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>I Must Have a Little Quiet, Please

June 4, 2011

>Living with the Effects of Pediatric PTSD

This series began with an Introduction to Pediatric Medical Trauma here.

We are blessed. Joy spent 98% of her four weeks in a body cast at home. If Post Traumatic Stress Disorder (PTSD) was a rational thing, every toy, every book, every room, every person (and pet) in our home should remind Joy of surgery, pain, and claustrophobic confinement. But here at home, she is fine.

Her physical recovery is going well, too. Her surgery was March 8, followed by six days in the hospital. Her cast came off April 7, almost two months ago. Aside from the scars (which she barely seems to notice) and the hardware in her thighs (which she can’t tell us she notices, but we can easily feel), she is approaching her pre-surgery self. She is still rebuilding her endurance so we have not yet asked her to take more than token walking steps. We will be there soon.

But like I said, PTSD is not a rational thing.

*****

I do not have any personal  experience with PTSD. But in that amazing way God has of shedding light just when we need it, I have spent the past three years living with a woman who did. Her name was Mary Butler Renville. Writing Mary’s biography, I did not have to infer she had PTSD in the wake of being held captive for six weeks with her husband and daughter during the U.S. Dakota War of 1862.

150 years ago, it did not have a name. But the symptoms we have since labeled “Post Traumatic Stress Disorder” are evident in the letters Mary wrote to a pastor during her recovery. She was well-educated for her day and was a school teacher. Letters written several years later show punctuation, grammar, and conscious composition. But letters Mary wrote in the months following the war are erratic, disorganized, and spiked with statements like: “Today I am a nervous headache;” “I cannot sleep for thinking of Mary [an adopted daughter lost in the war];” “Please excuse my nervous writing… the least little noise makes me jump I dont get over being a captive yet or rather the effects of it.” 

Perhaps most challenging, Mary admitted, was her realization, “…I must have a little quiet from Indian callers until my nerves are stronger.” That was especially difficult because her husband, their daughters, and his family were all Dakota, and his life’s calling was to teach and pastor among the very “Indians” she temporarily need “quiet” from. None of these people were in the minority of Dakota people who took the nation to war. None of them were among those who held Mary and her family captive. In fact, during the war, the Renvilles were sheltered among Dakota friends who actively opposed the war and who worked from the inside to bring it to an end. Yet afterward Mary found she had an irrational fear of “Indians” in general.

*****

Joy is slowly recovering from the trauma of the surgery and her captivity in a spica cast. She is not afraid to fall asleep any more. She is not waking up crying from nightmares. She is just starting to wake up from her naps again happy instead of in tears. She likes riding in the car again. I should add: it is impossible to avoid most of these things. It is not like sleep or riding restrained in a car seat are optional. So you might say we “pushed through” these irrational fears and have seen them gradually abate.

But Joy’s toleration for therapy outside our home is a different story. We have been doing the right thing (physically speaking) and have pushed through her protests and tears for two months. But her anxiety about most therapy is not getting better, but worse.

There is a pattern to her fears that even makes sense. Joy happily participates in her most challenging session, physical therapy, without protest. She could not do PT while she was in her body cast and seems to have made no mental associations between the surgery/cast experience and her long-time physical therapist.

However, Joy was unable to acclimate to a new PT or OT after she came out of the cast, and her reactions to her long-time OT (who she saw for OT while she was in the cast) are getting worse, not better. So at the very time when, from a physical point of view, we should be increasing the frequency of therapies to maximize Joy’s recovery, we’ve gone from four sessions a week to one because her tears are saying, “…I must have a little quiet from Indian callers until my nerves are stronger.”

Like Mary Butler Renville, Joy is telling us: Rational logic is not the operative force right now. You only observed my experience from the outside. I lived it from the inside. Even though I was there I can’t explain why I feel this way. It isn’t rational to fear people I love. It isn’t rational to fear activities I used to enjoy. I’m just telling you that right now, these things are true. Right now, I need break until I feel better.

*****

So for the present, we’re going to let Joy have “quiet” from the OT she irrationally fears. It isn’t like we don’t do OT naturally all day long at home.

As her mom, it would feel better if I didn’t have to make this decision contrary to the best advice of  professionals. But the truth is: a surgeon will not consider surgery optional and a therapist will not consider therapy optional. God gave Joy a historian as a mother and I will not tell you there is no wisdom in history:

Mary Butler Renville recovered, adopted twelve more Dakota children, and spent the rest of her life on an Indian reservation.

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