Paul's Heart

Great Reminder From A Reader Of “Paul’s Heart”

As I have stated previously, I generally approve comments submitted to this blog if they are constructive and/or helpful.  I am really torn about a recent reply to my post, “True Loss” written yesterday.  I will “copy and paste” the majority of the text, because I believe the comment is important to understand.  However, given the nature of the second paragraph, the author of the reply  turned their tone to more of an insult towards me seemingly towards the situation of my divorce, clearly not what “Paul’s Heart” is meant to be.

Back to the part of the comment that I will address.  The author of the comment wrote:

“Hate to be a Debbie Downer.. But your posts are disturbing to say the least… Being a stage 4 Hodgkins survivor since 1989 I have been greatful to have so many more years of life… I do have many issues as a result of chemo.. radiation and a bone marrow transplant..I don’t use them as an excuse not to move forward.”

First, to anyone who has had to battle any form of serious illness, having been through many serious health issues myself, I truly understand the many emotions that we go through, not only from triumph of overcoming the illness, but dealing with the fears of recurrence, the flashbacks of the memories of things material and spiritual that we lost.  We can go through one or all of these issues.

I have been counseling cancer patients for as long as I have been a cancer survivor.  I have dealt with issues of treatments, side effects, caregiving, and survival.  The availability of the internet made it possible to reach thousands of more people in search of information, from people who have experienced situations similar to them.  Many of the internet support groups are run very well and monitored for content, others are more chaotic and unstructured.

There are two types of people who go to these internet support groups, but depending on their reason for joining, they will either find success in their quest, or they will express their objections or failures to find what they are looking for.  When it comes to most severe illnesses, patients will either simply move on with their lives, as if the disease has never taken place, or they will stay in that “world” either looking to help others or find ways to deal with their emotional and physical struggles.

For me, once I was done with my treatments, it was a no-brainer.  I had no problem telling people that I had beaten cancer, and I definitely wanted to help others.  But one of the first internet support groups that I came across, and was invited to participate, was for “long term survivors” of which being just recently in remission, I would hardly describe myself as “long term” already.  But several other participants urged me to join, that it would be important.

Look, people mainly only look for help when they need it.  And at that point, I was definitely not looking for any help. I was in remission, no struggles at that point, just looking for ways to help others.  Very soon, once I subscribed to that list, I was horrified by the stories I was seeing by other survivors, actual long term survivors, and the many struggles they were facing.  And on that, I unsubscribed.  It clearly was not what I was looking for.

I would soon sign back on again, because as it turned out, all of the things that they were talking about, would soon become a reality for me, and I would be facing many of those health issues.  And were it not for that internet list, I would never have had the information to give to the “uneducated” doctors as to the possible complicated patient they were dealing with.  And especially for those of us treated for Hodgkin’s Lymphoma decades ago, have a lot of late and severe side effects that have developed, many with fatal results.  The sad part is, that for millions, have no idea what is now happening with their bodies because medicine is only now beginning to learn the concept of long term cancer survival care.

So, I am now on many internet support boards, and I frequently see comments like the one that I pasted up above.  And in no shape or form am I going to disregard the comment.  Instead, I would like to do two things.  Number one, remind my readers what “Paul’s Heart” is about.  I write about my experiences as a patient, caregiver, and survivor of cancer.  I share stories of others, not just Hodgkin’s.  I also write about my life as a single father.  In either case, at no time am I ever looking for sympathy.  My words are meant mainly to offer hope to others who are in similar situations, and to let them know that might just be normal what they are going through, and more importantly, as I have proven time and time again, that many situations can be overcome with the right support.

Overall, I am a very positive person, who unfortunately has just had to deal with a lot of unfortunate circumstances.  I get through them for several reasons, my faith, my inner strength, my friends and family.

To the writer of the comment, I really do appreciate your comment.  I am always inspired when I hear of a fellow survivor with a longevity longer than mine.  Yes, even this far out, I am moved and need to hear that someone has survived longer than me.  And just as the hundreds of survivors I have personally met, there are no comparisons to what you have been through, or what I have been through, or what anyone else has been through, because each of our battle was unique, but clearly it took a strong person to get through it, which you clearly are.  But at no time do I ever make excuses for the things I must deal with in regard to my body.  Nor do I take away from conditions faced by others.  But clearly, my health was a major factor in the loss of my job (in spite of protections from the American With Disabilities Act), but also in the ability to get future employment because of the various health restrictions I am under.  These are not excuses, these are factors.

As for the rest of your reply, clearly it was not meant to be constructive, and I clearly have never met you, so you could not possibly know the exact circumstances as to my divorce as I have not discussed anything that should even have warranted that comment from you, and you are wrong.

I am glad you did write to me.  Because like I said, it served as a reminder as to the sensitivity and needs of all patients and survivors.

Here I Am, A Man Against The World

I want to offer a bit of a disclaimer with this post, because the title makes it look like this is going to be a super negative and depressing post.  Quite the contrary, it is going to be a post that is truly inspirational.  So please, read this post for what it is truly meant to represent… determination, hope, perseverance, survival.

I am a musician by nature, and most of my internal strength I draw comes from every note that I sing, every tune that I hear, every beat that I feel.  I listen to most kinds of music depending on the kind of mood I am in, or the mood I need to be put in.

