Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

10 Apr 2020

How I Will Celebrate Easter This Year


It took a long time for me to open my heart to the holidays following my battle with Hodgkin’s Lymphoma.  My diagnosis and conclusion all occurred around major holidays.  I kept my heart open to the religious aspects of the holidays, but as far as the commercial end, I really wanted nothing to do with the “happy” part of holidays.

It took the adoption of my daughters, the return to the innocence of the holidays for me to once again look forward to the Easter bunny and Santa Claus.  They would be raised with the religious aspects as well, but I can honestly tell you, there is nothing like the excitement and anticipation of watching your own children, rush downstairs in anticipation for what waited for them.

It was important that I carried on the traditions that I enjoyed as a child.  With my daughters being Asian, tradition is something that is one of the most important things to the Asian culture, and I wanted them to know not only Asian traditions, but American as well.

With three families to visit on Easter, Easter was the only holiday that my father had top priority with my daughters.  My dad really enjoyed this holiday with his granddaughters.  An annual tradition, was having an Easter egg hunt in his back yard, followed by a high salt ham dinner, prepared by him.  This continued until his passing in 2014.

My daughters also know this time period being difficult for me, as in 2008, just a few weeks after Easter, I learned the major way my life would change, due to late developing side effects caused from my cancer treatments.  The first such side effect, I was dying from a “widow maker” heart condition, blockage of my heart, resulting in  emergency open heart surgery.

Several years later, I filed for divorce.  As is common with divorce, there has to be an agreement with custody.  I do not refer to them as visitation, as I do not consider myself a visitor.  I am the father of my daughters, and they are with me at certain times of the year as agreed.

Already mentioning holidays not having the same value as they would for their mother, I agreed to have my daughters spend the Easter holiday with their mother, while I would still have them during the Easter break period.

And that is how it has been for the years that followed, until now.

The hardest decision that I had to make, actually several times now, has been to cancel time with my daughters.  The crisis with Corona Virus which has affected the world, has affected so many lives beyond just the health and safety levels.

While my daughters were not even born when I dealt with my Hodgkin’s Lymphoma, they were there when I had my open heart surgery, and several other times, when I faced a medical emergency, including watching me be carried out of my home at 4am in the morning by ambulance, dying from septic pneumonia.  I control what my daughters hear from me in regard to the virus itself, and the possible impact with me.  But they definitely understand the risk and danger with the various exposures  of travelling to see each other.  While science points that the virus is not as much as a risk to youth, they do not want to see anything happen to me.

For the first time, I am unable to actually spend time with my daughters during this holiday period.  And it does weigh heavy on my heart.

One thing that I have always done with them is spend at least some time, in church.  Two years ago, I took them to the church where I used to run a youth group.  On Good Friday every year, the church would hold a very somber service, entirely by its youth.  It was a very powerful and symbolic service that would culminate in the service ending in darkness, and departing in silence, to wait for Easter.  My daughters enjoyed that particular service.  They understand the role of religion in my life, and what role I want it to play in their lives.

This virus has different plans though.  And for the first time, there is no church for me, at least in person.  It is not a hard decision, in spite of government officials not having the guts themselves to make the decision, not to physically attend church.  With technology available, churches have a variety of resources to broadcast services, through radio, television, or streaming.  In spite of this, there are still some churches that feel that it is their responsibility to hold services, even if God allows congregational members to contract and possibly die from the virus.  It would be God’s plan.

That is not the God that I grew up with.

I have made the sacrifices that I have had to make in regard to spending time with my daughters, so that not only would I not contract the virus, but put others at risk.  It really is not that much to ask, for a brief time period, to ask churches to do the right thing, and keep their doors closed, physically, not spiritually and technologically while our country does its best to eliminate this crisis.  I want to spend time with my daughters as much as church goers want to attend church Easter Sunday.  But lives depend on the decisions that we make.

For me, that decision is easy.  Stay home.

Happy Easter.   There is always next year.

Posted in Adoption, Cancer, Education, Family and Friends, Inspired By..., Recreation, Side Effects, The Heart | Leave a comment
04 Apr 2020
1 Comment

Has It Really Come To This In The United States?


