Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

Hiding The Pain… Because We Have To


A current news story about an airline disaster, with speculation of a pilot possibly having had medical issues that could have contributed to the crash of that plane, led me to write this post about something that I have not had to think about for a long time.  This post is not about the disaster itself, but rather choices that many who face challenging illnesses are forced to deal with, in order to survive.

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It happens without warning, you get hurt.  It is called an accident.  You end up with an injury and you seek out proper medical treatment, and you plan to move on, even return back to the work assignment that you were working on.  Only in most employment situations, it is not this simple.  For an injury on the job, we supposedly have protection in place to make sure that we are taken care of.

But when we get injured at home, or develop a serious illness, we are supposed to have federal protection in place, called the Family Medical Leave Act.

The truth is, in neither circumstance are we guaranteed protection with our employer.  Your best bet at being treated like you matter, whether hurt at work or at home, is if you are dealing with a small company, a “mom and pop” company, where you will employer and employee will spend a lot of time with each other, perhaps more than people who have spouses and the time that they spend together.

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More likely than not, if a person is hurt on the job, more than medical care may be given for the injury.  Depending on the severity of the injury, an employer will be obligated to report the injury to OSHA.  This causes major issues to an employer.  An employee risks being scorned by the employer for the inconveniences that will come forth that quite possibly have prevented the injury.  Just Google coal mining accidents in recent years and you will see what efforts are made to cut safety and the “impositions” forced on the employer following the accidents.

It does not stop there.  Even co-workers are eventual participants in the scorning as new policies that change standard operating procedures because of the injured person now “inconvenience” them.  If you have been in the work force long enough, and have seen this happen enough, then you can also guess, that many people would rather “hide” their injury than be harassed often daily.

In 2003, my hand was caught between a 500 pound cage and a doorway, crushing my wrist.  It was an innocent accident, well for the most part.  The hallways were crowded, and instead of pushing the cage, I had to pull it, with my back to the direction I was moving.  And in spite of my slower and careful speed, alternately checking both sides of me, my wrist still got smashed.  So while the conditions were not ideal, it was still an accident.  I did get medical treatment, sort of (put ice on it, take a few Tylenol, and wait a few days).  But it was the paperwork report and the treatment by certain co-workers that proved very unfortunate.

I was not losing time from work, so my employer did not have to worry about OSHA.  The problem was that I was working temporarily in another building for the day.  And that building was on an impressive streak, and following my injury, I can almost assume how they got to that point, being injury-free for an entire year.  Were they to make that point, the entire staff (only in that building I should add) would not only be recognized for their effort, but be rewarded with a very nice company coat.  My injury, just weeks before the year mark would approach, ruined that.  Immediately, I had co-workers just telling me to “shut up”, “just put up with the injury”, and “change my story” because I “was fucking it up for everyone!”  I was injured.  I needed surgery to correct the injury, and all anyone was worried about, was their jackets.

The solution was quite comical, and it did not eliminate the harassment that I was receiving, but it did get those employees their recognition and their coats.  Because I was only temporary in their building, the report would be written that the injury had taken place in my regular building, a blatant act of fraud on the report.  But for those who watched me go through all this abuse learned painfully what was at stake for taking care of themselves, that it would be better to hide the injury than face the scorn.

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But what happens if you are facing a serious illness, injury, or accident?  What if you are dealing with cancer, cardiac issues, burns from a fire, an auto accident?  Surely there would have to be compassion.  After all, who would want to be in the shoes of anyone in those circumstances?

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I had not even begun my treatments for Hodgkin’s Lymphoma before the first co-worker lobbed accusations of me being treated “special.”  Now keep in mind, I made a decision that other than the diagnostic surgeries, I was not going to miss any other time from work, other than to go to my treatments.  My employer was on my side as he had gone to extraordinary lengths to improve our health plan to provide me the best medical options.  The benefit would go to everyone, because now everyone had that coverage.  I made the decision back then, that it was important for me to be at work, so that my mind would be distracted from the daily struggles of thinking about cancer every day.  I missed a half an hour of work in the morning for my radiation treatments (for 30 days), and two Fridays a month, I lost 2 hours at the end of the day so that I could get my chemo (for 8 months).  I missed no other time because I spent the weekend getting sick, and recovered well enough on Monday to return to work.

Somehow, my co-workers felt that the time that I was being granted for my treatments, was perceived as being “given favors.”  I would be willing to bet that not one of my co-workers who were harassing me would have been willing to trade places with me.  But I made a decision that I thought would be right for me, but it was all wrong for everyone else, and that would eventually take a toll on me emotionally.  But I could not hide what I was going through.  My body was showing the effects of the treatments.

