Saturday, May 21, 2011

Just When I thought It Was Safe....

Right before I made the matcha tea this morning - I heard a slightly different tone from Meagan. It appears she has been affected by someone's sad reaction to her "news" or the way she is and her "nonplussed" attitude may have gone away a bit. The brain damage that gave her an "all right brain" approach and no interest in discussing or considering disease progression may be on the mend.

"I'm not going to be around very long, am I?". How the hell do you answer that question? I did my cabana boy best - told her she is a person and not a statistic, that no matter what happens we are going to live each day in the moment and live it fully, that yes, she has a serious disease, but we all die sometime and the quality of your life is more important than the quantity, and that even if we knew she was going to die in a couple months we wouldn't change anything about our lives (it's not like we want to leave friends and family and jet off around the world), and even if Dr. Kaplan at some point says there is nothing more we can do, we'd have time to take care of the things needing taken care of.

She got teary of course. But we talked about it some more - not in great depth and a with a balance of hope and optimism, but tempered with the general knowledge of the seriousness of her disease - she doesn't want to get into the nitty gritty details. So it was a difficult situation (again) but at the end she seemed ok with where she stood and how she felt, and hasn't raised it again today or shown any evidence of thinking about it or it being a traumatic discussion. So maybe the good brain damage is still helping. But it's a fine line - she wants and deserves to have some hope. Yet there is the backdrop of being in the throes of a terrible battle - one now being waged on two fronts - the brain and the body (because the treatments for one don't affect the other) that may be larger than can be overcome.

I always feel terrible after these discussions, not just because of contemplating the future and possible negative scenarios. At some level I want to share with her everything I know about her disease (treatments, outcomes, probabilities, challenges) so that we are on the same intellectual plane, which will put us on equal footing from an emotional perspective. And make us partners once again. Yet I also feel a great protective instinct and desire to keep her from the fear which puts her head in a negative space so that she can't enjoy the life she has (I do this partly from knowing her and what she wants and how she has explicitly said she doesn't want to focus there). By protecting her and softening the truth, it does make it better for her, I'm convinced. But then I've missed the opportunity. So I feel terrible because my internal conundrum is unresolved and I have to live as the one who sees it both ways.

The last thing I'll say for this post is that for those of you who read this, and interact with Meagan - do your best to be with Meagan fully and enjoy each and every moment and opportunity. Make it about life, and being positive and discussing and enjoying the experiences of the now. She's reading the paper, slowly. And is interested in the events of the day. And is always interested in your life and your relationship. But don't bring up the seriousness of the disease or issues around disease progression or outcomes. Because it's not about us, it's about her.

I can't remember which modern day philosopher said it (but I will attempt to paraphrase it while I butcher it in the process, but it was something I used with her this morning) but the gist of it is that humans are unique among creatures in their ability to essentially look down on themselves and see the span of time from the beginning of their life to the end. And we are unique in our ability to contemplate our own death. And it is that contemplation of death which sets us apart, but also gives us the knowledge and ability to appreciate and live fully the life we have now. We will all die someday - it's a question of "when", not a matter of "if". The measure of our life and the uniqueness we have is that ability to live each day fully knowing of our eventual demise. It's a bit harder for sure if you think that death may be closer than you really want. But it really shouldn't alter the way you live. Meagan is choosing, to the best of her ability, to live her life as fully as she can. I support that, and hope everyone else who comes in contact with her will as well.

1 comment:

  1. "Yet I also feel a great protective instinct and desire to keep her from the fear which puts her head in a negative space so that she can't enjoy the life she has..." Can I just say you are doing the right thing? It's hard, I am sure but totally the right thing.