Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

But What About…?


I first experienced this “illness” back in 1989, long before it had a name.  The concept, someone is dealing with a crisis or tragedy, but someone else feels slighted or jealous about the attention that other person is receiving, whether it be good or bad, did not matter.  It was always, “what about me?”

As I dealt with my cancer, I had several co-workers who felt slighted, that I might be receiving favors from management because of my situation.  To be honest, I have no ideas what those favors would have been, but I know that I heard the “jealousy.”  Yes, that is what we called “whataboutism” back then, “jealousy.”  The difficult thing to comprehend about “whataboutism” in my case with cancer, I could not grasp why people would be jealous of what I was going through, or they just felt I had to have been pitied by management which meant I might be getting special attention that they did not get.  I really have no idea, because no one ever came up to me personally.  I had only heard about this situation through the grapevine.

This was not the first time though that I had experienced “whataboutism.”  In 2008, upon learning I was going to die without heart surgery, I was going to experience this phenomenon for the second time.  I won’t go into the details of the surgery, other than to say, MY BREAST BONE WAS BROKEN OPEN!!!!  So, everyone is on the same page, this is a major trauma to the body, not just the surgery itself.

While the initial and surprising concern by my co-workers I feel was sincere, the shock that I was only 42 years old and had to have a triple bypass, that concern soon faded when I arrived home a week later, and spotted going for a walk, part of my recovery, and just so happened to take every ounce of energy and strength I had just to even walk one hundred yards.

Word had spread at work that I “looked great!” and why wasn’t I back at work.  Again, major heart surgery, and my breast bone was cracked in half, now wired together as this broken bone healed.  But it did not stop there.  When I finally returned to work, my doctor ordered physical restriction accommodations to be made, in accordance with the American With Disabilities Act, as I continued my recovery.  I had not been at work in over three months, had lost all of my strength, and needed time to readjust.  And then the war cries came out.

“THIS IS NOT FAIR!  WHY DO I HAVE TO DO MORE THAN HIM AND GET PAID THE SAME JUST BECAUSE HE HAD SURGERY?”  HE ISN’T DOING THE SAME AMOUNT OF WORK AS ME!  HE ISN’T WORKING ALL OF THE ASSIGNMENTS THAT I HAVE TO AND IS GETTING PAID THE SAME!”  The list of whines of “whataboutism” was long enough to run out of types of cheeses to accompany.

But that is what “whataboutism” is.  It is about being slighted because someone cannot reap the perceived benefits that is believed someone else is getting, even if the circumstances are critical or tragic.  There is that jealousy to not be able to enjoy the benefits given to someone who might be struggling, just because they are not struggling themself.

Today, “whataboutism” is as common as milk in a dairy.  Every day you can hear someone scream out, “what about me?  What about this other time?  Why is this issue different?”  Our country’s citizens suffer from major ADHD, unable to focus on one crisis at a time, often unable to see any need or commonality of situations that they might actually be complaining about.  But just because the current issue is not their own issue, “what about me?”

One of the more common times “whataboutism” comes out of course is politics.  And I am not going to get into that, because that cycle is one that does not appear to have any end.  As political parties trade back and forth in their “whataboutism,” each time a party changes power, there is not interest in saying, “this is when it ends.”  They just keep going like the Energizer Bunny.

Heart-breakingly, it is during times like we have been dealing with for the last two months, a major pandemic, and now a super-heightened racial awareness to do a public lynching of an African American, the cries of “whataboutism” are endless and unrelenting.  But these cries go beyond a jealousy for the most part.  Many times these shouts are more about distraction, realizing that if you can distract enough from the crisis at hand, then just like all of the other times, the problem will go away.

We are witnessing that right now.

What everyone witness over ten days ago, was horrendous.  Unless you are a racist, the brutal lynching of George Floyd has given us all an awakening to a struggle that continues to knee cap  many of our citizens, and just because of the color of their skin.  And sure, it is understandable to ask why did we not respond this way when unarmed Walter Scott was shot in the back by the police, or Eric Garner was choked out and killed by the police.  Why is this situation any different than the hundreds of others.  “Whataboutism.”  The question is, why should it matter?  We keep asking how many more.  We keep expressing outrage.  We keep protesting.  But it continues to happen.  That means what we are doing is not working.  But the cry “what about” is the distraction that makes the issue go away for the ones that do not want to admit that there is a problem.

