Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Politics”

Something We Can All Relate To


Our country, no, the entire world is in the grip of what is likely going to be the worst health crisis it has ever faced.  Information and misinformation make it difficult to figure out who is telling us the truth, and likely making it more dangerous in delaying protective steps necessary to protect us, and prevent the situation from getting worse.

The pictures I have shared above are emotionally provoking.  Some people see this photos and they see ignorant and selfish people risking not only their own health, but the health of all, including those on the front lines who may one day have to treat them because of their poor decision.

But for others, and this is going to shock some of my readers, but I can kind of empathize with them.  I am stressing kind of, because I believe without a doubt, they are fools and defiant as a three year old throwing a temper tantrum.  And this has nothing to do with their right to assemble and protest.  I believe in that right 100%, no matter what the cause, unlike those who have a selective criteria to be an acceptable protest.

Protesters want us to believe this is about freedom and liberties.  We are expected to think it is more important for an economy to thrive than for people to live.  But I want to argue something even further.  And here is where my empathy comes in.

What a great musician, what a great album.  The title of the album… definitely thought provoking.  The title track from the album started as follows:

“Well they took me to the hospital,
And I swore I would’t go.
My blood was running much to high
My heart was much to slow.
The doctor had some questions, somethings he had to know.
My baby shook her head and said, the boy’s got no control.”

I used to think the worst thing about dealing with cancer used to be the hair loss, the nausea, the fear that I was going to die.  Looking back, I could not have been more wrong.

I was recently interviewed for a podcast for my perspective as a long term cancer survivor.  And it was during this interview that I realized what was actually the worst part of fighting cancer.  Seeing the protests and seeing all of the social media posts, confirmed it.  The two situations, while the circumstances are different, the perspective is the same.  It is a matter of all of us recognizing it, and then being able to empathize with each other.  Perhaps that might be the door to open enough to allow us to support each other during this health crisis.

My story, like others, I was “livin’ life” to its fullest.  Parties.  Working.  Girlfriend.  No cares in the world.  Not even aware of anything in the world.  I was in control of my own life.

But with the diagnosis of my cancer, and actually every health crisis that I have face and continue to face, I lost all control.  I had no control.  I had to give up all control as if my life depended on it.  Because it did.

The difficult part is, that you do not realize that you have lost all of that control with your life, with your body.  You are too distracted by all of the other things going on with your diagnostic tests, treatments, relationships, and other aspects of your life that you could not put on hold.

With the diagnosis, and this goes for any serious illness or injury or trauma you face, it is the same situation every time, you lose all control.  You have to get to this appointment.  You have a schedule to keep for your treatments.  There are things you need to avoid so that as not to react or counteract the treatments.  Patients get told of things that cannot be done, temporarily or ever again.  And your plans for the future?  Those likely will never exist again as you had dreamed of.  This is what we in the cancer world often refer to as the “new normal” once we are done.

For a period of time, could be months, could be years, as cancer patients, or dealing with another serious issue, we no longer have control.  We have to listen to those that know how to get us through the particular situation that we are dealing with.  We have to trust them, because they are the ones with the experience.

And yes, by losing that control, we lose our freedom.  But it is temporary and we know that.  And that is why we accept that loss of control.  Because we know in the end, that temporary concession is what will help us to survive.

To those who are protesting, I respect your right to protest.  I may disagree with some of the motives, but one thing I definitely understand, are those protesting over what they feel is a loss of their freedom.  Like millions of others, I get that.  And that is why I can empathize with them on that fact.  Knowing this, why cannot we convey to those protesters then, and convince them, that this loss of control is temporary?  For the health?  For their lives, and possibly the lives of their loved ones?

Yes, I am naive.  It should not be that hard to understand.  Unfortunately our society is not only politically driven, but also politically split.  There will always be an opposition now to the party in charge, and that opposition will have zero trust.

I cannot imagine where I would be today, thirty years later, had I not trusted my doctors.  Did I like them all?  Absolutely not.  I have written many times of my aggressive behavior toward at least two of them.  But that never kept me from trusting them, surrendering the temporary control of my life, so that they could save my life.

