Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “May, 2016”

Offensive Judgement


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The headline that came across my Facebook news feed read, “Woman Who Donated Hair To Cancer Patients Mistaken For Transgender Man And Harassed In Restroom.”  Everyone reading this should be completely offended by this.  But this is what our society is becoming… a bunch of judgmental knownothingatalls.  You know the kind, just by “looking” at someone, you just know something has to be.

At least back in the racist and bigoted decades (okay, they still exist), a jerk could make their clear assumption (remember, when you “assume”, you make an “ass” out of “u” and “me.”) based solely on the color of the skin.  But today, with so much attention drawn to religions (i.e. Muslim) and lifestyle preferences, those who choose and are taught to be bigots cannot just make their assumption by just looks, though they do it anyway.  And why?  Because if they cannot see it, and they just feel it, it has to be true, right?

The story mentioned above should have been a beautiful “give back” story.  Someone had thought of someone else going through one of the worst things possible, cancer, and dealing with one of the most difficult side effects, hair loss.  So, she had her hair cut off and donated it.  Now having tried this myself, when the hair is cut off, the hair needs to be a certain length, pulled into pony tails, and cut.  Of course, then the hair that is left has to be touched up.  This can leave the hair even shorter than intended.  But that is the great thing, for most, hair grows back.  Unfortunately for this donor, hers did not grow back fast enough for a bigot who felt the need to harass someone who had just helped someone else deal with a major struggle with cancer.

And I hate reading a story like this.  This type of story is becoming all too common, because we simply do not accept, what we do not understand, or even know at all.

This was not the first time I have personally dealt with this behavior.  A couple of years ago, I was attending a local establishment with a fellow cancer patient and his family.  He was bald from the chemo, and he was denied entry into the restaurant where we had planned to just sit and listen to some live music.  And why was he denied?  He was bald.  He was also wearing a baseball cap, and it was worn the right way – not turned backwards, tilted.  His pants were pulled up to his waste, and the rest of his clothes were quite appropriate for a young man in his early 20’s.

But this jerk bouncer, claimed that the hat was inappropriate, in spite of us informing him why my friend was wearing the hat, denied his entry.

This whole thing about “looks” is getting out of control.  If we are happy about our appearance, who the hell are you to decide that someone should be confronted just because you do not like that someone looks a little too brown, or hair is too short.  Instead of moving forward away from prejudice and bigotry, we are careening in reverse gear because of issues that are not new, just only now coming to discussion.  The fact is, these issues have always been there, and have never bothered anyone.  But as each generation gets taught intolerance, this behavior is only going to grow, especially when our political leaders encourage the discrimination.

And if you need any bigger example of just how bad this is going to get, Google the story mentioned above.  Exactly what did this woman do to be harassed?  NOTHING!  ABSOLUTELY FREAKING NOTHING!!!  And what right was it of this bigot to confront the woman in the first place?  SHE HAD NO RIGHT TO DO THAT!!!

It is simple, “you cannot judge a book by its cover.”  Most reading this blog, have heard of this expression.  But just as “cliff notes” were not enough to pass our tests in school, those passing judgment by the cover of the cliff notes are even worse.

Addiction, Mistreated, or Misdiagnosed?


We were stunned by the death of music legend Michael Jackson.  And recently shocked again, but the death of another musical icon, Prince.  The common link between their deaths, pointed at the use of prescription drugs.  I will not be one to throw the term “abuse” or “addiction” as many other choose to do.

Michael Prince

Their deaths were much more complicated than just being given sleep medication and pain medication.  I know this personally, not because I knew either artist, but rather because like so many other patients who deal with long term, permanent, or progressive health issues, I have personal knowledge of what it is like to have to live with pain, discomfort, and frustration from either the lack of care, or the inability to get the care necessary to improve the quality of life.

