Tag: Brain on Fire

I’m reminded of a day so long ago that I can’t recall the date. Certainly it was a different lifetime.  My parents were still with me and I hadn’t met Samime, nor my kids. My life wasn’t complete, although with my hubris I was sure it was the best it would ever get.  

Just as I’m sure I was wrong, I am sure nearly everyone who reads this has felt the same.  Life was good, completely perfect seeming and without problem.

As I recall I was working two jobs, getting up at 4:30 in the morning, hitching a ride with my old girlfriend as we would both go off to work.  I’d work till 1130, and walk over to the Shop Rite, my second job. Along the way I’d stop by McDonald’s and grab a quick burger and shake.

I’d put in a 1 to 10 shift when I’d get picked up by my parents or girlfriend.  I think I was 19, fresh from high school without a car and wondering what the hell I was going to do with my life.

I remember thinking about my options and realizing -suddenly that I had missed all my opportunities to go off to college or even join the military.  Neither of those options had really been a part of any talk or plan I’d had with anyone. I remember my father, a vet and a guy who had worked as an army ballistician for over 25 years.  I don’t know why I didn’t join the army. Honestly, it had more to do with the unknown and an unwillingness to take a risk that kept me from joining and maneuvered me into going to college.

LIFE

In life we often reflect on what different choices we could have made. What I know is that my life could be dramatically different if I had taken a different path. I would never have been on the track to meet my wife and kids.  I can’t imagine anyone else filling my shoes. Not because I’m irreplaceable- I’m not. Let’s be honest, there are hundreds and probably thousands if not millions of parents out there today, right now, providing primary care for a loved one who is sick, incapable of taking care of themselves or the equivalent.

But I wouldn’t change it for all the tea in China, all the milk duds in the store.  I love my family as I’m sure you all love your families. And in that, we all have a bind that holds us together. One which can be understood and appreciated as well as respected.

We never know the journey our life will take, the twists or turns.  And we have no idea what our neighbors or their families have or are going through.  However, we all endure!

In this holiday season I hope and pray that all of us find the peace, kindness and love that we need.

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

#FreeDerya #JamesBaldini

Words from Samime!

Recently, I was having a conversation with James and I told him I finally have figured out life. He asked what I meant. I think most of you all know I am Turkish, Muslim religion.  (Definitely, not a great Muslim but I stand by it.).   James, a Catholic who hasn’t been to church because of our circumstances, but definitely believes and is very much about giving back.  Both of us have been through a lot with Derya being sick. Our lives have changed in ways we would have never have dreamed possible.  

I told him that this life is not ours.  It is God’s. God gave us life and He expects reimbursement for that life.  Forever, while you are able, it is your duty to give back, to help people, to help those less fortunate.  It is our job to give more than we take, and to feel joy from spreading love and good will.  Our rewards are plenty.  Our children are home, safe.  A roofover our heads and our ability to think to solve our problems.  He said that is a very Christian view.  I only thought of it as our view.  I did not think about any particularreligion.  To me it does not matter, whateveryou believe, in the end it is about this. You are here as a gift from God, hewants his dues.  Give it back to him.

A Path to Giving!

That was from Samime late Saturday night.  I was half asleep, ready to drift into the other half of sleep.  At the time I read what she wrote and knew that it would go into this week’s post.  I decided I needed to give a little more.  Not because what she wrote needed it, but because I needed it. 

John Donne said: “No man is an island”, the rest of the quote goes: “entire of itself: every man is a piece of the continent.”  Which makes sense.  We are all one piece of a larger community.  I can see this as I look across the various groups on facebook that have sprung up over the last four years.  As awareness of this disease spreads, so do those that wish to help or those that seek help.  We all end up in both categories at differenttimes, sometimes at the same time.  We know this simple truth that Samime has stated so eloquently.  It is our purpose in life to reach beyond our“island” and help the rest of the continent or community. 

Finding Solace

Some find solace in meditation, others find it in a form of yoga or mindfulness activities while still others seek the comfort of prayer and a relationship with God. There is no better way to find that peace, but the best way is the way that works for you.  A universal truth is that in order to help our loved ones, the day to day grind of caring for the more fighting for their rights requires that we have that inner peace, that regeneration of our energies so that we can get up and face the day. 