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In 2008, doctors would discover what the extreme cancer treatments had done to my body over the years.  This would result in doctors ordering medical restrictions that would not only become permanent, but would increase for me as time goes on as my issues progress, but might also increase as complications arise.  Unlike the obvious balding from chemo, my issues are hidden as well as I can do.  But there were days when I could not hide my limitations, and just like before, issues developed between myself and my employer, and myself and my co-workers.  My employer would often find it difficult to find work for me to do under the requirements of the FMLA, but better to have me reading papers at work, than to pay me sitting at home collecting sick pay or disability.  But to many of my co-workers, strong resentment built.  Not only was there resentment for the special assignments I was given that were within my restrictions, so that the others were never given “special work”, only the normal daily grind assignments, but I was being paid the same as them, and for doing what they perceived as easier work.  Again, I do not know any of them who would have traded places with me to undergo emergency heart bypass… to have restrictive lung disease… to have a precancerous condition called Barrett’s Esophagus… to having radiation fibrosis syndrome… and more.  But because those things are more easily hidden, unlike chemo conditions, most assume that the issues are either not real, or at least not as bad.  Again, walk in my shoes.

Were I to do it all over again, and I said this prior to my heart surgery that I would not let it happen again, and I did, just to prove to myself how “strong” I was, I would have gone right for Social Security Disability, which cancer is definitely one of the diagnosis covered as is all of the other issues I deal with today.  But weighing the horrible treatment I got from especially my co-workers, I would have rather sat at home, risking feeling sorry for myself.  Because at least I knew my situation was real, and I knew what I could do and could not do.

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For 26 years, I let what others thought of me, dictate how I treated myself, so as not to upset them, no matter the physical cost to my physical and mental well-being.  Just keep pushing… PUSH HARDER…  HARDER!!!

I have now spent over half of my life, living with cancer, and its late side effects.  Over all, I am a very positive person and appreciate life and what it has to offer.  But I stopped letting others tell me how I feel and that things were not “so bad”.  Never again.

Employers need to do more to protect those who face adversities with their health.  It is called being a human being.  It is being compassionate.  A work atmosphere that emphasizes care instead of pause and fear will be more productive and profitable, if employees did not feel that they had to hide what they were going through.

But until those days come, I would offer that the moment you are diagnosed with a serious illness or facing some other health trauma or crisis, file for SSDI immediately.  You will be better off filing right away with the tedious and time consuming process, but you will also be better off emotionally not having to deal with the selfishness of others who expect more out of you, than what you know you are capable of.  Just because they do not see it.

An Astounding And Humbling Number


I am sitting here completely humbled.

20,000 views.  WOW!!!

Though my current efforts and goals with “Paul’s Heart” have changed over the last two years, the purpose behind it has not.

Writing is therapeutic.  Not just for the patient putting his feelings and concerns onto paper, but also for those who read what they cannot put into words themselves.  The writing does not have to be anything published.  It can be a simple comment  on a post-it note.  It is a simple concept, being able to bring out and internal feeling releases at least some burden and stress.  And that is therapeutic.  Getting to release any kind of negative energy, when you have nowhere else to turn, writing allows that.

I have always enjoyed writing.  And over the last several years, I have been given many opportunities to have many of my writings published.  And with my published works, not only do I provide therapy for myself with the many trials and tribulations that I deal with, my posts and stories provide therapy to those reading them.  Because I write from experience, good or bad, it is my hope that readers can relate to my stories.  And by relating to my stories, hopefully the reader can come away with a feeling, that perhaps the struggles that they are dealing with, are not only normal, that they are not alone, and that the struggles can be overcome.  And that is therapeutic.

I wish “Paul’s Heart” could be an endless supply of Euphoria type stories.  But that is not realistic.  We do have to deal with some bad things in our lives.  And it is a difficult balance that I try to maintain when I write these posts.  I view the results with the statistics on each story I write about.

There is so much more to come on “Paul’s Heart.”  But for now, I want to humbly thank each and every one of your for your support and your encouragement.

The Beauty Of Surviving Cancer


Yesterday afternoon, I gave a cancer survivor speech I titled “The Beauty Of Surviving Cancer” for a special Garden Party filled with cancer survivors.  The speech is actually a continuation of the speech that I gave a few weeks ago.  You can find that transcript on March 10 in the archives under the title “Defeating Cancer As A Team.”

Below is the transcript of my speech “The Beauty Of Surviving Cancer.”

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“I could not think of a better place to be celebrating the beauty of cancer survivorship than here, at this event at Moorings Park. That’s right, I said, the beauty of cancer survivorship.

