Tonight's picture was taken in August of 2008. By that point, Mattie was a month into treatment. That weekend, Mattie's cousins from Boston visited him. It was a lovely day, so instead of sitting in the hospital room, we asked Mattie's nurse, Miki, if we could go outside the building on the second floor commons area. Miki understood immediately the importance of having this outside time and time to connect in a less threatening environment. The decision to go outside was great for us, but for Miki that meant more work. As she had to set a timer to come down the elevator and outside to check Mattie's IV and take his vitals periodically. We will always be grateful to Mattie's outstanding nurses who understood that effective care had to be delivered in a compassionate and humanistic manner.
Quote of the day: You know, once you’ve stood up to cancer, everything else feels like a pretty easy fight. ~ David H. Koch
This weekend, I received an email from a cancer friend in Canada. He asked whether I could retrieve an article for him. What am I talking about? Well most of us have access to articles in newspapers and magazines. But scientific or peer review articles are materials that are harder to find. Why? Because in order to read such research, you need to have a way to access these journals. Certainly one could go into a public library and work that route. But what an educational/research institution has access to will far surpasses what you can get in your neighborhood library.
It is thanks to one of the faculty members at my alma mater, The George Washington (GW) University, that I will have indefinite access to their on-line library collection. A gift that is hard to put a price tag on, because we couldn't afford such a yearly subscription to all these databases as a private citizen. GW considers me a permanent visiting scholar, which enables me to access scientific articles from all around the world. I am not sure why GW has done this for me. It could be my years of service at the University, as I did a lot of work there during and after I completed my PhD. Or perhaps some of the faculty are in support of the work that the Foundation does and understands in order to continue this research, I need access to peer review materials. Which ever the reason, I am grateful.
So when my friend wrote to me on Sunday, within minutes I was able to search GW's system and I downloaded the article for him. The article was entitled, Family Is Who They Say They Are: Examining the Effects of Cancer on the Romantic Partners of Adolescents and Young Adults (to see the abstract:
http://journals.sagepub.com/doi/full/10.1177/1074840718786985). It is amazing to me that with a couple of clicks on the computer, one can have access to so much material. As I remember when working on my doctorate, so much involved visiting the university library, searching for actual journals in the bookshelves, and making xerox copies of articles to read at home. GONE are those days! In fact a student never has to leave the comfort of one's home anymore to write a research paper.
I love when people send me links to articles, because what I usually do is skim or read them. It exposes me to more material than I may find on my own. What was intriguing about this article was it focused upon the psychosocial consequences of the romantic partner. A partner involved in a relationship with an adolescent or young adult who has cancer. Typically only the child/teen and family members have been the focus of research. But this article makes a very valid case for why this circle needs to be expanded because there is a profound effect on the partner.
The article discussed in length why some romantic relationships are severed with a childhood cancer diagnosis (e.g., the diagnosis is just too much for the partner to manage and walks away) and some remain intact (e.g., the partner felt as if he/she was embraced by the family and loved this special connection and bond). As I was reading this article the first thing that dawned on me was that this research applies to friends too. Not just romantic partners. I lost many friends during Mattie's journey, and though I don't dwell on it, a part of me always wonders? I wonder, how did my friends walk away from our long term friendship because what I was dealing with was too much for others to handle emotionally?
I have no answers. The article talks about not judging those who walk away. Of course they are specifically talking about teenagers who are walking away, and I am talking about adults. I can try to be empathetic and not to judge their actions but it leaves me wondering as to the quality and depth of those relationships.
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