The question is, “if you had the chance to go back in time, and re-live something over again, what would you want to re-live and would you do it?”
First, I need to offer a disclaimer and “nerd” alert. I am a huge fan of the television show “Quantum Leap” and the movie “Back To The Future.” So, to understand the above question, I would have to understand the ramifications and risks associated with going back in time. Even the slightest change in the past would have a major impact on the future.
For instance, though there is no known cause of Hodgkin’s Lymphoma, if I were to relive any time period just before my diagnosis, and somehow end up not being diagnosed with cancer, on one hand that would be a great thing. But tragically, that would erase all that I have accomplished over the years, and take away the two most important people away from me, my daughters.
There are definitely things that I would not want to relive again, all losses of loved ones.
As my path through Fatherhood was not as I had originally planned, I did the best that I could and accomplished what I needed to. I have plenty of photos to look back on to relive all of those moments.
There is one moment in my life, that I do wish I could live over again, but this would come at a risk of changing history. Because there would be a slight/major change in the moment.
One of many stories I had written over the years was being performed (read) live, by professional actors. It was an achievement I never thought possible. The story was about the passing of my Father. But being recently separated at the time, I wanted my daughters to attend this moment with me, but was denied by their mother. I had promised that everything would be done to make sure they were prepared for, and able to attend school the next morning. I was still refused.
It was one of the most powerful and surreal experiences in my life that I do not know if I will ever get the chance to experience anything like that again. I do not know if getting to go back, have my daughters sit by my side for the performance, meet the actors afterwards, and listen to the kind words of audience members would change any direction of the future. But if I had one moment, to relive over again, this would be it.
If you have ever been in a doctor’s office, not feeling well, there is a good chance that you have heard this question posed to you… “so when did you first notice…?” Three years ago, I can pinpoint to the day, that a condition that I was aware of with my cancer survivorship, finally needed to be addressed. Anyone with heart issues, regardless if cancer was a predecessor, knows at times, breathing can be difficult. If you have a valve issue, as I did, once it hits a severe point, you practically collapse or actually do if not treated quickly. That is exactly what happened to me, in August of 2022, my aortic valve let me know, it was finally time to get dealt with as I was collapsing while crossing a street.
I am not sure what prompted the need for retrospect, but a recollection and telling of a story, of my early days as a survivor of Hodgkin’s Lymphoma, answered a question I had never really thought about, I just accepted it as a fact of who I was. The day I became an advocate.
I had just completed my treatments for Hodgkin’s, both chemotherapy and radiation, had gotten married, and while happy with my current employment, I felt I wanted more. My stepfather, an insurance agent for a nation wide insurance company (I am not actually saying the name), and had offered me an opportunity to come work for them. I was fairly personable, and working a commission paying job, I felt would really be a huge opportunity for me. So I hit the books, to study and test for my license which I excelled at, aced my interview, and passed my physical, which was not bad for someone who had just gone through a two year cancer battle. Then a phone call came.
“Hi, it’s Jim (he was the district manager). Listen, everything went well for you, however, the company would prefer that you were in remission longer from your cancer. I’m sorry. Maybe a few years down the road you can try again.” That is exactly the conversation that was had. I will never forget the words. I was being discriminated against, because I had cancer. It did not matter that I was in remission, which was the hardest thing I had ever gone through in my life.
I was fuming. My stepfather asked how everything went, he of course was disappointed, but he was not going to argue on my behalf, he needed his job. I reached out to my counselor at the hospital, met with him, and just released a wave of emotions. Was this how my life was going to be after cancer? Everyone and everything was going to be held against me, because I had cancer? What the fuck did I fight so hard for, if everything was going to be against me? His name was John, and he encouraged me, that I could try to file a complaint with the Department of Labor in Harrisburg, Pennsylvania. It was a long shot. I had no money to hire a lawyer, but John assured me, he was willing to stand by my side and travel with me.
In Harrisburg, there was John and I, a representative from the DOL, and of course the district manager and legal representation from the insurance company. There was no money involved as I was not seeking any. This was about principal. I did not want the company to get away with what they had done. There was a fatal flaw in my argument. The state’s rep explained, “their manager claims that they never withdrew their offer of employment, that you withdrew your application.” I denied this, and it was clear the DOL believed me. But still, without any proof, it was my word against his. I had lost. Or so I thought. The agent from the DOL began…
“It is our duty to inform you, that while there is a stalemate involving the conflict between Mr. Edelman and your company as to what happened, we need to let you know, that as of July 26th of this year (1990), any action of discrimination based on health is illegal as stated in the Americans With Disabilities Act. What this means, is you can no longer ask a perspective employee about their health, or require a physical, until you have deemed them of the status, intent to hire upon passing said physical.” And with that, the agent placed a copy of the ADA in front of the lawyer and continued, “you will need to make the correction in your hiring process nation wide as this is now law.” While the ADA requirement was brand new, it was not well known. And this company was to become one of the first, faced with immediate corrective action to be taken. I may have lost my battle, but I won the war.
