Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

“All” Is A Distraction


These are such stressful days.  I am going to do my best not to make this a political post.  Because at this point, our leaders in politics are not helping, AT ALL!  This really falls upon each and every one of us, to make the difference, to take the steps toward recognizing that all lives really do matter.  And I did not put that phrase in quotes, because it does not need to be quoted.  It should be a way of life.  And while we can say it, while we can live it, we need to have everyone understand why we are not at that place right now.

Now, I need to stay in my lane here.  I am not black of skin color.  So I cannot even begin to know how many, if not all, are feeling right now with all the violence being inflicted upon them, unnecessarily, and all too often, fatally.  I have many friends of all colors, the majority of those colors being black.  Again, I am going to stay in my lane.  I know what I have seen, heard, and read.  I have made my mind up on my own, not what media or groups want me to see and believe.  All lives do matter, again not in quotes.  But that also means that has to include black lives.  And as long as our society stays complicit in its tolerance of racism and white nationalism, too many are willing to express all lives matter, but they actually mean “except blacks.”

Before I go any further, I am going to get into a lane that I know all too well, and this will help me to explain and prove my point mentioned above.

All cancers matter.  Of course they do.  But there is one organization that will tell you that all cancers matter, but if you get specific about a certain type, like mine, you would find yourself disappointed to find out, that your type of cancer, or in my case, Hodgkn’s Lymphoma, does not matter enough to be included in their mission.

I learned this reality several years back.  Being a cancer advocate for thirty years, it was just something that I took for granted.  But several years ago, I discovered only certain majorities of cancer mattered to their organization:  breast, colon, and lung, the big three.  Of course, that led me to the Leukemia Lymphoma Society, because they represented my type of cancer specifically.  But now, I found myself, being pulled in two different directions.  Of course I cared about other cancers.  I had five other family members die from cancer, one of those had two different types of cancer, and another had a relapse.  But I also needed to focus on the organization that I relied upon for my cancer, especially realizing that I was not going to get any support I needed for my Hodgkin’s.

All cancers do matter.  I know that.  But it is not only understandable, but okay, for my cancer to matter more to me.  Hodgkin’s Lymphoma is a rare cancer, but I need you to know it matters just as much as all of the others.  But you will never know about my struggles if all you hear is “all cancers matter.”  I need to make you aware of the cancer that I deal with.  That is why, “Hodgkin’s Lymphoma matters.”  That statement does not take away from the needs of the other cancers.  It is an awareness.  And that awareness would get lost if it were not announced by itself.

So there are all kinds of cancer movements or specific activities, Relay For Life (all cancers… sort of), Light The Night (for Lymphoma and blood cancers), Making Strides (breast cancer).  But as a cancer patient and survivor, you will never hear one of us at any of these events, protesting about an “all inclusive” demand to be recognized.  We know what and who we are participating for and with at these events.

Which brings me back to “Black Lives Matter.”  No one can deny that “all” lives matter.  We are human beings, whether with religious beliefs or not.  But right now, there is just something so awful going on in our society, and in my short lifetime, I have been witness to too many horrific incidents against black lives.  And I have seen all too often the aftermath as the black population tried to bring awareness by themselves, only to be misrepresented in history as thugs and destructive vandals.  And currently, because of our current leadership, politics now plays a role in this “disease”, and that is exactly what it is, because by making all of us aware of blatant racism, it is somehow perceived that it is an attack on that leadership, which of course brings out all of the other “lives matter” mantras, in hopes of drowning out the “Black Live Matter” cause, a shiny object if you will, a distraction.

I do not know what it is like for a black person to be approached by a police officer, even if the officer is just being friendly, just to say “good afternoon.”  I am starting to see it now, with one particular incident standing out way before the murder of George Floyd.  His name was Walter Scott.  He was pulled over for a traffic violation.  But as he had a concern about law enforcement, he made the decision once he got out of his car, to run.  Unarmed, he was shot in the back by an officer claiming self defense.  This scene plays out too many times, yes, most recently with the murder of George Floyd, and already more have occurred.