From the moment we hear the words, “you have cancer,” it is all we can think about. “I want to survive.” And we trust everyone involved with our care, to make sure that it happens. A beautiful sentence, “I want to survive.” The ultimate fist-shaking of defiance at something so ugly.

The time from diagnosis to treatment, to hearing the beautiful words, “you are in remission,” seem to take forever. But nothing is more beautiful than remission being forever.

I am still young to be thinking about forever. But I have been in remission of Hodgkin’s Lymphoma for over 25 years. And that, is a beautiful thing.

I got the phone call while sitting at my desk at work. It was kind of ironic because although I had hoped to share the news that I was anticipating with my family, it was my employer who first heard that I was diagnosed with cancer, and he would be the first to find out, that I was in remission. I recognized the telephone number in the caller ID as my oncologist. And although I was expecting the call, and was quite excited to get great news, I actually froze at first, thinking about the what-ifs. And then I answered the phone, and I heard, “you are in remission Paul.” Beautiful. Again I found myself in a frozen state with my left arm whose hand was holding phone, slowly falling from my ear. I did it. I should be doing backflips. This was great news. And then the wave of emotions crashed over me. I did do it. I beat cancer. It took everything I had, but I did it!

Just then, right on cue, my boss came out of his office, not that he was eavesdropping, but seeing the reaction on my face, he knew right then and there, the phone call that I got, and that it was good news. And I thanked him for being there from the beginning to the end of this process.

Since then, I have enjoyed nothing less than the beauty of surviving cancer.

I have the beauty of celebrating a new birthday every year. While my birth certificate states my birthday as being December 19, 196… in reality, I recognize my new birthday as March 3, 1990 which meant that I just turned 25 years old.

I want to tell you about the beauty of progress in the world of cancer. Yes, we still have a long way to go, but in just 25 years, which nearly everyone present has been alive in their lifetime, diagnostics, treatments, follow up care, and survival rates have improved. Think about all the people before us who witnessed the discovery of the lightbulb, the toaster, and a cure for polio, in our lifetime, you have been witness to progress in the battle against cancer. In just 25 years, most of the methods used to diagnose my Hodgkin’s Lymphoma are no longer used. In just 25 years, the toxic and horrific treatments I was subjected are no longer used. And twenty five years later, I am still here to see even newer progress being made. And that is beautiful.

The beauty of cancer survivorship is getting to experience so many things that at one time, cancer patients would have never had the opportunity to experience.

There has been the beauty of parenthood. I was told that I could never become a parent because the chemotherapy treatments that I had, left me unable to have biological children. But just as all good things come to those who wait, I became a father not once, but twice, to two beautiful little girls, that only half-way through my survivorship, I was able to adopt my daughters and become the father I had always wanted to be.

I had a wonderful fur friend for nearly fifteen years of my survivorship, a golden retriever named Pollo, or as many knew him, as the “happy Golden” because of a smile that never left his face, and his tail that would just not stop wagging.

I made it a point that I was finally going to make sure that life counted. If I wanted something, or wanted to do something, or go somewhere, I was going to make it happen. It may not have been easy, but neither was fighting cancer. But I did that. I have gotten travel to beautiful places, and I currently live in a place nicknamed “Paradise”, Naples.

Another beauty of survivorship is meeting other survivors. And over my last 25 years, I have met hundreds and hundreds of other survivors. But as the Relay Survivor Committee has stated, a cancer patient is a survivor from the moment they are diagnosed. And as I wrote this speech, I thought about that concept. Because to be a survivor of anything, I feel “surviving” implies that you took on a fight. And while the circumstances may be different from what we refer to as a “surviving” event such as a natural disaster or travel accident, surviving a deadly disease is not any different. From the moment it occurs, we want to survive.

I have two examples that have made me a believer in the committee’s statement. The first, is a young man, who proclaimed to his mother and I, even before his treatments were finished, “I am going to be a cancer survivor”. Second, when told of his terminal prognosis, the doctors asked my father if there was anything that they could do for him, my father responded, “I just want to be a survivor like my son”. He still wanted to fight. Though their circumstances did not end as we would typically describe being a survivor, Michael, and Dad, both of you were survivors clearly not only in my eyes, but in others as well.

Then finally, there is the beauty of being a part of the state of Florida’s largest Relay For Life. Over twenty-five years, I have participated in many Relays, as well as spoken at many more. And I must admit, there is both beauty and excitement to be a part of something so special. And over twenty-five years to see how far we have come, and to hear encouraging news of just how close we have come to finding even more cures for cancer, that, is the beauty of cancer survivorship.

I will wrap up with a quote that I use frequently through various support web sites that I am involved with:

“As I drive on the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me. And if for some reason, you are not on that road yet, hurry up and get on that highway. It’s a great ride once you hit the road.”

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