Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Bullying”

Defining “Me”


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There is an expression that is common among cancer patients and survivors.  “I don’t want cancer to define who I am.”  I have heard this stated many times over my survivorship of over 26 years.  And my initial thoughts pretty much echoed those sentiments.  Many simply want to move on with their life as if cancer never happened.  And certainly, none of us want to be referred to as “someone who had cancer.”  But lately, I have been wondering, is the expression perhaps being spoken incorrectly?  Is it possible that we simply do not want it to “control” who we are?  Perhaps we do not want it to “change” us.  So maybe it is not so much as “defining” us, as much as it is “forming” us.

I have decided that I am going to take the perspective of cancer, not necessarily defining me, but rather, reminding me who I am, what matters in life, and what people really need to think of, when they meet me, or see me.

Until my diagnosis back in 1988 (almost 28 years ago this month), to say I was under the radar with even my own self-recognition would be an understatement.  Nothing I was doing stood out, going to college, dated, listening to music.  There was nothing really to indicate that life was never anything more than just going day to day.

But the diagnosis of Hodgkin’s Lymphoma kind of changed me, it woke me up.  My only knowledge of cancer at that time, was that cancer killed.  I was going to have to dig deep, to a place inside that I was never aware that I had.  I was going to be challenged physically and emotionally not just for months, but for every waking moment of every day.  I was going to have to deal with daily side effects that were not only painful, stressful, but exhausting.  Just the mere thought of the “tasting” the chemo injection was enough to make me vomit.  This is called “anticipatory nauseas”.  I was able to “taste” this particular drug 24 hours before it was even given to me.

I did what I had to do to get through that time.  The simplest thing I did was to “minimize” the length of time.  Instead of 8 months of chemo, it was 16 injections of which only 8 made me nauseous for a total of 3 hours each time.  Therefore in my head, I was convinced I would only deal with these issues for 24 hours.  Sounds much shorter than 8 months.

As each month went by, it did get harder and harder.  But as I got through one cycle, I knew I could get through the next cycle.  And so forth until I was half way done, and then knowing I got half way through, I could get through the next half and then it became about how many more to go, after having gone through so many before.

A definition of me, pointed out by having cancer, was that I did have what it took to get through this horrible experience.  It showed that if something was so important for me to get through, no matter what I was put through, I was going to achieve it.  It proved I was never going to let anything be taken from me.

This mentality would benefit me many times in life after that.  I battled an employer for discriminating against me, just because I had cancer.  I fought for disability rights with another employer after it was discovered that I was dealing with late effects from the treatments that cured me of my cancer.  Accommodations needed to be made to make it possible for me to continue to work, and I knew that was my right.   I fought for that right.  And yes, just like the days  went through my treatments, there were bad days.  My boss would make things difficult for not only me, but as if to put pressure on me, he would often make it difficult on my co-workers who would then turn their frustrations on me, in hopes of them putting pressure on me to back down.

Well, just as with cancer, I did not back down.  And my remaining years with that employer were quite peaceful concerning my health issues.

And there are other examples in my life, post cancer, that I demonstrate this same mentality and determination.

So, if by having had cancer, if reminding me of what I always had inside of me to face any challenge in life, then yes, perhaps cancer has defined me.  And that is a good thing.

That Moment When…


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The following was something that I wrote on another page.  But the response I got from it, told me that it was worth sharing.  Because no matter the challenge you are facing, this could apply to you.

 

“That moment when the pendulum begins to swing the other way.

That moment when you are proven correct and true.

That moment when you realize your greatest fear could have actually happened.

That moment that fear was silenced.

That moment you truly appreciate everyone who at the very least, encouraged you to never give up.

That moment that you recognize prayers and positive thoughts make a difference.

That moment of awareness, you are still who you have always been.

That moment you remember, you have what it takes to challenge, endure, and survive.”

Sometimes, The Best Advocate Is Yourself


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Advocate ad as defined in the image, “one who pleads the cause of another.”

In my life, I have taken on many advocacy roles, and the list almost grows daily.  From health, I advocate for patients with their care, and their rights in the work place and in the rest of the world.  This started around the time that I was diagnosed with Hodgkin’s Lymphoma, and the first hurdle that I had to jump in my care.  I considered it unacceptable, and knew that if it was happening to me, it was happening to others.  Buy my advocacy in health did not stop with the world of cancer, but has expanded to cardiac, long term survivors of cancer, geriatric care, and simply, the right to receive medical care when it is needed.

With having two daughters adopted from China, I became an advocate for families seeking and dealing with adoption issues, not just internationally, but domestically as well.  Because of having children, I took an interest in public education and fighting to make sure my daughters got the best education possible and supporting those trusted to educate my daughters.  Which of course led to my first and only political run, for local office, school board.  And of course I began paying more attention to politics on the larger level.  But to be honest, the lessons I learned at the local level leave me feeling hopeless at the higher levels.

Getting back to children, well, not just children, I have always been an advocate fighting bullying in any environment.  Sadly, society still does not recognize by ignoring the bullying in schools, those bullies grow up to be adult bullies.  There are plenty of programs to deal with this, but unless they are used or enforced, they are paper tigers.

And then there is Parental Alienation.  This is the blatant act of causing mental and emotional harm to a child, by interfering with the relationship between a child and another parent, usually through divorce.  Talking negatively in front of a child or even as “matter of fact”, causing the child to miss opportunities to spend time with a parent, manipulating the child to develop a negative concept of the other parent, are just some of the examples of Parental Alienation.  And I will not beat around the bush with this, PA is child abuse.  Children have the right to love their parents.

But there is more to being an advocate than just having a cause to fight for.  There is more than just defending someone who just does not know where to start to find the answers to start their fight.  Perhaps, they just do not have the strength to express their needs.  Sometimes we have to be that voice.  And in many cases, it is as easy as just showing someone “where” to begin, or even guide them along their course.

There are also times, when even the slightest effort, without realizing it, you can become an advocate.  Just being there for someone, as an “ear”, makes you an advocate because you are showing someone, who may feel alone, that you care.  And that act alone makes more of a difference than doing nothing at all.

No matter the cause I advocate for, it has made me who I am.  And it helps me to deal with the many things that I face.  I have no quit in me when I know that something, or someone is completely wrong.  And I have paid a price over the years with employers, friends, and family because of my decision not to pick battles.  Even the smallest issue to me, if you let enough of them go, it leads to a big issue.  And I have learned, if you are dealing with the smaller issues alone, when you face the bigger ones, you will still be alone, and that fight is even more difficult, because the other side is not alone.

You will never be taken more serious, when you, yourself, advocate for yourself.  After all, you know more about your particular situation than anyone else.  Sure, the help of another advocate is great, but your own words will be the loudest and get your heard.

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