Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

Repeal – Accepting No Less And What It Will Mean


Disclaimer – though this is a blatant political post, I want to stress that it is in no way intended to lean in one direction or the other, insult any of our governmental leadership other than the blatant failure to guarantee health care for each and every citizen of the United States of America.  Health care for all should be a right, and not a privilege simply for those who can afford it.

I belong to no political party as I detest attributes (I will not call them values because I believe most of our representatives value only the money that is accepted by them, from their lobbyists, that normally determine how each will vote.) of both parties.

Now that I have that off my chest, I must say that there appears to be some sort of encouraging news today out of Washington.  Senate leader Mitch McConnell has been quoted that efforts in dealing with health care, may just be heading to a bipartisan effort.  To understand what this Herculean effort means, look at the history.

President Obama approves the Affordable Care Act.  While Democrats do not argue that improvements need to be made to the ACA, over the next 7 years of Obama’s presidency, nothing major is accomplished in doing so.  During those same 7 years, Republicans concentrate only on “repealing” the entire act – no improvements, just complete repeal, and have nothing but empty promises to replace.

Elections are charged up with emotion, both parties running on the campaign promises to either “improve” or “repeal” the ACA, but now the Republican party is offering hints at replacing the ACA, because at this point, even the Republican party can see the same good that has come from certain parts of the ACA, while still recognizing the other problems of the ACA.  But with the election of 2016, one political party has complete control to make everything happen, the Republicans control the Senate, the House, and the Presidency.  Taking care of health care should be a slam dunk with the Democratic party basically having no say in the process.

But there is a group within the Republican party as I mentioned, that sees part of the ACA being a good thing.  It is another group though, publicly referred to as “extreme right wing”, that have put their foot down and said the entire ACA must go, anything less than that, and these certain Senators will not even vote along with their party to “partly” replace the health care bill with another.

Here is the thing.  All Republicans campaigned with the promise of Repeal.  The President ran with Repeal and Replace.  As it stands right now, someone is going to end up breaking their campaign promise.  Even the latest rumor, and actual tweet from the president, “if the current bill is not approved before the July 4th break, then immediately repeal the ACA, and we will replace later.”  That clearly is a broken promise by the president.  But for those who support “repeal now” and “replace later,” they put an asterisk by that comment by saying, the repeal would not take effect for a year to allow time to come up with a replacement.  Well, then that would be a broken promise by the government representatives who promised to repeal immediately (technically by the president also – until he found out how difficult health care was).

If you truly believe that the ACA could be repealed, and a replacement guaranteed within a year, then clearly you have not payed attention to this discussion for the last eight years, especially the last six months.  I also would have some beach front property in Las Vegas to sell you.

I want to make you understand, what is at stake with flat out repealing the ACA, especially without any decent and humane replacement plan.

Repeal the ACA and you…

go back to being discriminated against to qualify for insurance based on pre existing conditions

go back to life-time limits which for many can occur within the first week of someone’s life

higher premiums based on older age

will continue just as before the ACA, with the ACA, and today, to see increased insurance premiums

These four reasons alone are why the Affordable Care Act cannot be repealed 100%.  Just cancer survivors like myself, would automatically no longer able to get health insurance.  Sure, a certain party wants you to believe that pre-existing conditions will be covered, but refuse to accept that allowing high risk rates for us, would price us out of health care, these representatives will simply sit back and say, “not our problem.”

Recently, a story was published about a 3-year old boy, named Ethan Chandra, who had been born with a birth defect called Heterotaxy syndrome which causes a whole lot of complications internally with any or all body organs.  The bill for the corrective surgery for his heart was over $230,000 of which, covered under the ACA, only cost his mother $500.  Clearly, without the ACA, the family would have lost everything, and the child himself had the possibility of nearing  what would have been a lifetime cap.  And while our government argues over the merits of health care being a right or a privilege, even those against health care reform offered absurd and offensive comments directed at this poor child and mother.

Even with a Republican controlled government, I do not see an end to “repealing and replacing” the Affordable Care Act.  Sure, it is great that finally the Democrats may be included.  In all honesty, they should have been working on improvements even under the new president.  But now, if efforts of a bipartisan attempt fail, we may finally have representatives to come forward with the only proposal that will work, health care for all.  If I had to guess, an out of control premium and deductible would be replaced with a tax.  And while no one likes to hear the word “tax”, a set tax rate to cover health care is easily more controlled than greedy insurance companies.

