CPN | Awareness Goggles—Not exactly Google Glass

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Awareness Goggles—Not exactly Google Glass



I am sitting on the edge of a lake at sunset and the light is beautiful. I am enjoying a moment of peaceful quiet, reading my book, when I look up and see in the not-so-far distance (but far enough that my 45+-year old naked eyes can’t distinguish much) a canoe with two paddlers. It is a beautiful evening in the summer in Maine and therefore perfectly logical that these two people should be out on the lake. And yet, because it is a weekday and because they are the ONLY canoe I can see (despite my bad eyesight, I can still discern animated objects on the lake), it occurs to me that there is something special that has driven these two people out onto the lake. And it immediately comes to me that they must be discussing something very serious. And that this serious thing just might be that they have a child who is going to die.


HELLO?!!!!! It is a beautiful night in Maine on a lake in the summer. The couple may be discussing their marriage plans. The couple may be discussing their next year in college. The couple may be making plans for graduate school. The couple may be talking about their healthy children. The couple may be planning their divorce. The couple may not even be a couple! Why on earth did my mind go there?


Because —


Once you’ve had your world turned upside down in a single moment with the horrible, unexpected news that your child has a terminal illness, you begin to think that everyone might be on the cusp of or in the process of processing such news. Suddenly, anyone is eligible: if it could happen to you, it could happen to someone else. Anyone.


Also, you become aware of a whole new world of people you hadn’t previously noted: Sad people who are dealing with something really really horrible and yet who don’t advertise their sadness on their sleeves or go wailing down the street. (Hence the possibility that the people in the canoe on a beautiful night might have been processing something really heartbreaking.) I remember going to visit my daughter’s new neurologist shortly after her diagnosis (new because she hadn’t needed one before her diagnosis). The office was inside our city’s major Children’s Hospital and it was peopled with children— some of whom looked 18 or older— who were clearly neurologically compromised and their parents. It occurred to me as I sat in that office with my daughter, who still looked so very ‘perfect,’ that I hadn’t ever seen people like this. I was so ashamed to admit this to myself, and I’m ashamed to write it even now, 15 years later. I had been living a privileged life of physical and cognitive health for me and my family and friends, and neither in my personal life nor in my professional life had I interacted with people with severe neurological impairments. It’s a Before and After thing: Before, you don’t know there was this other world, and then After you do. It’s the same world, of course, but it feels more like a parallel universe.


I am glad to write that I was not so shallow as to not appreciate that I had just received Awareness Goggles and that forever after I would be a more mindful person and that this was at least One Good Thing.


Three days later, when out for dinner with my husband and wearing my new Awareness Goggles, I looked around at all the patrons in the restaurant and asked, “How many of these people are invisibly wrestling with really sad stories that involve illness and grief or medically complicated children who innocently ask so much of them? How many of these people are like me—looking normal and well, and yet feeling deeply sad and very troubled and truly fearful? How many people here feel like they might crumble at their seat if someone looked at them, saw what was really going on, and blew on them?”


It is the case that the Awareness Goggles, once arrived, have never left my head. I forget they’re there until they fall unexpectedly onto my eyes and I see things as they might be for the people I am looking at, such as the people in the canoe. It’s my own special version of Google Glass or Virtual Reality – a version I suspect any parent who has ever cared for a child with complex needs or a life-limiting illness knows only too well.