Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

A Chapter Has Closed


Back in 2009, as my older daughter was preparing to begin first grade, our school district was in turmoil. The teachers were in the process of negotiating a new contract, and the school board had chosen some very unfortunate methods in dealing with the teachers and the negotiations. Someone from the school board felt it was wise, to take out a full page color ad in the local newspaper, stating the salaries of every teacher, guidance counselor, and school nurse by name. The intent was clear, to rally the community against the teachers, and against any opponents challenging school board members in the next election cycle.

It was a huge mistake for them. A sleeping and ignorant giant had been woken. Like most, up until that moment, I was like many, who had no knowledge of school district operations, and just exactly what is expected of a teacher, which is what makes them worth every penny they are paid (and this was before the constant school shootings we expect our teachers to die for, or be exposed to lethal viruses). If there was one thing about me I knew and despised, it was bullying. And I knew from experience not only when someone was being bullied, but what was behind it.

And so, I attended my first school board meeting, actually my first public meeting ever, just to see what was going on. That first meeting was all that was needed, to set me on a path I never saw coming, running for a public office. There were nine bullies on this board, five were going to be up for re-election, and all five needed to go.

There were several problems that I was about to face as I began the process of campaigning for one of the school board director positions. One, I HATE POLITICS! This was a war cry my campaign cringed every time those three words left my lips. But I was not a politician, and that was the reason why I kept repeating this credo. Another big problem was that our country is mainly a two party political system by majority, something our forefathers warned against (please note, there is a difference between understanding history and not being political). I was an independent registered voter. And with my state being closed for its primaries (being only able to vote for those in your registered party), an independent candidate has an uphill climb to get to the general election. I would have to swallow political “poison” and force myself to choose a side, neither of which I believed in 100% to have a chance. And even this decision was not mine to make as the incumbents on the board, were all Republican, who all had a grip on their seats for decades. Clearly I would not be able to unseat them as a conservative. I had no choice, but to run as a Democrat, and changed my voter registration to do that.

There was one final hurdle to get over. Other well known candidates had tried to go against these power hungry bullies, and lost. There is an expression, “strength in numbers.” That saying applied in this case. Often, only one or two candidates would run against the entire slate of the other party, clearly leaving them outnumbered, out-fundraised, and out-campaigned.

And with that, I met four of the most wonderful and diverse people, a tech guy, an accountant, a lawyer, and a retired school teacher. But we shared one thing in common, we all had a direct connection to our school district besides being a taxpayer. We were either graduates of the district or parents of students either currently in school or graduated. Our greatest quality amongst ourselves, we could communicate with each other, and respected each other. Better yet, spoiler alert, after all was said and done, we became great friends.

We came up with a campaign slogan and theme, from the least likeliest source, and least qualified, me. We were taking a step like none others to change this school board. We were taxpayers who wanted accountability, but we also had responsibility to the children to do what was best for them. And the current situation was not accomplishing that. Things were not progressing as they needed. And that is how I came up with “1st STEP – Students and Taxpayers Expect Progress.” And while as the least qualified on this slate, I was shocked, by group consensus, this was how our campaign would begin.

At this point, I still felt pure, in that my effort had nothing to do with politics, which I was fine with. My running mates were all registered Democrats, so I left the political crap up to them. I was focused on my targets, the bullies sitting on the board. I was not going to lose sight. And then this happened.

Our campaign had started to get the attention from the incumbents. This photo is the front side of a political mailer sent out attacking us. To be clear, I have had disagreements with people in my life, but never on this level, and by complete strangers no less. The intent was to imply that myself and my running mates and I had the support of the teachers, who clearly had been abused by the current board. This would come in the form of an “endorsement.” But the bigger issue, was the optics of this political piece, meant to shock the community. Oh, it shocked the community alright. Using a photo, depicting violence, involving a school body, sent outrage of inappropriateness across the country. That’s right. The local news picked up on this, and the bumbling interviews they did with the incumbents running for re-election showed their plan had backfired, badly. Though, they still stood by their effort.

This was the catalyst that finally brought a movement of change and decency to our school board. Unfortunately, all five of us had lost our bid for school board, but collectively with less than 500 votes, three of us losing by less than 200 votes. We had gotten the attention of the voters in the district.