When it comes to inspirational songs, many find strength through church hymns, and there are plenty.  Contemporary songs have such inspirational lyrics by the likes of Josh Groban, Bette Middler, and the late Whitney Houston.  But for me, no song sums up my life, no song lifts me up higher, than a song that never really got any kind of airplay, and was pretty much hidden in the Karate Kid 2 soundtrack.  But being a true fan of music, I listen to a lot of music that does not make mainstream radio.

I came across this song ironically, during the days when I was diagnosed with cancer.  But nearly 25 years later, I still find myself facing struggle after struggle, never giving up.  And while I do have loved ones close to me who stand by me, and friends who support me, ultimately, it still falls upon me, to get through my trials.  It is a beautiful and powerful song written and recorded by the late Jimi Jamison of Survivor, and recorded by the band of the same name.  It is called “A Man Against The World.”  You can listen to the song, and view the powerful video at this link:

The music is beautiful.  The words… well… read on, and you be the judge if it sums me up and you will see, why I will never give up.  It is not in me.

“A Man Against The World”

Survivor

“Have you ever walked alone at night like a man against the world.  No one takes your side, a boat against the tide.”

A small child, I was an easy target of bullies.  Not just one-on-one, but more often than not, gangs of bullies.  People who I thought were friends, stood by and only watched the daily beatings I took.  My days in school were not spent learning, but studying how to evade those waiting in ambush for me on school property, and beyond, on my way home.  No father around to teach me to defend myself.  My family telling me to turn the other cheek or worse, calling the school to report the incidents which I soon learned to no longer speak of them.  And of course, school officials telling me to “start standing up for myself.”

“When your faith is shaken you start to break, and you heart can’t find the words, tossed upon the sand I give you a man against the world.”

The first Edelman to graduate from high school, I enrolled in a local college.  While studying, I held a full time job and a part time job.  A management opportunity was offered to me, leading to me withdrawing from college with less than a semester to go.  But it was a career move that was expected to set me up for life.  It did not.

“All the people cheer ’til the end is near and the hero takes a fall.  Then they’ll drag you through the mud, you’re only flesh and blood.”

I would now officially begin my life simply surviving working in the “working world” with college no longer a consideration.  But my work skills instead of being seen as a benefit by my employers, were seen as threats by my co-workers.  There were never intentions of replacing anyone’s position by me, but my work ethics were always seen as “getting in their way” or “showing them up.”  My reputation became more about my “inability to get along with others.”

“I have walked the path from dark to light and they’ve yet to come to terms.  Alone I take my stand, I’m only a man against the world.”

And just when I finally seem to get my world to be what everyone else wants it to be, and all should be good and perfect, I am diagnosed with Hodgkin’s Lymphoma, cancer.

“And love, like a distant reminder it tugs at my shoulder, it calls me home.  I shout, can a single voice carry, will I find sanctuary within your arms?”

Following a failed marriage, based on false hopes of a family, I move on to another relationship.  Get married.  Adopt two beautiful girls.  Again, life going great, and another major health issue strikes.  Only now it appears far worse news, because it became apparent that the treatments used to save my life, now almost resulted in costing me my life, and from that point on, would discover many other health challenges that I would face.

“Someday when the answer’s clearer, someday when I even the score.  You’ll reach and you’ll find me near you, right beside you, forevermore.”

I would much rather forget the last twelve months.  Having filed for my second divorce.  Having to put my best fur friend Pollo to sleep, after his fourteen years of a healthy and fun life, left him unable to see, hear, and smell, most importantly the loss of his never-ending wagging tail.  The loss of a close friend from the same cancer that I had, coincidently at the same age as I was when I dealt with it.  The loss of my father after battling lung cancer as defiantly as he possibly could.  The loss of my job after 17 years due to corporate downsizing and complications of my health.  And because of the violent reactions of certain family members through my marriage, I relocated a great distance away from my daughters, just so that they would not be a witness to the aggression and harassment from those family members towards their father.

“But for now I’ll walk the night alone like a man against the world.  A brand new day will shine through the avalanche of time.”

Now in the process of my second divorce, facing all kinds of consequences as a result of domestic court, still searching for employment, and most importantly, anticipating the next time I will ever see my daughters if these situations are not resolved, I am still fighting.  I am not giving up.

“Now the road’s grown long, but the spirit’s strong, and the fire within still burns.  Alone I take my stand, I give you a man against the world.”

I have the strongest support of my friends both far and near, in physical presence or on-line.  I have the love of my family, and my daughters to give me strength.  And I have the love of one of the strongest women I will ever know to keep pushing me forward, looking forward to the day that this will all be behind me.

I am typing this, because I truly believe that day will finally come.  If I did not believe that, I would have given up a long time ago.  Some may see me as an “angry” person.  Though really, could you blame me given everything I have been through (there is actually a lot more than I have written, but what I did write is bad enough by itself)?  But I have never given up.  I fight not because I like to, but because I have to.  When I have finally dealt with everything, and corrected everything, and the way that does not sacrifice who I am, those who have stood by me, and most importantly, my daughters will know that I stood tall and survived.

I give you, a man against the world.