That was my moment, when I knew, that I had discovered a purpose, being an advocate. It is never about money for me, NEVER! And whether it is helping a cancer survivor navigate health care, assist with international adoption, heart disease support, protecting public education, or providing support to parents struggling with divorce and custody, I will be there. This is who I am. I am just one person, so I do this on a much smaller scale. But for me to be able to help just one, like one person, John, helped me, that is what I want to do, and I do not care who you are.
Take a story that came across my feed yesterday. It was a Dad, from what I could read through the emotions, facing the loss of his rights as a father, but also at the risk of losing any rights of custody. There was a problem. I was too distracted by the way that he wrote his post. Clearly he was upset, but his thinking was so outraged and filled with irrational thoughts that if he was to appear in front of a judge anytime soon, he would definitely lose everything.
While the terms he was using in his “claim” were purely political, and on the verge of conspiratorial, I wanted him to realize, that he needed to get back to the basics of what was important in all this, his child. He could not afford to dwell on how he felt lawyers and judges might rule based on political biases and beliefs. If he came off as anything less than a concerned parent, who had rights to a natural relationship with his child, and instead seen as a danger, he would lose it all.
It took a few back and forths, but I finally got him to stop using certain political terminology, and instead, listen to how to present what would not only be in the best interest of the child, but in his case, allow him the efforts he felt he needed to have in place to “protect” his child.
I advised him, he needed to modify his custody order to achieve what he wanted to do. This was not going to matter if his ex was going to try and get full custody and take his rights away. As long as he remained calm and focused on what was important, the child, a judge should never take that away from him. So, he needed to put that aside. Instead, he needed to make sure, in his order, that he had 50-50 “legal” custody, which is different than physical custody. Legal custody gives both parents the right to make decisions, equally, that both should have a say in anything needed to be taken care of with the child. The most important part in his situation. He needed to make sure that it was clearly written, that nothing medical could be administered or performed, without both parents approval and in the case of an emergency, only if ALL efforts were exhausted in trying to reach the other parent had failed, would that allow anything to proceed.
I know first hand, that trying to argue emotionally and fired up in front of a judicial official at any level, is guaranteed to fail. And that is exactly where he was heading otherwise. It did not matter if I agreed with his position, the child, and the intentions of his ex. It did not matter if I agreed or disagreed with his politics, religion, or morals. This is what an advocate does.
I have no idea how his situation will turn out, as he has stopped communicating. I honestly doubt, given his “temperature,” that he would take my advice. All I know, is I did all I could, provide a voice of reason, from someone who had been there, done that.
In my 35 years of survivorship, this is who I am, whether it was health related, school related, adoption related, or custody related, even employer related (I was a good union shop steward too), I was always about support, protection, and doing what was right. Money is never an issue. Just do the right thing, and you will never have to deal with me.
It is one of the most discussed topics across the many forums that I participate in, feeling as a burden on family, relationships, and friendships as a result of a diagnosis of a serious illness. Within the family unit, support is expected. In marriage, vows often include the promise, “for better, for worse, in sickness, in health.” Philosophy comes in with the cliche “what doesn’t kill you, makes your stronger,” and religion plays into it as well, “God doesn’t give you more than you can handle.” The fact is, none of this is helpful to the one and only person that is faced with a malady of a chronic or severe illness. It actually makes it worse.
No one volunteers for something bad to happen with their health. Even if we happen to have a lifestyle choice that comes with potential health issues (such as smoking, which I personally do not do), we do not choose to face any serious health issues that may come. What we rely on, is for those around us, to be supportive, empathetic, and to care. We may need to ask for help, assistance, or just an ear. Whether those around us are scared, confused, or just do not know what is happening, it is worse for those of us being right in the middle of a diagnosis or treatment. For those of us dealing with chronic health issues, we want to understand your feelings. And with the help of everyone around us, we hope to overcome the things we each are facing.
