Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Politics”

05 Sep 2023

Birth Of An Advocate


If you have ever been in a doctor’s office, not feeling well, there is a good chance that you have heard this question posed to you… “so when did you first notice…?” Three years ago, I can pinpoint to the day, that a condition that I was aware of with my cancer survivorship, finally needed to be addressed. Anyone with heart issues, regardless if cancer was a predecessor, knows at times, breathing can be difficult. If you have a valve issue, as I did, once it hits a severe point, you practically collapse or actually do if not treated quickly. That is exactly what happened to me, in August of 2022, my aortic valve let me know, it was finally time to get dealt with as I was collapsing while crossing a street.

I am not sure what prompted the need for retrospect, but a recollection and telling of a story, of my early days as a survivor of Hodgkin’s Lymphoma, answered a question I had never really thought about, I just accepted it as a fact of who I was. The day I became an advocate.

I had just completed my treatments for Hodgkin’s, both chemotherapy and radiation, had gotten married, and while happy with my current employment, I felt I wanted more. My stepfather, an insurance agent for a nation wide insurance company (I am not actually saying the name), and had offered me an opportunity to come work for them. I was fairly personable, and working a commission paying job, I felt would really be a huge opportunity for me. So I hit the books, to study and test for my license which I excelled at, aced my interview, and passed my physical, which was not bad for someone who had just gone through a two year cancer battle. Then a phone call came.

“Hi, it’s Jim (he was the district manager). Listen, everything went well for you, however, the company would prefer that you were in remission longer from your cancer. I’m sorry. Maybe a few years down the road you can try again.” That is exactly the conversation that was had. I will never forget the words. I was being discriminated against, because I had cancer. It did not matter that I was in remission, which was the hardest thing I had ever gone through in my life.

I was fuming. My stepfather asked how everything went, he of course was disappointed, but he was not going to argue on my behalf, he needed his job. I reached out to my counselor at the hospital, met with him, and just released a wave of emotions. Was this how my life was going to be after cancer? Everyone and everything was going to be held against me, because I had cancer? What the fuck did I fight so hard for, if everything was going to be against me? His name was John, and he encouraged me, that I could try to file a complaint with the Department of Labor in Harrisburg, Pennsylvania. It was a long shot. I had no money to hire a lawyer, but John assured me, he was willing to stand by my side and travel with me.

In Harrisburg, there was John and I, a representative from the DOL, and of course the district manager and legal representation from the insurance company. There was no money involved as I was not seeking any. This was about principal. I did not want the company to get away with what they had done. There was a fatal flaw in my argument. The state’s rep explained, “their manager claims that they never withdrew their offer of employment, that you withdrew your application.” I denied this, and it was clear the DOL believed me. But still, without any proof, it was my word against his. I had lost. Or so I thought. The agent from the DOL began…

“It is our duty to inform you, that while there is a stalemate involving the conflict between Mr. Edelman and your company as to what happened, we need to let you know, that as of July 26th of this year (1990), any action of discrimination based on health is illegal as stated in the Americans With Disabilities Act. What this means, is you can no longer ask a perspective employee about their health, or require a physical, until you have deemed them of the status, intent to hire upon passing said physical.” And with that, the agent placed a copy of the ADA in front of the lawyer and continued, “you will need to make the correction in your hiring process nation wide as this is now law.” While the ADA requirement was brand new, it was not well known. And this company was to become one of the first, faced with immediate corrective action to be taken. I may have lost my battle, but I won the war.

That was my moment, when I knew, that I had discovered a purpose, being an advocate. It is never about money for me, NEVER! And whether it is helping a cancer survivor navigate health care, assist with international adoption, heart disease support, protecting public education, or providing support to parents struggling with divorce and custody, I will be there. This is who I am. I am just one person, so I do this on a much smaller scale. But for me to be able to help just one, like one person, John, helped me, that is what I want to do, and I do not care who you are.

Take a story that came across my feed yesterday. It was a Dad, from what I could read through the emotions, facing the loss of his rights as a father, but also at the risk of losing any rights of custody. There was a problem. I was too distracted by the way that he wrote his post. Clearly he was upset, but his thinking was so outraged and filled with irrational thoughts that if he was to appear in front of a judge anytime soon, he would definitely lose everything.

