Reflections

I bet you all can guess what I wished for on the occasion of my 55th birthday yesterday. Absent that miracle coming true, a couple thoughts.

One, I just find it profoundly comforting to know how many people there are out there who care so much about Meagan and our family, and show it in so many ways. Meagan often speaks about the imagery she conjures up about her "coat of arms", which is all of her friends and loved ones wrapping her up in their arms as she heads for one treatment or another. After the stroke that imagery has been harder for her to grab onto, for reasons I can't comprehend. But the other night, when she was in the midst of one of the emotional storms, she talked about it, and needing to find it again, to help with the journey ahead. I envision it in a slightly different way. I think of it as a safety net, but not in the traditional way - I think about the images I've seen trying to explain Einstein's theory of gravity and space time - where one imagines a stretched piece of square rubber (infinitely wide and long) and the planets and stars are like bowling balls dropped onto it. How far each one depresses the rubber depends on its mass. There is more, but that's the only part of the imagery I care about. [The depression created by bowling ball mass is gravity and anything going past that object, like a photon, would have its path altered by it]. I feel like our family has this taught rubber sheet underneath us, the rubber sheet being the love and support of all of our friends and family and depending on the event (the mass) it holds us in place, involving more of the love and support the larger the event. I was reminding Meagan about that when we were talking about how many people came to the hospital for both of her emergency experiences. We could not do this journey alone, and I feel that presence underneath us even if we are by ourselves in some waiting room.

The other thing is about comfort. Meagan doesn't want pity or sadness on this journey. At this point I don't even think she wants people to say they believe she will make it, that miracles happen - because frankly, that creates a false hope. She'll take it if it happens, but given what we know about this disease and how it's presented in her case, she knows the likely outcome. What she would rather have is that she wants to know that her coat of arms is there, to hold her hand (metaphorically and physically) and say, "we are here with you and for you". The clinical and medical part of the journey will be what it will be. By necessity it will be more left brain than right. But whatever decisions are made then need to be implemented - and whether that is tough treatment or non-treatment - she wants to go through it comforted by all, and with appreciation for what she has. As she said, it just doesn't seem as scary or difficult when you have someone holding your hand and saying, "I'm with you every step of the way". That connection is what matters, and makes the disease journey and outcome less relevant.

Lastly, perspective matters. We were on a walk yesterday, about an hour loop originating from our home. The last leg is walking south down the hill from View Ridge and being able to see downtown Seattle, the Cascade and Olympic mountain ranges and Mt. Rainer. It's a beautiful vista, and the walk was very nice with the sun peeking out and all the gardens in full bloom. Her comments were that she felt so much better being out and seeing all this - that it somehow puts everything into a little different perspective. It's one thing to be at her chair and doing email or sitting in our garden and reading - those activities and that perspective are much more introspective and draw her in to thinking about her disease and all the people she needs to see, and the schedules she needs to coordinate, and the things she needs to do, because every day is precious. And it somehow makes the disease the center point. Yet, out on a walk like yesterday, with a view of our little corner of the world, there is a recognition that the world and life is greater - and beautiful and complex and comprised of eons of time. So it puts things into a little different context, moves the focal point a bit, and that is somehow more comforting and helpful.

Neither of us really know how to go about this. We are making it up as we go along. Meagan does know when things feel right and comforting to her, even in the face of the dark and scary places. Losing some potential (and more promising) treatment options has put the dark and scary places in much closer proximity. But neither us us want that to overshadow what we have or to block our appreciation for what's around us. And we could not do that without drawing on the support of the coat of arms.