade.

To the normal reader, one may look at the event and say, “Why the fuss?” However, to all-knowing inner soul, it was “Reality bites.” At 4:38 PM, standing over a cutting board with knife in hand, ready to chop a white onion, my hand shook so bad I nearly couldn’t perform the task.  I looked like a construction worker using a jack hammer to cut vegetables.

Stage four started a few days ago with internal tremors in the legs and bradykinesia, a slowness of movement or impaired ability to move as commanded (like chopping vegetables. Frustrating, because I’ve spent a lot time making everything appear “normal.” Yet, I placed my knife on the kitchen counter, sat and in a chair and realized that I don’t know what normal is.

I had only a few weeks post-diagnosis before the Coronavirus struck hard and either forced everyone to place life on hold or work like crazy. Being in the later, I’ve kind of buried the deepest feelings. It was the first time I experienced any anxiety. In the several hours thereafter, I am beginning to understand something larger, bigger, and more determined is about to happen to me.

What if the façade fails and I must out myself? There are other things that take precedence over me. Certainly, my father’s stroke and potential death is significant. My mother’s care is critical, not to mention the subsequent estate settlement. Personally, I’ve had a tumor, multiple sclerosis, osteoarthritis, and now Parkinson’s.

As I sat looking out the window, I realized how tired I am. Tired of being sick. Tired of being in pain. Just plain tired. I suppose the fact that one’s body is trying to either make you miserable or kill you will, in fact, make one really depressed. I haven’t thought about mortality in any sense. I mean I have thought about it, maybe I haven’t processed it. Then again, we’ve all gone through some tough things–many a lot worse than I.

Outside of this moment in my life, I’ve been lucky. I’ve traveled well, seen places most will never see, had many a great love, and experienced God first hand. From a Buddhist perspective, what more could I ask? Sure, my hands and legs are beginning to fail, but I can write. And write I will.

As death approaches, Buddhists are taught to think about their holy writings. Focusing upon the Buddha’s teachings is supposed to bring good luck to a new existence. I will not focus upon superficial images of happiness, material and sensual pleasures, or technological innovation. At this point of my life, I am focusing upon whatever love available. I believe only true love will transcend death.

Thus, for a person who has awareness of death, every moment becomes a lesson in death and a lesson of love. Every moment should be viewed as being infinitely precious, and we should make the utmost effort to use our time to the best advantage.

Upon waking, I marvel at how my back feels, how natural the rhythm of the first few hours are, and how naively I think I could do it forever. Such feelings last an hour, maybe two. After that, I quickly relearn the cumulative effects from an early February tumor removal and Parkinson’s diagnosis. 

In the cool of the pre-sunrise morning, when I’ve had a good night’s sleep, all seems well. As the day wears on, weariness smolders the day, and that beautiful early morning feeling evaporates. Life becomes weightier, and every step begins to take its toll. My neck and back hurt, I fiddle with chairs aiming for a stable fit, and comfortable position. Yet no matter how much I tinker, I remain uncomfortable for the day.

Most cancer follow-up appointments remain canceled. As the W.H.O. noted, many patients with cancer are struggling to receive treatment due to hospitals canceling or delaying surgeries and other procedures. This includes those patients who are otherwise healthy and have curable diseases that require the timely implementation of surgery, chemotherapy, or radiation. Contracting COVID while undergoing treatment is too high a risk as opposed to cancer slowly eating away your life, one day at a time.

I have the utmost respect for my medical team. When I’ve texted (usually about medication), they’ve responded and provided care. However, it seems strange to be standing in the cancer wing of the hospital, updating their applications, with full knowledge that I cannot gain access to very services that can verify my prognosis. No matter how much I understand Coronavirus’s impact, I feel caught in a Rod Sterling “Twilight Zone” episode.

Walking the hallways, working from home, or looking out to the lakefront, I notice how the world has stopped. Driving through the subdivisions, I note, “… even in this place where time stands still; it seems like everything is moving. Including me (Heinrich Harrer).”

The ‘new normal’ is strange: things once marking the days—commuting to work, meetings, projects, and having a drink with coworkers, vanished. Time appears flat, seamless, without structure.

Before COVID, I needed to believe each day would get better. I needed to feel my doctors knew my tumor would abate, and that if I gave everything to treatment, I would be delivered more life opportunities, something I fully don’t deserve. Such needs are gone. I am too comfortable with the sharp edges of my reality. I accept my tumor, my back, and Parkinson’s will have its inevitable conclusion. 

