Paul's Heart

Life As A Dad, And A Survivor

Congratulations Stephanie!!!

I want to give an extremely happy update on someone that was featured on “Paul’s Heart” several years ago, Stephanie.  You can read her story under “Pages”, titled “Stephanie’s Words.”

Stephanie is a survivor of Hodgkin’s Lymphoma like me, but unlike me, she is young and I must admit, a determination stronger than me.  Our journeys with Hodgkin’s were quite different, and our life in remission is also quite different.  But as you can see in the photo collage, she has come a long way over the years.

Well, if you are someone dealing with cancer, whether at the beginning stages, nearing the end, or beginning your new life after cancer… then look no further to see that there is life after cancer.

Stephanie got married last week to her long time boyfriend, and when I say long time, I mean that he was with her through her battle with Hodgkin’s.  Together, they were already tested with “better or worse, sickness and health.”  Stephanie and her husband are a formidable team having gone through one of the most difficult times in their lives, and that was before they were married.

Along with continued remission, remember Stephanie, I am always “looking in my rear view mirror on the road of remission to make sure that you are still following me.”  I look for more big milestones in your remission, but even bigger things to come for you and your husband.  Congratulations Stephanie.


A Day To Be Recognized, Not Celebrated

Publisher’s note – this particular post is a general post, not reflective of any particular situation that I may or may not be dealing with personally.  Furthermore, this post is being written gender neutral, as it is a topic that affects both genders.

Just as I am an advocate for cancer survivors and patients, universal health care, and adoption, I am also an advocate against something called “Parental Alienation.”  Today is the annual recognition of Parental Alienation.

To be clear, this is an issue that affects both mothers and fathers, but also extended family members such as grandparents.  But what exactly is Parental Alienation?  First, it should not be confused with the term “Parental Alienation Syndrome” which is completely different, though it is considered the next level from Parental Alienation.  According to Psychology Today, Parental Alienation is the “psychological manipulation of the children against a targeted parent.”  This is not necessarily a custodial parent vs. non-custodial either.  The action of Parental Alienation is “psychological manipulation” which simply means causing the child to think differently about either parent, usually in a negative sense.  Simply put, talking mean about the other parent so that the child wants nothing to do with the targeted parent.  This type of emotional abuse actually can occur with extended family members as targets as well, such as grandparents, aunts and uncles, siblings.  The individual actually manipulating the child will have one or more targets.

Parental Alienation Syndrome is actually when the manipulation has been completed, and the child, who under normal circumstances would unconditionally love both parents, now tries at all costs, to avoid the targeted parent, even to a level of hatred themselves comparable to the offending parent.

What would cause one parent to go after another parent, and use the child in this manner?  Clearly it is to serve as some sort of revenge, either for a system that the antagonist perceives did not give the desired result, or even if the desired result was reached, the decision was not enough.  The hatred of the target by the other parent, is more than the love the parent has for the child.  That does not mean that the offending parent does not love their child, the offending parent just hates the targeted parent more.

No one gets married with the ultimate goal of getting divorced, well unless you get involved with a pre-nuptial agreement, then I believe you pretty much do not have confidence in your marriage lasting.  I do not have the secret formula to what makes a marriage last “til death” parts the spouses, or when the marriage simply falls apart.  And the reasons that marriages do fall apart are numerous, from issues such as money problems, to even getting married under false pretenses.  But at no point, should this EVER affect the children.

And that is exactly how Parental Alienation works, by drawing the children into the failed marriage.  Only the two spouses are the ones married and divorced, not the children.  The children will keep the same parents as they had when they were married.  However, when one parent is driven to cause as much hurt as possible, children do get used as a weapon to hurt the targeted parent.  Make no mistake, this is emotional abuse, child abuse.  No child, under normal circumstances will hate their parents, unless they are convinced to, and this is Parental Alienation.  When the targeted parent is no longer able to be involved with the child, now by the child’s choice, this is Parental Alienation Syndrome.  In the short run, what this means to the offending parent, “good, I got what  I wanted, my child hates (the other parent) and I know that parent is hurting now because of that.  I have now hurt the targeted parent as much as they have hurt me.”    Think about it, the parent seeks revenge, uses the child to do so, and succeeds.  Sure, the targeted parent has now “paid” for their transgression and nerve for filing for divorce.  But now you have a child, or children, who will have not only parental issues, trust issues, and relationship issues in their future lives.

