Paul's Heart

Life As A Dad, And A Survivor

A Relatable Perspective

When a particular resource comes across my feed, I always want to share it here, as it definitely will help some, if not many. The link I want to share today comes from a TED “talk.” TED is a non-profit organization hosting expert speakers to give short, influential and inspirational lectures. Admittedly, I do not make a habit of watching them, as most of the topics involved subjects that do not concern me. But this particular “TED talk” hits a personal note for me.

Suleika Jaouad is a young writer, speaker, and advocate, and by young, only in her 30’s, who wrote her column, “Life Interrupted” for the NY Times, as well as a book titled, “Between Two Kingdoms.” The link that I am going to share, comes from a TED talk that she gave several years ago titled, “What Almost Dying Taught Me About Living.”

Ms. Jaouad was diagnosed with leukemia back in 2011 just after graduating college, about the same age as I was diagnosed with Hodgkin’s Lymphoma, she was given only a 35% chance of survival. Spoiler alert, she had achieved remission and seemingly had gotten back to living, something all too familiar with cancer survivors. And just like many of us fellow survivors, it was not the kind of “return to life” that we had been expecting. And that is what her talk was about.

The talk is just over seventeen minutes long (with commercials), but filled with so much insight and understanding of the mind of a cancer survivor, I know from watching, I still have things to learn even about myself, nearly 34 years out from Hodgkin’s Lymphoma.

She speaks of her four year battle, yes 4 YEARS! Instead of pursuing her career in journalism, she spent those years becoming an unofficial medicinist, someone forced to learn what is going on with their body medically, and what needs to be done. She talked of people treating her differently, that any concept she may have had about her future, would never be the same. She talked about total loss from employment, a place to live, and something hard to imagine as an adult, the loss of independence.

And then she struck the first nerve with me, when she spoke of associating with other cancer patients, because that was the world she was a part of now. Something only a cancer survivor or current cancer patient can appreciate, even finding humor or entertainment, even among the difficulties of treatments.

Ms. Jaouad’s lecture was not entirely about her cancer journey, and for what was probably the longest years of her life, she only committed approximately three minutes of the seventeen minutes to her battle. She then turned to survivorship.

Upon entering the survivor stage, getting into remission, the people around us have changed. Just as we may have been treated differently during our treatments, how we get treated after treatments, will also change, and not always for the better. We get anointed with unsolicited titles such as a warrior or described as courageous, brave, or inspirational, likely better of a person for what we had been through. When I heard her mention that last part, I was like “wow, I dislike that even more than I originally did when I first heard it years ago.” While similarly I think she and I have in common, cancer definitely changed out lives, it is hard to say if it should even be judged as if it was for the better. Who is to say there was anything wrong with us before we had cancer?

Life after that final treatment, after a patient is in remission, is never, and will never be the same. I wish this would have been explained to me over thirty years ago. Clearly, patients still are not being prepared for that today. Because that is at the heart of Ms. Jaouad’s lecture.

Ms. Jaouad states that labelling us with the title of warrior, or portraying survivors as some sort of Hollywood story of success, one of which we should be grateful for, actually does more harm to us, rather than encourage us. And I would agree, even all of these years later, I am uncomfortable being told I am an inspiration, surviving decades like I have. Because the truth is, too many do not, and it is hard to justify who is lucky to and who does not. And this by no means that neither Ms. Jaouad or I are not grateful, we definitely are, but this is the foundation of what is known as Survivor’s guilt.

Relationships permanently change even if they remain in tact, by the thinnest of threads. But there is one relationship that seems to withstand the cancer experience, and that is the bond that cancer patients and survivors make with each other. I often use the expression when talking to other patients or when dealing with other situations, “I understand” as opposed to “I know”, because even if I am talking to another person with Hodgkin’s Lymphoma, their experiences are still different from mine. There is no way for me to know how that person is feeling inside. But I can understand.

Then there is the physical toll on the body. It takes a long time for the body to recover from the immediate side effects of the treatments. And then, if you have followed my blog for even just a few months, that toll continues to grow even decades later. The body NEVER recovers. Again, not that it would have changed my mind to go for cure or not, but it would have been nice to be able to try and prepare mentally. And according to Ms. Jaouad’s story, decades later, patients are still not being prepared for this reality, the inability to maintain a full time work schedule, frequent absences, and risks with other employees who come to work sick, exposing the compromised survivor’s immune system, more susceptible to illness.

Emotionally, patients STILL to this day, are not encouraged to get emotional help to deal with their fears of relapsing, grief, and yes, PTSD (post traumatic stress disorder), yes, the same disorder that most people think only those who go to war can develop. Cancer survivors, survivors of any traumatic event, car crash, earth quake, Covid, can develop PTSD. Yet, we do not prepare the cancer patient and survivor.

Ms. Jaouad then finishes her lecture about wanting to make her survivorship matter. I cannot speak for her limitations, but it is likely, like me, she cannot donate blood or organs. I know I will never discover anything important. I want to make my survivorship matter. And that is why I write “Paul’s Heart”. That is why I am still active counseling cancer patients. That is why I participate in forums all over social media in regard to health care and survivorship. That is why when I give speeches on survivorship, I write a new speech for each one, because in between speeches, I have learned something new about myself, and my survivorship. My hope, my wish, is that I reach just at least one person, and it makes a difference. To my last breath, this is how I live my life.

My relationships, which there are many, but very few that are not cancer related, are important to me. I meet and keep in touch with as many fellow survivors as I can, not just because I care about them, but because I know that if the time came, that I needed some unquestioned understanding, it would come from them. I am not knocking my family or close friends. That is just the way it is.

Please watch the video link. I promise you, you will get much more, listening to her own words. Even better, I now have another book I need to read, “Between Two Kingdoms.”

Ms. Jaouad married Grammy winner and former Late Night Band Leader Jon Batiste a few years ago. Sadly, Ms. Jaouad relapsed in late 2021, going through yet another transplant and more treatments. I have begun to see more stories about her and the life she has gone through, and continues to. But if there is one thing that is obvious from watching her video, she knows what it takes physically, and mentally to get through it again.

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