We would take one more shot two years later, with our relentless efforts to expose what we thought was wrong with the district operations, and what we could do to improve them. Two of our candidates won their seats that year, with a third, just barely losing, again by a small margin of votes, that all it would have taken were some people to think their vote would have counted, it would have. She would run again, and this time not only make it on to the board, but become board president. In fact, the entire board has changed over.

I have since bowed out of politics all together. Though, with students still attending school in the district, I feel I still had a right to express my concerns, and when needed, speak up in defense of our school board. With the boorish behavior of so many attending school board meetings speaking up during public commentary, as was typical, those who felt the board was doing right, either did not attend, or did not feel the need to speak up. Most figured that these negative speakers were doing themselves their own disservice, and nothing further needed to be said. To a degree, that was true. But just as I got involved back in 2009 when my daughter started school, I was not standing for this abuse in my daughter’s senior year.

I do not envy my fellow campaign members, in their roles of volunteerism, that’s right, their position on school board, subject to all kinds of verbal harassment and abuse, was volunteer. Two have since passed away, and one is currently a local judge. I still keep in touch with those who are still with us, and consider them friends. Wherever they all end up, I will always say proudly, I knew them when they started their ride.

But now, it is time that I close this chapter for me. And it was a fun ride.

Remembering Nancy


Though I never asked her how old she was, I know Nancy was close in age to me, graduating from high school in the same year as me. Her daughters are slightly older than my daughters. She was a fellow long term survivor of Hodgkin’s Lymphoma, like myself. Also, similar to me, she dealt with a lot of serious health issues related to her treatments for her Hodgkin’s. That is where the similarities will end however. Last week, as has happened with so many other of my fellow long term survivors, Nancy passed away, apparently suddenly. It had been oddly noticed by several of us, that she seemed to be going about her day (as normal as she was able to), as she completed her “Wordle” puzzle and posted her results.

Some time after that, I had begun receiving messages about Nancy’s passing. Clearly, all of us shocked and saddened by someone who not only had so much to offer, but gave everything she could to help all of us. I never got to meet her in person, but she had always offered support to me with all of the surgeries I had faced in recent years, and of course, encouragement through my divorce.

Besides the comfort of knowing that Nancy is no longer struggling with the health issues from her Hodgkin’s past, there is an unbelievable outpouring of kind words being offered by so many, fellow survivors, friends, and family who truly tell the story of who Nancy was, and what she meant to all of us. I would like to share some of those comments (presented with anonymity for privacy reasons).

“So kind and generous…”

“Her legacy will live on through her advocacy…” (besides being involved in peer support with fellow survivors, Nancy was a board member of Hodgkin’s International, a non-profit dedicated to education, advocacy, and support for patients and survivors of Hodgkin’s Lymphoma)

“Someone like me…who understood (what we go through as long term survivors)…kindred. Her faith and patience and wise words calmed my mind and heart often in tumultuous times.”

“A strong spirit… wonderful outlook on life.”

“Grateful for the gift of her in our lives.”

“A beautiful friend.”

“She was good at keep track of us…”

“A big loss for our community.” (her participation on our support pages was invaluable and irreplaceable)

There are literally hundreds of kind and beautiful words and sentiment being offered for Nancy and her family. The grief of her fellow survivors and friends can only mirror in comparison to the family that knew her best and forever in their hearts.

To my fellow long term survivors, each survivor that passes is hard. The upside to having been blessed to know Nancy and having been touched by her kindness and support, is that when the time came, we feel the loss, and yes, we find that we too, may question our longevity. But if there is one thing that we can not only remember Nancy for, but honor her, in that we need to continue what we do every day, for every day that we get to have. Sure, we know the many circumstances we must deal with, but Nancy showed that we can also enjoy life each day, one at a time.

Chasing Mortality


Ernest Hemingway once stated, “write drunk, edit sober.” While Hemingway definitely liked his drink, there is nothing to indicate that he ever wrote with this strategy, referred to today as “having no filter.” The concept is intentional. Take what you are trying to write, remove all inhibitions, and just let loose with your thoughts, organize them later. As a writer, I can have several thoughts in my head at once, and unless I make a note of them all, I will lose at least 25% of them. But with all the thoughts written down, the mind now “empty” or sober, everything can be arranged and edited to make better sense.

I am not writing drunk today, though I may attempt Hemingway’s strategy at some point just as an experiment. But my post still may seem scattered and unorganized today, unfiltered. There will be no editing or “sobering” up. The truth is, I could not be any more clear of the thoughts in my head right now.

