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A Mother’s Heartbreak

A Mother’s Heartbreak

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January 31, 2024 | by Laura Zendejas

Introduction from the IAES Blog Team:

A diagnosis of Autoimmune Encephalitis can be devastating and overwhelming. It is difficult for patients, family members, caregivers, and medical teams. Watching a loved one suffer can be excrutiating. Being a parent of a suffering child is a level of mental pain that no one ever wishes to encounter. We share with you a beautiful poem written by Laura Zendejas that speaks to the heartbreak a loving Mother feels for her sick child.

—-

NMDAR encephalitis

You took away my child

You took away my peace

You took away my feelings of blessings and feeling pleased

I was happy before you came

I was worry free

I knew my child was safe and healthy

Then you came to be

You attacked her brain

You attacked me

You made me realize I had no control

That you were the all mighty

I begged

I cried

I asked why

Still I have no answers

Still I search today

Now that you have left my child

Why do I still feel this way?

Why do I still feel you near?

You attacked her brain and you set her free….

So why are you still attacking me?

~a poem from mom

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On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org  

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.   Trivia Playing cards 3 FB 500x419 - A Mother's Heartbreak For this interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.   AE Warrior Store 300x200 - A Mother's Heartbreak

Be a part of the solution by supporting IAES with a donation today.

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The Island of Misfit Toys

The Island of Misfit Toys

January 10, 2024 | By Tabitha Orth, IAES Co-Founder and President

Our son, Matthew is watching Rudolph the Red Nose Reindeer tonight. It triggered the memory of a wise, insightful observation he had given me several years ago when I was recovering from a brain injury caused by autoimmune encephalitis.

My executive functions had taken a long vacay. They were MIA.  I rarely did something right. My memory took the hardest hit, especially my short-term memory. I needed a lot of help. That said, I was still “ME”. I was just – making a lot of mistakes. Matthew put his arm around me and tucked me into his side. This is a rare action of giving comfort for Matthew which made its impact more deeply felt. He said, “Mom, you are just like one of the toys on the Island of the Misfit Toys.” Love, acceptance, compassion, and comfort washed over me at the beauty of his words. Reassuring me that although I am a ‘broken’ Mom, I am deeply loved and he will always accept, support, and help me.

Those of you who know my son, know how engaging, honest, and forthright a man he is. You also know how much his autism impacts his life. A visual learner, Matthew has learned language from movies and cartoons. Social graces and social norms on all sides of the spectrum are gleamed through family film entertainment. So much of his understanding of the world, nature, history, science, and the like comes from documentaries on a wide range of topics. He saw I was ‘Mom’ and his Mom had “a brain problem” is how he described it. He told me it wasn’t my fault I “got a brain problem”.  I had been broken and his love never wavered.

Being reminded of the Island of the Misfit toys, had me searching the internet to look it up. I came across this article, We Are All on the Island of Misfit Toys, and it transfixed me. Yes. The author has this right.

The Island of the Misfit Toys Is a scene from the Christmas classic Rudolph the Red Nose Reindeer. If you don’t remember the story, the Island of Misfit Toys is where we find a Jack-in-the-Box named Charlie, a spotted toy elephant, a water pistol that shoots jelly, and all of the other weird toys that nobody wants to play with. The ruler of the Island–a kindly flying lion named King Moonracer is like Santa Claus in reverse–every night except Christmas, he goes all over the world looking for weird and unloved toys. Then he brings them back to the island where they form a community of the unlovely, unloved, and un-played-with. Eventually, the Moonracer promises them, he will find a little boy or girl who wants nothing more than a Jack-in-the-Box named Charlie.

As the article below explains, the inhabitants of the Island of the Misfit toys are splotchity. Synonyms for “splotchity” might include “irregular,” “unpredictable,” “uneven,” or even “messy.” But none of these work as well as “splotchity.” 

The author goes on to explain that the opposite of splotchiness is uniformity: factory-produced items that all look alike, tract homes in a new subdivision, things that are perfect, uniform, balanced, symmetrical, and even. Such uniformity does not occur in nature; it is the product of human enterprise. Human beings equate beauty with uniformity and go to great lengths to eliminate splotchitiness.

If God stamps each person with a uniqueness that signals his love, then those who believe in a higher power have a responsibility, not merely to tolerate what makes people unique, but to glory in its divinity. We are unique, and therefore splotchity, in many different ways, all of them divine. We are all misfit toys—because that is what beautiful looks like to God.

Note:

The term executive function (EF) is an “umbrella term” which encompasses a range of cognitive, emotional and behavioural difficulties which often occur after injury to the frontal lobes of the brain. Impairment of executive functions is common after brain injury and has a profound effect on many aspects of everyday life. Planning, problem-solving, self-monitoring, organization, divided attention, shifting or mental flexibility, and initiation of behaviors are often included under the term executive functions.

Attention and working memory are also sometimes listed as executive functions. The development of executive functions (EFs) is considered to be important because they are necessary for purposeful, planned, organized behaviors such as goal setting and attainment. Most of us take these abilities for granted and we effortlessly perform extremely complex tasks all the time in our everyday lives. Brain injury, Brain damage or active autoimmune encephalitis are all reasons that an individual may have difficulty with executive functions.

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https://bycommonconsent.com/2020/12/04/we-are-all-on-the-island-of-misfit-toys/

Click here or the image below to subscribe to our mailing list :

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Your generous Donations allow IAES to continue our important work and save lives! 

 

 

 

 

 

Tabitha Orth 300x218 - The Island of Misfit ToysOn June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

 

 

 

guidestar platinum logo 300x300 1 e1605914935941 - The Island of Misfit Toys

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - The Island of Misfit Toys

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - The Island of Misfit Toys 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

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The Long Road to Somewhere …. Wherever That is

The Long Road to Somewhere …. Wherever That is

September 27, 2023 | By Amanda Wells

Introduction from the IAES Blog Team:

The staff at IAES is proud to present to you the heart wrenching AE story of Hannah Wells written by her biggest fan and advocate, her mom! This journey travels a very long and bumpy road but also is one of resilience, never ever giving up and, mostly, this is a story of love!

——-

Have you ever noticed how many people, when they are encouraging you, will say, ‘Oh, don’t worry you’ll get there’ but what if you no longer remember where ‘there’ is?

When my youngest daughter Hannah was born, she was 6 weeks premature. On Christmas day of 1983, the paediatrician called and said, ‘If she doesn’t fight, we will lose her, it’s now up to her’! New Year’s Day 1984 he called again, ‘Come and pick her up, take her home, she is a real little fighter, she did it!’ That day when she came home in our arms, we had no idea how that little fighter would have to dig very deep, again, and fight for her life 35 years later!