We are the only industrialized country that does not guarantee health care for its citizens, in spite of us having some of the best care available in the world, only if you can afford it.  But no matter what health care bill gets passed, unlike the ACA, if there are problems, passing the bill is not good enough.  Improvements must be made.  So for all that want to point to “wait” times of certain countries, look at other countries who do not have that issue.  The system can work, and has worked with many countries having it in place for decades.

And for those who fear the term “socialism,”  I call bullshit.  You cannot be afraid of providing health care for everyone, yet support the fire department, the police department, ambulance personnel, and a whole list of other programs paid for by our taxes.  The only ones who are afraid of a “socialist” program like universal health care, are the ones that have the most to lose, insurance companies, and Big Pharm.  And just like the debate of legalizing medical marijuana as an option to Big Pharm opioid control, money continues to do the loudest talking from the pockets of our representatives who are supposed to be “of the people”, and “for the people.”

Do not repeal the Affordable Care Act.  Either fix it, or accept that the only humane, Christian (apologies to my atheist friends but unfortunately as one political party hides behind their religion, I have to call out their hypocrisy), and right option, is health care for all.

Cancer Survivor Day 2017


Today is Cancer Survivor Day.  And like millions and millions of others, I am one of those survivors.  In fact, this year marks my 27th Cancer Survivor Day.

These occasions are always a day of mixed feelings for me, because of those that do not get to celebrate with us today.  So it is important, that we do not lose the fact, that so many people were able to defy the odds, and beat their cancer.  Decades ago, cancer was an automatic death sentence.  Even back in the 1980’s when I was diagnosed with Hodgkin’s Lymphoma, the cure was not guaranteed.

For many of us, who were treated with such harsh treatments decades ago, have found ourselves fighting an ironic fight, fighting the side effects from the treatments that cured us.  We traded one fate with death, for another.  But because of us long term survivors, recent cancer patients are now treated with lower dosages with the same results, or even new medicines or therapies all together.  And as reported in the current issue of CURE magazine, the risks of late side effects for newer survivors is on the decline.  This is great news!

You may hear many of us say that we “do not want cancer to define us,” but in reality, it is unavoidable.

My battle with Hodgkin’s, along with the many serious late effects that I have to deal with, some on a daily basis, have taken “survivorship” to a whole new level.  From the day I finished my treatment, I learned that I will no longer pick my fights or challenges.  I will take each and every one with the same ferocity as I did my cancer battle.  I will take on employers, public figures, and have done so, with the frame of mind, “you will not beat me.”

And if there is anything I want people to know about me… I WILL NEVER GIVE UP!!!

My Biggest Fault – I Cannot Grieve


Something happened when I was twelve years old.  It had an dire impact on me, changing my life forever, and how things affected my life.  Combined with future events in my life, this “defense mechanism” that appeared, was then complicated with PTSD (Post Traumatic Stress Disorder) and what is commonly referred to in the cancer community, “survivor guilt.” For those that know me, have seen the late effects of this issue, and for those that have only seen the effect of those events, are often left to shake their heads in wonder.

I have no emotions.  Well, not exactly none.  But when it comes to crisis and tragedy, I show nothing.  I cannot explain why.  And I know it is not healthy.  While from an emotional standpoint, it is clearly not healthy, situations that I have been involved with, not dealing with emotions allow me to process things more clearly, logical if you will.

That winter, I had just turned 12 years old.  And just days later, in between the Christmas and New Year’s holidays, I would lose three close relatives.  It is hard enough for a child to deal with the death of one relative.  But three in less than five days, with subsequent funerals, were definitely overwhelming for me.  And no one could see it.  From that point on, “death” was just something that happened.  We move on.  I do recall crying at the first funeral, confusion during the second.  But by the third funeral, I felt nothing anymore.  This defense mechanism was firmly in place.

I will say that this defense mechanism has been pivotal however in certain situations of my life.  But by the same token, the price my health has paid, both emotional and physical, has been high.  Relationships.  Stress.  Guilt.  Physiology.  I am riddled with scars.

When I was diagnosed with Hodgkin’s Lymphoma, that very defense mechanism left me no room to believe nothing less, than I would be cured.  Any negative possibility.  The barbaric testing and treatments would not deter me.  I was not scared.  I was not sad.  Sure, I dealt with some initial anger at first, until the mechanism kicked in, reminding me that I needed to be focused, to get through this.

Years later, one of the most influencial people in my life passed away, following her diagnosis with a second cancer to have dealt with.  With no emotion, I concentrated on getting my grandmother all of the help she could get, because I believed just as the first cancer she dealt with, we needed to stay focused on what needed to be done.  Unfortunately, she knew something I did not, and that was by design.  Her cancer was terminal.