And do not even get me started on those who really want to dismiss the awareness we are experiencing from people of all colors, not just here in the United States, but now all over the world.  They choose to want to label any bad deeds this human being, a father of a small child may or may not have had.  Of course they say, “it does not make it right that he was killed that way, but he was a bad dude regardless, so maybe…”  You can fill it in from there the shit that comes next.

Do you know how to tell if you suffer from “whataboutism?”  Watch the video of George Floyd being murdered, the entire thing, even once.  If you have to turn your head because you just cannot watch, or it makes you feel that uncomfortable that when you see people protesting for the rights of a certain part of our population, and complain about “inconveniences” you are dealing with because of such, chances are pretty good, you may have a case of “whataboutism.”

My late brother-in-law died from Lour Gehrig’s Disease (ALS).  As he was struggling with the physical issues of the disease, one of the major issues being the ability to swallow, he would often choke as he tried to swallow even his own saliva, let alone actual food.  While he was experiencing this, I was struggling with my own swallowing issue from the radiation damage to my esophagus caused by my cancer treatments.  We used to joke about who would choke out first.   But instead of saying “what about me,” I felt bad.  My condition was not likely to be fatal, as uncomfortable as it was, and I felt bad mentioning it, even though the struggle could be seen on my face.  My brother-in-law said to me, “we have two different circumstances.  Just because our ends will be different, does not make your issue any less relevant to deal with.”

I miss Mike a lot.  It was wisdom like that, that I have carried through my life.  Yes, my issues are real.  They are not any less important.  But I do not need to hijack someone else’s situation for my cause.

“Paul’s Heart” is about advocating for health and parenting.  I seem to be spending a lot of time now on dealing with race issues.  Sure, I have my reasons, obviously.  But even without my daughters, standing up for what is right is who I am.  It is what I was taught.  And as I pointed out the other day, silence is complicitness.  You are racist or anti-racist but you cannot be a “not a racist.”

It is time to stop screaming “what about me?” or “what about the other times?”  We have two major crisis going on, and the more we distract ourselves with “whataboutisms,” we are just going to continue to have to deal with these issues and more.  It is sad to me that we have learned nothing from 1992 when it comes to police brutality and race relations.  That was 30 years ago.  Oops.  See what I mean.  What about 1992?

Let’s fix this now.  For the sake of everyone.  We are better than that.

Like Asthma But Different


I noticed something recently with my being confined, socially distanced.  Having nowhere to go or travel to, for 98% of my day, I stay indoors, in the air conditioning in Florida.  While staying cool, it is creating an issue with one of the late side effects that I deal with from my cancer treatments thirty years ago.  I have a condition called “restrictive lung disease” as a result of radiation therapy and chemotherapy.

I need to state up front, the picture above, a healthy set of lungs, is not mine.  And to be clear, the following pictures of lungs that I will show are not mine either.  But they will illustrate my concerns.

This x-ray shows an image that could be mine, but is not.  I see chest wires which indicates the patient likely had heart surgery, and I see EKG wires I believe.  In any case, this image shows damage to the lungs as a result of radiation damage.  How much radiation do you have to receive to have this damage?  I honestly do not know.  How much did I receive?  4000 grays of radiation.  And if you know anything about radiation, such as techs or nuclear power plant workers, you know this is not good.

When I first discovered that I was struggling to breathe, I underwent a series of pulmonary function testing, as well as other imaging studies.  I was found to have several unidentified spots on my lungs (that are being watched if they change over to cancer), and the lower left lobe described as “dead”.  My lung capacity measures 76%.