Hannah was our social butterfly, she was popular with everyone, and everyone seemed to know her! Once she started to talk, she never stopped. Her Grade 1 teacher said to her, ‘Hannah if you can stop talking in class for a whole day, I will give you $20.’ Hannah couldn’t stop talking so the $20 was left wanting!

At age 35 she had been working as a Practice Manager in a Dental Surgery for 10 years. She was amazing at her job. Dentists and patients alike loved her. She was chatty, never took a sick day, and was always organized. Hannah would call me every day from work just to fill me in on what was happening and to touch base.

Around the end of April/ May 2018, Hannah got the flu. She was suffering from headaches and became deaf in her right ear. She went to a general practitioner, and he said, on the third visit, to see a psychologist, he did not believe her headaches were real!

Then one day, in early June, my husband (who was still alive) and I had just been to IKEA and were on our way home when my mobile phone rang. It was Hannah. She had called me the night before to say goodnight and was fine, but this call was anything BUT fine. She was paranoid, delusional, and hearing voices. She had made up some unbelievable story of what was happening next door. I got off the phone and remember feeling ice in my veins, my husband, Hannah’s dad, and I looked at each other and said, ‘What alien has stolen our daughter?’

The days that followed that fateful June day were horrendous. Hannah was in full-blown psychosis. She would call me up to 30 times all night long, as she had insomnia. Her thoughts were disorganized, she could no longer work, and she couldn’t remember how to turn a computer on, copy and paste or even how to unlock a door. She couldn’t change her clothes because she couldn’t remember what clothes went where. She had no idea what day it was or even who our Prime Minister was. She would take off in the car and we didn’t know where she was. She didn’t even know where she was. The internal trauma and also one of her symptoms were now causing unimaginable rage.

When this all began Hannah developed dyskinesia or involuntary and jerking movements. She lost an extreme amount of weight and was now 35 kgs (between 75-80 pounds). Her anxiety was through the roof, and she had become aggressive. Her hair was falling out in spots, and she had tremors in her hands. Hannah knew something wasn’t right but by now had no idea how to articulate it. She was living in a mental prison that was terrorizing her. She knew, in all this chaos, something was wrong in her brain but had almost stopped talking. When she did talk, she would repeat the same sentence for hours, therefore she was unable to articulate how she was feeling.

She/we needed help, this was not our daughter, and I was desperate.

I took her to a nearby hospital emergency department hoping they could help her, but sadly this is where the nightmare really began. Not one test was done except a blood test for drugs. The on-call psychiatrist took me aside to ask what happened. I told her, ‘Hannah has never taken drugs, doesn’t drink, has no past or present trauma, and no mental health in the family. I said this happened, literally, overnight’. I will never forget her reply, ‘That means absolutely nothing.’

Hannah was sectioned under the Mental Health Act and put into the psych ward. The only test done was daily drug testing, no neurological testing was ever done or even suggested. The psych wards in our state are still lock-up wards. She was started on Risperidone, but Hannah refused to take it and would spit it out, as she told us much later, it was making her feel worse.

After getting her released from that psych unit, we decided to take her to one of our large teaching hospitals. They took her from me, and I had no further contact with her. I wasn’t asked what led to our decision to bring her there. They placed Hannah in a room with no water, bathroom, or blanket and took her phone away from her for 12 hours, no one checked on her. They then sectioned her under the Mental Health Act again.

I was trying to speak to a doctor and when I finally did, he told me she had been on drugs, ICE, and that’s why the dyskinesia in her face and weight loss. I asked if he had her chart in front of him and the blood test to confirm this. He admitted he didn’t! Again, no tests were done on Hannah, we couldn’t get information about her from the staff, and by now we were desperately trying to get her out of that hospital and under a private doctor’s care.

To this day I have no idea how my husband got her out of there and got her an urgent appointment with a private psychiatrist, but somehow, he did! She was immediately admitted to a private psych hospital. They did an ECG (on her heart!!!) tested her blood for drugs and that was it. They put Hannah into 2 weeks of CBT, cognitive behavioral training for someone, who cognitively, was a mess! Her short-term memory was non-existent. She was unable to read, write or comprehend 2/ 3 sentences. They also prescribed new antipsychotics! Hannah’s memory and executive functioning abilities were in total chaos, but not one person suggested a neurological workup! As her Mum, I had never felt so hopeless in my life. My daughter was there on the outside, but on the inside, it was like she had left us permanently.

By the end of September and Hannah’s initial psychosis was at last dissipating. There were still the outbursts of rage, strange seizures where she would seem to be frozen, dyskinesia, and limited speech that was often slurred. She would still repeat a phrase or thought for hours, we called it her hamster wheel.

2018 turned into 2019. Trying to get through 2019 was difficult, to say the least. Not only had the disease traumatized her but the auditory hallucinations and repeated hospitalizations had bullied her. She was still very sick, and the doctors had no answers at all!

In 2020 I decided to take her to my dermatologist to check the alopecia (hair loss) that had begun back in 2018 when this all first began. She did a blood test and told Hannah she needed an endocrinologist immediately. She felt she had a thyroid problem. Her blood samples showed abnormal levels. The endocrinologist who treated my husband for osteoporosis, treated Hannah for Graves’ disease, but soon realized this was not her thyroid, there was something else going on and as she said, ‘it was above her pay grade.’ She sent Hannah to her brother who is an infectious and rare disease doctor.

During this time, I went with Hannah back to her psychiatrist who still insisted on seeing her monthly. I was stunned when we told him about the blood tests and the endocrinologists’ findings. He said, ‘I believe this is just a false positive and she just has anxiety and stress.’ 

By November 2020 we now had seen the rare diseases doctor who flagged her for Autoimmune Encephalitis, but he was stumped and believed she needed a neurologist. We found a neurologist who knew about AE and waited 6 weeks for an appointment.

During all this, my husband, Hannah’s dad passed away a few days before Christmas 2020. I had been caring for him for the last year and for Hannah also. I was exhausted!

Hannah and I were now both grieving the loss of a great husband, an incredible dad, and for Hannah, and the life that she once had.

It was 2021 by the time we saw the neurologist. He ordered an MRI, lumbar puncture (LP), and EEG. He told us the MRI came back normal, as did the LP, but the EEG indicated slowing in the temporal lobes, He said he believed she had Autoimmune Encephalitis. He put her on high-dose steroids tapering down for 3 months. There was some improvement after 3 months, so he repeated the high-dose steroids.  He then put her on Cellcept and steroids. He told her to come back if she needed him.

