In celebration of AE Awareness Month, we are pleased to bring you a two-part IAES Blog series of letters written by AE patients (AE Warriors) and caregivers.
The following compilation of letters expresses the thoughts and feeling we would write to our ‘Before Autoimmune Encephalitis’ selves. They express what we would want ourselves to know, or our loved ones or caregivers 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 1 of this two-part series.
The first letter is from IAES member & AE Warrior Kerry Jones to himself:
You’re about to begin a journey that you’d rather not take. It will be rough, it will be challenging, and it will change you forever. But count your blessings, you’re going to be one of the lucky ones. Many of your memories will be gone, but that will open the door for new memories. You will reconnect with your estranged son and become a grandfather to his son. And all the bonds of love in your family will be strengthened. But most of all, learn to cherish every moment and take nothing for granted. Love and share your newfound strength with those less fortunate than you.
The second letter is from IAES President and Founder Tabitha Orth to herself:
You Have Entered: The Twilight Zone
It was December 2013, when I was re-arranging my sock drawer, that I came upon a sealed envelope with the words “Read Me. From Me. February 2022” written on it. The envelop appeared to be crisp and new as if it had just been placed there.
This is strange, I thought. That is my handwriting, but I don’t remember writing this. What the heck is going on? I thought, as I lifted it up with a shaky hand. I looked around the room, as if for answers, and felt like I was in the twilight zone. I could even imagine hearing the music from the TV series. I sat down on the edge of my bed and carefully opened the letter.
Hi. It’s Me.
I know. This is weird. Don’t freak out. I recognize my own writing. Yes. Take a deep breath.
I don’t have much time. Time, now there’s a story. Bottom line, it’s not linear.
I’ve been given a chance to punch through time to leave this for Me in 2013. Look, I need to tell Me something. I’m sorry I must tell Me this, but I need to know it NOW. It will help. At this point in my life, I think I’ve navigated the hardest challenges that life has offered. I’ve had much bigger long-term life challenges than the average person and I think the hardest part is over. I’m really sorry. The hardest part is yet to come.
Now, I know hearing this from future Me is shocking, but I’m going to go through a frightfully horrific period in my life. It can’t be stopped. The wheels are already in motion. I’m sorry. Trust this is real and that it is true. You will know it is true in the not-too-distant future.
What I want you to know is that I get through it. It is now 8 years in the future, and I survived. Not only that. I thrived. My eyes are wide open to what is most important in my life. I’ve learned that I can love deeper, give more of myself, appreciate all the little things I took for granted that each day brought. The garden, the seasons, being kind to strangers, going out of my way to do or say something kind. Appreciating life. Enjoying every moment of life. I came through a very difficult and scary time and overcame adversity. Jim and Matthew are thriving and happy. Life is good. It’s better than good. Hold this knowledge in your heart beginning right now.
Now, put this back under the socks. I will find it again several years from today. I would have forgotten about it when I find it again, but I will remember its message when I recognize what it is. I’ll have some memory problems when I find it again, but I’m great. No worries. I’m ok.
After all these years, I can’t explain this magic. I have continued to be baffled by it. I can only think that miracles happen. Magic is real. Magic is the power of love. Through love anything is possible. That’s all I’ve been able to work out so far. Maybe time will tell more.
The third letter is from IAES member & AE Warrior Laura Melcher to herself:
Life isn’t easy, you work and look after your kids and do it without help from anyone. Enjoy this life you have now, because after Autoimmune Encephalitis, everything changes. This life is everything you wanted. You and the kids have everything you need. You are fit, healthy and able to provide.
One day you won’t be able to go back to that job you go to every day, and you will miss it SO MUCH.
Everything you took for granted will be hard. How do you pay the bills alone when you are medically unable to work? You can stand for 9 hours a day now, THAT is a blessing when you can’t stand more than 10 minutes. When everything you took for granted is hard, walking, standing, household chores, reading an email, taking a phone call, being a Mum, showering, just existing.
You think life is hard now, NOW you are blessed.
Enjoy it while you can.
Kind regards, Laura
The fourth Letter is from IAES member & AE Warrior Celia Fermon to herself:
To my old me,
I want to tell you that sometimes the road in life gets difficult. It can be exhausting. You have learned by now that you have the capacity to go thru all the journeys. You will find that in the worst moments you will always have an angel by your side. Do not be afraid. You will, also, receive a little angel that has four furry paws that will always be watching you and taking care of you. Do not worry for you will learn that in your weakness is your strength.
The Fifth letter is from IAES member and AE Warrior Sharon Bassell to herself:
It’s me! The YOU before AE.
