(In other venues) I am working on sharing the extremes we get to, without scaring people or trivializing what is being faced at the moment. There is so much strength to tap from these instances when darkness and displacement surround us — when we were truly hanging by a thread. I find it sort of reassuring and empowering that we can endure/embrace such extremes, but for parents with children who were recently diagnosed, it would seem to be horrifying and overwhelming. I feel a need to shield folks and buffer the blows, realizing that people do not give equal weight to every part of information about an experience we describe. They filter through their own lens, applying assumptions, and what is familiar or tolerable. Yet, when I emphasize only the lighter and bright sides, in an attempt to shore up hope, I realize that neglecting mention of the struggles and recurring processes of slight gains and back slips, detracts from establishing ripe conditions and proportional expectations to receive the trumpeted triumphs. How do we de-mystify fears without unintentionally planting new fears?
Time lends itself to changing thresholds, but in the face of demands that something be done immediately, assuming anything is better than nothing* –despite decades of empirical evidence showing otherwise– how do we create a space for yielding, and even considering voices of experience of our friends who are no longer able to share first-person accounts? As I write this, I am processing how it generalizes far beyond what inspired this note.

And so, also, I remind myself that meaning is in the response, and we do not control that response. Perhaps it is sufficient enough to point, yet again, to the importance of what is not said even when we say quite a bit.

In the spirit of compassion and continued discovery, I refrain from inserting scholastic asides and references above. They would serve me, while confusing others.

Pleased to see the word “comprehensive” today? Definitely.

* “Nothing,” is what is perceived. Doing nothing is really about doing everything that is appropriate, at the optimal time, factoring in emergent contingencies. Complexities and unpredictable occurrences vary with time.

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