In April 2021 Hannah had a horrific reaction to Cellcept. The neurologist discontinued Cellcept, but she remained on steroids. He said he felt it was now probably too late to treat her! During this time, Hannah began to have breathing issues, but a CT scan did not reveal anything amiss. I was very concerned about Hannah’s bones with all the steroids and told her neurologist, as osteoporosis runs in the family.

April/ May 2022 Hannah seemed to be in a relapse. The only answer they had was more high-dose steroids. Hannah’s GP (general practitioner) was concerned and referred her to another neurologist for a 2ndopinion. This new neurologist, also, said it was Autoimmune Encephalitis and put Hannah back on another round of high-dose steroids and wanted Hannah to have full cognitive testing.

This journey was beginning to feel like one big roundabout that had no exit. Trying to get any proper treatment was almost impossible.

Her cognitive testing showed deficits with her executive functioning, word processing, short-term memory, and visual abilities were all very badly affected. Hannah was told she needed brain rehab immediately. The report said that this was caused by Autoimmune Encephalitis and damage to the temporal lobe.

The neurologist then said I will see you in 6 months and since it had been 4 years since this all began it is too late to treat Hannah. Her MRI showed a small amount of inflammation, but again ‘It’s too late to treat her now.’

At this point in this long terrifying journey, I was ready to scream. Hannah was now traumatized by the very system that is supposed to heal and help you navigate through a rare disease.

Exactly one week and one day after the neurologist sent us on our way for 6 months to Rehab which was possibly never going to happen because of the long wait list, Hannah ended up in a Private hospital Emergency Dept on her birthday, she was extremely sick. They suggested we go back to her endocrinologist. I was so frustrated we were back at the beginning again!  Hannah was devastated. She lost her career, her friends, her life! This disease is harrowing and traumatic, and you have to walk the road to somewhere …… alone!

I was able to obtain Hannah’s complete medical chart that included all prior testing and information. I was beyond incredulous at what I was looking at. Her breathing issues back in 2021 when they said the testing showed nothing amiss was a rib fracture. I was right, this looked like osteoporosis! All her blood tests showed inflammatory markers through the roof since her relapse in May 2022. Her GP couldn’t believe how sick she was. She was now having around 4/5 seizures a day. Her dyskinesia had returned, and anxiety and OCD through the roof. The GP prescribed Azathioprine and steroids, and seizure medication.

 I asked for a bone density and her bones were a mess, at 39 she now had osteoporosis!

I thoroughly researched all possible doctors we could contact and turn to review Hannah’s case. I found 2 immunologists; one was a neuroimmunologist whose interest was in Autoimmune Encephalitis. Both had 12-month waits. I wrote to both doctors a letter pleading for help and succinctly outlining Hannah’s case history and her present-day symptoms. Her endocrinologist was stunned she was back where she started 4 ½ years ago, she even contacted the immunologists. Both immunologists denied her an appointment. Their reasoning? She was too complicated and was in the system for too long.

 Then out of the blue Dr Martin Newman, the neuro immunologist with experience in AE had a change of heart and called wanting to see her in three days. Her medical file had almost 100 pages (and this was missing most of the beginning files!) and after 5 minutes he said to her, ‘So have they treated you with IVIG or Rituximab?’ Hannah said, ‘No.’ His response was ‘Why not’! Hannah cried, as she sat before someone who just maybe would now help her come back from the brink of the darkness of shame, guilt, isolation, and feeling lost, and she asked him, ‘Will you be able to help me?’ His answer was, “I certainly will Hannah.’ He started Hannah on IVIG in early May 2023 followed by two Ritux infusions. She will most likely be on both for the foreseeable future. Hannah is now, also, in weekly Brain Injury Rehab.

It is now 5 years since Hannah stood on the edge of insanity and a harrowing nightmare. Hannah had almost forgotten who she was and what it’s like to be ‘normal’ and healthy.

I am so thankful to Tabitha Orth, President and Founder of IAES and the IAES family. They were always there, whether I needed a rant or information, their resources seemed limitless. I had no choice but to learn everything I could about Autoimmune Encephalitis. I realized, for an advocate, knowledge is power! I am so thankful for IAES who gave me so much knowledge so as to keep advocating for my daughter.

After 4 months we have seen great improvement. She is mentally and physically up and down. Each day can be different, which we were told to expect, but her progress especially cognitively has amazed all those caring for her medically.

IVIG dealt with a lot of her physical problems. Rituximab kicked in around 9 weeks and she was amazed at some of the improvements cognitively.  Where almost ‘there,’ even though ‘there’ is different from what I had expected, but ‘there’ is more than OK. One of the remaining issues with AE is loss of identity and confidence. Hannah’s motto through all this is: ‘I was enough before and I’m enough now!’

After 5 harrowing and terrifying years, we have learned a lot. If you are an advocate/caregiver or even a patient trying to advocate for yourself, don’t give up! There will be someone out there who has a small beacon of light, a life raft for you to jump in, and most of all hope to give you the strength to keep going. IAES and their personal care held a torch for me to see and guided me to the tugboat whose name was ‘DON’T QUIT!’

Just find that light and keep your eye on it!

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Your generous Donations allow IAES to continue our important work and save lives! 

 

 

 

 

 

Tabitha Orth 300x218 - The Long Road to Somewhere …. Wherever That isOn June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

 

 

 

guidestar platinum logo 300x300 1 e1605914935941 - The Long Road to Somewhere …. Wherever That is

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - The Long Road to Somewhere …. Wherever That is

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - The Long Road to Somewhere …. Wherever That is 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

A Mighty Miracle

A Mighty Miracle

July 26, 2023 | By Rebecca Jablon

Introduction from the IAES Blog Team:

It is our honor and pleasure to bring to you the story of a young boy’s journey into the uncertain and terrifying world of being diagnosed with  Autoimmune Encephalitis from the heart of a mother. A mother who thru faith, resilience, determination and, above all, love found help across the miles and a fierce desire to assist others and raise awareness!

——-

Whether you are a parent or grandparent to a child who has been thrown into the world of autoimmune encephalitis, or into the world of rare disabilities ( or a physician, therapist, special education teacher, or social worker…) I was moved to publish my story “To Add a Miracle” to provide you with further insight and strength.  I wrote with absolute candor and honesty, sprinkled with a bit of humor, in an attempt to accurately portray the emotional rollercoaster that we have experienced.

