Tonight's picture was taken in March of 2003. Mattie was 11 months old and I can imagine you need some context to understand Peter's facial expression here. First of all, this was Mattie's first trip to visit my parents in Los Angeles. For the first couple of days of the visit, Mattie got up at 4am, thinking the day should be starting. We tried everything to get him to go back to sleep and adjust to LA time, but forget it. So for three days, we were up at 4am! Mattie was raring to go and Peter and I were like the walking wounded. Peter was trying to mimic Mattie's hand gestures in this photo and then added this crocked expression to signify that we were up before even the birds!
Quote of the day: Being deeply loved by someone gives you strength, while loving someone deeply gives you courage. ~ Lao Tzu
There are many things I remember from the time Mattie was diagnosed with cancer. But one that remains in the forefront of my mind has to do with becoming disengaged. When you first get diagnosed, people really have every good intention to support you. Until the process gets underway and the visual reality of what treatment can do to a person is just a bit too much for the average soul. Who can blame anyone? After all seeing someone so sick, especially a child, could make any of us run the other way. It isn't pleasant to observe, it makes no sense, and worse it causes us to question..... this could happen to me? So instead of dealing with all of this, it is safer to disengage and remove one's self from the scene of the cancer crime. There are many forms of disengagement though that happen when diagnosed with cancer.
Disengagement can also happen with the patient and the family caregivers. In Mattie's case, as he received more chemo, had extensive surgeries and got sicker over time, he wanted very little to do with anyone. Other than Peter and me. He had no problem shutting people out, ignoring them, or covering his ears. I must admit as Mattie was disengaging, I too wanted to block people out. I really did not want to hear their stories of normality and I found outside visitors who came to drop things off very difficult to manage. Many of them had no common sense, and would sit in Mattie's room, trying to talk to me for hours. Meanwhile, I was simply trying to hold it together and keep Mattie calm. When I look back at it now, I don't know how I did not explode at people because hearing about things at school, another child's troubles or accomplishments was just too much. TOO MUCH!!! When you get to this point of disengagement you truly don't care about the person in front of you. It isn't intentional, it is more about self preservation and one's sanity. Therefore, though disengagement may seem harsh (or though I doubt most people knew I was disengaging from them), it is a necessary coping mechanism to survive a life or death situation.
Since Mattie died, I have helped friends who have been gravely ill. Let's just put it this way, I am on the second hand of digit counting of friends who have died. However, when I found out this week that my friend was diagnosed with cancer, I feel like I have regressed right back to when Mattie had cancer. Meaning my lens sees two different types of people in the world. Those touched by cancer and those who live in Disneyworld (which is what I call people unaffected by cancer). It is hard not to look at the world as them versus us! I find this week that I have LITTLE tolerance for people all around me complaining about everyday problems or worse problems which I assess were brought about by bad personal decisions and choices. There are big differences between problems you brought on yourself and those that just happened to you by accident or disease.
Of course being a mental health professional by training, having this judgmental attitude about qualifying stressors or problems is not ethically right! If I were working with clients now, I truly would need to step back. I think part of me knew this when Mattie died, which is why I never returned to teaching undergraduate and graduate students. My mind and heart were no longer there. Instead, I chose to remain living in the cancer world, by doing Mattie Miracle work. It is a world that I understand better, I get the fears, stresses, desperation and the life and death decisions that are constantly being made.
I would say there are moments when I may appear to the average person engaged with the "normal" world, but I also know it doesn't take much to pull me out of my comfort zone. When I am out of my comfort zone, I am quite capable of giving a friend or two a lecture about the reality of what a real problem is! So when I sense that I want to take my hostility and aggression out on healthy people, I disengage! With this introspection, and I left wondering if this is also why Mattie disengaged from the world?
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