I was in the middle of writing a different post, one of reflection, a period of time that has now come full circle for me (and I will finish that post eventually), when the news came across my feed, that a fellow long term survivor of Hodgkin’s Lymphoma had passed away. As I have done for others that I knew, I will post a tribute for her soon. But rather, this post is about the impact her passing has on me, and the many thoughts running through my head.

I believe she was younger than me age-wise (a gentleman never asks) based on the fact that she had children approximately the same as I have (and I started late). But I do believe she was one of many who are ahead of me in survivorship years. As survivors, we shared the circumstances of having to deal with late side effects from the treatments that cured us of our Hodgkin’s. Some of these issues were similar, others were different. The fact is, the news came this morning suddenly, as if unexpected. How can I say that with any amount of certainty? While she was actively dealing with some health issues, and had issues related to her cause of passing, neither seemed of imminent concern at least to some of her fellow survivors. But yesterday morning, as she was known to do every day, she shared her “Wordle” score. Some time after, she passed.

To put my experience in perspective, I have spent nearly all of my 32 years of survivorship, supporting other survivors. Over that time, I have seen having nowhere to turn to for help with our issues to finally having medical resources but limited enough that still too many cannot get the help they desperately needed. Today, there is an actual organization dedicated to support of Hodgkin’s patients and survivors, called Hodgkin’s International, and it really is international in its reach. Not the American Cancer Society, or the Leukemia and Lymphoma Society which are more popularly known which where we survivors are basically ignored, but Hodgkin’s International is finally getting the word out, and the support we have been waiting to have, for decades.

My first experience with survivors passing, came early on. Survivors having these “unusual diagnosis” for someone our age, not necessarily connecting the dots between survivor late effects and what someone was dealing with. Because of this ignorance, some were left unprepared for complications that would arise from even the simplest of procedures like a routine colonoscopy.

Then as the years went by, and more of us began sharing our experiences, enabling us to advocate and educate the doctors we were dealing with, that they were not taking care of a text book patient. If we were lucky, our concerns were listened to. But even if they were listened to, in spite of a surgery or procedure being successful, a last minute turn such as an infection, led to sudden tragic endings. My fellow survivor Peter Perin of New York was the first patient who suffered this fate, and became my reference point, to any doctor that treated me. “You must be prepared for anything, including sudden infections.”

Again, more time has passed. More of my survivors are finding the help they need. Sadly, there are still so many more that do not. But with all the peer to peer support, to share with doctors, at least we are able to advocate for our care, which I believe is contributing to further survival for many of us. Still, if you have followed “Paul’s Heart” long enough, I still say goodbye to so many more.

Which brings me to the final phase of my survivorship at least, when the body just cannot take anymore. Up until last year, I believed survivorship was just a matter of going to doctor appointments, getting our ticking time bombs fixed or monitored, and advocating for ourselves. Sometimes, our bodies just decide it is time. No matter how much we try to prevent, fix, prepare, ultimately, when the body says “that’s all she wrote,” that is it.

Last year, one of my closest survivors of three decades passed away suddenly. She had plenty of issues that she had to deal with, but overall, no one was expecting her to pass away on a day that had different plans, lunch with friends. Yesterday, another survivor, in similar health, suddenly passed.

I have made a huge deal over the last two years about my concerns and mitigative efforts in avoiding Covid19, the efforts to see my children as much as I can, and really just enjoy life. Because, although many feel that me knowing my odds, and living my life based on those odds, is being a negative person, it is really quite the contrary. I have so much to live for, so much more that I want to do. And no matter how diligent I am with my care, my ride could be over just like that. If I can be arrogant at all, it is with this thought, my time will go on, it is not my time to pass on. I will let my body know when it is time.

In reality, I know it does not work like that. Boy do I know that. But I will continue to take care of my late side effect health issues. I will relish every moment I get to spend with my daughters. I will follow the recommendations of scientists who are doing the best they can to get us through this Covid19 crisis, about to flare up again. These are the things that I can do.

To quote Danny Devito from his character “Eddie” in Jumanji: The Next Level, “getting old is a gift.” Yes, I am aware of the things that have been, and are happening to my body. And they are not good. But I go through every day, with the intention of doing all I can to see the next tomorrow, which I know is up to my body to decide, and each day is the best gift I can give myself.

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