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.