courage, part II

Earlier in the summer I wrote about courage and whether Evan and I have been courageous in coping with Iris's diagnosis. I was struggling to figure out what the appropriate actions were for us to take in the face of the pretty gloomy prognosis. I considered quitting my job and quitting my dissertation to focus on being a mom and on raising money for research on the ACTA2 mutation and pediatric strokes. It's easy to find purpose in life when faced with what seems like a constant life or death situation. Your purpose becomes life. It's that simple and that complicated.

As the year has worn on I've continued to struggle with what my next steps should be. I've come to the conclusion not to make any drastic changes. I was a small signature away from quitting my dissertation altogether and somehow I've made the decision to keep going on it, same with my job. If I have to come up with a logical justification for it, I guess it would be: I don't want Iris's genetic mutation to become the most important thing in our lives. It is always going to play a leading role, but I don't want it to be the only thing that we do and the only thing we are about.

Back when we first got her diagnosis - not even a year ago - we decided that we wanted to focus on making her life (and our lives) meaningful and always to emphasize the idea that a long life does not equate to a meaningful life.

The most meaningful thing I think I can do for myself and for my family is to cultivate and spread opportunities for joy. This state of being has almost nothing to do with what we do or do not accomplish; instead, it has everything to do with our perspective and what we choose to surround ourselves with.

With that in mind, I want our lives to be as ordinary as possible and I want for us to find joy in the ordinary.

courage

I've mentioned in passing that Evan and I have amassed a set of books to read as a way to process where our lives are and where they are going. Maybe I'm the one who has mostly amassed the reading list. Included on this list is Being Mortal: Medicine and What Matters in the End by Atul Gawande. One of the final chapters is titled "Courage."

He begins the chapter by telling of Plato's dialogue Laches, which deals with the subject of courage. What is courage? I can't speak for Gawande's interpretation of the text, but he concludes with observations that particularly resonate with our experience: 

"Courage is strength in the face of knowledge of what is to be feared or hoped. Wisdom is prudent strength.

"At least two kinds of courage are required in aging and sickness. The first is the courage to confront the reality of mortality - the courage to seek out the truth of what is to be feared and what is to be hoped....But even more daunting is the second kind of courage--the courage to act on the truth we find. The problem is that the wise course is so frequently unclear. For a long while, I thought that this was simply because of uncertainty. When it is hard to know what will happen it is hard to know what to do. But the challenge, I've come to see, is more fundamental than that. One has to decide whether one's fears or one's hopes are what should matter most." (p. 232). 

To take this further, one has to decide how to live given the likelihood of a variety of outcomes. The problem with dealing with a rare diagnosis is that medical professionals don't have much to tell us about what to expect. There aren't enough cases to draw statistical conclusions and so we are all running on case studies and personal experiences of other families. So in other words, how do we figure out how likely it is that our fears will come to pass? We have to go on gut feeling and the stories of the roughly 20 other families with the ACTA2 r179 diagnosis. 

I think that we've embodied the first type of courage in facing Iris's diagnosis. We have sought the truth of what is likely to happen and haven't shied from it. The second type of courage... the courage to act is more difficult. What do we do with the knowledge we've gained? This is where I'm kind of stuck.