Our son, Yehuda’s, steep fall into the world of autoimmune encephalitis began just days after the holiday of Hanukkah, the Holiday of Miracles, four- years ago, at the age of five.   He was born just days before the Holiday of Hanukkah.  As I approached the Hanukkah season this year and Yehuda’s ninth birthday, I suddenly felt a strong drive to sit down.  And to write.  And to write more.  Perhaps this is not a coincidence.

At the beginning of our journey/ FALL into the unknown, the International Autoimmune Encephalitis Society stood as one of the lights illuminating our absolute confusion and darkness.  The brave volunteers, often facing current or past struggles of their own, held out lights of information, direction, medical advice, and most importantly glimmers of hope, for a family struggling far away in Israel, where knowledge of autoimmune encephalitis in the medical world is even more limited.  At the time, I was able to connect with only one mother living here in Israel, who was able to hold my hand and guide me on our journey.   I gathered additional armor and strength from the mothers whom I could reach out to through the AE website.   I was ready to grab onto anything and anyone who understood. I was desperate.  Who or What had overnight stolen our son’s words, skills, and identity?

How can a mother accept an unknown or rare diagnosis?

How can she grapple with an experimental and even further unknown treatment plan? 

How can a mother not throw up her hands in total despair when top neurologists eventually throw up their hands?

How can she survive when she screams out, yet no one can answer,

“What suddenly happened to my five- year old son?”

While many books have been written highlighting the challenges of raising a child with disabilities, as you all are painfully aware, autoimmune encephalitis is a recently discovered and often misunderstood illness with a shocking onset.  My writing of To Add a Miracle was fueled by my intense desire to spread awareness and hope, to strengthen mothers, fathers, and families, as they bravely journey toward recovery or increased acceptance and strength.

I will never forget when my then five-year-old Yehuda  desperately called out to me as I left his bedroom one night, marking the beginning of our descent into the unknown,

“Imma (Hebrew for Mother), my brain is broken.  If I die, will you…”

Total confusion, darkness, and piles of despair.  I wish that at the sudden onset of Yehuda’s illness, I had known about, and did not have to wait to discover the collective voices of the International Autoimmune Encephalitis Society, to call out to me, and to hear my cries… to help me to not feel totally alone in my struggles. 

It is my hope and prayer that my book will provide you with an additional dose of strength in order to navigate the bumpy ride, that is our lives with special needs children.  It is my dream to be able to continue to help other parents, using all of the tools, both medical and sometimes emotional, that I have gathered upon our journey with Yehuda.  As I describe in the book, there is nothing that gives me more comfort than seeing another child and family progress and advance, even if that particular treatment did not advance Yehuda. 

Someone recently asked me, “So what do you mean by adding a miracle?”  Please order and delve into my book to find out.   There is no quick answer.

Thank you to all of the administrators and volunteers of the International  Autoimmune Encephalitis Society, for allowing me to take part in their holy work in my attempt to spread awareness of autoimmune encephalitis, through the writing of my book.

To Add A Miracle 333x500 - A Mighty Miracle

Book Description:

To Add A Miracle details with raw honesty, sprinkled with moments of humor and laughter, the dark and light shadows of the Jablon family’s journey; the story also highlights the tremendous strength of Yehuda’s siblings and selected “messengers of miracles” along the way.

With no filters, the story tells the author’s emotional journey as a mother in distress, facing piles of despair, culminating in a greater acceptance of the unacceptable, and a powerful recognition of the miracles that Yehuda has added to her family’s life.

While many books have been written highlighting the challenges of raising a child with disabilities, autoimmune encephalitis is a recently discovered and often misunderstood illness with a shocking onset.

The writing of To Add A Miracle was fueled by the author’s intense desire to spread awareness and hope, to strengthen mothers, fathers, families, and medical practitioners, as they bravely journey toward recovery or increased acceptance and strength.

Rebecca Jablon, the author of To Add A Miracle, tells the story of her sudden and dramatic fall into the world of autoimmune encephalitis, and resulting diagnosis of autism for her son, Yehuda.

  • How can a mother accept an unknown or rare diagnosis?
  • How can she grapple with an experimental and even further unknown treatment plan?
  • How can a mother not throw up her hands in total despair when top neurologists eventually throw up their hands?
  • How can she survive when she screams out, yet no one can answer, “What suddenly happened, overnight, to my five-year-old son?!!”

No stranger to the world of rare illnesses, Yehuda’s sudden overnight descent into the unknown rocked the author’s family. Who or What had stolen her son’s words, skills, and identity?

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Your generous Donations allow IAES to continue our important work and save lives! 

Tabitha Orth 300x218 - A Mighty MiracleOn June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

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 Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Be a part of the solution by supporting IAES with a donation today.

 

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You’re alive, you’re breathing, and growing older is a privilege

You’re alive, you’re breathing, and growing older is a privilege

June 28, 2023 | By M Ledferd

Introduction from the IAES Blog Team:

The staff at IAES brings to you the inspirational thoughts and feelings of a mighty AE Warrior shortly after his AE journey began. M Ledferd has put into words with heartfelt elegance the way we have all felt at one point or another on our journey. His gift with prose has brought to life our deepest feelings and resonated with our hearts and minds. We hope you enjoy this as much as we have! Thank you M!

——-

For those AE survivors, let gratitude carry us. For the caretakers, bless you. For those still struggling, please keep fighting the good fight. We are all here for you.

When I first awoke in the hospital, I felt like a 90-year-old man. A weak, tired old man with no autonomy. A man that could barely move or speak. A man at the end of his life.

Coming in and out of consciousness, I had a lot to think about. (Because I had nothing else to do.)

I realized that people generally saw their lives in stages: a beginning, middle and end. With a middle age that seemed to go on forever. That’s because we have no idea when the end is near. It’s hard to gauge and probably doesn’t even exist in most people’s minds. We simply can’t fathom it. It’s so unknown and far away. But as sure as the sky is blue it eventually reaches us all.

We’re all so different yet all the same. We go from rambunctious, fearless little kids with endless curiosities, to busy, hard-working adults, generating income so that hopefully one day we can retire, where the hours stretch on for days (just like it did when we were little kids).

In retirement, we are sold that we can do anything we want. From reading books to painting, to just chilling on the beach, or seeing the world by cruise ship, or just slow swinging on a porch with an old cat in our lap. I dunno, it’s different for everyone. What I do know is that I had obviously miscalculated a long middle for a short end. Crazy how that happens.

Laying there, motionless, with the chirps and beeps of hospital equipment, the days and nights blurred together. I didn’t know what day it was. But it didn’t matter as time had no relevance. I realized I has spent so much of my life working hard and saving up for a future that would never come. I felt stupid. Decades of grinding, all for what.

