Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “December, 2017”

Trade Places With Me


My health history is well documented on this blog (much to the chagrin of many).  I have always been open about things because I want to do what I can, to show others, a) they are not alone, b) their issues are real, and c) if possible, how to find help.  But my openness has also been about hopes, as unrealistic as they may be, of catching a break from those who felt it was their place to question my health, as if my health issues personally affected them.  This type of relationship caused much stress over my later years, as some did what they could to eliminate me from their lives by ruining mine.  And this resulted in a lot of stress.  So, I am going to try one more time, and undoubtedly I will “bang my head against a brick wall” again and again and again, because I really believe at some point, everyone will finally “get” it.

I read “double” local news, where I live, and where my children live with their mother (another state).  An all too common situation, which I have experienced as well, was reported on by the local newspaper, The Reporter.  An incident occurred at the King Of Prussia mall when a mother had taken her 7 year old son to see Santa Clause.  Yes, you guessed it, she parked in a handicap spot.

When the mother came back out to the car, a message had been written in lipstick on her window, “UR not handicap.”  Someone who had made it their business to monitor handicap spaces saw an apparently healthy woman and a child climb out of a vehicle parked in a handicap spot, and was not going to let this criminal get away with it.

Here are the facts, as reported by The Reporter, not that it was any of the intrusive and offensive bystander’s business.  The boy has a disease called Batten disease.  He is blind, and “slowly losing his motor skills.  Most children with the disease don’t live to their teen years.”  So there you have it parking lot vigilante.  Great job!  Your judgment made things right because you felt it was your business.

Chances are, nearly everyone has seen someone pull into a handicap spot and wondered, okay, what exactly is their  handicap.  First off, it is none of our business.  But it is the abuse by a few, that we feel compelled to enforce the use of the special parking spots.  We do not have that right.  And on top of that, our intrusiveness can often make a situation worse.  We do not have the authority, or the ability (skills to discover lack of an actual disability), to make someone using a handicap parking space, our business.

I know many people who go through life, “hiding” their disability as best as they can because they do not want to experience scorn, discrimination, or worse, ridicule.  Since my declaration of disability occurred back in 2010, I have experienced my share of the “dirty looks” and abusive comments.  I actually do possess a handicap placard, and it is a permanent one.  You see, my health, albeit gradual, is getting worse every day.  Here comes the argument.  “We all get older and our health goes down hill.”  An accurate statement.  But how many of you have a head start in this process?

As a long term survivor of Hodgkin’s Lymphoma, I was treated with radiation four times the life time maximum exposure of ionized radiation, and toxic chemotherapy that has caused progressive damage to many parts of my body.  Do not take my word for it.  This was the diagnosis by one of the top doctors at Memorial Sloan Kettering Cancer Center, where their survivorship clinic follows long term survivors like me.  The date on my birth certificate states that I will turn 52 soon.  In actuality, my body is more similar to that of a 75 year old.

I know, this picture does not look like a 75 year old.  And honestly, it was taken around two years ago.  But because over the years, after viewing people’s expressions when they hear even just some of the health issue I have to deal with, like even as little as one (I have 13 confirmed diagnosis of a major classification – the doctors are not dealing with the lesser issues), I developed an attitude that I need to “hide” my issues from many people, because they simply cannot handle it.

But I do have a permanent handicap placard for my car.  I do not use it often, perhaps maybe 5% of the time that I am out.  There are many factors that determine if I use it from weather, activity, and how I am feeling that day.  But you will never know, because I do not complain to anyone.  Anyone close to me has experienced moments around me, when my issues have been too much for me to handle at a particular moment.

I have learned not to react impulsively by someone ignorant enough to tell me I do not “deserve” to park in a handicap parking space.  First, I realize that the first thing that is driving the busybody is a jealousy that I might have gotten a closer space than they had to park.  I do not like using these spaces myself, but if I do use it, there is a reason.  And I will let you know very graphically if you decided to make it your business.  I am not proud of my method, but I will make sure that you think twice before confronting someone else by pure shock and guilt.

I will start by pulling open my shirt to expose the eight inch scar on my chest and tell you about the open heart surgery I had.  Follow that up with my restrictive lung disease that makes it difficult to breath in certain weather conditions.  That is just the start, because I will unleash every one of my health issues on you.  By the second issue, my lungs, I watch the person cower in shame.  I am not proud of what I have done.  But they started this.  But was it their fault?  They had no idea about my heart or my lungs?  But by the time I am done, they sure as hell know why I am parked in a particular spot, and it is because I have to, not because I want to.  Hey, anytime you want to trade positions with me so that you can park closer?  Let’s do it.

I have many friends with internal issues that qualify them as “disabled” or handicapped.  Those issues are internal!  That means you cannot see them.  Sure, there are people who will abuse the system, but those who actually need the assistance do not deserve or need the added stress from a false accusation.  It makes no difference if a person is climbing down from a monster truck, or off the ramp of a van in a wheel chair.  It is none of your business why someone is using the handicap spot.  And having experienced it first hand, you do not want to know why I have used one.  You most likely will not want to handle it.