I support the Black Lives Matter movement.  Any other reference to them other than a peaceful protest is nothing more than a dog-whistle distraction to call out antagonists to commit acts that would dishonor the intentions of the BLM movement.  There is a big difference between a peaceful protester and a looter/rioter.  They are not the same.  The first amendment guarantees the right to peacefully assemble and protest.  It says nothing about restricting or defining what a peaceful protest is.  It cannot be helped if you do not like the language, the message, or the volume.  Those things make no difference in making it a peaceful protest.  And I do believe everyone matters.  But right now, this is their cause.  I do not know what my black friends are going through, but I understand it.  And I support it what they are doing.  And hopefully different than what I witnessed in 1992 with the LA riots following the Rodney King injustice of the five cops being acquitted of brutality which was witnessed by the world, I am hoping this finally brings the changes necessary to make sure that everyone matters.

All Are Created Equal


In a surprise move, the US Supreme Court ruled that those who are in the LGBTQ community, are protected from workplace discrimination by the Civil Rights Act.  It was a surprise, because the US Supreme Court is stacked with a majority of conservative judges who were to assume certain religious beliefs that would have figured otherwise.  But as two of those conservatives stated otherwise, the CRA definitely applies to the LGBTQ, while others who dissented only did so because they interpreted the act differently.

I have many friends and several family members in the gay community.  Some of them have children.  Some of my straight friends have children in the LGBTQ community.  My children have many friends in the LGBTQ community, and have for quite some time going back many years.  And like my children, I do not really give it much thought.  I support everyone’s right to be who they are are.  I will be honest, I do not spend a lot of conversations on gay rights with them, because conversations we have do not revolve around their sexual orientation.  To me, they are a human being, no different than me whether it be the color of skin, health, education, or gender.  We have wonderful conversations with each other, so unless it comes to issues that arise, we all just enjoy life and the joys it brings.

I understand how important this ruling is, regardless that it should not have had to happen in the first place, because as our Declaration of Independence clearly states, “all are created equal.”  That means, we do not have the right to discriminate against another.  We all have the same rights to life, liberty, and the pursuit of happiness.  It does not matter if you have a belief that disagrees with that.  The Declaration Of Independence is clear.  All are created equal.

While this is a major victory for the LGBTQ, that does not mean that their fight will be over.  I hate to be the bearer of bad news, but as a major advocate of the American With Disabilities Act, I know first hand, there is a huge difference of having a law, and the loopholes that get created to get around them.  But that does not mean that today is not a huge day for my LGBTQ friends and family.  Their rights to work in a discriminatory-free environment are not only reaffirmed, but now clearly stated by the US Supreme Court.  You have had these rights since the Civil Rights Act was signed.  Now they are clear.

There will be other fights and challenges by bigots who will do what they can to disrupt the rights of our American citizens who have these unalienable rights under the Declaration Of Independence.  And that just means that the LGBTQ, knowing they have these rights, will just need to be aware of the efforts to get around them.  And if I had one bit advice I learned from fighting for the rights of the disabled?

Document.  Document.  Document.  Everything.  Save all of your work reviews that show your exemplary work record.  Keep a diary of interactions, both friendly and not.  And this is important, do not use your workplace as an advocacy tool because if you have an employer, or co-worker who is not supportive of the LGBTQ, you could be seen as disruptive, which is different than being discriminated against.  It gives the employer grounds.

I know the fight of the LGBTQ is not over.  But please know, you have the support of myself, and my children.  Because we know, that all of us are created equal.

We Are Not Alone


When I was diagnosed with Hodgkin’s Disease (it was called that back in 1988, not the less scary but more cancer sounding Lymphoma used today), there was no internet, at least for me.  I did not even own a computer, or a cell phone.  I am pretty sure I did not even have a cordless phone in my house.

