Category: Life Lessons


Letters To God

I haven’t written for several for nearly a week, as I’ve been so busy with work that I couldn’t pen a decent article. That’s partly true, and part fabrication. I ran out of things to say—a little writer’s block. Maybe time off is good for the soul. Then again, one never knows when inspiration will occur.

I captured a snippet of conversation yesterday. “Ugh,” an exasperated patient decried. “I cannot remember what I prayed to God about ten years ago.” Adding a chuckle, “Now, I’m praying for survival.” I’ve encountered similar ironies throughout the past decade: some funny, a few ironic, and several deathbed confessions. There hasn’t been a patient alive who hasn’t wondered where they were ten years ago or what they prayed, including me.

Years ago, I wrote God two letters. Yup. Him (or her). The head honcho. Da’ man. The great guru. If what’s said is true, God being everywhere, then the Almighty remembers what I wrote. That’s good because I don’t.

Pulling my two letters from the safe, one would never know what was written, when they were written, or circumstances under which they were authored. Was it at a good point in life? A celebratory note? Did I request a permanent piece of knowledge? Or, did I seek forgiveness for some event remaining unforgiven? Should we open and review?

Technically speaking, this letter is God’s letter. Even though I never adhered postage and dropped in the mail, this mail is addressed to God. According to the Associated Press, “…letters addressed to God are routed to Jerusalem, Israel and directed to Israel’s postal service. The Israeli postal service then delivers the letters to a unique address that hasn’t changed in thousands of years, the Western Wall, also known as the Wailing Wall.” Would the Almighty be offended if I opened my letter today and reread it?

Writing a letter to God is not as imposing as it sounds. When I wrote my notes, I heard no internal chorus of objections. “What am I supposed to say?” “I don’t like to write.” “I’ll sound stupid.” “What do we do with it?”

Author Janet Levy said, “I promise you, God won’t laugh!” When you write a letter to God, you are walking right past negative pride, self-doubt, fear, and reservation. You’re allowed to pour out your heart as one would to a close friend. You are permitted to unload problems, worry, fear, disappointment, grudges, and heartbreak. Place your hopes and dreams toward God’s loving attention.

Whatever the reason, I wrote two letters to God. Putting curiosity aside, I will not open and revisit them. Come Monday; I will place postage (about $1.50) and write “To God, Jerusalem.” I should have done it years ago. And, being as sick as I am, I should write again.

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.

On the way to work, a small simple yard sign caught my attention. ‘Don’t Give Up.’ My first snarky reaction was, “Why not? Why shouldn’t I give up? I’ve been through all this crap and am likely to pass rather painfully, so why shouldn’t I?” The fact that this sign was posted in the front lawn of a home estimated to be in the millions didn’t help.

If one made millions from investments, is it fair to proclamate onto others who haven’t to not surrender? Free speech allows an author to erect such messages, but we gain zero context. Maybe that author’s cancer went into remission. So, don’t give up. Then again, what if the resident lost his business during COVID and is saying, “Don’t give up, I’m not.” Or, I beat COVID. I got sick, nearly died, but recovered. Don’t give up. We can celebrate such victories, but the author had not taken time to understand the reader’s pain, me.

Rollen Fredrick Stewart (a.k.a. The Rainbow Man) was known for wearing a rainbow-colored afro-style wig and, later, holding up signs reading “John 3:16” at sporting events. Known as a born-again Christian, he was determined to get the message out that whoever believed in Jesus would not perish. Seeing him in the background a golfer, nothing indicated he knew me or my life’s experiences. No one in my home, or that I knew, ever said “John’s got it down.” I never watched a sports program waiting for Rollen’s message. He never spoke to me and it’s doubtful such messages mean anything for the average everyday ‘Joe.’