Like I said, I am naive.  The only way that you can truly appreciate this type of thinking, is to go through some sort of trauma like this yourself.  Sadly, this crisis is that trauma.  But unless you have gone through something before this moment, you cannot relate what I am saying.

But just as my battle with cancer, with Covid19, we are being asked to take precautions.  One of those precautions we must take, is to protect us from others that we cannot rely on to also take those precautions.  The contagious period is only up to fourteen days.  In theory, with what was being asked of us, with 100% compliance, worst case, we could have been done with this no longer than three weeks, at worst a month wrapping things up.  Yes, to do that would have meant giving up control, or as the protesters call it, their freedom.

So now, as restrictions ease up, in spite of continually climbing numbers, which means it is still bad and getting worse, but it is going to return us to the reckless exposure and risks, and we will have even more gruesome numbers to deal with that have been bad enough to take in.  And instead of a short time loss of control, or freedom, we will be looking at an extended and sustained period of loss of control.

I get it.  It was a political point you were trying to make.  But in reality, it was about giving up control of your life.  Most if you are fortunate, have never had to do that.  As a cancer survivor, I did.  I knew what to expect during this crisis.  I went through so much worse than we were being asked to do during this crisis.  I lost financially big time.  I know what it is like.  I know what financial loss feels like when you cannot work.

What it boils down to is the comparison to the three year old spoiled and defiant child who will not be told what to do.  In the end, that child has no choice, one way or another.  Except in this case, one way is dealing with the crisis in an accepting and cooperative effort, the other way is living with a death count that is unacceptable.  And being one of the lucky ones not to succumb to Covid19 does not make you right in your decision and stance.

This is not about freedom.  This is about control.  And right now, the Coronavirus is in control.  Are you going to make it worse, or are you going to do your part, as the “United” States of America, so that we can get through this, recover, and rebuild?  That choice you do have control over.

Why Is Covid19 Different To Me?


Why is Covid19, also only known as the Corona Virus, diff  erent to me than all of the other viruses and outbreaks I have seen over my survivorship?

First, let’s start from the beginning.  I lost my spleen in 1988, went through chemo and radiation therapies in 1989 and 1990.  Now, while I am jumping ahead of the discussion, it is these two factors that lead me to the status of being considered “vulnerable” because of the damage caused from those events in my life over thirty years ago.

Now, to be fair, I was unaware that I was “vulnerable” for over half of my survivorship.  It was not until 2008, that I learned the many health complications that I have, that leave me “vulnerable.”  So, let’s look at the time period up until 2008.  The following were viruses or outbreaks as documented by the WHO that were dealt with in the US.  I will call this “period A”.

1996  Dengue

1998  Influenza

1999  Encephalitis

2000  Acute febrile, meningitis

2001  Anthrax

2002  West Nile

2003  Influenza, SARS

2004  SARS, Avian Flu

2005  Avian Flu

2006  Botulism, Avian Flu

2007  Avian Flu

Along with the annual flu, these were the things that we here in the US had to deal with.  As mentioned, this is per the World Health Organization (WHO), and I need to stress the importance of the WHO.  Because if you saw the list of diseases and viruses each year that were listed for all of the other countries around the world, had they reached over here, it is likely we would have an entirely different world, if any getting around the turn of the century.

My point with calling this grouping of years, “period A,” because at this point, I was still unaware of how “vulnerable” I was.  I got no vaccines, even for flu.  I never came down with any of these viruses and on at least two occasions, went right into the firestorm of two of those virus, SARS in 2004, and bird flu in 2006 to adopt my daughters.  I was given some antibiotics to take if I felt ill, but that was it.  Those meds were not used.  In all honesty, I never gave any of these viruses any thought.

But in 2008, things changed in a big way.  I had discovered, that side effects from my treatments had progressed over the years, and without me being followed up, had gotten very bad.  So much so, I had to have open heart surgery to save my life, moments away from certain death from a fatal heart attack.  But as I learned all of the problems that now existed with my body, so did another issue, my lack of immunity, the ability to fight off infections and viruses.