I tried to stay positive. To look on the bright side of things. To reflect. I had my fair share of adventures and vacations. My fair share of accomplishments, of friendships. I once took a 3-month solo motorcycle trip across the USA (remember that?). Damn, that was cool.

I got to see the world and was even beginning a new family with my wonderful spouse. I regretted not being able to raise my daughter until she was at least 20. Let me live another 20 years, I said, so I can instill in her self-reliance, self-discipline, curiosity, and grit. To let her know that anything is possible. But I knew that all would eventually be ok. My wife is a warrior with a great big supportive family. And I mean, there’s nothing I can do about it now.

I had a lot of feelings but above all I was calm and grateful. I was grateful I got to experience most of what life had to offer. The exciting parts. The sad parts. The whole gamut of human experience from birth to baby—which is more than anyone is guaranteed. Being in that dark, desolate place in my mind. That place where I had no external voice, I still had gratitude. But it was a resigned gratitude. One with plenty of I-couldas, I-wouldas, and I shouldas.

Coming back into consciousness, hearing the same high-pitched, rhythmic beeping from the heart-monitoring machine, I knew I had been there for a very long time. I felt like I wasn’t getting any better. Every day was just like the last. Groundhog Day.  I felt like, maybe, I would be in the hospital forever in that state. Even if I hadn’t died I felt like a ghost. To be seen but not to see. To be touched but not to touch. A fly on the wall of a busy hospital with ears instead of eyes. A vegetable frozen in time, with tubes and wires coming out of everywhere.

Then just like that, like some kind of reverse “Benjamin Button” disease, I was blasted back into reality, back to my 40-year-old body. I had aches and pains all over, shed a lot of tears, but, damn, it felt good to sit up on my own, to just breathe again. It had been 23 days, with 16 of them in the ICU. I would spend the next 11 days relearning everything. How to walk. How old my daughter was. How to use my phone. But I was back.

Today (April 12, 2023) marks the 100th day of leaving the hospital. Though I’ve been back probably half a dozen times since, they have all been for check-ups, bone density scans, MRI’s, physical therapy, and all ending with my favorite part—going home.

I am not sure what the point of this post is. I guess it’s for you to envision yourself where I was. A dead man with no future, with the woulda, coulda, shouldas. To put yourself there and see if you would change anything when you were granted your wish. To realize that most everything that stresses you out right now probably doesn’t even matter.

You’re alive, you’re breathing, and growing older is a privilege. Don’t waste it with your head down.

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Tabitha Orth 300x218 - You’re alive, you’re breathing, and growing older is a privilegeOn June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

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 Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Be a part of the solution by supporting IAES with a donation today.

 

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Your Potential Self is Infinite

Your Potential Self is Infinite

May 31, 2023 | By Lisa Lauter. Reposted with permission from Lisa Lauter Journey to Health

A message from IAES Blog Staff:

The entire staff at IAES is very excited to share with all of you a blog published by one of our own members from her own website.

This is an anniversary blog of sorts. Almost 4 years ago to the day IAES published the first blog about Lisa that includes a video clip regarding her AE(LGI1) diagnosis and journey.

Four fast and eventful years have passed. Lisa is doing well along her AE journey, has had her share of ups and downs, has moved, has an active website and has written a book published that is soon to launch. Please feel free to follow Lisa, read her blogs and celebrate her book launch @ https://www.lisalauter.com/

———

Life is Marked by Journeys

What started as a journey north from Texas to hunker down during the pandemic in a little mountain town in British Columbia, evolved into a permanent move back to Canada and the realization of a dream to build our forever home on the edge of a lake, surrounded by mountains. I have to keep pinching myself to believe that’s it’s real, but I wouldn’t be here without supportive friends and family.

The Shady Ladies

I have a group chat with a circle of women who are some of my closest friends. We call ourselves the Shady Ladies – sounds a lot more dodgy than it is. We support each other daily by giving random advice on everything from politics, to fashion, to children, to aging parents, to what the heck should I make for dinner. They are my tribe and they got me through some really dark days. When helping me decide what to write today, one of them said write about “how to cope with multiple projects without losing your mind!” (There may have been a well placed expletive in that sentence). I immediately chirped back, “great idea, but you’re assuming I haven’t lost mine yet!”. Another one said, use a couple of inspirational quotes – the kind you get on tea bags! Hence, today’s blog.

Pace Yourself

If you’ve been following me for a few months, you know that I had a setback recently that threw me for a loop, bringing back symptoms of numbness, tingling and gait changes, and slowing down my cognitive function. It reminded me of the importance of listening to my body and giving it what it needs (sleep, good nutrition, positive mindset, exercise), and learning that sometimes, something’s gotta give.

But here we are! Almost at the finish line and about to move into our new home. The busy-ness isn’t over yet. We still have to move out of the rental we’ve been in for three years, and unpack a truck load worth of stuff and memories that have been in storage all this time. (Pace yourself, Lisa, make space for the daily walks and meditation, eat well and rest.)

Taking Chances

Sometimes you have to take chances to realize dreams. Like my journey to health, we put one step in front of the other, made a ton of lists, and day-by-day checked things off. Sometimes I don’t know how I did it. My camera reel is full of screen shot reminders and my desk and kitchen are plastered with sticky notes and endless lists. Sure, we make mistakes along the way and it’s not always easy, but we try to laugh and remember the big picture. It may sound cliché, but don’t sweat the small stuff. Keep your eye on the prize and have another cup of tea (herbal of course). You never know where you might end up.

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Your generous Donations allow IAES to continue our important work and save lives! 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Be a part of the solution by supporting IAES with a donation today.

 

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Why are brain injuries so misunderstood?

Why are brain injuries so misunderstood?

May 24, 2023 | By Emerson Jane Browne. Reposted with permission from Dancing Upside Down

A message from IAES Blog Staff:

The staff at IAES is excited to bring to you a blog from author Emerson Jane Browne.

Emerson, a traumatic brain injury (TBI) survivor herself, wrote this very insightful blog about a subject we have all wondered about and tried to understand. Why are brain injuries so complex and misunderstood? We hope you enjoy her insight and thoughts as much as we have.

To find out more about Emerson please visit her website ‘Dancing Upside Down’ at https://www.dancingupsidedown.com/.

——

Why are brain injuries so misunderstood?

We’ve all heard it. “What the heck? You look fine to me!”

Or “It’s been months! Get over this brain injury stuff! Move on already!”

#1  Blame it on Hollywood!

Movies and television have spread so much misinformation about brain injuries it is practically criminal!!

