Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “May, 2020”

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.

Pushing The Button Of A Health Advocate


Ironically, I was actually writing a different post about advocacy when this happened today.

Yesterday was a day that many of us were watching, a hearing involving a whistle blower complaint, pertaining to issues related to the handling of the Covid19 crisis.  Now, because my post is seriously not going to have anything to do with the hearing or politics itself, I still need to make at least some reference to it.  But as you will see, what I am discussing is not a limited type of behavior.

So during the hearing, one US Representative, Mullin, pictured on the left, resembling a cross  between Triple H of the World Wresting Entertainment (WWE) and another jacked-up angry US Senator Jim Jordan, questioned the complainant, pictured on the right, Dr. Richard Bright.  But instead of asking questions pertaining to the complaint or at the least going for a conspiracy approach of being a bitter employee or anti-president, like representatives on both sides of the aisle were doing, this Hulkablowhard went for straight character assassination.  This is the problem that I have.  And it fired up the advocate in me, because what happened was just plain wrong.  And it has nothing to do with politics.  Mullin was nothing less than a monstrous asshole for the way that he displayed himself.

In going after Dr. Bright, he began questioning his current work status, then his payroll status, then his health status.  What did this have to do with Dr. Bright’s whistle blower complaint?  Absolutely nothing.  It was a straight up attempt to assassinate the character of someone.

What position was the doctor currently in?  What is his current attendance status?  Questioning the transition of sick time to vacation time?  The doctor’s payroll status?  Health issues of the doctor?  And then the biggest insult, and one that should forever label Mullin as the ultimate scum, implying the doctor’s health was too ill to get to work, but not to testify before Congress.  Not one question about the actual complaint or anything about the current crisis and any role the doctor may have had.

It is clear what Mullin was trying to do.  I have seen it many times over my years as an advocate.  Pain in the ass does something wrong, gets punished, but does not cower like a beaten dog in remorse, resulting in an even stiffer penalty.  Employee defends himself, perfectly as the employee has done nothing wrong other than to draw the ire of a superior who wants things done differently.  Then the attacks become more about the individual, and not the work history, or even the incident itself.  We have all likely been there.  And we cannot help but want to stand up and cheer on the victim of this bullying.

Years ago, I was a union shop steward for a major company.  For those unfamiliar, the shop steward is representative for the union member, somewhat like a lawyer, there to defend the employee with a bargaining unit contract, regardless of the infraction.  How hard are supervisors driven to “get” employees?  It all depends on how much you have irritated that supervisor.  A friend and former co-worker used to describe me as “an asshole.”  But followed it up with this comment, “but you know what?  You are a stand-up guy.  You stand by what you say, and you support everyone equally whether you get along with them or not.  You do your job as a steward and no one can ever question that.”

One incident involved a co-worker who was out sick.  Having only one car, and needing to go to the doctor later in the day, she dropped off her husband at work, then dropped her children off at school.  But, instead of going straight home, get this, you might want to sit down for this, she pulled into a Dunkin Donuts to get a cup of coffee.  She was spotted by one of our supervisors.  I felt we should have notified Graterford Prison to alert them of a new inmate coming for the crime that had just been committed.  Management did not appreciate my cavalier attitude any more than I appreciated wasting my time having to defend someone who claimed to be sick, and being sick, should have not been drinking coffee.

Another incident involved another co-worker, that I had represented through the various grievance steps, only to be removed, um… deterred by supervision and made unavailable to attend the final grievance meeting, leaving someone else to attend in my place.  I had been successful up to that point in protecting the employee, and clearly, management was really intent on making an example, and not at their expense.  I made the decision that I would use personal time, that I could not be denied, and then attend that meeting after all.  At the door, I was denied entry, stating that I was not on company time, therefore ineligible to attend.  After a lengthy protest, company and union officials went back inside to discuss the situation that I had presented in my insistence.  Ironically, or strategically, this went on for over an hour.  The attempt was to get me to spend and waste the personal time that I had taken, now expiring.  Obviously underestimating my morals, I requested additional personal time, clearly willing to spend it all if I had to, to defend this employee, which now clearly, I knew, a fight I was winning.

Personally speaking, following my open heart surgery back in 2008, after spending a week in the hospital, I was sent home under strict recovery orders.  One of which, was to make sure that I took some walks, not faced paced, but just for the point of keeping my body moving, not to mention that getting outside, would help keep my spirits up.  During that first week, I probably did not walk more than a hundred yards, but it was a long a busy street, a street that many of my co-workers traveled to get to work.  Yep, you guessed it.  My phone began to ring from both ally co-workers, and one supervisor who looked out for me.  I was being warned that I “look great” after being spotted walking and that “there was no reason he should not be back at work.”