So what does this mean?  Well, if you cup your hands over your mouth and nose tightly, and either try to talk or do some sort of activity, you will find it has become difficult.  That is sort of what it feels like.  But it gets more complicated.  In extreme weather conditions, hot and humid, extreme cold, or cool wind, it causes my lungs to restrict even further.  The best way to describe this feeling, is like an extreme asthma attack.  The only difference, an inhaler does not relieve it.

When I get hit with these attacks, regardless of the cause, the only way that I get relief, is to sit somewhere quiet and more temperature comfortable, close my eyes, and just concentrate on my breathing.  How long the exposure determines the length of the recovery.  I have been able to do it in fifteen minutes, and it has taken me an hour in others.

I live in one of the more hot and humid states in the country.  I did not always live here.  So, for me to have moved here, caused a lot of people to scratch their heads, myself included.  But there is a simple logic involved in how I have actually dealt with this situation, I control my exposure.  I avoid the hottest periods of the day.  I do not spend lengthy periods of time outdoors, and do not do anything physically strenuous.  And for the most part, my body has acclimated to this climate.

When I lived in the northeast area of the country, I dealt with multiple episodes of lung issues, repeatedly ending up in the emergency room.  One of which nearly killed me, septic pneumonia.  This picture is what a lung affected by pneumonia looks like (again, not mine).

I have held my own here.  I manage my lung issues as best as I can.  My episodes are not as often.  Even my children have witnessed these attacks both in warm and cold climates.  I have assured them, that I know how to deal with them, and they do not need to worry about me.  Just to keep me company and they will see how I deal with these episodes.  This is not something that requires medical attention, just an opportunity to restore.  So, for the most part, all I have really concerned myself with my lungs, has been pneumonias and those spots.  Until…

COVID19

Of course, like everyone else, the initial reaction was “great, another virus.  Big deal.”  Soon, it was realized, it was a big deal, especially for those with pre-existing and compromising conditions like I have, no spleen, and lung damage, just two of the five boxes I check off for vulnerability.

The concern with the lungs?  Pneumonia.  But a more stubborn and so far, no treatment for this pneumonia.

In other words, if I get Covid19, it will kill me.  Not fear, not fact.  My lung issues are well-known and documented.  I need to avoid this at all possible.  I have previously stated, a vaccine is not likely an answer for me either depending if it is “live media” or “deactivated”.  I cannot receive “live” vaccines because of my immunity issues.

So anyway, I have done what I can to avoid contracting this virus.  I have stayed indoors for probably 95% of my day, in a constant and comfortable seventy-four degree climate.

Well, as things begin to open up, and our temperatures and humidity have begun to creep up to the typical seasonal figures, that 5% is now being impacted.  What this means, is at one time, I averaged my outdoor time about 50-50 pre-Covid19.  I have to once again, work on my exposure levels so that my lungs are not under such duress.

The good thing for me, I know what happens, I know what causes it, and I know how to deal with it and reverse it.  This is just one of those extra things that myself, and other long term survivors have to deal with, on top of the actual risks of the virus itself.  I do what I can to keep my lungs in the best condition I can in spite of the limits.

A Lesson On Behavior From Parent To Child


From the days that I became a father, I knew what I did, what I said, and what I thought, would matter to my daughters.  I would have four eyes and ears surrounding me from different directions, taking mental notes of the many things I would say or do, looking for consistency and if they were correct legally and morally.  Decisions I would make, words I would express, and actions I took, would have an impact on both of their lives, forever.

The first ten years for each, it was always by example.  It was basic.  Sharing.  Empathy.  Telling the truth.  Manners.  Fun with friends.  Anticipation.  Doing things with no motive and no expectations.  It was all about doing the right thing.  Learning and doing all of these things would never require a correction or an apology.  Sure, things could get lost or broken, but my lesson would always include, did anyone get hurt because of it.  As long as the answer was no, we were going to move on to another day.

During the third quarter of their lives, just as things around the home that once were new, they may not work as reliably as in the beginning.  And it is important to pay attention to when things begin to change.  Reinforce well enough, and it can last even longer as the first day.