Hollywood has convinced people that if you have a brain injury you have to look it! You have to drag one foot, or have speech problems, or in some manner “look” disabled.

Nothing could be further from the truth! The majority of brain injuries are not visible at all.  You try to express how much you are struggling and the response is “You look great!”

And that is the second reason:

#2 You do look great! You look normal.

People are used to thinking of injury in terms of a broken bone. Subconsciously they are looking for the cast, the bandage . . . the visual evidence of your injury. And you don’t have it so their brains draw the conclusion that you must not be injured.

The interesting thing about this, is it is an automatic processing in their own brain and they are not even aware of it.

For example, we learn very early in our life to equate a glowing red burner or flame on a stove as “Hot”. We learn it so well that it becomes automatic. Each time you see a stove you do not laboriously have to think through or reason out that a glowing burner means hot.

The exact same thing is going on in people’s heads in relation to equating injury with visual cues. Their brains have learned to equate the lack of obvious signs of injury with “non-injured”.

And that leads right into the third reason that brain injuries are so misunderstood:

#3 Brains control everything about us!

Until a person’s brain is injured, we do not realize how much we took our brain for granted.

All the little automatic things – from knowing how to add two numbers to knowing what a paintbrush is for or how to read, or when you get to the store remembering to look at a grocery list you just made  . . . All the even more important things like who we are, our own sense of identity, the “me” that you have always counted on from the inside . . . all of that is automatic … until it no longer is.

It is dreadfully hard to explain that to someone who has not experienced it because they really don’t get that our brains are essentially us.

Since you still look like you and sound like you, it is extremely hard for another person to grasp how deeply you feel and know you are no longer the you that you were.

And it is even more difficult for someone to grasp how big of a deal that is, and how lost you feel. If you aren’t you on the inside then who are you? And are you always going to be like this? Are you ever going to get you back?

And that brings us to the fourth reason brain injuries are so misunderstood:

#4 Brains take a very long time to heal and remap!

We are used to the healing we have seen all our life – the cut that heals in a week, the broken bone that heals in six, the bad sprain that heals in ten. Heck, after open-heart surgery most people are able to return to work in about eight weeks!

But think about your brain. It took years to develop! That is what the majority of childhood and young adulthood is about – developing the brain. Then, if you are an adult, you have had even more years of refining your neural network.

The brain is a very complex neural network of connections. The brain strengthens and speeds up the neural pathways we use the most. A brain injury disturbs those delicate intricate pathways and connections.

Healing and regrowing of neurons is slow.

Sadly nerve tissue is some of the slowest growing tissue in our body – likely because of how complex it is. Then, in addition, remapping all the intricate connections takes an even longer time.

So how can I get people to understand my brain injury?

Show them this article.

I am not saying that because I authored this article. It is the reverse. I authored the article specifically so you can show it to friends and family.

Show them the High IQ TBI article – there is a lot of information in there no matter what someone’s IQ.

Communicate

Talk to the people you need to educate. And understand that you do not need to educate everyone. Energy is limited when you have a brain injury. Choose the people who you need to have understand what you are going through.

And choose people who want to understand. You will find that those are the people who really care about you.

Use the term “brain holes”.

I find using the term “brain holes” works well. Yes, it is not a medical term. But naming a problem a “brain hole” is creates a visual image which makes it easier for people to understand.

Use Before and After Examples

Do your best to use examples of how things used to work/feel in comparison to how they now work/feel. Again, using descriptions that people can relate to helps a lot.

For instance, I used the analogy of going from a sleek car with a smooth automatic transmission to suddenly finding myself in a clunker with a standard transmission with a clutch that keeps slipping.

Some Never Will. Let them Go.

I wish I did not have to say that!

But sadly, letting go of friends and even family is one of the biggest heartbreaks of having a TBI.

Some people will not want to try to understand. They are adamant in their beliefs and opinions that you are “faking it to get attention”; that “you need to just get over it”; that you are “not really injured” because you “look fine”. Some people will get tired of trying to understand. They will get impatient with the process. Most people cannot truly grasp or understand how extremely slow and incremental brain healing and remapping is.

They may have supported you and been understanding for a while but somewhere along the line they paste a label on you. And they may never bother to come back around to see if anything changed.

Lastly: Blog

Yes, I am serious. Just do a real simple one. Ask a friend to help you set it up. It is dead-easy on WordPress.com or Google Blogger. (Use a pen name or just your initials because it will free you up to not worry about what you say or any perfection issues. Plus, no one will find it if they google your name.)

Write. Just write. Just write what is going on for you.

Writing will help YOU get a grasp on what is going on, which will then make it easier for you to explain it to others. Writing will also help you be more compassionate with yourself. Interestingly, as you become more compassionate with yourself, others will become more compassionate with you too!

Plus, for those who are truly trying to understand and be supportive, sometimes reading what you have written is the best way to help them grasp what it is like for you on the inside.

Question: What problems are you having being understood? What is working to help others understand?

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Your generous Donations allow IAES to continue our important work and save lives! 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Be a part of the solution by supporting IAES with a donation today.

 

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Friendships After A Brain Injury

Friendships After A Brain Injury

April 12, 2023 | By Emerson Jane Browne. Reposted with permission from Dancing Upside Down

A message from IAES Blog Staff:

The staff at IAES is excited to bring to you a blog from author Emerson Jane Browne.

Emerson, a traumatic brain injury (TBI) survivor herself, wrote this very insightful blog about a subject we have all encountered. Along our own autoimmune encephalitis journeys, as we have changed, so have our friendships. We hope you enjoy her insight and thoughts as much as we have.

To find out more about Emerson please visit her website ‘Dancing Upside Down’ at https://www.dancingupsidedown.com/.

——

 

The 4 Categories of Friendships

Essentially friends of most brain injury survivors fall into four categories with a small amount of overlap:

  1. Friends who knew you before your brain injury;
  2. Close friends who are seeing you through the brain injury and recovery;
  3. Friends who met you or got to know you during the brain injury and recovery;
  4. Friends who are getting to know you after the brain injury and recovery.

NOTE: Though I will use the word “Friends” and “Friend” throughout this article you can add in the word “Family Members” because family members will and do fall into the same categories discussed here.

Before Brain Injury Friendships

Before Friends are the ones who knew us at work, through our hobbies, in our neighborhood, at our place of worship, etc.

They knew you as a capable, clear thinker. They knew you as a friend who was fun to be around. They knew you as someone who could get things done.

And especially they knew you as a friend who was like them.