The offending parent does not take the harm to the child into consideration.  All that matters is what occurs to the targeted parent at all costs.  But just as any traumatic event in a child’s life, whether it be abuse, loss (death) of a parent, auto accident or fire, the child who grows up resenting their targeted parent faces a couple of major issues.  There are all kinds of shocking statistics that point to risky behaviors of children of alienated parents, but one thing is certain, it is not something the child will ever forget.  And just as the offending parent will feel victorious, vindicated, eventually the child will discover the manipulation, and the role that they themselves played, or were played.  And then a whole new set of issues will develop.

So how does a child get manipulated against their other parent?  Involving the child in discussions pertaining to the divorce process from court orders to the issues of the divorce.  Lies.  Talking negatively about the targeted parent.  Wrangling support from outsiders (family and friends) to “verify” the things said about the targeted parent.  Really, anything that causes the unnatural act of turning a child against their parent.  That is manipulation.

And while “parent” is in the term, the act is actually involving the child, there are things done to add to the hurt caused to the targeted parent which is meant to reduce any fight the targeted parent may put up.  Keeping the targeted parent from communicating or seeing the child, not sharing simple things like photos and report cards, not informing the targeted parents of medical issues that arise are all acts of parental alienation, because the purpose is there, to alienate the child from the targeted parent, to erase the parent from the child’s life.

And those outsiders that actively participate or encourage the unnatural act of turning a child against their parent, may actually be considered worse because they are not as emotionally involved as the offending parent, then presumably should have a clearer head, to see the hurt being caused to the child.  Again, do you hate the targeted parent more than you love the child?  Then you are guilty of Parental Alienation.

I am an adult child of divorce.  I grew up hearing awful things about my parent by outsiders.  My parent chose to not deal with all the hatred and manipulation by the others.  And so, as much as I loved that parent, I grew to hate that parent.  And as visits diminished, the hatred grew because clearly, everyone else was right.  And the absence of my parent proved it.  But a tragedy early in my adulthood would open a door that had been slammed shut by me.  Now, I am not the kind of person to hold a grudge, even in this extreme case.  I never did ask either of my parents why they got divorced, and with my father no longer living, I do not want to know, being able to hear only one side at this point.  I have forgiven, moved on, but have not forgotten.

I love my daughters.  I did divorce from their mother, but I did not divorce their mother.  I divorced from my wife.  And that is why it has been so important to me to not allow to happen to my daughters what happened with me, because I know how it feels.  Because our daughters will outlive both of their parents, and most likely have a family of their own, their mother and I will need  to co-exist as mother and father.  There are children that are not as fortunate.  Those children will never get the chance to stop the hurt, never get the chance to forgive.  And that is what today is all about.

What Makes Me Tick

I have mentioned time and time again, about the number of cancer patients and survivors I have met over the nearly 30 years since my diagnosis of Hodgkin’s Lymphoma.  Each time I meet or speak with someone, it is entirely a different experience, and each time, leaving me with something else to consider that I had not given thought to before.

I never got to meet the three other “kids” that were being treated for Hodgkin’s along with me.  Unlike chemo suites today, I was kept secluded as were the others during our treatments.  We never bumped into each other at follow ups.  And other than my oncologist mentioning that I was the only one out of the four, I received the full complement of chemotherapy cocktail for the entire treatment plan, I knew nothing about them.  To this day, I have no idea what ever happened to them.  Were they still alive?  Do they deal with late effects from the treatments like I do?  Nothing.  I have no idea.

I got to meet other survivors soon after my treatment after I enrolled in a pilot counseling program, called Cansurmount, a peer to peer counseling program sponsored by the American Cancer Society.  A great concept, but it failed due to the lack of medical community support who felt that getting “help” from someone who has been there before, risks delays in treatments if a patient should give second thoughts.  And admittedly so, there were some in my class that should have been helped themselves before taking this effort on.  My first patient was a 16 year old girl who would eventually pass away, never seeing remission.  I wrote about her on the page, “Jennifer’s Story.”