I am not naïve.  As a caregiver, I have witnessed many times, patients simply throwing out symptoms, in order to be able to get prescription drugs in the form of painkillers or sleep aids.  For being one of the most advanced countries in the world however, our medical society does not do enough to confirm or deny when someone else’s issues are real, or manipulative.  It is not necessarily medicine’s fault either.  Some are very good actors and actresses.  Some are just a pain in the ass.  I have watched people go from one end of a spectrum of diagnosis straight through to another, still come up with nothing solid, but have been given more than a dozen prescriptions to try and deal with the increasing list of symptoms.

Then you take someone like a long term cancer survivor subjected to 4 times the lifetime maximum exposure of radiation, or chemotherapy so toxic that in one of its forms, one drug actually used to kill thousands of people in a middle East country by their dictator leader.  There are many people in this situation, including me.  I am not known as a complainer for my body’s ills, so when I actually do voice a discomfort, I get attention.  So, when I was diagnosed with a “widowmaker” blockage with my heart at the age of 42, it was not something that doctors had been looking for or expecting.  And to be honest, if not for the tenacity of my primary care doctor, any other doctor might just have missed this.

Once it was discovered that I was dealing with late effects, then it became much more clearer what I was feeling with my body, and how my body often reacted.  Before then, it made no sense.  But as things were diagnosed, more than a dozen issues, treatment and management could begin.  Of course, that was only going to be as effective as the lifestyle that allowed it to work.

Blue collar my whole life, I would show up at work “on life support” if I could.  Much to my doctor’s chagrin, I was very tough on my body, not in a dietary or exercise sense, but stress, emotional and physical.  I worked very long hours, and carried very heavy loads, even considered too strenuous for someone without my similar issues.  Several of my doctors hinted that perhaps it was time to consider “retirement” just to give my body a break.  In fact, one of my doctors looked like he was going to explode when I made the comment that “I deserved to be in the pain and discomfort because that was my price for having been cured of my cancer.”

This is how it started for me.  It started with moderate pain medicine, which all that did was allow me to not feel as much pain, ignoring my limitations.  This resulted in more pain, which of course resulted in stronger prescriptions, and the cycle just continued.  Then you add in the insomnia from the pain.  Yep, add in sleep aids.  And those needed to be increased because the stress and pain continued to increase.

Just as antibiotics become useless as we build up tolerance, so do pain meds and sleep aids.  Again, without the lifestyle change, this becomes a major issue.  It is not fair to just simply label someone as an addict.

We are a “bust your ass” society when it comes to money and possessions.  We are driven to do whatever we can to get everything we want.  And that comes at a price.

I do not know what caused Michael Jackson to require the amount of sedative he used to sleep.  I am sure it had to be stress and anxiety related.  But again, without any change in lifestyle, those meds were going to be necessary for him, and as they became ineffective, newer and stronger medicines were going to be needed.  Sadly, he lost his life.

And for Prince, if you have ever seen him perform, if he was dealing with pain, which again, seeing him perform, you can see how much his career could easily have taken a toll on him, pain meds can only do so much without changing the lifestyle.  Which means, as your tolerance builds, you need stronger meds.

No, I do not believe that either death was related to addiction.  Yes, the meds have their addictive qualities, but if you do not change the lifestyle that causes these types of issues, they will only continue to exist and need to be dealt with.

My health issues will never go away.  They are progressive.  But as my doctors have acknowledged, we can at least slow the process down, and improve quality of life.  The rest is up to me.

Memorializing My Father – 2 Years Later


Today marks two years since my father passed away.  Last year, I wrote a story that was published in Memorial Sloan Kettering’s annual “Visible Ink” anthology project.  My story was selected to be performed by professional actors.  I am hoping the link works, but if for some reason it does not, you can find this video on Youtube by searching my name, and “My Dad Was Just Like Me.”

I will always remember him telling me how proud he was of me, through not only my triumphs, but also my trials. That no matter success or failure, facing good or evil, I always stayed true to the person I was inside.

I miss you Dad.  I miss my friend.  I miss my confidante.  I miss my Dad.

 

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