Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “March, 2021”

A Four Letter Word Never To Say To Me

This post is actually a follow up to yesterday’s post (“Someone Moved My Cheese”), as I received several comments, echoing my journey with frustrations and acceptance of things that I physically can no longer enjoy doing, because of the late side effects from my cancer treatments for Hodgkin’s Lymphoma decades ago. In summary, these conditions cover the spectrum of muscular damage, cardiac damage, and pulmonary damage.

Before I proceed, a disclaimer, because I am going to use a couple of phrases that are offensive to some, but admittedly not as offensive to me, as something else that can be said. And several of my fellow Hodgkin’s survivors would agree.

I have no problem if someone tells me to “fuck off” or “fuck you.” Using that phrase with me tells me that it is your problem, not mine. But the four-letter word that I consider far worse, a fighting word, is “lazy.”

Garfield the cat had no problem with the label “lazy.” It was badge that he wore proudly.

As a society, many have no issue judging someone that they see either inactive or uninvolved as “lazy.” It does not matter why the target of the judgement appears as such, the declaration is made. It gives a person a feeling of superiority to be able to declare that they are better than someone else. But is calling someone lazy really setting a bar high in thinking of yourself as superior? What if there is an actual reason, why someone is unable or unwilling to do something, and it has nothing to do with laziness?

I was, a third generation blue collar worker until about thirteen years ago. I worked nearly every day, normally perfect attendance except during the time period of my cancer with the occasional days that I missed. My mentality, like my family before me, we showed up to work, even if we were rolled into work on our death bed. Reliability was definitely one of my strong suits. In the end of my working career, it was not unheard of for me to work 50-60 hours at my full-time job, and perform three to four gigs disc jockeying over the weekend. Some may see this as being committed to providing for my family, which I was. But it was also who I was. I just worked. It is what I did. It was so bad for me, that my daughter at age nine, asked me, “daddy, why are you always working? We never get to see you.”

When you do not make the conscious decision to do something, sometimes it is taken out of your hands and the decision gets made for you. And that happened to me, nearly thirteen years ago this month. It was the beginning of learning not only that my body was no longer capable of carrying the load that I had done my whole life, but why. And my doctors gave me a decision to make. I could either keep going at the pace I was, and expedite my issues and my fate, or I could give myself a break, allow my body the rest it so desperately needed, and slow a process down, that can never be reversed if I ever wanted to see my children grow old.

The denial was powerful. “How dare you tell me I have to learn to take it easy? Fix me. I will be good as new and continue on. You don’t know me and what I am capable of. I don’t know the words “give up.”

But my body did know the words “give up.” And since I would not make the decision on my own, soon after that event in April of 2018, emergency open heart surgery, my body would frequently, and severely, give me reminders that I was not taking the advice from my doctors seriously, resulting in multiple trips to the hospital, too many in critical conditions.

In 2012 and 2013, still fighting my fate, with my heels dug in against my body, another direction occurred, affecting me and my health. This was purely coincidental, but the benefits to my body, would finally do, what I had struggled to do, give my body the break it needed. In as brief as I can explain, my company was going through major downsizing. Up to this point, the company had accommodated my health restrictions as required by the Americans With Disabilities Act (ADA). But with the downsizing, there was no longer any other work I was capable of doing for them. With their assistance, I was placed on the path to disability. This was something I had heard of so many other fellow survivors, but nothing I was prepared to accept for myself. But now, I had no choice. It was out of my hands.

And then I heard it for the first time. “He is just lazy.” These were words that I heard from a co-worker. Unlike my openness here on “Paul’s Heart,” I was not as open with my health issues at work, as those issues often got used against me. But, this individual, and many others to follow, felt they were qualified to summarize with their limited knowledge of me, that I was “lazy.”

Honestly, I did not give a lot of value to these opinions at work. There is credence to the fact, that we spend more time with our co-workers than our own family (at least in the awake hours), but that does not mean there is understanding like you would have from family members who know what you may be dealing with. That was definitely the situation in my case. All that mattered to them, was that I was not being given the same work load as them, and I was still making the same pay grade. I got away with being “lazy.”

And if it were only my co-workers who felt like this, that would be the end of this post, but it is not. It got worse. Because then family did join in with this belief towards me. Most of my immediate family, not only feel that my inability to perform certain functions anymore, is due to laziness, they actually deny the seriousness of my health issues overall. Forget the fact that many were witnesses to the multiple events that I experienced medically. Forget the fact that some family members were present when doctors explained everything to me, what was happening, and how I would never get better. They were there, yet they still deny it. Instead, they too, call me “lazy.”

By the time I left my employer, I was on three separate opiodes for pain, and a major sleep aid to get to sleep, and even that was no longer working. All so that I could work the amount of hours that I was working, that I was expected to. And the damage to my body from my treatments continued to progress and escalate in severity. This was my quality of life. My doctors told me, I was killing myself by pushing as hard as I was.

I am far from “lazy.” And the same is said for all of my fellow Hodgkin’s survivors that are reading this. We are far from lazy. We had monstrous things done to us to cure us of our cancers. And we get through our lives the best that we can, enjoying what we can, and most importantly, using the time that we have, to spend it with those that we love. In the end, that is what matters to us.

