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Health & Fitness

'Wounded' Has a Sound

Chris Medina's album is as beautiful as expected, but Juliana continues to live in the darkness of her mind.

Whenever I have several days between updates, coming back to fill you in on Juliana’s most recent days is a challenge. If there has been nothing significant like a surgery or a seizure then I am here deciding if I should describe the positives or the negatives. I don’t give it a lot of thought but I can tell you that my overall mood ultimately defines what you read. As a caretaker my mood and outlook changes from day to day, incident to incident. Juliana’s state however, (other than that month or so of her temporarily improved emotions) she stays very stuck in depression. Knowing that makes our job a little tougher because if we aren’t steadfast in our pursuit of her life, then it just doesn’t happen. Juliana is still very angry, very depressed and very defeated. I so hoped that the upbeat girl we experienced during her month of inpatient therapy was here to stay but she has been gone for a while with very few signs of her returning. It feels like a personal failure, too. 

Nikki took a few days off last week and that meant I took a few days off of work to go to therapy with Juli and talk with her therapists about what happens as her insurance benefits expire. During my observation I got a chance to be simultaneously encouraged and defeated. It was so similar to everything else in this entire journey I am starting to think that I have to find a way to reprogram my expectations. During Juliana’s speech exercises she was asked to repeat phrases with the proper breath and articulation and I can honestly say that I have never heard her talk more clearly than during those five minutes. That was the encouragement. I even recorded it and sent it to a few people to confirm that I wasn’t imagining it: she was talking incredibly clear. Then in physical therapy her walking was equally impressive. We had made a deal earlier that she would not fight the usage of the walker and instead use it positively so that she can get past it.  She used it so effectively that at one point, I wasn’t helping her balance from behind and the therapist wasn’t controlling the walker from the front.  SHE was doing it all herself. This time I was more than encouraged, I was elated. I was so eager to see her progress but I also had the nagging feeling that what I witnessed was not abnormal for her, which also meant that it was not being translated to the home environment. The therapist stating that concern outright confirmed my suspicions and the car ride home continued to solidify my concerns.    

We started the drive by listening to Chris’s new album for the thousandth time and let me tell you it is easy to get lost in the very personal, beautiful music. I set the creeping negativity aside and let the album talk to me like the punctuation to a positive day. As the songs unfold I hear the story of his love, loss and his pain and my mind is elsewhere, contemplating what Chris must have felt writing and recording such intimate art. You can hear the work he put into the last months--even the last years--you just know that in everything he has done he has been living for his love for Juliana.  Each time I hear it my heart is heavy with both pain and pride and am struck by the fact that ‘wounded’ has a sound. I was lost in visualizing the feelings he was expressing when I realized that Juliana was trying to talk to me. I reluctantly turned off the music and began the difficult task of trying to understand her while I drove. Under the best of circumstances, understanding her is a challenge but in the car alone with her has its own hurdles but I was still pretty upbeat by the speech session that I smugly thought I could figure her out even though I couldn’t see her hands or her mouth. But all of her volume and articulation must have been left in the therapist’s office because we were completely unable to communicate and we tried for the entire remaining drive.  I tried to write it off as her being tired and diffused the anger as best I could, still hopeful that some of the tricks and queues I saw work today would work at home but it is now 4 days later and I can tell you, disappointment is getting a firmer grip. 

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I wouldn’t call myself an expert at brain injury recovery but I am also no longer a rookie and in spite of my mid-level expertise, I still cannot understand or accept just how fickle this recovery can be. I know that Juliana’s depression is a serious inhibitor to her recovery but I also know that she has the capability to do more and do it better but she lacks the capacity to sustain it and more importantly, the will to want to. 

Last night at 1:35 a.m. I woke to a loud, bloodcurdling cry coming through the monitor next to Juliana’s bed. As I raced down the stairs I expected to find her hurdled over the railings, certain she must have somehow fallen out of bed.  Instead I found her safe and snug but staring up at me wide awake. I looked at her wild-eyed and asked her the obvious:
“What is wrong?!”

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“Nothing now,” she said calmly as I continued to stare at her, “I took it off.”

The time of day and the conversation had me momentarily confused until out of the corner of my eye I saw what looked like a limb lying across the room from her bed. It was the cast from her arm: she pulled it right off. 

I checked her for scratches or bruises thinking she must have had to scrape something by tugging that plaster cast off of her arm but there was no injury. I talked to her for a moment then went back to bed but I was filled with the restlessness of the situation. She has such power and force and I just know if she applied it to her recovery she would be going farther and faster. Put it plainly, she must use her powers for good, not evil.  Day after day I wonder how many years of her life this car accident will keep from her and how much of her life will be left to use as she planned and I wonder how long I can keep her from her worst impulses.  I keep hoping that the time and effort we put in will yank her out the other side but something inside her keeps yanking her backward.  So I guess we have the answer on my overall mood and it was probably never really a mystery to me at all.  And even though Juliana is deeply entrenched in her thoughts of defeat, I am not there yet but I can tell you that it is an effort every day not to make good enough the way this story ends. I guess that struggle is the sound of my wounds.

READ:  Where it all began, in For Juliana: Almost to the Almost, One Penny at a Time, by Janet Spencer Barnes.

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