Waxing and Waning!

I first heard the  phrase “Waxing and Waning” just after Christmas of 2014.  We were at one of Derya’s Doctor’s. I remember that appointment very precisely.  Derya and I were sitting on the couch in the back of his office, my arm was around Derya as she rested her head on my shoulder.  My son and Samime were sitting on the chairs flanking me while we all faced the doctor sitting at his desk.  

He used this phrase as a precise description of Derya’s actions and symptoms.  Her symptoms, he described, were “waxing and waning” I felt, at the time as if I was in a fog.  The previous month and a half had been one nightmare followed by horror movie mixed with a tonic of fear.  My college level daughter, the young woman who had achieved the second highest community college academic award in the state of New Jersey, in her fourth year of college (second year at Amherst College) and working as a Pearson Ambassador was unable to even speak coherently at the time of this meeting.  

My Naivety of Waxing and Waning

I couldn’t think of a better description of her symptoms.  Looking back then I recognize how naive I was to think that I had an understanding of what this phrase meant.  Terribly I would find out the horror of my wrongness over the coming weeks, months and now years. Truth to tell, it has made me a better person.  Derya has. She has helped me to control my anger and focus my energies on the here and now. Derya has become the teacher and I have become her student.  She has taught me how to not only control my anger but direct it in the proper manner with the proper vehemence. Most of all, she has deepened my faith in God and his justness.  

Those of you who have suffered through the phrase “waxing and waning” can appreciate the experience for what it is.  It’s not a test of faith, it’s a test of Grace. Holding it together long enough as the anger pulses through you, recognizing that the person you are caring for has no idea of what they are doing or why they are doing it.  They have such a lost feeling inside.

I once picked up my wifes phone when one of her friends were calling and Samime was unable to pick up.  I had a brief conversation but it had an enormous impact on me. She had already experienced the same experience of “waxing and waning” from her own daughter.  She said to me to not bother trying to figure out “why” they are doing what they are doing. You can never hope to understand the confusion and disorientation of their brain.

THIS IS NOT PSYCHOSIS

She was right.

This is NOT psychosis.  This is the body causing the brain to malfunction.  

To put in real terms.  If you were typing on your computer that had a virus that made it so that every keystroke changed randomly what letter and the language that was being put on the screen, while keys on the board was sticking as your as you clicked.

As Derya is getting better, the keys stick less, the letters popping up on the screen are in a language she understands as the virus attacking her system is beaten back the words on the screen make more and more sense until she can have conversations with us.  

This is where we are at.  Hoping that the next treatment will give us longer and longer conversations, less behaviors and more improvement.  

Yet, “waxing and waning” isn’t a STEADY improvement.  It is three steps forward four steps back followed by five steps forward.  All the while, Samime, family and friends and I stand in wonderment at the level of injury and loss placed on Derya as she struggles to get better.

About US!

James Baldini blogs about his daughter’s care and the tragedy that has surrounded the entire family of Derya Demirtas.  Derya has had Autoimmune Encephalitis for nearly four years now.  The young advancing, brave and stalwart young woman Derya Demirtas, has suffered much throughout that time.  As has her family and friends.  In someway we hope to see a change within the medical community so that it may better adapt to this disease and prevent future generations of victims.

You can read more from James Baldini @  www.JamesBaldini.com

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