FREEDOM DAY 2018

As many of you might realize, today is the day two years ago that Derya was released from that place we shall not mention.  It kicked a memory of something that happened not too long ago. I was watching Gilmore Girls the other day with Derya. I know, it’s not something you might expect a dad to be doing on the average weekday. There’s a particular episode where the grandfather, Edward Herrmann (One of my super favorites in the show besides all the documentaries he narrated) ends up in the hospital because he had an “episode” and collapsed.  Lorelai, in typical Lorelai fashion, handles the stress in a frantic way with her wit and witticisms, quipping left and right about Luke’s driving ability – all in her way of dealing with stress. As Derya once said, you can explain a lot about life through Gilmore Girls.

At the time of this episode, Derya was curled up in her blanket her attention on the screen as we watched.  She had just had her lunch and was just in chill mode. As I was saying, Lorelai comes into the Hospital with Luke (who is my personal favorite) as she is clearly worried about her father.  Luke is, as usual, acting as the stabilizer to Lorelai’s “seeking the truth” single mom.

It was then that we find Emily, Edward Herrmann’s wife, Lorelai’s mother, actress Kelly Bishop, as she is arguing with a nurse over forms that needed to be filled out. and I hear one of the best two words to describe someone, “paper peddler” uttered by Emily. What ensued is a series of scenes in which the Hospital nurse needed Emily to fill out paperwork for her Husband’s admission and Emily along now with Lorelai and Rory desperately wanting to find out the condition of her husband, father, grandpa, Edward Herrmann, Mr. Richard Gilmore the Patriarch of the family.

The show goes onto a great episode ending where everyone deals with their fear of losing Edward Herrmann, A.K.A. Husband, Dad, Grandpa, Richard Gilmore.  Edward Herrmann is going to be alright with some medicine and a diet adjustment. Rory who now has a greater appreciation of finances and her family, Lorelai’s penchant to witticisms is back on target after a slight muting at seeing her father in the hospital bed and Emily, her emotional moment passed is back to being the matriarch that we all know has that indomitable spirit and both sets of mother/daughter have made peace after a couple issue arc of having a small feud.  

I mention this because as I was sitting there watching this episode with Derya it occurred to me that wouldn’t it be nice for everyone to not have to worry about going to a hospital.  Samime mentioned to me recently an article in the Washington Post that cited medical errors as the third largest killer in America today – only beat out by Heart Disease and Cancer. You can see the article here for more information.  I mention this because today, the place that will not be named – a hospital in New York City released Derya today two years ago – after holding her for 75 days against her will and having changed her diagnosis from Autoimmune Encephalitis to one of psychiatric.  

As I watched I realized that Richard Gilmore’s doctor was a friend of the family, no threat there.  And yes, it is a television show, therefore the plot is planned out. But I wondered, what if Richard Gilmore had the misfortune of going to this place which shall not be named.  Sure, he didn’t have an established diagnosis of 18 months. Yep, he was given a battery of tests from the “big testing room” as Lorelai called it. In this place that kept Derya, they don’t have the need to give a battery of tests, they might have just decided that he was psychiatric, after all, was he really feeling uncomfortable or was he faking the fall to the floor (it wasn’t seen on the screen, it was only inferred).  Perhaps Emily and Rory only wanted that to be what they saw, that he was having trouble with breathing. After all, we did hear Emily tell Luke that Richard had complained about his tie and that Emily had told him he needed to leave it on and not loosen it “to look good” and this whole thing was a passive-aggressive attempt of Richard’s to avoid the party and the haranguing of Emily. Or perhaps Emily is really the one who has psychiatric issues.  The way she was talking to the nurse might be construed as someone who needed a restraint. She was certainly acting aggressively.

