Paul's Heart

Life As A Dad, And A Survivor

The Impact Of Support

One knock on me, that I have had my entire life, at least once I hit my teen years, is that I make myself the last of priorities. Sure, you will hear me give the “airplane lecture… ‘put your mask on first'” frequently, but I rarely if ever do that myself. In school, friends constantly found that they could come and talk to me, and I would listen, just listen. Anything said to me, was kept in confidence, because if someone was confiding me, it was likely because there was some level of emotional hurt that they were dealing with and I did not want it made worse. But I wanted to make sure that they knew they were not alone.

I did not give any advice back to my friends. To be honest, I did not know how. An odd thing about how I was raised, rather the environment I was raised, we did not talk about our emotions. We did not show our emotions. I was taught to care about others before myself, empathy, the ability to care about others and what they may be going through.

This may seem like a good quality to have, but there is a huge difference between having empathy, and being an empath. Understanding a struggle that someone is going through is different from actually feeling that struggle. An empath will likely not set any boundaries, actually putting their own mental health in strain. What makes being an empath real bad, is not knowing when or how to turn “it” off.

As a kid, I was perhaps a lot more sensitive to others and with others. It really comes quite naturally to me to want to help, and to be there for others. It is what I have been taught.

But what happens when the table gets turned? The shoe is placed on the other foot? Readers of “Paul’s Heart” and so many of my closest friends have never seen or heard a “Paul” that has been private, keeping everything to himself. You have to go way back into my teen years, and early 20’s to see that at one time, I was quite private.

And then came the diagnosis of Hodgkin’s Lymphoma.

I went to my appointments alone, including the one when the doctor told me I had cancer. I went to my treatments alone. I could not lean on my family, because that is not what we did. Even the one I considered closest to me, my fiance, barely acknowledged what I was going through. In the beginning, I actually offered her an opportunity to leave, instead of getting married, as I knew our married life would be much different than she had dreamt. I did not even hear from my father, with whom I was estranged, later to discover, he could not muster the strength to see me perhaps face the same fate as his mother, who died from cancer of the gallbladder.

Back in 1988, there was no internet. Hell, I did not even own a computer. Some, with well intentions, tried to inspire me with “someone they knew” or knew of, that had Hodgkin’s Lymphoma and had beaten it. My uncle had mentioned someone back in the 1970’s, and I had discovered a former football player for the New York Giants, Carl Nelson, had beaten Hodgkin’s. This was going to have to be enough. It wasn’t.

I broke down. Wandering through the hospital, I came across an office that provided emotional support to cancer patients. Once inside the office, I was greeted by John. As he came out to greet me, I could see he was tall (everyone is typically taller than me), but he barely cleared the doorway. I have no idea how long I spent with him that first visit, but I know it was a long time, and for the first time in my life, I reached out for help, and not only did it make it matter, it made a huge difference. Between John, and my oncology nurse, Brenda, I would rely on them for all of the emotional support that I needed to get me through my treatments.

Are you ready for the coolest thing? I got to reconnect with both of them, after 32 years. And not only that, my daughters, who were not even born during the time I battled Hodgkin’s Lymphoma, having only heard of that part of my life, got to travel back in time, and meet two of the most important people I consider the reason I am still here today. Both of my daughters knew I had cancer. But meeting John and Brenda made it very real to them to meet two who saved my life.

I think I can speak for both John and Brenda, this was a joyful reunion. As I have mentioned previously, there are many endings that do not end happily ever after that I am sure both of them have experienced. I am one of their happily ever after stories, though not perfect (two divorces and a slew of health issues).

Relationships are the one support we expect to have when we face our darkest challenge. I am not the only one to experience this either. And times have not changed. But that is not to say, that it cannot happen. One of my biggest inspirations of cancer survivorship actually comes from someone who only has 1/4 the survivorship that I do, and has one of the brightest futures ahead of her.

You can read about Stephanie’s amazing journey which I have written about many times on “Paul’s Heart” over her brief survivorship. One of the biggest factors of her survivorship, is the amazing support that she had in her battle. Stephanie will not shy away from speaking how difficult it was physically and emotionally, but she was surrounded by family and friends in large numbers. But it was someone who had come into her life, following her diagnosis, that would be her strongest supporter. Now married several years, and a super-handsome and super-happy young son, Stephanie, along with her family and friends, has an amazing support network in her survivorship.

Unlike my days, where all we had was electricity, today there are countless resources for support. You can still find face-to-face support in the form of trained counselors and other therapists, or via the internet. I myself was trained as a certified peer-to-peer counselor by the American Cancer Society soon after I was done being treated. Who better to relate to the cancer experience than someone who has actually gone through cancer?

Though I did not have access to the personal support like so many patients and survivors do today, in my survivorship, I have personally met so many, not just online, but in person who have had to face some of the unique health issues attributed to our treatments, something that not even medicine is on the same page.

It is not always easy to rely on others, especially strangers. You might have a spouse or significant other who might feel threatened or unappreciated with you having outside support, “why aren’t I good enough?” It has nothing to do with someone personal being good enough for that particular need. I wish there was a way to convey that it is the personal correlation of the experience that can only be appreciated by someone else who has gone through it.

But another complication with close relationships, resentment. It can be a relatively new relationship, or a marriage of forty years. While Stephanie has admitted how strong the relationship is with her husband, like everyone else, they have had some challenges, but, they are strong enough, and open enough to face everything together. This is not always the case for others. There could be resentment, or an attitude of “I didn’t sign up for this,” or even fatigue of being the caregiver. I have seen relationships endure in spite of these struggles and I have seen the occasional horrific dissolution of marriages, nasty enough, that the caregiver filing for the end of the marriage actually resorts to using the very health issues against their spouse, that they felt they could no longer support.

Peer support does not come without its pitfalls either, though for the most part, it is without the daily domestic issues faced by couples. As I mentioned earlier, I have met so many other survivors and patients. This means that I have said goodbye to so many as well over the years, either from the Hodgkin’s itself, or issues related to the late effects. Every person that I have met, whether online or in person, we have that personal connection. We know that we “get it” when it comes to understanding the things that we face. And our lives are always touched in such a positive way for whatever amount of time we got to know them. Many times, it is those memories that push us, to push each other when we need the emotional kick in the pants, or just someone to listen.

Much to the chagrin of many in my life, I have made the decision to make my life public. I have been this way since my diagnosis. I want others to know that cancer can be taken on. I want others to know that there is help for whatever part of the cancer journey is being faced. I want people to know, that others experience similar situations, that while your brother, mother, next door neighbor, co-worker may not understand, there are those that do. The help does not have to be the internet, it can be in person. Most importantly, and I cannot stress it enough, the most important thing you can do, when faced with a trial such as cancer, is lean on others. Sure, there will be times that you feel alone, maybe because that is how you may be being treated. But it doesn’t have to be that way. Find some, lean on someone. It makes a difference.

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