In the late 1990’s, I expanded my counseling efforts via “list serves”, email groups or forums, specifically tailored to Hodgkin’s survivors.  My involvement and support to offer grew enormously as instead of just offering local support, I was able to offer support nationwide, even internationally.  It was at this point, I had the idea, to hold a “gathering” of survivors where we could all gather and share our experiences.  One thing I want to state at this point, during this gathering, and another subsequent gathering, only a small percentage of people knew that they were dealing with late effects from their treatments, but with the rest of us unaware, we simply made this a Hodgkin’s “thing.”

Facebook would come along and expand internet support even further for a rarely known and diagnosed cancer, Hodgkin’s Lymphoma.  Soon, people were hearing about others getting together to meet up with each other to share their experiences.  But as time went on, and our survivorship years increased, so did the issue of late effects.

As most survivors of Hodgkin’s Lymphoma from decades ago will tell you, we were not studied to live beyond five years.  Therefore, little if anything was known about late effects from either chemotherapy, radiation, or treatments of both.  Many of us were simply told of a risk of a secondary cancer, and in my case, an enlarged heart.  In my case, I would eventually and currently be diagnosed with over a dozen issues from cardiac, to pulmonary, to gastrointestinal, to spinal, muscular, and more.  And yes, PTSD is another one of those effects.

Once I became aware of my late issues, I then expanded the patients that I met with to include survivor issues, not just lymphoma.  Not only am I meeting with others, but others are also making arrangements to meet other survivors and patients.  Finally, word is getting known about the issues that we deal with because a well documented fact, unless you have breast, lung, or colon cancer, there is not much publicity or support for any of the “lesser” cancers.  We have to do it all on our own is pretty much how we feel.  And the truth is, we are making a difference.  Perhaps not on a grand scale, but one at a time, survivors are finding out what is causing their bodies to betray them, seemingly without cause.  We are now sharing where to find the medical help.  And we are able to be the shoulder for someone to lean on when needed.

This past weekend, I got to meet someone else from the world of Hodgkin’s, not a patient or survivor, but rather a family member.  This happens quite a bit because they too want answers to what their family went through, in this case, her sister and nephew.

You see, I was actually friends, though we never physically met, with her sister, the Hodgkin’s survivor.  We had known each other several years, and actually lived near where I did in Pennsylvania, though oddly, we never ran into each other.  Two years ago, she passed away, complications from the late effects that I mentioned earlier.  The sister and son live in Florida, same as I do, and we finally had the chance to meet.  And like I said, everyone I meet or talk to, is always, and I mean always a different conversation about our experience, and we always come away affirming what we already knew, and learning something more that we had not considered.

I asked questions about her late sister, about what she was like, how she dealt with her issues, and such.  I mentioned that her sister was always the kind to help others, in spite of struggling with her own life.  Here sister affirmed this is who her sister was.  But if there is one thing that will stick with me from our meeting, and this has only happened with one other Hodgkin’s related friends, she not only got, but understood what the variety of late effect health issues that her sister struggled with, and gave unending empathy to her sister.  And she is not the only sibling I know either, thanks to social media.

This is really an understated issue among us Hodgkin’s survivors, getting not only friends, co-workers, but especially family members to realize how we look on the outside, does not reveal what our bodies are struggling with.  It was so heartwarming to hear how she cared and tried to advocate for her sister.  Even spouses often find themselves lacking in this common sense support even in spite of witnessing events of health flare-ups in person, refusing to accept the commitment of “for better or worse”, simply retreating to a world of denial (“it’s done, they’re better now, move on, they are fine”).

No, we are not fine.  And it was emotional for me to hear that from a stranger, how she felt for her sister.  I know I am not alone in having to accept the level of denial or ignorance of the health issues that I deal with, regardless of what has been witnessed.

But because of meeting Corrine and her son, and sharing our experiences, I know, without a shadow of a doubt, we survivors of Hodgkin’s our making a difference, a difference that medicine is now only just catching up to.  Sadly, we will still have to deal with those who look at us and say “but you look great”.  As words spread about us, so will the knowledge.  And that is worth sharing.

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