It’s been nearly 7 years since that vile antibody entered your system and gave you AE.
I’ve watched you stumble around in the dark for so many years looking for answers, cures, and hope….and where was l?
I wish, I wish I could have talked to you before it all happened.
I may have been able to save you so many tears, anger, confusion and maybe made acceptance and progress happen sooner!
BUT! Better late than never!
I’m here now, and here is what I wished you’d known before.
* NOBODY could have predicted whether you would have ever been cured.
* NOBODY could ever have predicted how much progress you would have made.
You have an aggressive, angry, strong, resilient antibody – I bet nobody told you
* Your life will never be the same again, or even anything resembling it – I bet
nobody told you that!
* Remember that career in Nursing, that was the very core of your being?
The role that you were born to do.
The thing that you dedicated 44 years of your life.
Well! It’ll ALL be gone in ONE DAY!
The day you were diagnosed with AE!
* You’ll never be able to drive a car again, your clean license of 42 years- another
thing that’ll be gone at a stroke of a pen!
You had the right to know that things were going to get a lot worse before they got better….
You needed to know about neurofatigue, flooding, visual deficits, memory loss
(Both short- and long-term memory).
Loss of certain “Life Skills “……remember how good you were with all things before IT?
Well, not anymore!
I should have told you about the personality changes, mood swings, impulsivity,
the tears, lack of sleep, multitasking difficulties, and problems with processing.
I’m not painting a very pretty picture here I know, but, I believe, knowledge is power!!!
I wish you had even a third of this information before AE got its grip on you!
Your recovery and acceptance would have been so much smoother and quicker.
I know that your medical specialists will focus on many different types of drugs, but they didn’t tell you that you will likely have to reschedule the rest of your life around the administration of these medications, just to keep you from relapsing!
Whilst the right specialist and medication treatment is pivotal, I bet they didn’t tell you that you needed to get into a Brain Injury Rehabilitation Program as soon as possible, did they?
BRAIN INJURY REHABILITATION is what will turn your life around! I wish, I wish I could have told you way back then.
These professionals will focus on YOU as an individual, they’re experts, they’re educators, they’re facilitators, they’re game changers!!!
I also wanted to tell you to link up with a support group like the IAES, you need to make your life easier, and learn from people who’ve “been there “……..
I see you now, and I’m so sorry that your treating doctors didn’t look “outside the box “and suggest adjunct services. Hopefully, this Awareness Project will enlighten many healthcare professionals to have the discussion in the beginning!
I see you know, you’ve done so well, I’m proud of you. You’ve managed without me……but how I wish I could have written this letter to you …. myself “Before AE”
I love you
The sixth letter is from IAES member, IAES staff member and mighty AE Warrior Mari Wagner Davis to herself:
You don’t know this yet, but you are going to find out in the next 5 years what you are truly made of. There will be times when you want to give up, give in, lay down. There will be times where you will be tested, when you will cry, tell your husband to let you go, but you may already know this, there happens to be a lot of fight and feisty ignorance in you. You will use what you have practiced as a nurse for the last 30 years and complain about every small thing that you find “wrong”. What you will later learn is that a part of it is your brain injury, as well as your anger that this disease has brought and that your injured brain will just not let go of. And no, you are not always wrong, sometimes, they are not practicing up to your standard, you will just have to learn to live with that. What you will also later learn is that life is too short and that there is almost always something to find good in most situations and people. (oh, there may be exceptions) but for the most part you will see the good. You missed seeing that in the past, but you won’t after Autoimmune Encephalitis
You, also, do not yet know that perhaps you learned all those case management skills and ways of finding resources not only to help yourself, but to help others. You will find amazing people at the International Autoimmune Encephalitis Society. You may grieve the loss of your job and for a time a sense of purpose, but they will give you purpose that your life will lack and make the most of your skills. You will end up helping people who need it more than you ever thought someone could need.
You already know this, but you have a great husband, but you will find out what some people never get to learn, that there is a love so deep that someone will take hours of their time to walk you through something that would have taken you 5 minutes in the past. You always knew Geoff was a great man, but you will learn that there is a depth to that strength that you in the past, deep down, you knew was there, but did not see on a day-to-day basis. You will see it now daily. You knew you were glad that day when you first met him, you just did not know how important it would be to you. No, you never would have asked for this disease, who in their right mind would, but you will find that as you improve ( I hate to tell you this but it will take longer than they tell you) you find a strength you did not know you had, a sense of humor that can get you through many things and an ability to learn new ways to do things to help you be more functional. Good God I hope my next letter to myself has more to tell you about how much further you have come. You will just have to wait and see won’t you.