Just as ‘May God Bless You’ and ‘Jesus Saves’ litter highway barns, were not specific to me. Prior to March 2019, I neither would have thought ‘Don’t Give Up’ as a divine message targeted solely for me, nor would I ever believe the author thought of me. God probably never told the author that “In July 2020, the Unknown Buddhist will pass your home. Post a yard sign saying ‘Don’t Give Up.’ He’ll know it’s from Me.” Nor do I believe God was messaging when I drove past the ‘Hell is Real’ billboard on Ohio’s I-71 either. Projecting such views quickly fades from the minds of those whizzing by during a daily commute.

Just as television viewers zoom through commercials, travelers quickly dismiss billboard proclamations. They have no recall ability. Do pithy billboard messages buoy one’s mind? Probably not. Walk out of a room during a radio broadcast and ads fail to engage. If the communication were real-if that communication ever came from God- it would never fade.

God’s communication fundamentally changes life. For Churchill, it was “We shall never surrender.” Roosevelt experienced similar awe when speaking “The only thing we have to fear is fear itself” during his inaugural address during the Great Depression. Real communication challenges the soul, the very ideas about who are in the world, and provides the intellectual confidence to achieve great accomplishments.

Jesus said, “The Kingdom is like a mustard seed which a man sowed in his field. Mustard is smaller than any other seed but let it grow and it becomes bigger than any garden plant; it is like a tree, big enough for the birds to come and nest among its branches.” 

I envision the mustard seed fully grown, strong enough to bear the nests of birds. I sit before the full-grown tree and communicate with it. We talk about smallness in a universe so large. We discuss discouragement; risk-taking; change; fruitfulness; being of service; and finally, the power of God in life. I then kneel before God and tell him what the mustard seed taught. And I ask if He will teach me as well.

That, my friends, is the power of real communication.

Someone told me Roman soldiers invented craps using knuckle-bones of a pig as dice and their armor shields as a table. Others said the game originated from an Arabic dice game called Al Dar, which means “dice” in Arabic. The most commonly accepted version of the game’s creation is that it was invented by Sir William of Tyre in 1125 during the Crusades and named after a castle called “Asart” or “Hazarth.” No matter; what matters is the look in your clinician’s eye saying, “Craps.”

Fifteen months ago, my doctor said they would do everything possible. Today, craps. “There’s not much more we can do. We can replace your knee, but that will not repair arthritis in your feet, shoulder, elbow, wrist, or fingers in both hands. We could perform a hell of a lot of surgery, but you would not feel a huge benefit.” Gently grabbing the back of my neck, “Your back is a mess—severe osteoarthritis in your neck, and the tumor. There’s the Parkinson’s, and a lump at the base of the finger,” she said while finger outlined the lump. “My guess is that this lump is not cancerous, but we’ll require Xrays.”

Her words required no steeping. “Craps,” I said.

Shifting across from me, “I will do what you want, but I suggest the best approach is to keep you moving and pain management.” A deep exhale, “Keep you going until…” she faded.

“Craps,” I repeated.

“Craps,” she affirmed. “I can refer you to a pain specialist. Maybe neurology has something up their sle…”

“No,” I interrupted. “Anything more invasive may prolong my life, but it’s unlikely to save it.” Gently laying my hand over her pen, she looked up, “Doc. You’ve done all I can ask. It just is. It’s life,” I affirmed.

I already knew the progression. I knew this moment inched into my future every day. With all the experts I’ve sat across from, the hospital shift work, and camaraderie, I couldn’t place the ultimate responsibility for my care on one individual: my physician. Instead, it’s how you guide patients through the last month (or year(s)) is essential.

Doctors must be sure to take the time to remind their terminally ill patients that even though a cure might be out of the question, patient health is still relevant. I gave my physician affirmation that she performed exemplary. I know my diagnosis is terrible. And surely, I still have to figure out precisely what flavor of bad it is. But the real message from God is, ‘I only have so much time to do the things I want to do.’

In The Shawshank Redemption, the fictional character Andy Dufresne said, “I guess it comes down to a simple choice, really. Get busy living or get busy dying.” Time to find out the best way I can live. “[Red] Get busy living or get busy dying. That is goddamn right.” No time for craps.

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.

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