While the terms he was using in his “claim” were purely political, and on the verge of conspiratorial, I wanted him to realize, that he needed to get back to the basics of what was important in all this, his child. He could not afford to dwell on how he felt lawyers and judges might rule based on political biases and beliefs. If he came off as anything less than a concerned parent, who had rights to a natural relationship with his child, and instead seen as a danger, he would lose it all.

It took a few back and forths, but I finally got him to stop using certain political terminology, and instead, listen to how to present what would not only be in the best interest of the child, but in his case, allow him the efforts he felt he needed to have in place to “protect” his child.

I advised him, he needed to modify his custody order to achieve what he wanted to do. This was not going to matter if his ex was going to try and get full custody and take his rights away. As long as he remained calm and focused on what was important, the child, a judge should never take that away from him. So, he needed to put that aside. Instead, he needed to make sure, in his order, that he had 50-50 “legal” custody, which is different than physical custody. Legal custody gives both parents the right to make decisions, equally, that both should have a say in anything needed to be taken care of with the child. The most important part in his situation. He needed to make sure that it was clearly written, that nothing medical could be administered or performed, without both parents approval and in the case of an emergency, only if ALL efforts were exhausted in trying to reach the other parent had failed, would that allow anything to proceed.

I know first hand, that trying to argue emotionally and fired up in front of a judicial official at any level, is guaranteed to fail. And that is exactly where he was heading otherwise. It did not matter if I agreed with his position, the child, and the intentions of his ex. It did not matter if I agreed or disagreed with his politics, religion, or morals. This is what an advocate does.

I have no idea how his situation will turn out, as he has stopped communicating. I honestly doubt, given his “temperature,” that he would take my advice. All I know, is I did all I could, provide a voice of reason, from someone who had been there, done that.

In my 35 years of survivorship, this is who I am, whether it was health related, school related, adoption related, or custody related, even employer related (I was a good union shop steward too), I was always about support, protection, and doing what was right. Money is never an issue. Just do the right thing, and you will never have to deal with me.

Posted in Adoption, Animals, Bullying, Cancer, Education, Family and Friends, Inspired By..., Politics, Recreation, Side Effects, The Heart | Leave a comment
04 Jul 2023

On This Date, 1826


Happy 4th of July everyone! Hopefully by the end of the day, everyone has all of their digits on both hands, and no one is missing a fur friend who may have run away from all the “bombs bursting in air.”

As a Dad, sure, I took advantage of holidays to have fun wherever my family awas, but I also wanted my daughters to learn that the holidays were more than just some leisurely time off. From Martin Luther King, Jr. Day to New Year’s Day, they may have had the day off from school, but I knew that some day, they would become adults, and more importantly, registered voters, it would be important that they understood history, that in most cases impact their lives today.

Though not officially a federal holiday until 1870, and became a paid federal holiday in 1941, the Continental Congress voted on July 2, 1776 voted for independence from England, and two days later, July 4th, representatives adopted the Declaration of Independence, written by Thomas Jefferson. There were disagreements when our “Independence Day” actually should have been celebrated, but the date became July 4th.

Much has been made about why pilgrims came to America, escaping from religious control, but freedom from/of religion was only a small part. Once settled in America, bigger issues came to front, such as realizing colonists were nothing more than a source to wealth to Great Brittain, not being considered their own citizens free of England, and the impositions of several laws, making it even more difficult for colonists, is what led to the Declaration of Independence.

That is basically the simplified nuts and bolts of July 4th. Obviously there is more to the historical importance, but each year, as we celebrate today, a majority of Americans forget how we got here, as evidenced with the continued conflation between “church and state”, with religious influence once again finding its way into determining the laws of the people. There are reasons there needs to be this separation, and that is one of the reasons colonists fled England.

But one of the few unrealized significances of this date occurred fifty years later, exactly. On July 4th, 1826, both founding fathers of the Declaration of Independence and former presidents, John Adams – 90 years old (#2 – Federalist) and Thomas Jefferson – 83 years old (#3 – Democratic-Republican) died within hours of each other. Some claim this was a coincidence, some claim “divine intervention.” Really, how freaky is that two presidents, founding fathers would not only die on the same day, but on the date of the signing of the Declaration of Independence, but also, the 50th anniversary of that signing. Some believe, and if you have ever witnessed the passing of a loved one, that both held on as long as the could, their desire to reach that specific date, and once reached, felt they could “leave.” Adams and Jefferson were friends, became adversaries, and in the end, were once again friends. Their passings on the same day, could not have been more appropriate.