This, is a screenshot, from a news segment, explaining what is happening to one of the hardest areas hit with the Corona Virus, New York City.  It is unimaginable, in what is supposed to be the greatest and wealthiest countries in the world, that we are in a position, where patients are likely to be scored so as to prioritize who gets treated for the virus, and who does not.  In other words, deciding who lives and who will die.  Right now, paramedics are being tasked with determining in the field, if patients are revivable for cardiac events, if not, not to bother transporting them to the hospital.

Sadly, there will be a section of the country that cries out, “SEE!  THIS IS WHAT SOCIALIZED MEDICINE LOOKS LIKE!”

No.  This is what a country based on capitalism looks like.

Let me be clear.  President Trump does not get blamed for the virus itself.  In fact, even as he tries to defend himself casting blame at prior administrations for lower than needed efficiency, perhaps legitimate, the bottom line is, he has had three years to straighten out the supposed mess he claimed to have taken over.  In his daily press show on April 3, 2020, he responded to a reporter that his priority was building up the military, claiming that the shelves were empty of ammo and other equipment.  He made building up the military his priority over human health.

But that still does not explain why doctors are faced with the decision that they are today.  Why are we not better prepared for this crisis with equipment and PPE in the pipeline?  We have had several months to prepare for what President Trump claims the states should have been better prepared for.  There is one major problem with this concept.  President Trump claims he did not know about the possibility of the pandemic (which he later claims that he did), yet says the states should have prepared for it.  Only President Trump receives the intelligence briefings, which stated the coming pandemic, which he ignored.  But if he wants to claim he did not know about them, how could he expect the states to know about them?

The biggest travesty of all is this “shortage” of equipment.  While I understand certain political philosophies of certain political parties, of which I belong to none as an independent, I know there are those who support less government involvement, beginning with the federal government.  Now of course, this only applies with certain issues, but one of those issues has been declared during this emergency.  It should be up to the states to take care of themselves during this crisis.  The federal government will help if it has to.  THIS IS BULLSHIT!

Our government, in a time when they should be taking leadership, by example, has instead taken the position to let the states handle their own situations, in some sort of Hunger Games fashion, a Darwin approach where only the strongest, or wealthiest will have the best chance to survive.  States now not only bid against each other pushing the prices of equipment higher and higher, only to have the federal come in and out bid everyone else, obtaining the equipment.  Clearly, we are no longer the “united” states as each state is on its own.

So now, as “hot spots” rage out of control, the realization that hospitals will not be prepared for the surge of Covid19 patients, has led local administrations to face the most tragic of decisions, who will die, and who will get to have the equipment to save their lives.

This should not be happening in our country.  This is NOT socialized medicine.  This is fucked up planning from the top down, starting with President Trump.

Dr. Robert Truog of the Harvard Center For Bioethics, yes, ethics is in the title of his position, ethics defined as “moral principals”, has been working with other doctors, on a guideline, or as the snapshot above suggests, a point system to help doctors determine, in a shortage, who will live and die, based solely on capitalistic stupidity.

It is likely soon, if you are an otherwise healthy person, who comes into a NYC hospital, or quite possibly any other hot spot area hospital such as New Orleans, Detroit, Los Angeles, anywhere for that matter, you will be given a priority because you have the best chance of surviving the virus.

BUT…

If you are elderly, have cancer, have cardiac disease, have lung disease, diabetes, high blood pressure, or any other terminal illness, well, points on the scale are taken away which will determine your likelihood of survival, and whether or not, this type of patient should be considered for treatment.

ARE YOU FUCKING KIDDING ME?  THIS IS WHAT OUR COUNTRY HAS BECOME BECAUSE MONEY HAD TO BE SAVED SOMEWHERE, AND IT WILL COME AT THE EXPENSE OF HUMAN LIVES?

A friend and fellow long term survivor with complications of Hodgkin’s Lymphoma side effects wrote to me about our health histories in this type of crisis.  We have enough against us with the health issues we deal with, and now, to be as concerned as possible, to perhaps one day face the Corona virus.  Many of us have dealt with life and death situations and corrections.  None of us want to die.  We have not survived decades just to be taken out by either this illness or a “point system.”

