The “Ultimate” Validation
I have actually tried to write this post several different times over the last couple of years, each time prompted by an event, either in my personal life, local news, or spoken by an acquaintance. No matter the story or situation, the goal is, or in some cases the comment was, “doing what they enjoyed.” Yes, ultimately these situations that I am referring to will end, or will end sadly and tragically.
The first prompt I started was a couple of years ago, following a tragic car accident, which resulted in the death of a sixteen-year old. Something that could definitely have been prevented, the teenager’s death was somehow validated because the teenager was doing what they enjoyed, racing their car. Excessive speed was the cause of the accident and the loss of such a young life.
At that time, with two teenage daughters myself, I cannot say that I was shocked to hear the attitude, that at least the teenager died doing what they enjoyed. But I definitely was extremely saddened that such a young life was not valued more, or did not have the belief or hope that there was so much more ahead of this young person’s life.
This is not a behavior limited to the young. I have known several adults, younger than me, who died following medical events, but the sentiments were often similar, “at least they were doing what they enjoyed.” As someone who has issues reacting to health symptoms in a timely manner myself, there is a possibility that some of these deaths may have been preventable with even some minimal medical intervention. But then again, to seek out a doctor for something that does not feel right, might just interfere with pre-made plans that had been much anticipated. So that when something does happen, the loss gets validated if it occurred when the individual was having their enjoyment. And again, those I am referring to, were all younger than me.
But to give in to this concern, health over enjoyment, in recent years, a new stigma had developed, called living in fear. “Don’t live your life in fear” was something heard often during the Covid pandemic, when we were warned to follow simple and basic precautions to avoid infection or spread of the virus that killed millions of people. Many pushed back quite vocally, “I’m not living in fear.” And of course, while many came down with Covid and got through it, likely not acknowledging how much they would have preferred not getting Covid after the fact, there are some who got Covid, and died. Again, those that I know in this situation, were all younger than me, and for all purposes, were in better health than me. But they were doing what they enjoyed when they contracted Covid. I just struggle to understand that their lives were only worth that much, having nothing further to look forward to.
And then just the other morning, a social media post shared by a fellow cancer survivor, and I want to add, a very positive-minded survivor, was given some difficult news as is often the case for myself and other survivors. While the news is not what someone wants to hear, I believe that my friend will continue to live their life as they always have, for whatever they have left. The reason that I believe that, was along with their news, a story was shared about a 104 year-old woman who broke the record for skydiving. I had seen the video before, but to see the joy on her elderly face during the free-fall and landing was definitely inspiring.
My survivorship has kind of been like a Charles Dickens story, with “the best of times and the worst of times.” The first half of my survivorship, barely giving any reflection of my battle with cancer, even as I provided support and advocacy for other cancer survivors, I never thought anything of my own history. But that changed in 2008 with the introduction of my first late side effect from my treatments for Hodgkin’s Lymphoma eighteen years earlier. I was not doing anything spectacular, just doing what I wanted, and had been ignoring symptoms. And having two toddlers at that time, I had a long life I was expecting. That had almost been taken away from me, all because I was “doing what I enjoyed” instead of dealing with my health, a.k.a. “living in fear.” It turns out, that I had been diagnosed with a “widow maker” of the left anterior descending artery, the main artery to the heart. While doctors do not normally refer to this situation this casually or crudely, the description could not be any more literal. When a blockage to the LAD gets to this stage, you have a fatal heart attack, and as the name implies, you die, at least without immediate medical intervention.
If you have followed my blog, which I started back in 2012, I got involved in a cancer survivorship clinic at Memorial Sloan Kettering Cancer Center where a battery of tests had been performed, and it was determined that I had a lot more conditions to be concerned about, which I have documented often here on “Paul’s Heart.” With more than a dozen diagnosis, and being watched for at least three developing cancers, many around me have expressed their thoughts to me, how “awful” it must be for me to have to deal with doctors all of the time, seemingly forever. And in the beginning of this stage of my survivorship, yes, it sucked. But what sets me apart from the others in this story (besides the other survivor that I mentioned), I am living doing what I want to do, and not in fear. I do have physical limitations these days such as the picture above shows. I took my daughters parasailing and as they begged me to join them, and oh how I would have given anything to do so, I had my 3rd heart surgery coming up, and to be stuck 300 feet up in the air in the middle of a cardiac event was not a memory I wanted my daughters left with. But I was left with the best memory of that trip, the smiles as they were being pulled back onto the boat.
There is an advantage to my situation, seeing so many doctors so often. They are helping me to have more time. And if something were to happen tomorrow, yes, I will be doing what I enjoy. But I have so much more that I want to do. If that means not taking any unnecessary risks (at one point, my bucket list had bungee jumping and skydiving), I know for a fact my heart gets all out of whack and takes a long time for it to recover and settle down, it is not worth it, because of what is still ahead of me is more important to me, if I can get there; my daughters’ graduating from college, getting married if they choose, and maybe grandchildren. The bottom line is, I am doing what I enjoy while at the same time, keeping my chances of the goals ahead of me.
And there is a reality. The side effects that I deal with from my treatments are manageable to a point. I have had three heart surgeries, and the reality is all three will need to be addressed again some day, likely within the next 5-7 years and I will have a decision to make, because the risks of a second intervention are extremely high and it is possible I will not take that risk. I am in the process of being diagnosed with lung cancer from a nodule discovered years ago, now large enough to be of concern. And there are two other areas being watched for other cancers. This is why I am focused on doing all that I can to get to those goals, not taking risks. I am making memories that I want as time goes on. And clearly I have had many more than I could have imagined. Even Covid has not prevented that.
But for those of my friends that have passed so soon, I often wonder, had they done the “downer” thing, and perhaps gone to the doctor for check-ups, would they still be here today, enjoying the things they do, instead of that last act, being their final enjoyment.
Paul's Heart 