Paul's Heart

Life As A Dad, And A Survivor

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.

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