Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

Normal Life – Peter’s Story

This is Peter.  Peter is a fellow Hodgkin’s Lymphoma survivor like me.  He also deals with late effects from the treatments he received decades ago.

Peter Fox is a contemporary artist whose work has been exhibited throughout the United States and internationally. Diagnosed with Hodgkin lymphoma at age 17, he was treated with mantle radiation and cured. He lives in Queens, New York, with his wife, Cibele; son, Sam; and their dog, Nikki. When not in his studio, he loves being with family and growing giant sunflowers in his garden and pineapples on the windowsill at home.

Recently, he published his story in a quarterly newsletter, “Bridges”, published through Memorial Sloan Kettering Cancer Center (as I have done also).  I asked Peter if I could share his story on “Paul’s Heart”, and he said yes.  So, here is Peter’s story, “Normal Life.”

Normal Life by Peter Fox

“A branch which has been partner of the tree’s growth since the beginning, and has never ceased to share its life, is a different thing from one that has been grafted in after a severance. As the gardeners say, it is of the same tree but not of the same mind.”                         — Marcus Aurelius

Ten years after treatment for Hodgkin lymphoma as a high school senior, I was told I was cured and to go live a normal life. I took it to heart and did my best to live from that moment as if nothing had really transpired at all. I accepted no physical, emotional, or psychological limitations and rarely told the story except to those who encountered scars. I was embarrassed to mention it, like complaining about a skinned knee. In hindsight, the normal life advice and my response to it were both pretty absurd. I’ve struggled tremendously with alienation, anxiety, and depression from the experience but never sought real help. While I was more health conscious than others and had many false alarms about lumps, infections, etc., I always suspected it was hypochondria and a personal failing. It never occurred to me in the 35 years following radiation treatment that my skinny neck and bony torso signified more than a regrettable, congenital laziness regarding the gym.

I didn’t make a clear connection between cause and effect until a few years ago, when long-term physical side effects of treatment (stooped posture, dizzy spells) began to impact my life. It was after a scary episode of double vision at the playground with my son — I thought I was having a stroke — that I first searched the words “radiation treatment long-term effects.” Google led me to the sudden awareness that there were a whole raft of health issues associated with radiation treatment, and then to Hodgkin survivorship groups, which in turn directed me to the late effects clinic at MSK.

I have difficulty thinking of myself as a survivor. We all survive every day, and others face greater obstacles daily than I ever have, regardless of health. Though in denial about the physical side effects of my treatment, I always knew that my entire adult awareness and engagement with reality was shaped, for better and worse, by my cancer experience. Confrontation with mortality creates its own focus and set of priorities. Mine took place on the cusp of adulthood and thus was foundational. Pursuing art as a serious career followed from the news that I was cured and had a future to prepare for, something I hadn’t allowed myself to expect. I’d drifted until then, directionless, commitment averse, bags packed, waiting to fall. But I didn’t fall, and my truth is that the view from the edge is more wondrous, sublime, and beautiful than I can begin to describe. I’m lucky every day. Even if I could erase the rest, I’d never give that back.


My Daughters’ 1st Amendment Rights

The 1st Amendment to our constitution reads as follows:  “Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.”  These things are guaranteed, freedom of speech, freedom to peaceably protest, freedom of press, freedom of religion, and the freedom to complain to the government.  This applies to ALL United States citizens.  I repeat, this applies to ALL US citizens.  While there are limitations to the 1st Amendment (not being allowed to yell “fire” in a crowded theatre, hate speech, etc.), there are no limits (including age) as to US citizenship.

Children born in the US or on US properties, are born US citizens.  Children adopted internationally, as were my daughters, who are naturalized through processes at a US embassy of the country adopted from, or go through processes of citizenship back on US soil, ARE ALL US citizens, no matter if 6 months of age, 12 years old, or 40 years old.  But I want to stick with the fact, that children are considered “citizens”, which means that they are also guaranteed their 1st Amendment rights.

There is no age limit to be able to speak freely.  Yes, they must be 18 to vote.  Children in most states must be at 16 years old to drive a car.  Adults must be 21 to drink alcohol and children must only be 18 to smoke tobacco products.  Gun ownership has its own age rules and it is only getting more confusing.  But to stay on track on this post, there is no age limit for the 1st Amendment.

Tomorrow, March 14th, is the first of three planned “protests” to bring attention to something that has existed for decades, but brought to national attention twenty years ago as a boiling point that should never have been reached, violence in schools that led to the massacre at Columbine High School in Colorado.

While many people want to point fingers and blame at weapons of choice, the thing that cannot get lost, while the spotlight is on the most current event, is that for twenty years, our country, our government, and even we as citizens, have done nothing to reverse the direction that violence in schools have taken.  Even the slaughter of kindergartners and 1st graders at Sandy Hook was not enough to get more of a usual response of “thoughts and prayers”, talk about it, forget about it, repeat.