I was on my own.  Sure, I had my wife.  I had my doctors.  I had my nurses.  I even had a therapist.  But I was on my own.  I saw other people in the waiting rooms, and I assumed they were there for cancer, though not sure what type of cancer, or even if by some chance, it could be the same type of cancer as me.

In 1996, I got my first computer, and learned about the internet, and the many things that it could do.  And of course, me being the investigative type, I started to research Hodgkin’s Disease, and soon found out, there were “groups” that talk about it.  To understand how primitive a concept this was to me, would be like saying the beginning of Facebook, came from the use of a chalkboard.  Don’t know what a chalkboard is? Look it up.

There were two groups that I found myself curious about.  They were called “list serves”.  You post a message, and then other group members respond to your message.  Not only were you able to learn about what you had been through, you could learn what others had been through as well.

This list serve still exists today.  I was invited to this list by another long term survivor, who is no longer with us.  And in spite of my denials that the list was not meant for me, because I did not have the health issues that those on that list had, I was and still am a member of that list.  In 2008, this list would mean the difference to me, with life versus death, as I discovered that I had issues related to my Hodgkin’s treatments eighteen years earlier.  I only knew about them because of the information shared by the people who belonged to this list.

Seeing their words was not good enough.  I wanted it to be more “real” and to do that would mean meeting them in person.

I would arrange several gatherings such as this one pictured, so that other Hodgkin’s patients and survivors could get together, to see, that we in fact, were not alone.  And they literally came from all over the world, England and South Africa.  I tried to do these annually, but I wanted it more often.  So, much to the frustrations of my ex wife, nearly every trip I made, I announced that I was making my trip on these lists, and if anyone would like to do a sort of mini-gathering while I was in their general area, I would make it happen.

These are just some of the several hundred other Hodgkin’s survivors I have met over the years.  But today, it has a whole new meaning.  And every long term survivor of Hodgkin’s Lymphoma will agree.

The late side effects from our treatments have haunted many of us for years, with no reasons or answers for the many issues we have to deal with.  Doctors were never trained about our issues.  Medicine had not researched our issues of survival, because technically, no one gave a shit about us after we passed our five year mark.  We were on our own.  And without knowing about these list serves, being alone is devastating.

But because of those lists, I found the help that no one else was able to give me.  With the help of that same fellow survivor who encouraged me to participate with ACOR, I found the doctor that would not only save my life, but help me live it.  Hodgkin’s survival was his specialty, for decades in fact.  Together, we have a deal.  He will do his best to make sure that I see my grandchildren, something I hope is a long way away.

Fast forward to the turn of the century, and introduce Facebook.  All kinds of groups had formed when it came to Hodgkin’s and late effects, even some “issue specific.”  What it meant was, more people to meet.  What it meant was, more people like me.  What it meant was, I was not alone.

There are those in my survivorship that have had personal impact on me and the directions that I have taken.  While I have personally met hundreds, if not a thousand by now, I have spoken with thousands more.  But another influencial survivor would come along and be a moral compass for many of us.

I spoke with Dolly, a fellow survivor many times, but never had the pleasure of meeting her in person.  She was a kindred and free spirit.  But she was also quick to “knock some heads together” the minute two survivors might not play nice in the sandbox.  She was literally all about peace, love, and happiness.

Prior to her passing, she made it known, that she would like to see someone, some organization, step up, and provide the help that our fellow Hodgkin’s survivors needed, information, resources, support.  And just before her passing, the concept was born.

I won’t go into the nuts and bolts of Hodgkin’s International, because it deserves a post on its own and what it has been doing.  The fact is, Dolly’s dream has come true.  And the reason I mention this, is an example that occurred this morning.

I cannot produce any photos, because I do not have rights to do it, but this morning, a web meeting was arranged through HI, with 100 fellow long term survivors of Hodgkin’s Lymphoma.  Lengths of survivorship ranged from twenty years to FORTY-NINE years!  We got to introduce ourselves to each other.  Put faces to names.  And most importantly, see and know, we are not lone.

Thank you everyone who has made this day possible.

 

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