On these days, when it all stands still, I no longer feel the need for bravado. I give up my self-delusion. I hesitantly embrace the knowledge that no matter how many stairs I climb or ellipses I travel, no matter how hard I push my heart or how much weight I lift, neither heart nor head will be healthy enough to pump meaning into COVID.

And in these ‘still’ moments, I reclaimed missed opportunities. I love strangers with an intensity I never knew. On this day in mid-May, as the night begins, I walk and find silent streets: no restaurant lines, no children riding bicycles, no couples strolling in the park. It had taken the combined will of thousands to love one another so much that time stopped. Millions ultimately accepted the immense challenge and silenced life, their life. 

I feel so grateful for the sacrifice. And for this moment, I am so profoundly proud of everyone that nothing more critical exists for me … neither cancer nor a lousy back.

Watching Chris Cuomo last night work through his Coronavirus diagnosis and displaying his chest x-ray was amazing. In some ways, Cuomo became a folk hero of sorts, battling adversity to keep the public informed and outlining his self-quarantine modeling. However well-intentioned he was, Cuomo’s bravado perpetuates an ongoing problem: to stay employed, you must work through illness.

My company issued an internal employee policy that provides an additional amount of time off for COVID-19 recovery. All that’s required is the willingness to ‘self-disclose.’ They created a self-disclosure button in the HR portal. It’s easy. Click that ‘self-reporting’ button, enter the information, and submit. 

In my world, any 60-year-old would likely not choose to self-report. For those in my age bracket, self-reporting It’s just another opportunity to eviscerate yourself to the sidelines, an exit to unemployment.

My Parkinson’s was diagnosed 45 days ago. Feels like a 1,000. I spent the first two weeks in a fog-just reading anything possible about Parkinson’s. Not usually a movie star biography reader, I read every word of Michael J. Fox’s autobiography in two days. However, outside of my doctor and case manager, I haven’t told a soul.

I experienced two weeks of reflection, then Coronavirus exploded. It feels 9,000 miles an hour since. Good or bad, there’s been no time to think about Parkinson’s. Neither have I thought of my normal daily position, the pain of dealing with loss, nor coping with demanding people who filter in and out of everyday life. What living with Parkinson’s has allowed me to d is notice something important. Just like pre-COVID, some days are good, some days are bad. Some days, the tremors were noticeable. Other days, it wasn’t. For four days, no Parkinson’s symptoms. Today? Bam. Back with a vengeance. No matter what I did, tremors rumbled. 

Like Tom Hanks’ character in Cast Away talking to Wilson (a volleyball), I sometimes find myself talking to Parkinson’s as if it were real.

God damn it. Not today. I have too much shit going on to deal with you.”

I am unfamiliar with this new world. I am lost. So, I read of a blogger who suggested I find celebrities living with Parkinson’s. My first search found Michael J. Fox, Muhammad Ali, Janet Reno, Charles Schulz, Linda Ronstadt, Johnny Isakson, and Billy Graham. Not that their stories aren’t compelling, it’s just that only three remain alive.

Another interesting thought about post-Parkinson’s diagnosis is cadence. The rhythm of 5 AM, 1 PM, and 9 PM Carbidopa/Levodopa ensures interrupted sleep. And even then, I sometimes wake at 2:00 AM, stiff. Afterwhich, I stumble to the recliner with the best intention of meditating, only to promptly fall asleep. I often wake exhausted.

Unlike Chris Cuomo, I will not publicly announce either Parkinson’s or COVID. I will never click that ‘self-report’ button. Sure, it’s probably the right thing to do, for both coworkers and me. But if I were working from home (being a member of the 55+ club), I’d likely mark my door with blood, keep working remote, and hope for a passover by the God of COVID.

The impulse to work through an illness is crushing, especially now, when workers with truly essential jobs face pressure to do likewise. In my career, I’ve never received a message saying, ‘You’re so important, we have to make sure you take care of yourself and your loved ones.’ Not once. Rather, my career was filled the mantra that devotion to retaining a job, meant personal sacrifice, for the workplace was the ultimate value.

As Joanna Wiess noted, “The impulse to prove an uncommon work ethic isn’t limited to pandemics. It’s on display when Elon Musk brags about working 120 hours a week, or when a high-powered female executive goes back to work within days or weeks of delivering a baby.

I don’t like it. But’s that’s where America is. 

It’s not some mythical inner spirit that helps me overcome an encroaching disease. It’s neither a Buddhist nor Christian philosophy. There’s not even a personal mission to the greater glory. For me, it’s the ‘stupid philosophy’ that allows me to retain employment. With over 10 million unemployment claims over the past several weeks, that’s important.

I don’t like it. I don’t want to have to work through the pain, but that’s where many of us are.

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