To you, from us, we welcome you to the continent and hope that your island joins with us in making the world an AE friendly place; a medical community that accepts, understands and appreciates how to deal with AE and provides the treatments to save our families.  This isn’t a fight to save one member of it, but all of us as this disease destroys not just one life, but the families!

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

#FreeDerya #JamesBaldini

Strength To Fight

It takes a certain amount of strength to fight this disease.  Samime and I always say that Derya is our Superhero. The amount that she has been through, the rough road ahead that she has to face, the struggles she already has had to face.  The torture at the hands of medical professionals and those who would say they were doing right by her.

I think this is a product of the age when we accept that life will get better.  We often recognize this but wonder when that will be. The problem is, it’s difficult to keep that faith when things are tough and you have to remain strong.

Star Wars? or Derya!

If it wasn’t me and it wasn’t Samime, it could only be one other person – Derya.  

In the picture the word strong is prominent.  It’s from a wall sticker that was Deniz’s from Star Wars.  The original parts of it were “The Force is Strong in this one…”  obviously a reference to those of the Skywalker family. Originally, this sticker was on another wall.  I remember the day that I noticed it had moved. I asked Samime and she said she hadn’t had anything to do with it.

Since then, I’ve noticed Derya adjust, pull it from the wall and then re-sticker it, as if she was smoothing it out.  She’s sat there, looking at and I’ve always wondered what she was thinking.

Strength in Love!

Then I remember the things that Samime and I have been telling her, about how strong she is, about how brave she is.  How she is going to get better, how she IS getting better. We’ve noticed changes over the months, improvements. There’s more of Derya in the every day and less of that monster that is this disease.  I hope I don’t jinx anything by saying all that.

The truth is, we never know what tomorrow brings. For me, the proof of my faith is in Derya, her hopes and dreams.  Her getting better. We know this, that we love her.  We know that she knows we love her. And we know that she is getting better, a little here and a little there – but she is getting better.

Even if she can take a small little sign, and move it over towards the place where she spends seventy-five percent of her day.  It’s as if she was sending a message to Samime and me. I am STRONG, Mom and Dad. Call it fantasy thinking. I don’t mind. But she put it in a place that Samime and I see every day.  It’s over the place where she is hanging out with her parents. She could have put it anywhere else. She picked over the bed she “hangs out” in as she is in the picture. Lying in bed while I type away here, working on grades or one of the other dozens of things that I do on the computer while I wait for her 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

#FreeDerya #JamesBaldini

Part of this process requires a significant amount of down time.  I know Samime and I spend hours of our week simply sitting. With Derya’s waxing and waning behavior you can never make an accurate prediction of her needs, activities and wants.  It’s more of a measure that changes with the moment with zero predictability.

So we sit.  This sitting, for me, allows me to come up with these posts.  For Samime, she uses that time to do what she always does, clean.  She doesn’t really sit. She’s up and in the hallway, cleaning Derya’s floors, vacuuming the rugs in Derya’s area of the house, folding laundry while Derya maybe sitting on her bed, writing Thank You cards, or scratching some picture or random thought onto one of the notebooks we have available for her.

Of course, this is beyond the usual things that we need to do for Derya, helping her regain the skills she has lost, making sure that she eats enough, helping her feed herself and various other aspects of care.

Last week, I talked to Derya.  Not the waxing and waning girl that my wife and I are caring for.  But Derya. The rare glimpse of the young woman who I helped to raise.  She “popped in” as we were giving her treatment. In a more than emotional moment I heard the worry in her voice, the fear in her face.  I remember now, over a week and a half later the words I said to her when she looked around in confusion.

Mission From God!

“Derya, it’s okay.  You’re home. You’re safe.”

“Dad?”

“I’m your dad.  You’ve been sick, but you’re getting better.  You will be better. You have a mission from God.  You’re going to save other kids just like you. Believe in yourself.  You’re a hero.”

It was more of a monologue from me than a conversation.  I can’t explain the feeling. It was the certainty of feeling in something.  I knew she was there, looking at me and hearing what I was saying. Her focus, attention, and look on her face.  Derya was hearing me. She heard every word I told her.

So now I sit, listening to our music list in the background.  It’s our music list because it’s the music that Derya listened to all those times we went off to look at colleges.  I’ve augmented the list with some more modern versions of the same artists and those I think she would like. Cosmically, my daughter and I have similar music interests in modern music.  

