Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Family and Friends”

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.

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.

Being Cautious


In the beginning of March, I reached out to the doctor that deals with my long term cancer issues.  I explained to him, that I was concerned about the Coronavirus outbreak, but my heart was set on travelling to see my daughters, one who was about to celebrate her birthday.

I knew I was high risk because of the different factors I have been exposed to over my life, but I also knew how to protect myself around contagions as that was once a job I had in my past.

Of course I had concerns for my children as this outbreak commenced.  Initial reports were that the virus did not have much of an impact on kids, other than at worst a “mild” reaction.  The bigger risk would be that they could be a carrier of the virus, which would of course put me at risk as well if they were unaware if they had Covid19 or not.

I was confident of what I needed to do.  But I still asked my doctor what else could I possibly do to keep myself safe on this trip.  Of course I got the usual “wash hands frequently”, wear a mask, avoid contact as much as possible.  It was the last thing on his list that caught me off guard.  “Make sure you wash your clothes first chance you can.”

Of course, that made sense.  Because the virus could spread with coughs and sneezes, and was able to live on surfaces for up to two days, that would mean the germs could live on any clothing exposed.

Think about it, how many times have you gotten sick, and wondered how?  You did all the proper hygiene stuff like washing hands or hand sanitizer, cough into the crook of your elbow, and avoided contact or sharing things.  But you still got sick.  Because when you got home, you did not get out of the clothing that you were wearing, which probably had been sneezed on or coughed on by someone, and you had not realized it.  And throughout the rest of the evening at home, you thought nothing of it.   You went about your business, which includes touching your face up to twenty times and hour with the hands that have touched your clothes probably just as often.

My doctor’s advice was perfect.  And honestly, for all the viruses every year, I have managed to avoid all of them.  And that is my plan.

Of course now, with businesses in the process of resuming operations again, a thought occurred to me.  We will all assume that restaurants will do their part to keep their facilities and staff as free from the virus as they can.  But what about other businesses?  Car part stores.  Book stores.  Clothing Stores.  The list goes on.  It is up to the business to make sure that everything is kept sanitized and that customers abide by recommendations.

But here is one thought to leave you with.  Male or female, if you go shopping for clothing, do you try clothing on at the store?  We have been told that the bacteria can last for days, so how do you know if the clothing you are trying on, or buying, has not been worn by someone asymptomatic for the virus?  Thereby exposing yourself to the virus.  Or, for the business owner, what do you do with clothing that has been tried on, not knowing if the customer had the virus?

This is all new territory for all of us and we are all learning as we go along.  I am not saying you should stay home, but there are things you need to think about, and most importantly, be cautious about.

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