Of course, we would not be Americans if some sort of conspiracy was not mentioned. Such as relatives and others giving experimental medications to the presidents to buy a short amount of time for them to reach the date, or worse, euthanasia once the date was reached. And no, “Paul’s Heart” is not promoting this conspiracy or any conspiracy. Just repeating what can be read on History.com.

There is a movement today, like no other, to forget our history. It was bad enough that teachers were being forced in this direction years ago. But now we have people running for office, even the highest of offices, the President of The United States, pushing that same agenda. Once again, religious decisions are being pushed onto citizens, and rights that have been in existence since before I was born, are now being taken away. Our history tells us what we fled from. Our ignorance to learn or teach our history, is causing us to repeat, or return to the conditions or forefathers did not accept.

So as we make today all about fun, the beach, picnics, concerts, hot dogs and apple pie, and of course fireworks, let’s try to remember, July 4th is a really big deal, something we should never forget. Thirteen years later, the backbone of our country, the Constitution of the United States was written. And though many amendments needed to be added, the preamble or introduction made it clear, our country was not perfect, though we strove to be so, and we would have to work hard to not only get there, but keep it, all based on one statement, and I am quoting from https://constitution.congress.gov/constitution/ ,

“We the People of the United States, in Order to form a more perfect Union, establish Justice, insure domestic Tranquility, provide for the common defense, promote the general Welfare, and secure the Blessings of Liberty to ourselves and our Posterity, do ordain and establish this Constitution for the United States of America.”

Do you see it? “We the people.” That is us. We want justice, peace, protection, well-being (similar to happiness), liberty, and prosperity. I know when I was in elementary school, some fifty years ago, learning the history that was taught back then, the accurate history, not what is being taught to be scorned today, our country was on that path to building that more perfect union. I am hoping that we can get back on that path again some day.

Posted in Adoption, Education, Family and Friends, Inspired By..., Politics | Leave a comment
27 Jun 2023

I’m Going To Touch The Cup


There is a tradition in sports, not touching the championship trophy until the end of the championship round is complete. Many believe you jinx the team by even taking a picture of yourself (or worse one of the actual players taking a photo with the trophy), before the first game of the series has begun. Victorious players will do anything they want with the trophy from drinking champagne from it, to placing their infant child inside, to travelling the world, after they have won. But no photos before. Well, I am about to do something equivalent, but as I do, I am going to rush over to the nearest piece of wood, and give it a good ol’ knock.

I have managed to live in a world with Covid, without getting Covid. Excuse me while I quickly run to knock on wood. I am one of less than a handful of people I personally know who have still not contracted it, sadly more than three times the people I personally know who died from it, including my younger sibling.

Unlike some who actually go as far as to brag about how many times, or strains that they have been infected by, I do not consider my statement bragging at all. It made me feel very uncomfortable to hear so many exercise bravado, no fear of Covid, a disease that killed millions. I have never heard one cancer patient ever take that kind of stance.

I want to be clear. I am in no way ridiculing or mocking anyone who contracted Covid whether at the beginning of the pandemic, or even recently, whether it was not of their own doing (someone selfishly exposing them to it), or what was called “Covid fatigue,” (“I need to do this one thing.”), or first responders and medical personnel who had no choice, because of the careers they chose to get into.

But I will continue to express my frustrations with those who chose to argue conspiracy over common sense, political grievance over professional medical advice, fake patriotism over empathy, denial over acceptance and action.

Oddly enough, the group of people I personally knew, at the highest level of risk, fellow long term cancer survivors, actually fared very well, long before there were vaccines and treatments, and through supply shortages. As survivors of cancer, many of us are more in tuned with the risks we face, and react when something does not feel right. Knowing how dangerous this situation was to us, caused us to act more swiftly. As I said however, too many could not outrun Covid, either because it was brought to them, or for just one moment, a sense of false security or not, guard was let down. To be honest, I really do not believe I will be able to outrun Covid forever, anymore than I can outrun a common cold or the flu, something that I typically do not have to face, unless it is brought to me.