Upon becoming the patient of a long term survivorship clinic, one of the things researched about my body, was my immunity.  Blood titres would reveal I had no immunity against pneumonia and meningitis.  And so, along with a lecture for me not getting annual flu shots, a personal preference, and to my doctor an unfortunate risk I take every year, he did insist on me getting boosters for pneumonia and meningitis.  The issue I had with that, was I was given those vaccines prior to my having my spleen removed for my cancer diagnosis.  These vaccines were supposed to be lifetime.  Losing my spleen evidently changed that.  The problem was, that a single booster of each vaccine, did not cause my body to react.  I needed two additional boosters for pneumonia and an additional one for meningitis to finally show titres.  But besides showing titres, it should my body lacked the ability to fight infections and viruses.

So, it is only normal then, that I should be concerned about news of a potential virus outbreak.  I present to you, “period B”

2009  H1N1 (swine flu)  PANDEMIC LEVEL OF SPREAD

2010   H1N1

2012  Corona Virus, Hanta Virus

2013  MERS, Corona Virus

2014  MERS, Ebola, Entero Virus

2015  Zika, Measles, Lassa Fever

2016  Salmonella, Elizabethkingia, Guillaine-Barre Syndrome, Zika

2017  MERS

2018  Listeria

2019  Measles

Now again, we always had a flu that we were dealing with each year.  And something else I just noticed as I was going through this section, especially over the last few years, very little information mentioned on the WHO web site as far as issues in the US.  And I know, that we had other outbreaks to deal with, that were mentioned for other countries.  Out of curiosity, I did have to look up what “Elizabethkingia” was, especially since it happened here.  It is a genus of bacteria found in soil, leading to a pathogen in hospital environments.  I did not research that any further.  Trying to stay focused here.

So, unlike “period A” where I had no reason to feel concerned, “period B” was different because of my awareness.  I still declined flu vaccines, and I also had to receive several more boosters of pneumvax and one more for meningitis.  The only exception that I made was in 2010, when my doctor was finally able to convince me of the need to take the “swine flu” pandemic seriously and get the vaccine (that will be another post), as well as the annual flu vaccine.  Well, as if my body was not challenged enough with those two shots, got another pneumonia booster that week also.  And that was the last time I got any vaccines.

But just as I did with “period A”, “period B” was pretty much business as usual.  I went to work.  I went to the doctor.  I went to the emergency room many times (documented on this blog for the many incidents).  But not really any concern.  Why not?

Why is it different in 2020 with Covid19?  At least for me.

Declared a pandemic, just as the swine flu in 2010, Covid19 has huge unknowns.  At the time, there was not even any testing available.  All we would here were symptoms from the effects of the virus, most notable, pneumonia, a condition that I have dealt with at least twice before, and combined with my other vulnerabilities, put me at high risk.  Unlike 2010, there is no vaccine, still, and no known treatment other than guessing here and there.  And the other big difference, the ease of the spread.

But there is one notable difference for me.  And that is the warning that I have gotten from my doctors.  Sure, I watch television, and for those networks that actually reveal facts such as numbers, that information aligns with my doctors concerns.  And while all of the medical experts of the CDC and NIH and FDA are recommending social distancing and stay-at-home and masks, my doctors did not mince words.  Do not travel.  Stay at home.  Stay away from as many people as you can.  You may not have a chance against this virus.  Unlike the other outbreaks, there is no cure, there is no vaccine.

I trust my doctors.  Information that I get from the news, no matter who, it does not get a priority over what I get from my doctors.  I have re-scheduled medical appointments.  I have cancelled visits with my children.  I have literally only seen less than a handful of people over the last two and a half months.  And unlike 2010, or any of the years, I actually do know people who have contracted Covid19, and at least one person who has died from it.

So yes, this is one time, I must take this type of situation differently than before.  Not fearmongering.  And my hope, that at some point, we get through this, and like the other years, I have not been exposed to Covid19.  I know that I have done all that I can.