“Like Me” Before Friendships

Many of the Before Friends just cannot handle the changes they see in you from the brain injury. Some friends split fast. Others try to hang on but end up drifting away.

Who are those people? Yes they really were your friends, but the basis of the friendship was that you were similar to each other – the like them factor.

We are different now. It is not that these people wish us ill. It is that we are no longer like them so the like them bond is broken.

“True” Before Friendships

And then there are the Before Friends who stick around. They hang with you through thick and thin. Your friendship becomes deeper and richer.

These “true friends” live the adage of “That which doesn’t kill a friendship makes it stronger”.

They will be some of your best supporters over the long haul because they can remind you of who you were and cheer you on (and razz you) to get back there.

Sometimes those “true friends” are the ones who have known you the longest. But often it is surprising who turns out to be one of the caring friends who sticks with you.

Through Brain Injury & Recovery Friendships

The key thing that makes someone a Through Friend is that they are with you; physically with you, seeing you often. Or they are at least on the phone or Skype with you very frequently.

They have to be close enough that they are able to experience and notice the small improvements; to watch you change over time.

“Through friends” may be family. They may be people who knew you pre brain injury. Or they may be people you have met since the brain injury.

These friends and family are close enough to see you grow into your “new self”. They adjust to the incremental changes along with you. They know and understand when you are able to take on new responsibilities.

This is a critical distinction from the During group below. The During Friends know you during the same period as the Through Friends but they are not close enough to really be able to grock the brain injury healing process.

During Brain Injury & Recovery Friendships

During Friends are ones who did not know you pre-brain injury, or at least did not know you well. They get to know you while you are injured and in the recovery period.

The key thing about this group is they are not close enough to you to understand much about your brain injury (or brain injuries in general) in the first place. And they are not close enough to see and realize the changes that are occurring as you heal and recover.

During friends become friends with you thinking “this is the way she/he is”. 

I think the like them factor crops up again in the During Friend category. The basis of the friendship is, once again, that there are interests you share in common, or community – like a place of worship or club. They are friends that you see socially. Friends that you may work with in your recovery period.

During Friends can also be attracted to your disability. They can be people who like helping other people. They can be people who feel good about being “more together” than you. You can explain to the brain injury to your During Friends. You can comment about it frequently. But they just will not get it on the level that the Through Friends do. They cannot fully understand that you were very different before the brain injury or that you are incrementally becoming a new you.

After Brain Injury & Recovery Friendships

Brain injury recover is a very slow process. The healing changes are small but cumulative. They build on each other. Recovery takes years! But it happens. The more you stretch and grow, the more your brain remaps.

The “After Recovery Friends” are friends who get to know you after you are well into your recovery. They know you as you are now; the new you.

Friendships at Risk after Brain Injury Recovery

So which of the above friendships is most at risk as you become a new, capable you? As you regain the skill and talent you had pre-injury?

The During Friends!

They became friends with you thinking “this is the way she/he is”.  They are not close enough to you to see and celebrate the small changes. And they did not know you pre-accident!

Your changing upsets the balance with During Friends. 

Think of a mobile hanging in perfect balance. If you change one item on a mobile all the pieces move and jerk around until a new balance is restored.

The balance in your friendships with your during friends is similar to a mobile. If you change and become someone different from who your during friends expect then you to be upset the whole balance that they have come to count on! People do not like their balance upset so they try to push you back into “your place” in the friendship mobile.

I don’t think they mean to try to keep you small or injured. They just never knew you pre-injury so did not know you could change as much as you have!

And I also do not think that having them be naysayers is necessarily the end of the friendship. But I do think that the friendship will either adjust over time or end.

You cannot play small to please them.

My experience of Before & Through Friendships

In my case the Before Friend category is especially marked because I moved to a different state soon after I had the “main event” brain injury.

Most of my adult, professional life was spent in the Denver/Boulder area of Colorado. I moved to Seattle and suffered an additional brain injury a week after arriving. Though I have stayed in touch with friends from Colorado, they were not in a place to move into the Through Friends category.

Since returning to Washington, I have been graced with developing a few very close friendships and reconnecting with an old friend and deepening our friendship. Plus, recovering from the brain injury has also strengthened my relationship with my two sisters.

These people are my Through Friends. They have seen me through all the years of recovery. They totally get how much I have healed and how much I am back to full-force capability.

It is the reaction of other friends – my During Friends – that caused me to write this article.

New Job and Friends’ Reactions

I recently was hired into an interim position at an executive level. I am very capable of doing the job and extremely excited about it, even though it is only interim.

My Through Friends are rejoicing with me and cheering me on. They know I am ready to make this step.

My Before Friends are happy for me too. Since I moved right after my brain injury, most of my pre-injury friends never knew how bad off my brain was. They knew I could not work for a while, but for me to be hired at an executive level seems normal to them. I was working at that level in Colorado too.

My During Friends are people who I consider good friends. Most of them are social friends I see often. I thought they understood how how hard I have been working at recovery. I thought they would be supportive and excited about my new position.

But that isn’t the case. It is not that they do not wish me well. I think they do.

But their reaction to my new job is more like a “You’ve got to be kidding me” shock response and a “Who do you think you are!?!” look or maybe the look is even “You can’t do that! Why on earth did they hire you?”  I also think some of them do not believe it is a real job.

In hindsight, I understand.

Since they did not know me pre-injury, I don’t think they understood how injured I was when they met me. Therefore, they did not look for, nor see the changes that were occurring as I healed. And since they had no idea what I had been like pre-injury, they had no idea who I was working to reclaim.

I told them what was going on for and with me. I thought they had understood. Now I realize that they thought it was ridiculous that I did not have a “regular job” for so long. They totally did not get what I was working on (both healing wise and work wise). I do not feel I have to entirely give up on my During Friends. They are good friends who I enjoy socially. However, I do feel I need to “encapsulate” them.

It is not important to me that they someday see me in a different light. But it is important that their wishing to put me back into a small box is unsuccessful in how I view myself and how I operate in the world. I cannot play small to please them.