But as this crisis devastated the world, like spilling grape juice on a white carpet, I was not interested in “why” it happened or blame who spilled it. It just needed to be dealt with quickly, before the stain got too great. The problem was too many people were more interested in blame or accusations, instead of listening to voices of reason. And as one who has avoided Covid thus far (there I go to knock on some more wood), and to be clear, I am speaking only in my case, not for anyone else who has avoided Covid yet, or had minimal number of infections, only in my case, I am saying, the ones I relied on for the advice to protect myself, were the ones who got me to this point.

I mentioned risks. Was I in fear? Absolutely. I was a 33 year cancer survivor with a compromised immune system, and major cardiac and pulmonary issues. But did I live my life in fear these last four years? No. Did I lose anything by following the recommendations? No. With all the health issues against me, was I able to reach long term goals that I was hoping to live to see? Yes.

Did I avoid risks? No, I managed them. I weighed them. I decided which risks were worth taking, and which ones I would tempt fate. My doctors knew/know, a Covid infection would kill me (at least prior to vaccines and treatment availabilities). Yet, on three separate occasions, I underwent three major operations, two for my heart, and one for my carotid artery, in the belly of a beast (in a hospital that is), engulfed and drowning in Covid infections, along with the multiple follow up appointments. But the preventative guidelines in place, protected me, and they worked.

Some may have been cheering for me to not have visits with my daughters during Covid, whether I travelled to them, or they came to me. Believe it or not, Covid gave me opportunities to actually see them more often than I otherwise would have. And at no time, did I or my daughters contract Covid. All because we followed the recommendations.

I went to the grocery store and pharmacy. I supported local eateries, admittedly doing take out. I have to admit, I have not had interest in dining in, not because of current Covid conditions and infection rates, but rather learning how deficient many places were with cleaning (as we saw busing and table cleaning increase during the early stages of Covid, now tables and cleaning returning back to the regular unsavory conditions, under the guise of insufficient staffing… that is what really skeeves me out more than the Covid risk at this point).

I travelled with my daughters, and we did it following the recommendations. And it worked. I was more concerned with my goals that were ahead of me, than I was fighting over a president, any inefficiencies in preparations or assistance, claims of loss of freedom. I trusted my doctors and I cared about others. That was important to me. So what were my goals?

Before the pandemic, I had a list of long term goals, difficult as they were expected to reach given my health issues, that I wanted to see. The closest at the time, were seeing my daughters turn 18, and graduating high school. The last thing that I wanted was to be taken out by a disease named after a bad beer (apologies to those who actually like Corona, but I do not care for it).

There are three graduation photos. The first two were for my older daughter, because she had two different graduations, and one of those was held indoors, during a new wave of localized infections last year. The auditorium was packed with several thousand, barely anyone masked, except for me and a handful of others. Again, just like the surgeries, this was one risk I felt I needed to take. Of course Covid was still around a few weeks ago as my younger daughter graduated, but those graduations were held outdoors.

There is a huge difference between trying to prove a point, and making the decision when a risk was worth it. I have zero regrets about my decisions, and as I continue to wear a mask indoors, if that triggers anyone, tough shit. I recently witnessed a bank teller being harassed as she chose to continue to wear a mask. I do not know why she does, it is none of my business. But I respect her choice. As I wrote recently, my daughter works with a co-worker who is battling cancer, and chooses to wear a mask to protect her co-worker, as her co-worker wears a mask also.

Like everyone else, we are all tired of Covid. We had limited time and efforts to eliminate it, but too many chose to either deny it or efforts to curtail it, so now we will deal with it forever. It is now clearly about individuals choosing to do the right thing for themselves, and hope that thoughtfulness and empathy will some day prevail. Though my list of long term goals has shortened, my next milestone is three years away, a college graduation. I know what has gotten me to this point, and as they say, “if it ain’t broke, don’t fix it.” I did not think I would set foot into a movie theater again, but I had a gift certificate to use. Pretty sure my concert days are over since ticket prices are now in the range from car payments to mortgage payments. The point is, I am doing what I want and am able to do. Just to make sure, I am going to knock on wood once more. You all be safe too.

Posted in Adoption, Bullying, Cancer, Education, Family and Friends, Inspired By..., Politics, Recreation, Side Effects, The Heart | Leave a comment

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