The only advantage that we do have over the “healthy” population, is that we know how to prepare as best as we can for this crisis.  Under normal conditions, we have no notice when we were threatened with a major cardiac event or septic infection.  We have time to put our thoughts together, to protect ourselves, to prevent as best as we can, and then if necessary, to face Covid19 if we must.  But it should not come down to a checklist for one human to determine the value of another for their life.

This virus is not like a sinking cruise ship where every cabin will flood, drowning every passenger remaining on the ship.  The virus is not going to flood our homes or apartments like water would do a cruise ship, which is why I know that my fellow survivors are doing all we can to avoid getting Corona virus by distancing and isolating.

Some of us have expressed concern about “right to die” decisions, which will come up depending on which state your reside.  For some, including myself, if more locations adapt this elimination process, we will have to decide about our honesty about our health.  Which also would work against us.  Because those of us long term cancer survivors have health issues that are not only not common, but neither are the treatments, and medical personnel need to be aware of the special circumstances they are dealing with.  But soon, as in NYC, making awareness of this medical history is the literal pen signing our death warrant.

To be clear, I know the issues and severity of my body’s health.  I have a living directive which I expect to be honored no matter what state I am in.  I have actually been on a ventilator many times in my life for either my heart surgeries, or other diagnostics, but these have all been short term.  It is a well known fact, the longer on a ventilator, the less likely to come off.  In other words, you die.  But I have made it clear, a ventilator may be used on me, to allow a procedure to take place, but not for life support.  And if it were definitely able to be determined, if I were to contract the virus, and have no chance at recovery, I would not want the ventilator wasted on me.  THAT IS MY DECISION TO MAKE, not a doctor, and definitely not the government who created the shortage and did nothing to correct it.  And if I make that decision, just please make me as comfortable as possible, and allow me to say goodbye to my loved ones.

I am pissed off right now.  I am not being political.  I am trying not to concentrate on blame.  I am doing my best to follow the voices of the experts, and there are only two of them speaking publicly, Dr. Fauci and Dr. Birx.  Anyone else on that virus committee all have other interests of the virus over the health of individuals.  I am doing all that I can to protect myself, and to prevent making anyone else sick, especially since so many still are not.  And who can blame them, the leader of the United States, I mean, the leader of the states is not willing to set that example himself.  As with any of my other health issues, the last thing I want is to need to go to the hospital, especially right now.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart
03 Apr 2020
1 Comment

Corona And Child Custody


***Disclaimer for my trolls… This post has no relation to my own custody case or my children.  Any similarities are definitely unintentional.

One thing “staying at home” is doing, is providing me more time to research, write, and respond.

A reader asked me to clarify, or go into more detail, as to the situation of custody in a medical crisis such as our country is currently dealing with.  I gave a short answer, one that is shared on legal web sites all over – that an illness does not prevent a parent from being a parent.  In other words, if you have a custody order in place, follow it.  Because that is exactly how a judge would enforce a custody issue or rule on contempt.

First, my position.  As an adult child of a divorce, and as a parent involved with divorce and issues of custody and visitation, I am always going to be an advocate for the child first.  I know what it is like to have grown up in that environment, and I know what I must do to avoid repeating those issues in my own situation.

So the next thing to understand, there are two types of parenting following a divorce:  co-parents and combative parents with agendas.

It is very easy to recognize the co-parents, because they would not worry about the issue of how to handle a custody or visitation during a crisis such as this pandemic.  Both parents would recognize the importance of assessing risk of exposure and cross-contamination, support each other’s abilities to care for the child(ren) – something that was never a disputed issue during the marriage either, and then of course, recognizing the natural need for the child to be in both parents lives.  Both parents will cooperate in sharing communications and updates as to the health of the child(ren) as well as sharing records so that both parents are informed.  In other words, the parents act as if the parents did not divorce.  As I have always said, and even told my children, parents do not divorce, only the husband and wife divorce.