Okay, I know I’m over contextualizing this whole episode.  No hospital would ignore the established diagnosis. Why, would a hospital NOT see a clear medical history from licensed medical professionals as valid? Why would a hospital draw a completely different set of conclusions after a few minutes with a patient when all the other doctors in the patient’s life had over a year and a half of data?   Why would they doubt it and change it to something completely different without even bothering to test it? Or for that matter, why would they willingly give medicines to a patient knowing there was a history of adverse reactions?

Perhaps, if Emily had filled out the insurance papers on time as the paper peddler wanted they might have noticed the great medical plan Richard had and decided they needed to ensure keeping him for weeks and months on end to run up the bill with the insurance company.  “Hey, he’s acting a little weird. Don’t you think?” I can just imagine it. “Maybe we should get a psych consult on him.” I’m thinking he didn’t have great insurance – probably a Cobra plan, that wouldn’t last that long. “Nah, he’s not going to psych, he really just has Angina, we’ll only get a couple of days out of him – I mean we’re only going to keep him for a few days- for observation.”       

The whole second half of this episode brought me back to that moment in the hospital when the doctor told me that Derya was going to be transferred to psych.  We asked them not to. They ignored us. They wouldn’t listen to us, they wouldn’t test her and they didn’t care about the history of recovery, her diagnosis or how much they were hurting her with the medicine they were pumping her with.  They kept on pushing and pushing their diagnosis despite the evidence we laid out in front of them. It would be several court dates, calls from Derya’s doctors, hiring a lawyer, and daily begging them to release our daughter. We reached out to local and state officials, politicians and the public.   And in the end, it was a phone call from Samime to the insurance company telling the insurance company what the hospital was doing. Within three days of receiving the insurance company’s letter, Derya was released from the hospital that will not be named here. Not because she was cured, but because the insurance company told them they would no longer pay.  

Which brings me back to Gilmore Girls and the Washington Post article.  Yes, it’s not surprising the damage that can be caused by medical institutions.  And while Gilmore Girls is fiction, the doctors and nurses made up, it should be noted that there are great medical personnel out there fighting the good fight for everyone.  There are families who need help and get it – even myself. I’ve had several procedures over the years and survived. As in any profession, there are the Hero’s and the Zero’s the Captain America and the Thanos, the Great and the Knucklehead.  Often times they’re on the same floor working with the same people. May God watch out for you, May you have the blessings of your Almighty. And today, what we have called FREEDOM DAY please think of our daughter Derya as today, two years ago she was freed from the clutches of – well.  You know who I’m talking about

 

Much Love,
#FreeDerya

Everyday A Blessing!

It was today, two years ago, that we were told by the administration of the Hospital that Derya would be confined at their hospital for another six months.  It was today, in a meeting with several doctors and social workers we had our hearts broken – again by this institution that “shall do no harm”.  Yet they did.

This picture is meant to identify just how important our Derya is to us.  This picture is Derya resting comfortably at home, after having a nice meal watching some television with her dad.  We took this picture just a few days ago, her vibrant beauty and smile shine through.

As you already know, it was five days after our meeting that the hospital released Derya to our custody.  Amazingly, it was only three days after this meeting that the hospital contacted us to arrange her pick up.   It’s hard to believe in our modern day that Robert Burn’s words, “Man’s inhumanity to man, makes countless thousands mourn.” isn’t just something from history, but active today.  Worse yet, it’s in the hearts of those we were supposed to be able to trust. As some Hippocratic professionals cause more harm and suffering while still, other doctors share in our suffering as their hands are tied as well, unable to change the outcome.

How can we make a difference?  Especially when we have no power. Certainly, we have those who have spoken up about this destructive disease.  And awareness is on the rise.  Yet, in the meantime, families suffer through caring for their sick child and we observe from afar, reliving our own nightmare as we still live within our own suffering. No pain is so great, nor suffering so much as to watch your child in pain and know that there is nothing you can do to take the pain away.  Despite our offers to God to replace us with our child, our pleas of mercy and hope for a brighter tomorrow.

And still, I hear my mother’s voice reading to me Robert Burns poem.