February 22, 2022 | AE Awareness Month Special Series
Introduction from the IAES Blog Team:
Welcome to Part II of the IAES Blog series for AE Awareness month 2022; Letters to Our Before AE Selves. We are privileged to present the following heartfelt letters written by AE patients (AE Warriors) and caregivers to themselves, or the loved one they care for.
The following compilation of letters expresses the thoughts and feelings we would write to our ‘Before Autoimmune Encephalitis’ selves. They express what we would want ourselves to know, or our loved ones to know, if we could have been given a foreshadowing of how our lives would be pivoted on its axis due to autoimmune encephalitis.
Some letters are from our loved ones to us, and some are from us to ourselves. Long or short, happy or sad, all are heartfelt and are sure to lift your spirits. We hope you thoroughly enjoy Part II of this two-part series.
The first letter we share is from IAES member and AE Warrior Angie Fitch to herself:
You are so blessed! Get out there and walk your dogs more because there may come a day you might not be able to. Enjoy time with your friends, meeting new people and going outside because a day may come that you are barely able to get off the couch and become isolated. Take pride in being able to multitask, even if that only means being able to walk and do something else at the same time. Go for that run because one day you may give anything to be able to do it, so do it!
Don’t take for granted the ability to speak the words you intend to say because one day those words could leave your mind. Talk about and cherish memories because one day they may not exist anymore. Enjoy the sounds of the world around you as one day those very sounds may cause you extreme pain and anxiety.
Don’t ever take for granted driving a car, cooking dinner, swinging a golf club, having a conversation, going to the grocery store, walking, talking, breathing, or sleeping because these things are not a given for everyone. Things come easily for you, and you learn fast. You’re a hard worker, very active, social, and fun. Cherish these qualities as everything can change in a moment and the ‘simple’ things you take for granted today, may be gone tomorrow.
Finally, never lose hope no matter what life throws at you. Make sure to count your blessings every day, even when the world comes crashing down on you. Always count your blessings; because there are so many, and those blessings are what will help you to never lose your strength, hope and happiness. No matter what life takes from you, it can’t take that.
The second letter is from Kimberly Sorin to her grandson Colban Sorin:
You came to live with me a confused and sad little boy. Eventually you became vibrant, funny, and always smiling and laughing. Over the years, as you get older, many things will happen that will shape you into the man you’re to become. There may be days when you feel like there’s no reason to smile. There may be lots of tears and anger, moments may be forgotten. These things may come back to you but in a different manner. Don’t lose your sense of self, keep fighting…and know that I will always be right there by your side.
Always, love you to the moon and back,
The third letter is from IAES member and AE Warrior Ryann Henn to herself:
Things right now are going okay, but there will be answers to questions you had about yourself and the way you have been acting and feeling. You need to know there are so many people out there that care and love you more than you ever will know and expect. Everything will be okay. I know you are scared about the future, but the people that love you are here to guide you. They will never leave your side. You will feel love like you never have before, and it will inspire you to work hard in recovering. Don’t lose touch with yourself and what you are most compassionate about, animals, people, and creativity. And take it easy on yourself, it’s okay to take a nap.
With lots of love, Ryann
The fourth letter is from IAES member, IAES Chief-Resilience Officer and AE Warrior Tessa McKenzie to herself:
First, let me assure you, you’re not crazy. God is with you and you will feel okay again.
You are the 1 in 100,000 in this “boot camp for the soul” called autoimmune encephalitis.
Doctors can’t diagnose you right now and loved ones don’t recognize you, but your brain is inflamed and it’s not your fault.
There is a lot that doesn’t make sense right now. When your soul is weary, and God is nowhere to be found, know he’s still there and keeps his promises. When prescribed medications don’t work, know the right ones will eventually provide respite to your exhausted body.
Your life will go on past this experience – the sleepless 60 days, disorientation, panic, visual impairment, tachycardia, and memory loss…
And one day, you won’t view this as much of a curse as a unique gift to pay forward in empathy for those you feel alone, suffer, and are misunderstood.
Above all, remember, “all things come together for the good of those who love God (Romans 8:28).”
The final letter is from IAES member, AE Warrior and blog editor Jeri Gore to herself:
Wow! Where do I even begin? Sometimes I feel like I want to write you a very long letter and sometimes it is short and sweet. I suppose today it falls somewhere in between.
First of all, Jer, you always like things black and white. You like the lines of life to be clear, precise, and not muddled. Well, Chica, if nothing else, the next few years will show you that this beautiful life you live is anything but black and white and the lines are muddled in a wonderful array of color and emotion. You may think that happenings in your past were tough or trying but, in all actuality, they set you up for what has become the most amazing journey you have taken to date. You will see confusion on the faces of your loved ones, you will feel pain and sadness in their eyes, and you will want with all your heart to take it from them and carry it yourself. You will learn the meaning of love like you have never known it to exist. You will see your life and the lives of others transformed by an illness so new to so many. Above all, Jer, you will know the meaning of the word grateful on many levels. You will be grateful for your past and your present because it has brought you to this place and to these people that have become a family of Warriors like you never knew existed.
Love always, Jeri
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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. 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.