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Go Slowly

“Truth, like love and sleep, resents approaches that are too intense.” W. H. Auden.

I ran across this quotation in the seminal work on Traumatic Stress by Bessel van der Kolk. I have been blessed with an assignment/grant by the Louisville Institute to research this topic and its effects on people, pastors, children, etc.

Coping with the last three years has included our intellectual efforts to make meaning out of the ups and downs, the outcomes, good and bad, but also to watch how our conclusions often contradict the meanings of others or at least fall short of including all possibilities. Sometimes, humans don’t even realize how the words of comfort we offer each other if applied in another situation are painful and exclusionary. This phenomenon almost knocked me off my feet the morning we left for Ohio. We were saying goodbye to our night nurse who could tell I was quite nervous. She has been a pillar of strength and insight since we first brought Margaret home. Her own life has enhanced her natural wisdom and calm as she is now 9 years into morning the loss of her two daughters (then 7 and 17) in a car accident).

As we were parting April 2, she said “don’t worry, you can tell by Margaret’s spirit that she is meant to be here.” It was the most generous thing she could say and unusually theodicy-like for this survivor of grief but still I welled up with tears from the cruelty of such a belief as I looked at the photo of her daughters that had been cast onto a gold heart necklace she never took off. She wasn’t worrying about what that statement meant in all cases, especially not if she’d said it to her former self, she was just offering me comfort at that particular time.

Theodicy (the simplistic definition of this is why bad things happen to good people) is hard to hear when it comes out of the mouth of someone who uses it to justify their own life experience or lack thereof. But I’ve seen its other service when it comes from someone who means it only for the good of others at the exclusion of themselves. Sometimes what we say is as much a recognition that we can’t know the whole truth as it is a desperate attempt to grasp Truth intensely. Almost everything I hear myself saying in times of tragedy or even just in sermons, (I am as skeptical of my own words as I am of others’), I find falls short at some point, excludes some aspect of this good earth and wonderous universe. And so whether I accept or resent each attempt at truth-telling has more to do with the humility or desperate intensity in which it is delivered. The meaning of what we say can’t be found in the dictionary but only in our bodies and the cells that store memory. In the resonances those words make in our bones, our emotions and our imaginations. Communicating is not conveying literal meaning, it is offering an interpersonal meaning — one that has been lived and may be shared with the consent of those listening.

So I am struck by this idea that Truth resents the intense approach. Certainly in cases of trauma, we must unearth it slowly and particularly, warding off our tendency to globalize our experiences.

For our part during our re-entry ( we returned to Georgia this weekend) we are working most diligently on love and sleep. As someone how has been surviving on 2-4 hours of sleep a night for the last 3 weeks, I can say that yes, sleep is also a state that must be wooed. For weeks, I’ve survived on adrenaline. I could feel it coursing through my veins so that even if I wanted to sleep I could not, feeling as if a live spark was traveling throughout my nervous system. Now that the threat of Margaret stopping breathing is not on me alone, I can lower my fight or flight reaction, but body chemistry has its own rationale and I have had to watch it let down its guard over several days of being home. It’s so good to be with David, the nurses, friends and a church who can affirm that rest is in fact the most important task. We had an inspiring start as we returned home to a beautiful garden prepared by David’s mom the week she stayed here with James and a well-rested, joyful James from his time with her in Decatur and my parents and grandmother in Nashville. As tired as I was, I actually had a health boost due to the incredibly tasty vegan meals prepared by the Tiekes in Cincinnati. Any mother/housewife would trade a few hours (but not all) for being given tasty meals and a clean house for a few weeks that she didn’t have to do herself. Thank you, thank you to our incredible circle of support.

As for love, we are also taking our care-giving gently with Margaret as we try and wean her off the tube. She is her resilient and at times exuberant self. We tried going back to school but found she was too tired and also intimidated by the kids’ reactions to the feeding tube in her nose and their inability to hear her say “stop. go away.” when they followed too closely or came up from behind to touch her face. So for now, we are working on feeding by mouth with great success. She took all her calories by mouth (a record recovery rate for her) and is mostly struggling with water and thin liquids. She still gags more often than not, but she has said she wants to get the tube out. It seems the day at school and the reactions of others offered something in terms of motivation.

She complains about pain in her ribs still but has also refused the Tylenol and said she can handle it. This kid is very astute as to how she feels but also to the lengths she must go to be fully recovered.

It has been interesting to see her mind mature especially as it relates to the passage of time and the acquiring of skills. She has set a goal of getting her NG tube out next week so she can return to school and of getting her trach out by James’s birthday (July 7) because it is a day she can look forward to. The trach will likely come out later than that, perhaps in August or September. Cincinnati called back yesterday and scheduled a follow up scope for Wednesday, June 5th! It sounds like we will have 2 or more scopes before a sleep study and capping trial then decannulation (taking out trach). Margaret also talks about turning 5 like her brother so she can go to kindergarten at Oakhurst and so she too can read Harry Potter at night. James is excited by this because he says when he is 7 he will be able to read the series to her, the way I do for him.

It is nice to hear them planning far into the future and for us to think about living more than a few months ahead at a time. And yet, as the reappearance of that darn NG tube reminds us, reaching our long-term goals is a process, the intensity of which must be meted with truth, love and sleep!

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