I have plenty left in me if you want to challenge my abilities. I am far from “lazy.” But as strong as I feel about that four letter word, will be met with one of my own if you call me that. Fuck you! And like everyone else who has taken that stance with me, you are erased from my life. You mean nothing. You are pitiful that you are actually jealous of a situation that I and others have to live with the rest of our lives. You are pathetic. You want to trade places with us, because you think we have it so good, have at it. I know plenty of takers who would give anything to enjoy life the way everyone else gets to.

Unlike those people however, we appreciate what we have, the time we have, and the people who want to be a part of our lives.

Someone Moved My Cheese

It is ironic, that this morning, I wanted to write a post about dealing with change, and the first thing I noticed when I logged onto my blog, I was being forced to finally move to the new format of WordPress. Just as other things that have progressed or changed over the years, I am definitely not happy with this one. There was no reason to fix what was not broken.

This reminds me of a a co-worker I once had, a very sweet woman, who, during a time of major change within the company that we worked for, saw many of us having a very difficult time accepting the many changes that the company was enacting. This went beyond getting Grandma to use a microwave or setting a DVR. These were major changes to our work routines, our work quality, and eventually, a reduction in manpower.

Nonetheless, she brought in this book, “Who Moved My Cheese?” by Dr. Spenser Johnson. When applying the book to real life, the “cheese” is what we want, and the “maze” that the mice go through, is life for us, no matter what we are dealing with, and what you need to do to be successful getting to that “cheese.” A simple read, but a profound example of life.

This thinking actually applies to many aspects of my life. In many cases, I am able to roll with most changes, some, not so easily. And there may be one or two that I am willing to fight to the death over. But one that has been the most difficult for me to adjust to, and every now and then, I am reminded of what I must accept.

The late effects of my cancer treatments have wreaked havoc on my ability to enjoy things in life I once did. Unable to tolerate extreme cold, a low endurance, and pulmonary issues leave me unable to do one of the things I enjoyed doing most, skiing. Upper body muscle issues no longer leave me able to play a variety of sports that I once used to, softball, bowling, and even enjoying nature, whitewater rafting. The list goes on.

Having two young children, one now an adult, another soon approaching that age, I learned to substitute my desires to enjoy those things I once did, with enjoyment of watching them, participate in fun adventures.

As my daughters have gotten older now, the challenges of entertaining them, occasionally find me wanting to push my limits, for just one more opportunity to do something with my daughters, not because I think I can, but because I want to. But the fact is, I cannot.

And that is how I deal with these sometimes overwhelming feelings. Being older now, my daughters are very aware of my health issues. They have witnessed my “breathing” attacks, have been told about my history, and are very well aware of others like me, who have children also. They also know, the time they get with me, is special and not a guarantee with my health.

The Covid19 pandemic has definitely made things even more challenging for me when it comes to providing entertainment for my daughters. I do all I can to protect them and prevent them from contracting it while with me, but they also understand my vulnerabilities.

So, when I find something for them to do, out doors, meeting the recommended criteria for safety (distancing, masks, and hygiene), I remember what it was like for me a long time ago, being able to enjoy that activity, and I want to do it with them now.

But I cannot. And I was reminded of that, as my daughters returned to shore. They found out the science of water current, that it was much easier going downstream for half of the journey, but a lot harder coming back, and their arms and shoulders let them know that lesson. This would have been a disaster for me, risking tearing both of my rotator cuffs, doing just this simple and easy paddling. As much as I wanted to make this trip with them, all I could do is watch.

I am reaching the end of their childhood. And as I go through this maze, and the cheese continues to be moved, I realize when I get to the end of the maze, it is going to be the memories of the enjoyment I had, watching my daughters share, laugh, and enjoy their childhood with each other.

Yo! I Made It!

Of all the reasons I have had to celebrate over the last thirty-one years of my cancer survivorship, today ranks up among the top.  To my daughter’s credit, she is taking this day a lot more reserved than I am.  It is a milestone that many teenagers see as a big deal, second only to when they turn old enough to get their driver’s learning permit.  Turning age 18.

Like many of my friends, I now have an adult age child.  And while her milestone by itself is a big deal, it was a day that on numerous occasions, I almost did not get to see.

In 1989, I was told it was not likely I would have a family due to my treatments.  In 2008, less than four years after adopting my older daughter, and two years adopting my younger daughter, a fatal heart condition almost cost me my life.  Four years after that, a diagnosis of sepsis via aspiration pneumonia again almost took me away from my daughters.  There are numerous other health issues that I deal with.

But, this entire time, I have had one constant from the beginning, who planted the idea in my head, the doctor who recognized what was happening to my body because of the treatments I underwent for my cancer.  I will never forget his words:

“I cannot reverse what is happening to you.  I cannot stop it either.  But, we can try to slow things down, manage what we can.  I want you to see your daughters get older, graduate, get married, and someday make you a grandfather.”

This was a lofty goal considering what I had just been through, a pipe dream, just blowing smoke up my behind.  But he really had me believing that.  And here I am, celebrating my daughter’s 18th birthday.

I did it!  We did it Doc!

I get so many eye rolls from both of my daughters because of the big deals I make about their milestones and achievements.  Their youthfulness has shielded them from the severity of the many events that I have faced.  But as they are older, and aware that there are more issues coming my way, they are quickly understanding, each new day is another milestone, another memory for me.  And it is a big deal.

I consider myself doubly blessed.  In just over two years, both of my daughters will be adults.  I will do all I can not to watch the clock that is ticking against me at that point.

Post Navigation