The thing about my grandmother, she taught me, “take care of others before yourself.  Do not be selfish.  Be selfless.”  The day before she died, I actually visited with her.  Something was not right.  She did not have her focus as I had seen other days before.  She did not talk about what was on her mind, other than she was to start chemo in two days.  She had even gotten her hair cut short to prepare for the eventual hair loss.  The next day,  I got a phone call that she had been taken to the hospital, for fluid in her lungs.  I knew this was not a good thing, and I urged her that I would be on my way.  However, she knew that I was working with a group of children in our church youth group.  She knew what I was doing was important to the children, and important to me.  And this made her feel good.  She told me, my place was there, and she would be fine.

And so, I went through the day, figuring I would just go straight to the hospital after the event.  Instead, a phone call came to the church, answered by one of my assistants.  She was in tears as she handed me the phone.  I do not even remember the conversation.  I know that my grandmother had died.

That mechanism was now working very hard to squash the grief of the greatest loss I had experienced in my life.  I hung up the phone.  Walked passed my assistant, who I remember telling me, that she would handle everything.  Yet, I ended up back with the children, and at the conclusion of the event, went to the hospital.

This issue that I have, would become an even stronger force, as friends and relatives came to the funeral.  Sure, I heard all kinds of wonderful stories about how wonderful she was, and what myself and her other grandchildren meant to her.  Not one emotion.  Instead I was focused on how I was going to get on in my life without the person I considered my “moral compass.”

Several years later, this issue would be recognized again, but this time for the good.  My first wife had been in a head on car collision.  Of course I was attending another youth event that I was running.  But this time, my advisors insisted I leave.  I arrived at the hospital to hear everything that was going to be done to save my wife.  After talking to the doctors, my attention turned to “what’s next?”  I had to contact my employer, her employer.  I had to get to what was left of the car and see if I could get her belongings.  But when I saw the car, my focus was even stronger.  I pulled out my camera and not only took pictures of the car, but then travelled to the accident scene and took more pictures.  It was good I did.  The driver that hit my wife, was uninsured.  And those photos would be used in court.  Of course there was nothing but focus on my wife’s recovery.  My mother made the comment to me, “I don’t know how you are holding yourself together.”  Because I had to.  I did not reach out to anyone for help.  There was no time to be upset.

Unfortunately, these types of scenes would pop up again and again, complicating my PTSD and survivor guilt.   But by the same token, it is what got me through my most difficult times.

And with that, my biggest fault.  I do not show my emotions.  I do not release my emotions.  I do not grieve.  For over thirty five years I have been this way.  I am not proud of this “coldness” I present.  But when this defense mechanism continually assists me to get through every crisis and tragedy I face, I cannot fault this mechanism.  Many, if not most would strongly feel that the way that I deal with things is not only wrong, but unhealthy.  And therefore, jump to their own conclusions and alternative theories as to why certain things play out with me the way that they do.

At this time of year, I am reminded of one of my most painful moments, facing yet another tragedy.

2013 was a horrible year for me, but 2014 would prove even worse.  And in late May, my father’s health would turn rapidly, as he struggled against lung cancer.  At the same time, I was dealing with health issues of my own.  And I was dealing with issues surrounding my divorce to my second wife.  As my father’s health began to fail, as my closest confidante, my dad knew everything that I was dealing with.  But once he was declared terminal, I stopped burdening him with most of everything I was dealing with.  But there was one issue that cruelly, was going to be my most difficult matter yet.  Much too lengthy to explain in full detail in this already lengthy post, due to one of the legal issues concerning my divorce,  I was not only faced with the possibility, that I would not be there when my father would eventually pass away.  And that is exactly what happened.  I was only able to stay with my father until the last possible minute, by his death bed, where if I chose to ignore what needed to be done, I stood the extreme possibility of facing legal sanctions.  I said “goodbye” to him, knowing full well, I would not return in time before he passed.  No emotions involved.  I did what I believed I had no choice to do, and my father previously had discussed the likelihood of this situation with me.  The phone call came several hours later.  He had passed away.

These are just some of the situations that I have dealt with over the decades.  Some, have been within my control, and many have not.  But this defense mechanism that remains strongly entrenched in who I am, is what gets me through every day, staying focused on what I need to do, to make sure that things are done, and done correctly.

Perhaps someday, that day will come, that I can mourn.

 

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