Combative parenting is an entire different issue, and with more states recognizing the importance of shared parenting, often a custodial parent is likely to use an emergency situation as an attempt to justify violating a custody order, agreed by both parents, and ordered and signed by a judge.  The long short of this argument, and supported by case examples and family law attorneys, barring a child being hospitalized or that critically ill, the child(ren) can and should be cared for by both children.

It sounds simple enough really, “best interest of the child.”  But unfortunately it is not that simple.  A spouse who is so bitter, lasting into years, even decades after a divorce, often resorts to “violating” a custody order – denying a non-custodial parent the ability to have physical custody.  Intentional or subconsciously, a custodial parent decides  either that they feel in the right to make decisions on visitations, or perhaps sees opportunities to use the child(ren) as a weapon to intentionally cause emotional hurt towards the non-custodial parent.  Of course, this behavior is not only wrong, not only offensive, but hurts the children the most, not the intended target.

The only remedy for a non-custodial parent to deal with a custody violation, is to file a contempt complaint.  Parents need to remember, both sign this agreement, and the judge orders it and signs it.  There is no contesting what is written, it is black and white.  If there is a problem with it, then there is an opportunity to modify the agreement, but, in order to do that, there must be either a mutual agreement to modify it, or substantial issues being addressed to be corrected by the modification.  Otherwise, a custody violation contempt charge because “a child was sick” will be upheld.

Again, using this Corona virus crisis as an example, if the child does not have the virus, the child has the right, and must be allowed to see both parents.  If the child, or the non-custodial parent has the virus, common sense for what is best for the child and/or parent should prevail without requiring legal intervention.  That is what co-parenting looks like.

Of course geographical location may play a role in the decisions of custody exchanges, but again, cooler and responsible heads should prevail with common sense.  Obviously, if both parents live in close proximity to each other, allowing car travel between homes, there should be no issue with exchanges.  And even if the child were to have the virus, and the non-custodial parent would not, the situation still requires a decision based on the best interests of the child (keeping in mind both parents are able to take care of their sick child as they did when they were married), and then, exposure risk of the non-infected non-custodial parent.  But again, it is a no-brainer, you make the best decision, not a selfish one.

In the event, long distance travel is required, this is a totally different issue, but again, requires communication between both parents.  Using this crisis as the example, what is the virus exposure with the custodial parent, and with the non-custodial parent?  What are transportation risks (such as air or train)?

And then of course, there is also one other major factor to consider, as pointed out, any pre-existing condition that would complicate exposure to or infection of the virus.  I have often written about my exposure risks.  And even when I was married to their mother, I had to have a plan in place, in the event that either of my children would come home from school, “carrying” something home, like chicken pox, flu, strep or any other infection.  Even though I had been vaccinated long ago for these things, as had been my children, not having a spleen makes me super susceptible to any infection, and depending on the illness, could be fatal for me.  And for that reason, I had to have a plan if we received a note from school, that another student had a contagious health problem.

Ok trolls, you are on.  I am talking about my children now.

I have not seen my daughters since February.  I had plans to see them for the birthdays, and Easter break as our custody agreement states.  But given where my daughters reside, and where I reside, flying is our mode of transport.  We all live in areas dealing with this virus.  But with my health issues, I had to make the difficult decision, to postpone visitation plans, which my daughters understand, because they know my health background.  They have witnessed me be rolled out of my home at 4am into an ambulance, and hooked up to all kinds of machines and tubes.  They know my risk.  I am lucky.  I still have various means to communicate with my daughters, especially video.

My hopes are, that within a couple of months, this situation will be under control.  I am only listening to the experts, in other words doctors, as I have been nothing but disappointed in nearly every politician who has either blown off the concern, or skewed facts and decisions.

I want my daughters to stay safe.  I want to stay safe.  I have a custody order.  A custody order is an agreement, but when both parents can agree that an exception needs to be made, and is in the best interest, it can be done without the need of a judge to get involved.

For more information, I would refer you to the website for Fathers For Equal Rights (and I would apologize because custody issues affect both fathers and mothers, so this situation is gender neutral, and the information listed on this page applies to both parents).

Fathers4kids.com, go under the “visitation” tab, and refer to “visitation rules and guidelines.”

Or, you can just do the co-parenting thing, the right thing, and not worry about wasting all the time being combative.

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