Advocates In Training


My daughters have witnessed a lot in their short lives so far.  They have seen my experiences with my health.  They know what it is like to grow up in a house that has gone through a divorce.  Experienced in adoption.  That is just what they have been exposed to personally.

Then there are the things that they go through when they are away from either of us parents.  School lock downs, bullying, suicide, teen drug and alcohol and tobacco use are constants in their environment.

Both girls are very aware of the world outside of their home as well.  The homeless, the poor, the disadvantaged.  They know quite easily, it could be them in someone else’s shoes.

And then of course there are the things that they learn in school from science to health, history to politics.

I did my best with them, from the earliest of ages, for them to have empathy and sympathy for others.  My older daughter, not even of school age noticed a group of special needs kids, while eating at an ice cream shop.  While she may have noticed that some looked different, she only saw them as regular kids.

I have never heard either of my daughters even mention someone’s skin color.  Both are aware that they are not Caucasian, have Caucasian parents, yet the question of “why is our skin color different than everyone else’s skin color?”

Years ago, while visiting Philadelphia, my daughters saw their first homeless people, not the purpose of our visit, but led to a long and lengthy conversation about the “how’s” and “why’s”, and what could we do for them at that moment.  Just two years ago, while doing some grocery shopping for one of my visits, a less-fortunate woman approached us, asking us if we had anything we could spare so she could buy some food.  I will admit, there is a 50-50 chance I will help, just because, who am I to judge if someone is legit.  But in front of my daughters, I faced another test.  Lead by example, or teach a very bad example.

Do I teach them that it is better to be benevolent, without judgement?  Or do I show that that it is okay to lie.  Or do I make it more complicated than that, that it depends on what you are lying about?  Those who understand the mind of a child, knows there is a reason that there are age limits for a reason, because in many cases, the minds are not developed enough to make the right decisions.

I personally feel it is an awful lot to expect of a child to figure out the difference between telling the truth, and understanding potential consequences of telling lies.  We have all been there.  The phone rings.  A child answers the phone.  The caller asks to speak to a parent.  The parent says, “tell them I’m not home.”  As adults, we do not see the big deal, but as children, they get confused.  Telling lies is bad.  But their parents do it.

I could have easily have told the stranger that I did not have anything extra to give, because I really did not have any extra, as I budget myself when I travel for the visits with my daughters.  But as I said, I have taught my daughters to be empathetic, even if it means “giving the shirt off of my back.”  As I looked at my younger daughter, I knew what my answer was going to be.  My daughter, knowing that I do not have much, saw me pull out some change out of my pocket, handing her a $5 dollar bill.  The woman expressed her gratitude, and both my daughters had smiles on their face, believing that they just made someone’s day even just a little bit more better.  Though none of us talked about it, there is also the chance that we all realize, we could have also just been had.  But again, I have raised my daughters to see the good in people.

It is one thing to be aware of problems and issues.  It is another to do something about them.  And this is where both parenting and schooling play the most important part of teaching a child how to be a good advocate, to express themselves properly.

Now older, my daughters have opportunities in school, where they must present “arguments” or opinions to certain discussions from English literature to historic events and world issues.  Some of these opportunities may be in the classroom, or in front of a debate level stage.

My daughters have seen many opportunities to witness me standing up not only for myself, but for others as well.  They have seen the good and the bad.  It is important to them to see the consistency that I do not sacrifice what I believe in.  Just as important, they must also witness that I do not let any defeat deter my efforts.  They have learned that it is important to be educated about the cause that is supported, and then also to learn how to communicate their points of view, especially in the firestorm of an “all out” opposition, to never stoop to someone else’s level because that is not who they are.

It would be easy if people just did the right thing all of the time.  But the world does not work that way.  It would be just as nice if we could have a simple discussion to point out the needs to correct a wrong situation, and have the humility to accept the error, instead of defending pride to the death, and “better them than me”.  My daughters have learned, in all of the areas that I am an advocate for, health, cancer, adoption, child custody issues, discrimination and more, I do not give up.  A loss is just that, a loss, not an end to my efforts.

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