One of those songs is “Begin Again” by Rachel Platten.  I know that Derya would approve because it has become one of the songs that is a Clarion call.  The chance to begin again, start over. She needs that as we all do. A chance to start over. In this, I hope Derya sees the Mission she has, to help all those who are sick and fighting for their rights; those fighting for the freedom to not live in a tyranny by a medical profession that sees psychiatry as the only answer.

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

#FreeDerya #JamesBaldini

Melancholy of Suffering

It’s easy to get lost in the melancholy of the suffering of Derya and the rest of the family. I’m sure that many of you – infact all of us have experienced something that would draw us down into a depression if we continued to allow it.  Some have developed coping skills that help navigate these times better than others. For many, however, this isn’t very easy.

Our son Deniz is a case in point.  Over the years he has had a front row seat at a seemingly never ending nightmare.  He has heard the yells, the struggles of Samime and myself to help Derya. Deniz saw her at the Hospital, trapped and abused as they “experimented” with their “superior” knowledge of what she had.  

He saw firsthand the damage they had caused, the way their “experiments” had set her back.  How does a young woman go from capable of driving herself, cleared to go back to Amherst College Student who was able to navigate from Columbus Circle to Penn Station – and yet, within a couple of hours of doing all this she becomes someone who needs to be locked up in a psychiatric ward?  Derya didn’t have madness, the system does!

Unfairness and Injustice

He saw the unfairness of the world shoved in his face and he lives with it everyday.  Compounding the problem for Deniz has his own disability. He struggles everyday to understand the world he lives in, how to interact with it and what other people are trying to tell him.  And yet, throughout it all he misses his big sister.

For years, he understood that she would be there for him.  That she would always be on his side. They watched television, went places, had special brother/sister moments together; gotten in trouble together and had each other’s back.  And now what. Those memories are faded and replaced with the young woman struggling – fighting to get herself back. It hasn’t been a happy time for anyone.

And yet he keeps moving forward.  

Moving Forward

Locally he was celebrated in the paper for his success of holding two jobs while attending school.  The local volunteer group (PassItAlong.org) did a video showcasing his success within their program.  How much he has matured and grown. We should be overjoyed – and we are very proud of him.

Yet the one person he wanted to be proud of him, his sister, is unable to celebrate with him, revel in his joy.  Why? Because of a few narcissistic monsters parading themselves as doctors – demeaning their profession; responsible for a stain on the pledge of Hippocrates.   I have no kind words for these people, and fewer for those people and organizations which harbor these monsters.  

Why should I, you may ask.  But why should THEY, why should ANYONE is the question you should ask.  

God Bless Deniz, the hero of this story

You can read more about his article here: NJ HERALD (OCTOBER 22, 2018)

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

#FreeDerya #JamesBaldini

PAST BETTER TIMES

Sitting down with Derya, watching 10 Things I Hate About You has brought back so many memories for me, most of better times.  I remember when Derya was in middle school. She went to the school that I teach at. In one of our classes, we watched this movie, “10 Things I Hate About You” as part of a larger project.  For those of you who don’t realize this, the show is a modern adaptation of Shakespeare’s Taming of the Shrew. There are all kinds of Easter Eggs buried in the story, from the name Verona, the quotes, and the storyline that parallels the storyline of Shakespeare’s play.

It’s hard to not watch this show and feel some of those memories come back to me.  Her expressions as she watched the movie for the first time or when her eyes lit up at the reference to Shakespeare.  Derya, for those who don’t know this, is an avid lover of literature. While she is more friendly with modern literature she can appreciate in a pinch the wordsmithing of the Great One!

Movie Memories

I’m sure the cool music, handsome actors and funny storyline probably helped as well, but the bit of me that’s the educator hopes that Derya saw the love literature at these times that I helped to facilitate.  

As I was explaining.  Watching this movie brought back so many memories.  I thought of the tall bookshelf of Derya’s that had been in her room, filled with books; books in a row, stacked on top of the rows until they bumped into the shelf above.  Each shelf bowed. The titles going on and on, spread from classics to modern day. Fiction stories, self-help stories and the collection of short stories that she had gathered together.  Her closet, filled with hanger after hanger of the clothes she gathered over the years. The stacks of shoes that had been bought and worn along the foot of her bed waiting for her to rush out.  She was always seemingly five minutes late cruising down the stairs with her backpack over a shoulder pen stuck in her ear and a textbook in the crook of her elbow.

