Paul's Heart

Life As A Dad, And A Survivor

06 Jan 2013

Nobody Puts Baby In The Corner


I am not comparing myself to Jennifer Gray, but I definitely do not take kindly when I am told I cannot do something, must not do something, or will not do something.  As a small child does when you give the warning “noooo” and the child looks at you while reaching for the forbidden activity, defiance rules.

After I had completed my cancer treatments, I had just one goal, to lose the sixty pounds that I gained.  Yes, I gained weight while on chemo.  I had my mind made up, through exercise and diet (a really bad one), I committed to a daily regimen and got my physique back to my pre-cancer condition.

Following my heart surgery, I could not wait to begin physical therapy.  The surgery had taken so much out of me in just a matter of days, but again I was not going to take “no” for an answer.  I completed my cardiac rehab taking any opportunity that I could, when my trainer was not watching, to test my limits.  Again, I was determined to get back to my condition that I was in before the surgery.  Repeated warnings about heavy weight training went ignored, all because I was told I shouldn’t do it.

But something happened after that.  My body started to reject my efforts.  Other issues that had developed over the years, along with my cardiac issues, finally started to make themselves present.   And with that, came the warnings, “you shouldn’t do that”, “you mustn’t do that”, “you can’t do that.”

You see, while I recognize my cancer anniversary every year, currently standing at 22 years, each year, side effects from radiation and chemo have been wreaking havoc on my body.  Decades ago, cancer patients were not expected to live more than five or so years.  But now many live decades and beyond.  And if a patient is fortunate enough as I am, I can find out why my body has begun to feel the way that it does.

With the recognition of the damage has come two things.  The first is the reality that the damage cannot be reversed or cured.  It can be slowed down, but is something that will continue to worsen or develop.  But the second thing is that I have been warned that I could actually make things worse by not heeding my bodies cries for rest.  Pushing my body too hard could actually make my health issues worsen or even devastating. 

“You cannot do this.  You must not do that.  You should not do this.”

So unlike the past, I finally listened to the negative.  I finally quit fighting.  Emotionally it has taken its toll.  I am at a crossroad.  Physically my body is failing because mentally I am allowing it.  Actually it is my attitude making a bad situation worse.

Tonight, I made a change.  I have finally made the decision that I am going to fight again.  I realize the risks involved at making some things worse.  But as I completed my first night, once again I felt like I was fighting.  I was not letting the things I am dealing with decide for me how I am going to be defined.  I am going to be careful as I do not want to get hurt.  But until my body has finally had enough, I am not going to live that way.

Posted in Cancer | Leave a comment
06 Jan 2013

We Need You Not To Be Sick Just A Little Longer


I get sick to my stomach even typing the word “discrimination”.  Unfortunately, as a cancer survivor, cardiac patient, immune supressed, etc., you get the idea, I have had decades of exposure to the act of being turned just because.

As a child, I was short, a bit of a pudge, dressed kind of nerdy, okay so not much different forty years later, get off my back.  But in 1990 after completing my chemotherapy, I made a decision that it was time to start looking for a better job, one with benefits, and of course more income.

For a reason that baffles me today, I chose to work for an insurance company.  Well, I never really got to work for them.  There was all kinds of hoops that I had to jump through to get hired.  There were certifications and training, and lots of reading.  And for the first time as an applicant, they wanted me to undergo a physical.  I considered it an odd request for becoming a salesman, but went along with it.

Everything had been going well with my studies and I was getting ready to start getting my certification.  The physical went very well also, as I expected nothing less.  I was extremely attentive to my health once I was done with treatments.  So everything seemed to be pretty much in order.  And then the phone call came.

“Mr. Edelman.  Jim DeStefano here from Nationblech Insurance.  I just got off the phone with our office out in western Pennsylvania, and while you have been doing great with all the studies and tests, our office would be a lot more comfortable hiring you if you were in remission from your cancer a bit longer.”