Read more from Emerson Jane Browne on her website: https://www.dancingupsidedown.com/

friendship brain injury 500x333 - Friendships After A Brain Injury

Thanks to Nazka @ morguefile.com for the generous sharing of your photos

 

Your generous Donations allow IAES to continue our important work and save lives! 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Friendships After A Brain Injury

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Friendships After A Brain Injury 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

Daisy the Amazing Rough Rider: Part 6

Daisy the Amazing Rough Rider: Part 6

March 22, 2023 | By Shadazah (Daisy) Brown

The staff at IAES is excited to present the sixth in the blog series by a mighty AE Warrior in her ongoing quest to get all of herself back! Previous posts in Daisy’s journey are linked below:

Part 1: https://autoimmune-encephalitis.org/post/?highlight=Shadazah%20Brown%20

Part 2: https://autoimmune-encephalitis.org/my-continued-story-about-having-autoimmune-encephalitis-2/?highlight=Shadazah%20Brown%20

Part 3: https://autoimmune-encephalitis.org/daisys-ongoing-journey/

Part 4: https://autoimmune-encephalitis.org/daring-daisy-part-4/?highlight=Shadazah%20Brown

Part 5: https://www.youtube.com/watch?v=yTqvt_CqYps

——–

I am here! I am still fighting every day, and I sometimes feel this Autoimmune Encephalitis(AE) road to recovery is one rough ride! I suppose on many days and in many ways, I could be called Rough Rider Daisy!

This past year has certainly had its share of ups in downs along the road of my AE journey. I have had several relapses that have proved difficult emotionally, mentally, and physically. But I continue to ride this road with positivity!

I have been in and out of hospitals due to seizure activity and AV fistula issues. My seizures are usually preempted by what many of us call an aura. Many AE Warriors can relate to this phenomenon. They can come about quickly or slowly. Sometimes I try to calm my brain and thoughts if I feel an aura but sometimes, they come so quickly, and the seizures come so quickly I have no time or warning. The bottom line with all of this is ongoing anxiety and fear. You never really know when an aura and then a seizure is coming so this can cause fear and anxiety. Somedays I find it difficult to eat, sleep or do simple acts of daily living because of the anxiety. At times I can remember what was happening prior to a seizure and I can remember an aura and sometimes I cannot, but they are all scary.

Many of you may remember the video blog I did for IAES about a year ago about my AV fistula and how helpful having one has been for me. Overall, the fistula has been a godsend and made medication management like getting plasmapheresis much easier. As with most things in life, nothing is perfect, and I have had fistula issues requiring surgery during this past year.

AE can be a rough ride at times. The road can have difficult mountains to climb and beautiful valleys to see. Once again, I will persist and ride this rough road. I will be positive and be Rough Rider Daisy!

Shadazah Brown VLOG 1 - Daisy the Amazing Rough Rider: Part 6

 

 

Your generous Donations allow IAES to continue our important work and save lives! 

guidestar platinum logo 300x300 1 e1605914935941 - Daisy the Amazing Rough Rider: Part 6

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Daisy the Amazing Rough Rider: Part 6

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Daisy the Amazing Rough Rider: Part 6 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

A Mother’s Wish for a Mighty Miracle’s 7th Birthday

A Mother’s Wish for a Mighty Miracle’s 7th Birthday


November 24, 2022 | By Janine Samuela-Carasus

Introduction from the IAES Blog Team:

As we wrap up caregiver awareness month and in the spirit of this season’s giving of thanks, the staff at IAES wish to share with you this beautiful story of hope and the true power of those that care for us the most. Each AE Warrior is here today because of those that care for and love us. We are thankful beyond words. We hope you find this story as inspirational as we have, and we truly hope you all have a wonderful Thanksgiving!

To read more of Zoe’s story and her family please enjoy the first blog in this AE journey: https://autoimmune-encephalitis.org/never-give-up-miracles-happen-every-day/

 

—–

My name Janine Samuela-Carasus. I am 29 years old and from the Philippines.

Five years ago, in the middle of August 2017, our toddler that was almost two years old was diagnosed with anti-NMDA receptor Encephalitis.

We were stuck in a pediatric ICU unit for three weeks with Zoe and then, literally, lived in the hospital for the longest two months of our lives. As you can imagine, hundreds of tests and procedures were done every single day to try and figure out what was happening to our precious little girl. Our hearts were broken by every single negative result. No one knew what was happening to our girl. She seemed to be getting sicker and sicker each day.

Bills began piling up. All we understood was that her condition continued to worsen each day until she was not responding anymore. But with all this negativity, there was never a moment, a day, or a week that I thought of giving in and giving up. Never did a second go by that we lost hope that things would get better.  With constant prayer, the help of the Lord, and the vigilance of our brilliant doctors, we kept hope alive.

Eventually, we were able to bring Zoe home although she was in a non-responsive vegetative state. We had no idea or any medical assurance that she would recover and regain her strength again and be the precious girl we knew and loved.

For me, it was a mix of emotions. I was happy we were finally home and terrified of what the future would bring all at the same time. I worried if I would be strong enough for Zoe and if I would be able to help her. I did know one thing for certain, even if it took her forever to recover, I would be there. I knew even if it meant sacrificing my own life and personal dreams, I would be there. And I did. Never did I leave her side, nor did I sleep away from her even for a night. I, religiously, made her blended food and fed her via a feeding tube for months. I took her to doctor’s appointments, therapy sessions, and every appointment that was necessary. I made sure Zoe was and felt loved every minute of every day and spoke to her all the time as if nothing was wrong.

All our prayers were answered. Zoe’s recovery was a long slow two-year road that we all traveled together. We watched her slowly improve, we cried with her when the therapy was hard until she got to the point to be able to face the world again! 

To date, our daughter is back to being her best self. Her gross motor and cognitive skills are significantly improved. She has been able to overcome her stranger anxiety and started attending formal school. We are very excited for her to spread her wings and begin to fly. She will be bringing with her the scars of a well-fought past showing how strong and resilient she is. Our family will be right by her side!

Our fight and Zoe’s fight do not end here. AE could happen anytime in her life again. It can happen to anyone. I will always be proud of our story of faith, strength, and love. We plan to always fight for AE awareness so everyone can get diagnosed quicker and not have to go thru all the pain we had as a result of this terrible disease.

Zoe turns seven years old this month. I want Zoe to read and understand our story, her story. Zoe may not be able to remember all aspects of her AE journey but thru this story, I hope she understands, in her heart, that we, as a family, are one. And we will conquer everything that comes our way!!  

 

JanineSamuellaZoepic2 375x500 - A Mother’s Wish for a Mighty Miracle’s 7th Birthday 

 

 

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Your generous Donations allow IAES to continue our important work and save lives! 

Tabitha Orth 300x218 - A Mother’s Wish for a Mighty Miracle’s 7th BirthdayOn June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

guidestar platinum logo 300x300 1 e1605914935941 - A Mother’s Wish for a Mighty Miracle’s 7th Birthday

 

 Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - A Mother’s Wish for a Mighty Miracle’s 7th Birthday

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - A Mother’s Wish for a Mighty Miracle’s 7th Birthday 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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