Lost Love of Literature

That book shelf is gone from her room. The books boxed and stored for someday. Instead, sitting outside her room it has the binders filled with her medical information that we have available for her multiple doctors.  Now the binders fill the shelf, medicine sits on another shelf and sitting on top is the collection of care items that we use for Derya. The closet is filled with more support storage, the shoes packed away but for a few.  The backpack filled with her books from college when Samime went up there and brought all her things home from college. The textbook is lost, I’m sure packed away with the others. The pen long ago used up from the things that Derya has scribbled to us over the years.  

Instead of reading the latest bestseller, or writing her own Great American Novel. Derya struggles to understand her identity as she waxes and wanes through this disease and the turmoil caused by bad people intent on their own designs.  The young woman she was is gone. The pain I see in Samime’s face at this awareness is etched in the lines of wrinkles that have grown in my own. These wrinkles aren’t laugh lines but ones filled with sadness the tears matching Samime’s pain.

MONSTERS

Life is different for Derya.  It’s heartbreaking. What’s really heartbreaking.  It was in May 6th of 2016 that Derya was well on her way to a cure before she was snatched up by the people who would ignore her diagnosis.  They knew better. And in their knowledge they turned Derya from a functioning, driving, capable young woman into a girl who struggles to feed herself.  Derya drove herself to New York City.  

Many of my associates tell me that they have no interest in going into NYC because they feel that there are monsters, bad people and a real chance of having something bad happen to you.  Intellectually I know this isn’t true. But look at what happened to Derya.  And this wasn’t done by some criminal element bent on harm.  If it wasn’t Bellevue that changed this functioning young woman into what she was – then who was it?  Exactly

Life isn’t different for Derya only.  And yes, there are Monsters in NYC.  Monsters who will steal your life – but don’t worry about the criminal element as much as those bad actors who say they want to help!

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

#FreeDerya #JamesBaldini

The Long Winding Road of Recovery

This morning was an early morning.  Derya was up unusually early, needing my attention.  Over the last two years, there are many things that I have come to hate.  Everyone knows it’s not healthy to hate, but you might understand. I hate the thought of her not having everything she needs.  I hate the sadness I see in her face. I hate the weakness she is forced to show because she was once so strong and powerful, astride her future as if no one would stop her.  

Most of all, when I think about how I change her bed, help feed her or do any of the other items of care she needs.  I hate to think about the helplessness I faced and I hate even more the feeling of loneliness she must have felt over two years ago as she begged me to come to get her from Bellevue.  I hate the fact that I couldn’t help her and stop the pain she was going through at their hands. But Bellevue isn’t alone.

The Long Road of Betrayal

Yes, Derya has a disease called Autoimmune Encephalitis.  And Yes, there are people who were responsible for making her condition worse.  The doctor who decided he wasn’t going to tell us about her Terratoma because he wanted us to come back for another $600+ visit, and kept quiet despite the professional ethics which dictated differently.  I accept that he has a right to earn a living, and he could have urged us to come in to review what he found – but he didn’t. My primary care doctor has called me in for a lot less after some blood work and tests, just to tell me my A1C had gone up half a point – a far less compelling reasoning than the source of my daughter’s disease.  His inaction – greed or incompetence at your discretion – cost Derya nearly eight months of suffering.

Then the other doctor who abandoned her after Bellevue, but not after he spent nearly fourteen months canceling appointments as his altering schedule due to his popularity impinged on his ability to care for patients.  His abandonment, despite his assertions “, to treat us as if we were family” as he said to us in an appointment. His actions are truly despicable. I fear for his own children if he treats them the same way.   These two contributed to the Long Road of Betrayal Derya has suffered.

Real Justice

And so, I have much anger.  But I have a strong belief in a higher power, a God that loves and cares for us and will bring us to the true justice – a Derya that is stronger than ever, fighting the good fight against the forces of evil and darkness which sought to trap and keep her.  As I right this now, Derya is looking at me as if she knows exactly what I am writing. Those looks of contemplation, staring and wonderment fill me with hope. To me, that’s her brain processing the world around her as she begins the long road back to recovery after a long road of betrayal, harm and outright attacks against her from undisciplined, ill informed and bad medical professionals who allowed evil to seep into their heart.  

And justice comes in her success.  Success despite the ogres of evil who stepped in the way, caused harm and interrupted her care.  These people will eat crow. They will to for the evil they have perpetuated.

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

#FreeDerya #JamesBaldini