And so it goes with teenagers.  Other influences appear in their lives, wearing on the values and ideals that you raised your children with.  And that can mean mistakes.  The lessons begin then on how to work through the errors in judgements, minimize any lasting effects, make any corrections necessary, and then move on.  As a result, character develops, because that is who you are.

So throughout their lives, I hope that I have given my daughters everything they need, to figure out the difference morally between right and wrong, how to manage time, differentiating between want and need, and that quite possibly their thoughts and actions may have an impact on others.  It especially starts with their lives, adulthood just a short time away.

My daughters have witnessed a lot of circumstances that can lead to struggles and sorrows for others.  And they have the best of hearts and intentions to want to help, to empathize at the very least.  The legitimately want to treat others the way that they want to be treated.  Which is what makes the current situation we are all dealing with so difficult for at least one of my daughters, if not both, to understand.

As typical teenagers, they were not really aware of the beginnings of the Covid19 crisis.  But the very first thing that came to their attention was not illness around them, but behavior.  A simple thing as shelves in a grocery store, being empty of not just one item, several items.  To my knowledge, my daughters have never been through something like we are experiencing.  They had never heard either of their parents complain about a store being out of something we needed.  This was too obvious, because too many things were out of stock.

And so, my daughters learned about panic and hoarding.  I spent so much time trying to teach them the right way to live life, I made the mistake of not preparing them for the bad behavior of others.

In the northeast U.S., news of a winter storm rushes people to the grocery store for milk and bread, but rarely are the shelves bare.  Along the east coast and southern U.S., hurricanes make people rush out to buy gas, water, ice, and other non-perishables to survive for days if not weeks.  Admittedly, things could get kind of testy among us humans as supplies definitely do run short.

Under normal circumstances, shelves would not remain empty for long, maybe a couple of days.  But my younger daughter noticed, the shelves were staying empty.  What she may not have realized, at some point, the shelves may have been restocked, but by the time they got to the store, the shelves had been emptied again.  It was then that I explained to her the behavior of panic and hoarding.  I explained that people, just like when they prepare for an extreme weather event, they were doing the same now.  The only problem, that unlike a weather event, there was a good chance that we would be asked to remain home much longer than a couple of days.  With most of us not having been through a third world experience, the thoughts of preparing for shortages was unfathomable.  Yet here we were, and still are.  My daughter struggled though with why there was not enough for everyone.

This was just the beginning of the behaviors that would come into question as we all dealt with Covid19.

Commentary from certain people, including “Chinese” as part of the blame, and how it has an effect on them, just because they are Chinese.  My children know they are innocent in this, yet they hear the rhetoric that is generically cast out to spur racist outrage toward people in our country of Asian heritage.

They do not understand the necessity to go to a state capital, armed with weapons of war to stage a protest.  My daughters have learned about protesting from me, because I have participated in them.  And at no time, did I ever present a weapon.  My weapons were presence and words.  But when a question is asked, “what were they going to do with the guns?”

But this is one that definitely gets to them, because they can kind of relate, as the participants being interviewed by various media resources, are young, and as far as I am concerned, ignorant, stupid, and selfish.  “I’m just like taking it like, if I get the virus and die, like, then it was my time.  I’m like going to have a great time at least with my freedom.”  Other than the too frequent use of the word “like”, my daughters have nothing in common with what these “kids” were saying while being interviewed on the beach.  My daughters are doing their part, not to be responsible for spreading or contracting the virus.

They could not understand why these morons first off, felt they were hanging on to their freedom.  My daughters knew that they had their freedom and were not aware it was being taken from them by staying safe.  But even my daughters could understand the dumb thinking that these selfish buffoons were not thinking about anyone but themselves.  How would they have felt had they come down with the virus and taken it to their parents or grandparents, or someone else close to them, costing them their lives.

Sure, it’s easy to be so cocky and confident, “won’t happen to me,” as long as it does not happen to you.  And then it does.  And my daughters have witnessed that too many times with my health.

This crisis has definitely affected their worlds.  But at least the one thing I do not have to worry about, is them losing their common sense, and their core values on respect and empathy for others.  They are not waiting for something bad to happen to make them see the truth.

 

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