All too often, this is not how life plays out. As a thirty-three year survivor of Hodgkin’s Lymphoma, I have personally experienced this, and continue to do so to this day, as do many of my fellow survivors. I was diagnosed with Hodgkin’s prior to my first marriage. I offered my fiance to back out, that clearly our future would not be the fairy tale she may have dreamt of, but she made the choice to stand by me. I completed part of my treatments prior to our wedding, the rest afterwards. Our honeymoon plans had changed from an elaborate romantic journey, to a four day trip to Virginia Beach. Often times, we were unable to attend parties and other gatherings, because chemo had wiped me out. I was underestimated because I put all efforts into making it into work every day, which I did. Then came the news, that I was left sterile from my chemo, unable to get my wife pregnant.
When my treatments ended, and happily I was declared in remission, I was expected to put cancer behind me, thought of no more, even though I had follow up appointments to attend, they were simply formalities for the next five years, so I was told. The truth was, emotionally, I was struggling with what I had just gone through. Reflecting back, I felt I had basically gone through my battle alone. With the exception of two of the diagnostic surgeries, every appointment and treatment, I did go to alone. While it was her choice, I also felt I was doing my wife a favor, in not forcing her to see what I was going through. But then again, by not having her see what I was going through, might have worked against me, since all I was letting her see, was that I was alright. So when it came to me needing some help, some time, some patience, it felt like I was asking for the world.
My second marriage, I had been in remission from my cancer, over ten years, no longer seeing doctors. Though my second wife was aware of my cancer past, it was no longer a blip on any radar. Eight years into the marriage, the late developing side effects from my treatments began to make themselves known, in a big way, as I had written previously about my first heart surgery. But it was at that moment, as I was dying, I learned she would not be able to deal with not just this particular situation, but subsequent health crisis that would continue to follow after. To her, it was supposed to be, “operation was done, you’re all better, now get back to work.” Only this would play out many times after, all different issues, yet her response would always be the same. Like my first marriage, clearly this was not what she signed up for, regardless of the vows. So of course, second marriage, second divorce, though my health issues were only part of the reason for this divorce.
Just as those who face such an extreme adversity of a severe illness, not by choice, and without any knowledge or training, the same can be said for those around us, thrust into the role of “caregiver” or at the least, someone who might care. Just as someone recently facing a diagnosis is thrown into disruption, so it is likely those around that person. How the caregiver or loved ones respond affects the perception of and by the person actually impacted, the patient.
Burden or inconvenient? According to Merriam-Webster, a “burden” is something that is carried, can be by force, whereas something being inconvenient, is more of an annoyance. Both terms are not positive in connotation, but one is definitely more hurtful to the subject of the label.
Both as a cancer patient and as a long term survivor, there are many times that I have felt that I have been a burden to those around me, simply because when someone wanted me to do something with them, I might not have been feeling up to at the moment, so instead, plans got cancelled. Or perhaps my appearance, or the mere thought that I was in pain or discomfort was too much for someone to handle, instead they would distance themselves from me, so they would not have to feel bad.
It is a totally different thing all together however, for someone to add to that burden, by making us feel worse for something we have no control over, and honestly, given any opportunity, would give anything not to be dealing with it at all. A spouse might be overheard complaining to someone that they are not able to do anything because of their spouse’s health situation. A co-worker might spread negative comments about a cancer patient mustering all they can do, to get through a work day, but the co-worker deems the effort just not enough.
In reality, these types of situations are just inconveniences, and they happen to be temporary. But to see that, is also to accept the situations that way, is only logical, and it lets the patient off the hook. But either feeling as a burden, or made to be one, is more personal, more oppressive, and actually quite harmful, and counter productive to the end goal, remission, survivorship.
As both a cancer patient, and a long term survivor with multiple health issues, I know, and fell confident to speak on behalf of really anyone dealing with a chronic health situation, no one is more inconvenienced, or understands the inconvenience more than the patient themselves. We would give anything not to have to go to frequent doctor appointments, manage constant pain, deal with massive fatigue. This is our burden, not yours. The last thing we want to be, is a burden to those around us. But what those around us actually deal with, is an inconvenience. Inconvenient because someone you had different ideas of how life would be, or plans needing to be adjusted to adapt for a current circumstance.
The thing is, we know what your are going through. We see that you are frustrated. And we truly wish things would be different. But we also do not want to bare any more than we already do as we feel badly enough. If we are lucky, and our burden comes to an end, celebrate those good moments. If our struggles continue, one thing you need to know, we do appreciate your support and standing by us, supporting us, encouraging us. We know you hurt too.
American Cancer On-Line Resources
Internet support from peers, caregivers, survivors, and professionals in several hundred types of cancers and related issues
