Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

15 Jun 2020

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.

Posted in Adoption, Bullying, Cancer, Education, Family and Friends, Inspired By..., Politics, Side Effects, The Heart | Leave a comment
13 Jun 2020

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.

 

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
12 Jun 2020

When You Want To Help


Many years ago, I worked for a major corporation.  Inside this location, several “community outreach” activities took place several times a year.  One of those, was a blood drive.  Having several thousand employees, it was a major donation drive, made even more popular because donors were often given “gifts” for giving the gift of their blood.  I would see some of my co-workers come back with some major swag from windbreaker jackets to coolers, all kinds of things.

But that was all I got to do as far as blood drives went, look.  As a cancer survivor, I am ineligible to donate blood because of the my blood being compromised from my radiation and chemotherapy treatments, even though they were over thirty years ago.  I understood the rules for donating blood and why they were in place, but when I asked if there was any way that I could help, to make a difference, that I might be able to get some of that fine merchandise, I was told “no.”

As an advocate, I was kind of taken back by the short response.  I know, you have blood donors, you have the phlebotomists, and of course the other staff of blood banks.  But do you mean to tell me, you have no need for any other help with such a critical effort?

If you follow this blog, you know my role as an advocate.  You also know that I can be determined when I hit a stumbling block when I try to help one way and I cannot.  I find another.

With my health issues, my days of participating in actual protests are long over, though if it were not for Covid19, I would likely find it hard to not want to stand by, supporting efforts against police brutality and racism.  But unlike my efforts, there are ways that I can still make a difference in these intense times for racial equality.

Back in 2009, as my older daughter was about to begin elementary education, there was turmoil in our school district.  The school board at that time, filled with bullies, had taken their negotiations public, humiliating the teachers union.  Again, if you know me, I do not tolerate bullies, and there were nine of them sitting on that board.  I attended only one school board meeting to protest the way the school board representatives were conducting themselves, and faced accusations of being disingenuous and unscrupulous.  Such big words to be used against one solitary citizen making comments during the public commentary of the meeting.

And with that, I made a decision to campaign for school board.  I never even ran for any position in student government.  But I soon found out, that unlike my fear of the anonymity I had in school would prevent my likely election, my skills as an advocate, and accompanied by four other strong candidates, soon found ourselves in a position to finally break a stronghold in our school district for decades.

I had no experience.  But I had a desire to make a difference.  I am all about treating people with respect.  Regardless of my feelings for or against the teachers at the original time, I did not like the way they were being treated, especially publicly.  And soon, not only did I receive recognition from my well educated and experienced running mates for my ideas, our adversaries soon found out, not only how resourceful we were, able to discover “behind closed door” activities, but with our lack of being politicians, we did not make decisions as politicians and they did not know how to prepare for us, or deal with us.

We lost that first attempt, barely.  Four of us lost by less than 300 votes, two less than 200 votes, and one actually lost by a few dozen.  The end of the night, of course none of us were sitting on the school board, but we did “win” the battle.  We made a difference because we got recognized.  A simple concept, people not getting out to vote, even just 300 more in a district of 60,000 voters, was all it would have taken.

So, we kept trying.  Two of our slate got elected that next election, and a third finally not only got elected the following election, but was voted as school board president.  Today, the entire board from 2009 has been replaced.

My last thirty years, and as many as I have left, I have always been, and always will be an advocate for as many causes as I can:  cancer, adoption, long term cancer survivorship, discrimination, parental rights and the list goes on.  I do what I can, when I can, as my energy allows.  I have my physical limits but I find ways to help in other ways.

Looking back, perhaps my motivation may have been wrong with the blood bank.  Because I have been able to make more of a difference when appreciation, gratitude, and success are enough of a motivation.

My daughters have witnessed my many forms of advocacy.  And they both have great hearts filled with compassion and empathy.  In recent years, I have seen their actions to help others whether in school or in public.

A couple of weeks ago, on Tuesday, my older daughter made a post of a black “jpeg,” in support of “Black Out Tuesday,” in memory and support of the murder of George Floyd at the hands of the Minneapolis police.  She knew what she was doing.  And what made it even better, she did it on her own.

Over the last sixteen years, I have done my best as their father, to set examples for them in regard to advocacy, money, relationships, education, and so on.  It is when I see something that has been done, unprompted by me, that I can see the impact that I have indeed had on my daughters.  And I am proud, as always.

Posted in Adoption, Animals, Bullying, Cancer, Education, Family and Friends, Inspired By..., Politics, Recreation, Side Effects, The Heart | Leave a comment

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