It was one thing for me to get turned down for life insurance because I was considered too fresh of a risk, or health insurance because of pre-existing conditions.  After all, it was the 1990′s and what did our country care about insuring our sick in spite of the fact that is what insurance is for.  But without employment, I could not even afford to see a doctor even with insurance.

Since this post is about discrimination, spoiler alert.  I introduced Nationblech Insurance to the Americans With Disabilities Act which had only recently come into law, which prevents an employer from requiring a physical as a condition of hire.  In other words, I meet every qualification for the job, and as long as I am healthy with the physical, the job should be mine.  I took this company to the Pennsylvania Labor Commission where they were told to change their hiring practice immediately on the local level, and then long story short, pass it on to national.

Employment discrimination is not the only form of discrimination that I have faced.  Of course, I am damaged goods when it comes to any kind of health or life insurance as I am considered too much of a risk with all of my health issues.  I am treated differently by my employer as my absences for my frequent doctor appointments and occasional flareups, are considered an inconvenience.  Co-workers actually concern themselves and believe that I am treated more favorably, or that I am a burden on their work assignments.  There are more examples that I can give, but truth be told, I do not really give it much thought any more after two decades of being treated as if I were an inconvenience.  I know that I am not.

Posted in Bullying, Cancer | Leave a comment
06 Jan 2013

Recovery From The Big Storm


The last 96 hours will go down for me as one big blur.  Everything happening without time to take a single breath.  Having to continue on with care for the children, and working to put food on the table, in spite of the horrific storm that was called Sandy.

Prior to the arrival of the storm, we had prepared our house for as best as we could.  Last year’s Irene dumped a lot of rain on us, and we figured that was what would happen again.  We had flashlights, lots of dry firewood, coolers with ice, clean clothing, and plans on how to deal with the kids.  Then Monday night, around 9:30pm in the heat of the storm, the power went out.

Our story for the next two days in this area  is probably very similar to so many others.  But for those in our lives, miles away, in New Jersey and New York, especially close friends of mine in Manhattan, once again they are faced with a monumental recovery effort.  The Jersey Shore must rebuild.  Manhattan needs to get its tranportation back up and running.  A neighborhood in Queens must console each other with the loss of an entire neighborhood up in flames.

There will be plenty of rhetoric about climate change.  There will be accusations of taking advantage of tragedy for political gains.  And I am sure that there will even be zealots who will claim to cry out in God’s name, that somehow we are being punished.  The fact is, none of that stuff matters at this very moment.  With a lot of us having power restored, we can now see a lot of the devastation left behind. 

For the most part, the majority of us are now in clean up mode.  Many will be rebuilding.  Others will just sit and wonder “where do we go from here?”

Just before the power was restored in my home, a stranger, who happened to be a friend of one of my Facebook friends, reached out to me yesterday to offer to help me drain my flooded basement, as he had a generator.  I gladly accepted his offer, connected everything, and then shared a couple of beers while we watched the water pour out of the hose.

Bryan took time away from his wife and children to help out a total stranger.  Having the water drained made a difference as the water was just an inch away from my furnace box and the electricals of my washer and dryer.  In spite of the safety of the stagnant rising water, I walked through to unplug everything just in case the power came on so nothing would short out.  About two hours after he left, our power came back on.

It turns out, this could have made all the difference in the world as water had returned to my basement prior to the electric being turned on, which clearly would have destroyed my furnace making a bad situation even worse.  Instead, the power came on, the sump had an easier job to do, and tonight I got started on clean-up instead of dial-up (to the insurance company).

This was an awesome gesture, and will not be forgotten.  It is also a good news story in an awful time period.  In time, after the media is done sensationalizing Hurricane Sandy, there will be much better stories such as random acts of kindness or miracles.  Perhaps a baby will have been born during the storm, pets being rescued and reunited with their owners.  It is only a matter of time.  Snookie will finally have to get a real job.  Good news will come.

Posted in Uncategorized | Leave a comment

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