Paul's Heart

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.