But for some reason, there is a different feeling coming from the senseless tragedy that occurred a month ago in Parkland, Florida.  As usual, the adults are doing the same thing as always, “thoughts and prayers”, blame, our government reps talk about it, and as usual, it appears we are once again at the same point as always, ready to move on, to wait for the next massacre.

What does not help, is that our President took to two televised opportunities, one, meeting with those affected by violence in schools, and the other in a meeting of senators to challenge them to come up with a solution or solutions that he would approve, acknowledging how dire things have become.  He promised families something would be done.  The president called out representatives who could be afraid or intimidated by the National Rifle Association.  It seemed like things were finally going to be going in the common sense direction.  Strict and enforced background checks, increased age limits for long guns to match handguns, banning bump stocks.  We all saw the intent and heard the hope from the president.

But he lied.  Either he had no intention all along, or after meeting with the NRA, he “changed” his own mind, which is kind of ironic considering he had just called out several senators on television for not standing up to the NRA.

The bottom line, here is where we are at following the tragedy in Florida, back at the beginning of the next cycle, waiting for the next act of school violence.  And I am purposely writing it that way, violence.  Because I do not care what weapon is used.  We as adults are letting our children down while we worry about ourselves and what we want.  In the mean time, more children have died in school violence.

The definition of insanity is doing the same thing, over and over and over and over and over, and expecting a different result.

I was bullied all throughout elementary and junior high school so I understand violence in school.  I graduated in 1983, probably one of the last years that school violence was not put in the national spotlight.  Fights and other acts of violence were not dealt with using weapons for the most part.  But a few years later, my high school had metal detectors installed after weapons had been discovered being brought to school.  Now, many schools not only have metal detectors, but Student Resource Officers or policemen.  Is it really not that obvious, that violence had increased to the point that armed police officers now patrol our schools, instead of finding a way to deal with the violence itself before it gets to the point of an actual event?  At this point, without addressing dealing with the violence, dealing with the weapons of choice is a moot point.  And while we as adults continue to spin our wheels, protecting our own interests, our youngest citizens tomorrow will exercise their right to speak an peaceably protest.

For 17 minutes tomorrow, March 14th, many students, none forced to do so, will exit their classrooms, and assemble outside, to remember the 17 victims in the Florida school massacre a month ago.  Yes, it will get a lot of media attention.  And that is the point.  The adults, our government have already moved on.  Parkland is now history.  But it is not history, and tomorrow children will remind us that we have not done enough, and the children have not forgotten.

Seriously, as a reader of this post, are you one of the lucky ones who knows what it is like to have gone to school without fear of being shot or stabbed?  Or are you young enough to never know that feeling of being safe?  That is how today’s children go to school.  They have no idea what it is like to go to school without a legitimate fear of being killed.

The school district where my children attend school, is taking the approach of providing a safe, structured, and controlled opportunity for its students to participate in the national walkout tomorrow.  The district has dedicated space to protest, time to do so, and without fear of punishment for leaving class time.  The district is not pushing citizens for exercising their free speech.

The same cannot be said for some other districts such Lewisburg, PA that will serve students with a detention (fortunately that will not be a permanent mark on their record, and the district can still be perceived as being tough on dissidents while standing on the 1st amendment rights of the students), or several districts  in states like Texas who will actually serve suspensions to students who walk out for this protest.  If there is one good response to this particular action, colleges have actually said that participation in the National Walkout tomorrow, and if suspended, most colleges will not hold that discipline against the student applicants.

And of course, outside of the schools, and away from the government, there are the rest of us adults.  And I believe that we all want our children safe.  And  I also believe that most of us adults believe in the rights of the students to assemble tomorrow.  And for those that do not, do so for any possible reasons.  Those that still believe in the “children should be seen not heard” (in other words, have no voice).  There will be those who worry that the fire will continue to be stoked with more fuel so that we continue to talk about violence in the schools, and for some, that means a fear of gun control which I have intentionally avoided talking about in this post.  Of course, the reality, especially for high school seniors, currently 17 or 18 years of age, are going to be voters.  And that is a lot of new voters.  Voters who are now paying attention to the inaction of our government.  Voters who see the money lined in the pockets of our politicians.  Voters who see not the cause of the increased violence in our schools, but definitely see leaders who should be doing just that, lead, and find a solution so that while we protect airports, sports arenas, court houses, we protect our schools with the same efforts.  It is ridiculous that we worry about a bottle of water, or a sandwich going through TSA at an airport, but cannot provide that level of concern when it comes to our children in school.

So, I have encouraged both of my daughters to participate tomorrow.  Realistically, a solution will not happen by the next day, week, or even months later.  But children are willing to do what adults are not.


What Exactly Is A Deadbeat? A PSA For Those Who Do Not Really Know The Answer

From a grammar standpoint, I am the last person who will ever critique anything, whether it be spelling, detail, or any particular aspect meant to have an impact on something.  But I do have a peeve that I do believe is only fair.  That is, when people use words that they either do not know the true meaning, or use them in an erroneous manner, all for the purpose of making them appear more intelligent than they really are.