Now, forget the fact that less than ten days prior, I had my breast bone cracked open and a major heart surgery performed on the heart.  Anyone who has ever suffered a broken bone, know, bones do not heal overnight, usually requiring a cast, which clearly they cannot put on a person who has had heart surgery.  But evidently, all of these passersby had enough medical knowledge, and about me, to determine my work status.  Of course, that set off a whole other set of challenges, as my doctor had ordered me out of work for six months to allow the bone to heal, compromised by the very thing that caused the need for the surgery in the first place, radiation damage would hinder control.  I now had my employer insisting on their own surveillance of my recovery which they insisted on my doctors seeing me weekly, though my doctors stated they had only intended to follow me up in three month periods.  Definitely a waste of my cardiologist’s time that he could have been seeing other patients, my status never changed, and I would still remain out for the recovery plan as prescribed by my doctor.

So of course, when I saw this jackass from Oklahoma attack, and that was what it was, attack Dr. Bright, my advocate bat signal went full blast.  But of course he has a team of people looking out for him.  Clearly Mullin violated Dr. Bright’s HIPPA rights, not necessarily as the doctor, but in continuing to express Dr. Bright’s personal health publicly.  And he should face repercussions for that.  It should also be noted, Mullin is not a doctor, but a plumber.  Yet Mullin felt qualified to interpret and explain the impact of hypertension, even if spontaneous and the dangers posed when not managed.

We are dealing with a very serious crisis right now.  And dealing with anything other than science and facts is only adding to the complications and wasting time bringing an end to this pandemic.  What Mullin did was a travesty and embarrassment to himself, our government, and the people of Oklahoma.

A Typical Day Today


The easiest way to get through these difficult times, is to keep some sort of routine.  We all have different needs and circumstances for sure.  But as I have often explained before, from personal experience, my chemo battle, you can get through the toughest times of your life, if you take them one day at a time.  Concentrate your energies on that day only.  And if it works for you, make that your routine.  Because the next day, you can look back and say “this worked yesterday, I can make it work today.”  Some would call this “groundhog day thinking.”  Maybe so, but it works.

Knowing I am high risk, I have kept to myself to not only protect myself from my vulnerabilities, but also so that I do not have any impact on anyone else, especially any health care workers.  Their work load is heavy enough without me being another patient for them.

My days are static, routine, not really any fluctuation other than longevity of each activity.

After my morning walk, I spend my time with “to do’s”.  I had been talking about writing a book based on my experience as a cancer patient and survivor, much like I do here on the blog.  The good news, this crisis has finally convinced me that I had the time.  And I am fifteen chapters into this “survival guide” I am nicknaming it.  A couple notable things while doing this project, which I have no idea that I will even finish it, but can I even get it printed.  My goal is just to finish it.  The first thing that has my attention, the details that are still in my mind, fresh as the day that they happened over thirty years ago.  I remember everything, including conversations, word for word.  The second thing, I have been alive to see actual progress in the diagnostics and treatments of Hodgkin’s Lymphoma.  With that came the disappointment and realization of the fact that very little was known about what my body was being put through as far as treatment when it came to long term survival.  I was a guinea pig.

Anyway, staying focused on this being a fun post.  Along with the book project, I am also always working on posts for “Paul’s Heart.”  Both of these I am doing on an old laptop.

Yep, my laptop is almost twenty years old.  A technical issue resulted in an upload upgrade to Windows 8.1, but the operating system is old.  But like everything else I have, I take really good care of my things.  Vinyl records… never a scratch.  Original Nintendo game cartridges, never had to “dust” off any contacts.  My laptop?  I protected it in its case, kept viruses at bay.  In fact, I sill have all the information stickers on the laptop.

One way that I have preserved it so long, is I go through it, looking for things that I can delete or consolidate.  I have not really made a lot of ground on either effort.  But what I have done, has been way more fun.

Do not underestimate the power and the value of reliving your past.  I literally have thousands of photos saved in my laptop.  Places I have been to, things that I have done.  More importantly, so very precious moments with my daughters.  Struggling with the daily repetitive grind of this crisis?  I simply go through album after album of these memories.  There are so many, and I know that I have not seen them all.

Besides a daily walk, with my health concerns with this virus, I do what I can to keep my lungs in the best condition that I can, in spite of their condition.  I could just use the spirometer daily, but as anyone who has ever had to use one, they hate it and using it is boring.  So, a more fun way to exercise my lungs, ask Alexia to play some music.  Because of the reduced capacity of my lungs, I no longer have the technique that I once did.  By the end of the song, I usually end up winded.  But I have accomplished what I wanted, expanding my lungs and keeping them flexible.

I have also been paying attention to what others have been “binging” on Netflix and Amazon.  While my back will not allow me to watch more than two episodes at a time, I have completed Ozark the 3rd season, Hunters, Upload, and of course, Tiger King.  Newsflash, there is going to be a 9th episode (the 8th episode was an after filming episode filmed via social distancing methods).

But the highlight of my day is in the evening.  Getting to talk with my daughters.

Initially reliant as communication between scheduled visits, as we wait for the time that it is safe not only for my daughters, but for me to travel with my health issues, Facetime, Zoom, and House Party allow me to still share our daily experiences.

And that for the most part is how I fill my day, day after day.

Like everyone, I am hoping that this crisis ends soon.  I do not know when it will end.  But in the meantime, I am doing my part not to spread or get infected.  I do not get involved with the whole “forced to do it” movement.  I do it because it is the right thing to do.

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