I hope that the ignorant ass that scribble on that mother’s window in lipstick at the King Of Prussia mall feels as low as a human can feel, having to climb a ladder to kiss a snake’s behind.  The mother has enough to deal with having a child that will die as a child.  It does not matter if the child does not look the part.

We Have Learned Nothing Since The Story Of Ryan Halligan


Every year, the school district that my children attend, invite a gentleman to give an assembly to the many schools and parents on the awareness and dangers of bullying.

John Halligan and his wife’s worst nightmares were realized when their son chose to end his life at the age of 13, in 2003, after relentless bullying, both on line, and in person.

As a child, I myself was bullied relentlessly, daily during my elementary and junior high school days.  To this day, over forty years later, I still have no idea why.  I know I was short.  Shy.  Introverted.  But I was an easy target because I was also known to not defend myself in a fight.  I had been taught to turn the other cheek and walk away.  My reward for taking the high road was usually a hit in the back of the head.  I believe the only thing in my favor, was that the internet did not exist back in the 1970’s.  Having no adults to support me, or defend me, had the internet been available, I probably would have found others in my similar situation, and they… may have had a solution for me.

In my adult life, I was involved as a youth leader with high school and middle school aged kids.  Dealing with bullying, accidental deaths, and of course suicide was not an uncommon situation.  Someone in my group would always know someone who was battling a difficult situation.  It is a shame, since the day I started college, and wrote my first piece on teenage suicide in America, things have not gotten better in over 30 years, which I definitely attribute to the internet and social media.

I got to meet Mr. Halligan several years ago, when I was campaigning for school board of my children’s school district.  One of my campaign issues was safe schools, definitely an anti-bullying platform.  Ironically, the current school board was often used as an example of bullying for tactics used during meetings.  At the same time, I volunteered as a parent rep for a pilot program, called Olweus which was a multi-level bully prevention program.  This program would consist of several layers from staff to parents, and several steps to handle bullying as close to when it starts as possible, even prevention.

For the year that it started, there was a lot of excitement for the Olweus anti-bullying program.  But there was also a lot of work, expenses, and cynicism.  Teachers already had a lot on their plates between lessons and testing as well as other support they provided for their students.  In order for the program to be successful, that meant that all the elements of the program needed to be kept up to date, and that would cost money.  And the cynics would play their part, the only purpose of the anti-bullying program was for the district to look like it was trying to do something.    Now, the program is gone in less than four years.

My daughters have another five years of school left.  And I am sure bullying will not go away on its own, just as I sure that school districts will continue to turn the other cheek, protect the rights of the bully over the rights of the victim.  Yes, both are entitled to a safe and free education, but that does not give the right to ignore the horrendous and terrifying bullying that millions of children must put up with.

Even when a parent tries to do something on their own to prove bullying is occurring, such as Sarah Sims of Norfolk, VA, who actually placed a recording device in her elementary school-aged daughter’s backpack, to capture proof of the bullying.  Unfortunately, the device was not able to do so, which it most certainly would have, because it was confiscated by the school.  And not only was it taken away, but then the mother was charged by police with a felony, (punishable up to 5 years in prison) for intercepting wire, electronic or oral communications, along with… get this… contributing to the delinquency of a minor.  THE MOTHER WAS TRYING TO PROTECT HER DAUGHTER!!!!  The charges have since been dropped.  But this is a glaring example of how school districts lack any balls to protect the victims of bullying over concerns of lawsuits by parents of the perpetrators.  School districts do not want proof of bullying, so that they can claim it is not an issue in their school.  Two other students over the last few weeks ended up with similar and tragic conclusions.*

Bullies of 13 year-old Rosalie Avila of California evidently feel that it was not enough to drive the child to suicide, but continue to harass the family of Rosalie with such an ugly post, “‘Hey mom. Next time don’t tuck me in this,’  (a bed). ‘Tuck me in THIS,’ (a grave).  Her diary pointed to endless ridicule about her appearance.  As of this posting, Rosalie remains on life support.  The bullies… remain in school.*

Ashawnty Davis was a 10 year-old 5th grader in an elementary school in Colorado.  She hung herself.  She chose to confront her bully, which resulted in a fight, which was videoed, then shared on social media.  Of course the school district made sure they were in the clear, stating that the fight did not occur during school hours.  Great, glad to know that you (the school district) did all you could to prevent this tragedy from happening.*

Bullying has gone on from decades.  Through my entire elementary and junior high school education, I was bullied.  To this day, I still do not know why.  As a candidate for school board, one of my top priorities was to take bullying in school head on.  And the attitudes of school districts continue, both bully and victim have a right to education.

How many more children will die because no one wants to take responsibility for their roles, schools and parents?  And if bullying is going to be treated as a right to the perpetrator, then what can be done for the rights of the victim?

Here is what you can do in the mean time.  If your child is bullied, report it to the police.  It is then dealt with as a civil matter, not a school matter.  And then, the bully, and their parents, will still have their rights to education, but will also be held accountable for taking away the rights of another student just trying to learn.

*these paragraphs were documented from the web site “The Raw Story”, though they were also available on numerous other web sites as well.

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