Tonight's picture was taken in August of 2008. I remember that moment in time so well. We were a few weeks into Mattie's diagnosis and treatment began. We tried to keep things as normal as possible for Mattie, but life was anything but normal. That day we took Mattie for a walk with our neighbor's dog, JJ. Mattie and JJ practically grew up together. In fact, I would say JJ was Mattie's first real experience around a dog, and most likely why he wanted a dog.
Quote of the day: It's one of the ironies of human nature that the most sensitive people are generally insensitive to the feelings of others. ~ Ann Landers
I have respect for the work Ann Landers did, but I have to say her quote tonight was off base. Or at least off base as it relates to me and my experiences today. I get what she is saying, that when we are so hyper sensitive to things and what is said to us, that perhaps we internalize these feelings and words making it impossible to look beyond ourselves and our own hurts. I can appreciate this sentiment, but I would say that..... YES I am a SENSITIVE person with regard to the content of today's childhood cancer caucus, but overall, I was angry as it related to the overall childhood cancer landscape.
For eight years, Peter and I have gone to the childhood cancer caucus on Capitol Hill. It is held every September, as September is National Childhood Cancer Awareness Month. The purpose of the Caucus is to hear what legislators are doing about this health crisis and to introduce us to the cutting edge research and bills to address these issues. Naturally as Mattie Miracle is 8 years old, we have grown with the caucus. Or at least one of us is growing, the other remains stuck in the same mantra. Which may explain the incredibly low turn out of advocates today. After all, if the message is always about the medicine, featuring the same players at the table, it becomes a very monopolistic and uni-focused platform.
Despite our efforts on the Hill to introduce the terminology of psychosocial care, it has yet to even be a word mentioned at the caucus. In fact, I wrote every staffer planning this event this year, and encouraged the inclusion of psychosocial care. My goal was not to commandeer the agenda, since I know the agenda is always about the medicine, but to at least make the discussion of cancer more comprehensive. In fact, whether you are a cancer survivor or a parent of a child who lost the cancer battle, one thing is clear.... the psychosocial issues don't end when the treatment does. If you doubt me, talk to any survivor or bereaved parent. It is truly short sided, disingenuous, and bordering on unethical to leave the discussion of psychosocial issues out of this forum. A forum where advocates come to discuss real world issues. Regardless of how you feel about what I am saying, the lack of attendance spoke volumes.
If the caucus wasn't enough of a test to sit through for three hours, then there was a luncheon thereafter. At the luncheon, I had the opportunity to talk with one of the pediatric oncologists who presented at the caucus. We bumped into each other by happenstance, so I started talking. In our conversation, I mentioned that I lost my only child to cancer. He did say he was sorry to hear this but then quickly retorted that he felt that this is actually easier to cope with than parents who lose a child to cancer and then have other children to raise. Mainly because the siblings are affected from the treatment and death and it can be a real challenge to raise them while also dealing with grief. I do not disagree that siblings are most likely impacted by childhood cancer and how the treatment and death does alter their family's life. What I took issue with, and I told him as much, is that losing an only child has many ramifications. You lose your parent identity, you lose friendships with other parents, and I said a few other things. He quickly responded back by saying, 'once a parent always a parent.' That doesn't end in death. Completely missing my point, about the daily tasks, struggles, and joys of raising a child and growing up with them and into the future. So NO..... NOT ONCE A PARENT ALWAYS A PARENT! But worse he told me that having many friends is overrated. He has a handful of friends and knows these are real friends, others get weeded out over time by all of us, whether through cancer or other life circumstances. Frankly I felt like I was going to explode right in front of him, but I never did. I didn't raise my voice, or argue. I may have at one time, but today, I figured he is so out of touch, I wouldn't know where to go with him. The scary part is he works with patients and I have no doubt spouts his philosophical beliefs on them. As if his way of thinking is tantamount and that he knows better how bereaved parents should feel. REALLY?!!! Honestly who teaches these doctors?????!!
1 comment:
Vicki, I wonder after reading this blog are there ever any interactions at events like this that aren't " self serving." Why do they only talk about the Medicine? This is a rhetorical question that I can't help asking? So much of Childhood Cancer revolves around psychosocial issues that aren't met while children are receiving medicine to try & kill the cancer. With Cancer, most people learn not to use the word cure even when someone survives treatment - they call it remission. If you get so many years past original diagnosis, parents are told usually if it comes back, it would be called a secondary cancer not a relapse. Did any Drs. talk or just politicians who were using survivors to campaign? I think the absolutely worst thing though was your exchange with the Pediatric Oncologist who was measuring loss. He knows absolutely nothing about loss, any kind! One can't change the thoughts of ignorant, insensitive people. He may be a Dr. but I would never take my precious child to him, knowing what he said to you. He knows nothing of psychosocial support that is obvious.
Your entire blog should be read by Pediatric Oncologist's and by the people running this Caucus because who did it really help? Was anything learned?
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