A “Dance” With An Unwanted Partner
Over the years, I have talked about the many physical late effects from my treatments for Hodgkin’s Lymphoma over thirty-five years ago have impacted my life. Unintentionally, I do not talk often about the mental or emotional struggles that also come along with survivorship. I cannot say that there is a reason I do not, as there is no reason not to, other than the physical aspects often take front seat when it comes to attention.
There are two issues that I deal with emotionally/mentally, survivor’s guilt and post-traumatic stress disorder (PTSD). To anyone who has not had to deal with survivor’s guilt, that opinion may be as simple as “why would you feel guilty about surviving?” While I cannot speak for others, in my case, it is not that I feel guilty for surviving cancer, far from it. But understanding what is behind that feeling, for which there are many factors, not the least of which is unfairness why one survives and another does not when the basis of the trauma, such as a type of cancer, can lead to feelings of remorse, anger, struggling to understand what makes my life so different or special than someone who does not survive. I get it, there are many factors that decide on remission of Hodgkin’s lymphoma from the type of Hodgkin’s, overall health of the patient, treatments, toleration of treatment, and even mental fortitude just to name some. So for me, I may be able to just say, it just is not fair. But then there is also at least some feeling of responsibility in today’s age of social media, could there have been some information that I could have gotten out that could have turned things into a more favorable income?
I have been dealing with Survivor’s Guilt for all of my survivorship. It is not always present, but always guaranteed to appear when I am in any communication with another patient or survivor. And it is not as simple as just “walk away from the world of survivorship and cancer, give your soul the break it not only needs, but deserves.” And that might help. It might not. But the truth is, that is not who I am. I am just one person. But as our society rarely ever puts the spotlight on survivors, including major cancer organizations, I have taken it upon myself, one person at a time, one Youtube or TikTok at a time, one private message at a time, to make that difference to someone who is struggling or needing inspiration. That is how I deal.
I also deal with PTSD. No, I am not a former military vet whom normally gets associated with this condition, resulting in flashbacks, nightmares, and horrible memories, as fresh as the day the trauma happened. But in fact, PTSD occurs to in any person experiencing any kind of trauma such as accidents (any transportation), natural disasters, assaults, and yes, health emergencies. I have several triggers from my days as a cancer patient as well as through my survivorship. Yes, I still deal with this PTSD to this day. My episodes can last weeks, or even months depending on the trigger. And while I consider myself a very positive minded person, these attacks definitely cannot be hidden from those around me. Because I know my triggers, I generally try to avoid them, which being a health advocate, is not always easy. Fortunately, I have resources to help me deal with my PTSD when it arises.
One piece of advice to those reading this, do not say this to anyone with PTSD, “just get over it.” To me, that is as hurtful and awful as being told I had cancer, or that “if you were going to get a cancer, Hodgkin’s is the one to get.” There is no just “getting over it.” Depending on the current event or episode, determines how long it lasts for me as I try to work through it. But understand this, when it hits me, and I am sure it is the same for others, the memory or flashback is as real as when it happened the first time. I wrote about one of my episodes in my book “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor” available on Amazon.
I am currently in the middle of one of my more mild attacks. In fact, it actually might be a combination of both my survivor’s guilt as much as PTSD. It is really hitting me kind of surreal-like. I have no idea what day it started, other than recently, and no reason to have been triggered, though it might have been during a live stream I recently done where I am likely to mention that I was “diagnosed at the age of 22 with Hodgkin’s Lymphoma.”
For some reason I got hit with a realization out of nowhere, my oldest daughter is twenty-two years old. Again, this feeling hit me out of nowhere recently, nowhere near her actual birthday several months ago. Or even during a recent visit with both of my daughters, both adult age now. Twenty-two is when I was diagnosed.
To be clear, and if you follow my page, you can tell my daughters are adopted, so the plus side is that there is no chance of them inheriting any kind of chances of developing cancer, especially Hodgkin’s, a legitimate concern of many of my fellow survivors who are blessed to go on through life, having biological children. Though there is no confirmed studies on heredity and Hodgkin’s, I am aware of some instances of multiple family members having Hodgkin’s. But for my daughters, they are definitely in the clear.
And this is not about me thinking or feeling the worse for my daughter at her age, because that is what I experienced. After all, she is doing great, doing the things she wants and needs to be doing right now, and has her “shit” together or at least as well as someone her age can have. Again, I am a positive minded person, and as Dad to both of my daughters, I could not be happier for both and what they are achieving and what I hope for both. They both get as much positive energy from me as I can.
No, this episode of PTSD for me, mild or not, is a reminder of what I lost, no, what was taken from me. I remember my life very clearly at the age of twenty-two, good job, engaged, and just enjoying life, great times ahead. And then, gone. There is actually another concept I have not given myself to do that I have become aware of, and perhaps in this instance, it might actually help in closing at least this event, mourning or grieving that “life” that was taken from me. That will clearly be another post.
Regardless of my survivor’s guilt or PTSD, I am certainly glad for the thirty-five plus years I have lived, and grown with, and would not trade anything that happened over these four decades that have blessed me with my world, my two daughters. But like I said, while my life has worked out, it still is not possible to “just get over it.” And it is likely, for however much longer my survivorship will last, if I ever will.
Paul's Heart 