My letter to Santa
Dear Santa,
As you know, I have given great thought to my Christmas wish this year. I hope I have made your "NICE LIST", as my wish is in the form of a favor.
Since I am awake, due to insomnia from the IV solumedrol infusion I received yesterday afternoon, I thought it was a good time to write you. I guess I didn't need to tell you that, since you see me when I am sleeping and you know when I am awake. LOL:)
Sometimes the lessons we need to learn to grow our soul and faith come in the most unexpected forms. I have realized the truth of this and am doing my best to rely on my faith, to celebrate the love and support I receive and do my best to face my adversity.
Santa, I have to be totally naked in my honesty here. As Head Elf, embodied with the Spirit of -now here's my word finding problem rearing it's head... It means to love without qualifying, or judging. Can't remember how to say it Santa, but you get me. How could anyone ever imagine they would get a disease where your immune system attacks your brain?! I mean if my brain isn't working right, nothing works right. That's a hard thing Santa! We are talking Tough challenge here!
Santa, you know this. You have been watching. I don't have to explain. You have lived it with me. Yeah, I'm totally on the "NICE LIST".
Sorry, attention span problems, back to my favor. But, I have practiced daily random acts of kindness for many years...attention span problems again and worries I might not make the cut on that 'Nice List'.
Santa, this disease has created personality changes that are not the heart of me. It has taken ME away before with episodes of psychosis twice now. I am inside. In my heart, buried deep. I am ME. People are not able to see ME when my brain disease flares in this way, but YOU can! Sorry, I will try to stay on topic. Attention Span problems, but YOU know this:) Okay, forgot what I was going to say! LOL. Wait, I'll reread this and write my main point on a sticky note so I can member my wish. Why am I telling you that? YOU see me. YOU realize everything:) Ok. Wait. Let me re-read. Yes. Got it. My Christmas wish!
I am having a problem with worry for my future. I have now faced FEAR. I have stared it down. I have survived. I get scared sometimes. YOU know I do. My faith and spiritual beliefs sustain me; through them, I draw my courage and do my best to surrender my fear. This brings me to that favor I mentioned. My Christmas wish. Gosh, Santa, I need your help.
By the way, Jim says guys like peanut butter cookies and oatmeal raisin the best so we will be leaving those out in there usual place by the Cocoa. Feel free to use the copper pot I leave out for you to warm up your Cocoa in case you find yourself running late;) Oh, the carrots for the Reindeers are grown by local farmers- am adding some lovely fresh pears this year... But, you know that too... Sorry. What was I going to say? Oh, right! My Christmas Wish:)
You'll find an envelope by your night time snack. I've enclosed all my fears and worries inside. Could you kindly take this from me? That is my Christmas wish. And when you make your leave, by the way I LOVE that time suspension magic you do- very cool!! When your laughter rings out within and around our home, a bit of Christmas Spirit Magic to infuse laughter, Joy, and that kind of love I can't remember the name of ...within our home, our hearts and my brain where my fears and worries once were- well, adding your love and laughter to mine. That’s a powerful infusion! Exactly what is needed to receive the appreciation of each day. My family and I laugh a lot Santa. YOU know. My laughter helps Jim and Matthew. Their laughter helps me. And so it goes.... P.S. Should you find other letters written by people with Autoimmune Encephalitis, whether they be drawings by children, a single word, or simply the breath of fear blown inside an envelope and sealed, my wish is that you take these too and leave your laughter.
Oh, make yourself at home as long as you like Santa. The weather across the Northern Hemisphere is projected to be very cold. There are extra blankets in the hall closet. Help yourself. When you get to Sarah's house in New Zealand, since it is Summer there and you won't need them, you can leave the blankets with her and she'll get them back to me on her next visit;) Pleasant trip and God speed. Best Wishes, Tabitha Orth
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Tabitha Orth is one of the fortunate patients as she is in recovery today after coming close to losing her life 3 times during her battle with the illness. When her neuro-psychiatric symptoms appeared, she was put on a psychiatric hold and transferred to a psychiatric hospital without a neurological evaluation and processed for an automatic court hearing to be legally committed. No visitors were allowed on the ward which acted as a holding area for the most severely impacted psychiatric patients whom it was determined that treatment or therapy would not have a positive impact. Tabitha went from psychosis to catatonia in her first few days on this ward. Mute and frozen in place completely non-responsive for 48 hours. She emerged from catatonia when deep inside herself she realized the medication she was being given was making her psychosis worsen. Scientific research has verified this to be true with the medication she was prescribed: Risperdal. She refused the medication, came out of catatonia with no short -term memory. A variety of neurological symptoms were noted as ‘noncompliance’, including drop seizures and a 10-hour coma. Her husband was of the impression that she was receiving treatment but learned that no treatment was occurring within a few days. Not one of his 17 telephone calls were returned by the Psychiatrist assigned to her case. There were no doctors on staff at this ‘hospital’, only private contractors. No medical evaluations had been done he would learn later. All he knew was his wife was in a medical crisis and no one was treating her. No treatment plan was shared with him as his wife was on a county hold for 16 days and a ward of the county. He hired an attorney, got legal guardianship and got her out and took her for medical treatment. Tabitha almost died on a county hold without proper medical care. It would be 14 months before an accurate diagnosis was reached. Autoimmune Encephalitis is a rare disease only identified ten years ago.
Today, Tabitha has brain injury and works hard with rehabilitation. She is one of the Founders of the Non-Profit 501(c)3 International Autoimmune Encephalitis Society http://www.autoimmuneencephalitis.net/
Since best outcomes for Autoimmune Encephalitis are when there is a fast and accurate diagnosis and aggressive treatment. Most Psychiatrists, Emergency Department clinical professionals and Neurologists have never heard of the disease and they are on the front lines of encountering the patient first. Autoimmune Encephalitis is TREATABLE! Raising awareness and educating the public to save lives and quality of lives is how Tabitha 'pays it forward'. “So NO ONE will EVER go through the HELL of misdiagnosis as I did!” She says. 6% of all patients in psych wards have autoimmune encephalitis today. They are thought to have schizophrenia, bipolar disorder, drug addiction (but the drugs are not in their system at onset) or an untreatable progressive neurodegenerative disease. In psych wards their disease progresses and they eventually slip into coma and die. Identifying the disease early (within weeks) with aggressive treatment can lead to recovering the patient back to baseline in cases in little brain injury. The book The Exorcist was inspired by a patient suffering from a type of autoimmune encephalitis. The book Brain on Fire, the movie just premiered at the Toronto film Festival, is the story of a woman with autoimmune encephalitis who was lucky enough to be diagnosed and treated and not institutionalized. The disease is now realized to be much more common than originally thought.
What is Antibody Mediated Autoimmune Encephalitis (Encephalopathy)?
A rare disease that can be progressive or relapse-remitting. It is caused when the immune system makes auto-antibodies that are not supposed to be there. These auto-antibodies (aka antibodies) begin to attack healthy brain cells wrongly identifying those healthy brain cells as foreign. An autoimmune response is now occurring as the immune system attacks and destroys the brain’s healthy cells. Your own body’s immune system is attacking your brain. You are the victim of “Friendly fire”.
The antibody attacks by targeting special receptors in the brain that are on the cell surface, or synaptic protein of healthy nerve cells in the brain. Sometimes the antibody seeps inside the cell it is attacking. These antibodies bind to the healthy brain cell damaging or destroying them. Severe brain inflammation occurs. The brain now malfunctions.
AE is TREATABLE. Recovery is possible but most face years of treatment and rehabilitation. Many are left with various levels of brain injury.