One particular word that gets treated this way, “deadbeat”.  So, as I normally try to help and support those with cancer related issues, adoption related issues, disability issues, and so on, I want to help straighten out the confusion over the actual word, “deadbeat.”

“Deadbeat” is commonly thrown around in reference to divorce circumstances, especially when it comes to support issues.  But the fact is, the word is definitely inappropriately used.

DEADBEAT is someone who willfully and persistently fails to perform an expected task.  Some websites elaborate and perhaps dilute the actual meaning by referring to “deadbeat” as lazy, lacking ambition.  The term is meant to criticize or insult by what the accuser making the statement thinks that they know about the particular situation.  The key to defining what a “deadbeat” is, is it willful behavior?

First, let us set a couple of ground rules.  “Deadbeat” is a gender neutral term.  It can apply to both male and female.  Next, being a “deadbeat” is not just limited to a monetary commitment, but rather any kind of act that is committed willfully and intentionally.  A person can be a “deadbeat” in reference to custody by willfully violating a court order of custody.  So, from this point on, I will only refer to the general neutral terms, spouse or parent, as both are capable of this moniker.

Next, we have to clarify situations that are all too generalized, resulting in the erroneous use of the term “deadbeat.”  For the purpose of this post, I will refer to the act of paying child support, since that is when the term is most often used.  Is every parent who is either unable to pay support or not in full, a “deadbeat?”  Absolutely not.  And again, you have to look at every situation individually, if it really is any of your business.

A parent could have lost their job.  An incorrect support award may have been ordered, pending an appeal.  A major health crisis may have occurred.  Even a simple technical error in computer systems failing to register payments.  It all boils down to, “was it intentional?”

Perhaps the easiest way to determine if it was on purpose or not, again, if it is any of your business to figure out, is, what kind of parent is the one creating the lack of fulfilling the obligation?

There are parents out there who WILLFULLY ignore their children.  They do not even want to acknowledge that they have children, who do not even see or wish to see their children.  A parent in this type of situation may just be more likely to be called a “deadbeat” because there is no desire for a physical relationship with the child, hence, why should the child support be necessary.  To actually label this type of a parent as a “deadbeat,” definitely does not do justice because the hurt goes beyond just not paying the support, but clearly causes harm to the child.

Then there is the parent who WILLFULLY withholds a child from the other parent, often times over failure to fulfill their support obligations.  But again, with the key to being a “deadbeat” being a willful act, who is truly the “deadbeat” in this situation?

And finally, there is the parent who does all that can be done legally, in spite of set backs, in spite of health, in spite of sabotage by others, and other factors that are no fault of the offending parent, who keep in communication with their child(or children), who do what they are able to visit with their children, again in spite of the interference and harassment by others.  A parent who never objects to paying their support obligation or amount, even if unable to in whole or partially.  Is this type of parent “deadbeat?”  Hardly.

Those that willfully and intentionally refuse to pay, usually find means when coerced by the legal system.  Threats of sanctions such as license suspensions, passport seizures, and even jail are usually enough of a deterrent to convince the offender to pay, and pay right away.  In other words, they had the means.  It was an intentional act not to do so.  Yes, that is the “deadbeat.”

But it is the parent, who no fault of their own, may be unable to pay the amount in full or even partially.  And it only gets worse from there.  Again, remedies are in place to enforce the support, but as the saying goes, “you cannot get blood from a stone.”  So what good do remedies do, if the means are not there?  Sanctions, without the ability to correct, means that the situation can only be expected to get worse.  And it does not take long until the results are insurmountable.  How does a parent earn money, when a license is suspended and cannot drive to work?  How does a parent earn money, when incarcerated for arrears?  How does a parent keep or get employment with an incarceration to earn money to pay their obligation?  They do not.  And the cycle will only keep repeating.  Exactly, where does the “willful” part come in, that this type of parent should be called a “deadbeat?”  It does not.

Let us take the last paragraph one step further.  It is one thing with the above paragraph for the situation of falling into arrears to just happen naturally.  But when the situation is accelerated and escalated due to  the vindictive and vengeful behavior of a scorned spouse, exactly, where does the “willful” part come in on the part of the person obligated to the support?  It seems to me, the only “willful” part is coming from the spouse due to collect the support.

I have many friends, all in different situations and positions of this discussion.  We are all respectful of the individual situation.  We have a parent who does not want anything to do with their child.  There is a parent who wants to spend more time with their child, and the other parent refuses, worst of all, for no justifiable reason other than “just because I said so.”  And there are many of us who do everything within our power, within our ability, to remain as strong a part and influence in our children’s lives.

As an adult child of divorce myself, being divorced with children as an adult is not any easier.  But one advantage that I do have, is that I know what I do not want to happen with my children emotionally.  I know the importance of having both parents remain in their childrens’ lives.  I personally know the difference of what one missed phone call can make, and the affirmation of each visit made.

I hope this helps to clear things up.


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