I don’t have a lot of experience with meeting other AE patients and survivors. My cup of in-person exchanges runneth dry.
The first survivors I spoke to, were middle-aged men in Alaska and Minnesota. I was able to find their names and stories on some type of AE chatroom. I honestly don’t remember how I found it and it was good riddance when I quickly ditched it, because two people immediately began to troll me (not making that up).
I had posted on there looking for AE-lawyers, because at the time, it was important for me to find a specific someone whom I could connect with on that shared level (apparently the trolls didn’t like me looking only for AE-lawyers). My post led me to others who were aware of Will and Greg, so the weird experience was worth it.
In early 2019, I was able to speak to them via telephone and they were both kind and helpful. I wanted them to tell me I was going to be A-OK and that I could return to practice, but of course they couldn’t.
But they did offer me some hope. After all, I was speaking to them on the phone and they were working as lawyers. That had to be a promising recovery prospect. But I was still a mess at the time. I know I burst into tears speaking with Greg.
In the summer of 2021, I recognized and met a little boy, Jake, and his mom at the local park. I had previously connected with her on Facebook through a friend, because the little boy (who is fondly known around here as Jake the Great) has AE. I think he was five when I met him. Jake’s story was how I learned that children could also have AE, which was very upsetting.
In October 2021, I met and hugged my first adult, AE survivor, Justeen, in my yard (ugh, Covid). She found out about me through my high school classmate’s mom, as they worked together in a town not far away from where I grew up. It was so wonderful to feel that human connection and we took a picture together to document it.
In March 2022, I met Alison from Georgia, whom I had connected with through an AE group on social media. She’s an absolute joy of a person, with an incredible attitude towards surviving AE and its effects. We were able to spend the day together at the Florence Forth and it was amazing to share in each other’s lives.
And in June 2022, at my book signing in Grand Forks, I met a woman named Rachel, whose AE story has ties to Bismarck. It was such a pleasure to meet her and we also documented it with a photo.
In between those encounters, I’ve met many AE survivors and their family members from all around the globe, but for actual humans in the flesh, I had only met the little boy and the three women. Until the night of my Bismarck event.
It was after the event was over, and people were disbursing, forming a line for my book signing, and many were trying to give me a quick hug or hello, or grab me for a photo. I honestly don’t remember it happening until a small group was all around me. And there stood a woman, younger than me, quite close to me. In all the chaos, I only remember someone saying, “Jackie, she has what you have.”
Because I was entirely shocked, the first dumb thing to come out of my mouth was, “Ohhh, I guess I’ve met four women now.” It really took me a minute to collect myself.
It wasn’t because of the chaos. It wasn’t because she had AE. It was the way she stared at me. It was the lack of expression on her face. Her eyes said everything to me. I looked right at her and saw the void. Like everything that was previously fun and joyous, was lost somewhere deep inside of her.
Looking at her was like looking into my past. I saw me when I was lost inside of myself.
It was chilling.
It was like witnessing my husband and my mom rally around me, trying desperately to grab on to something, anything, to tell them I was going to be OK. Her people were my people. She had her Sean and Colleen right there with her.
I felt it. She needed it. They needed it. Some reassurance that there was life after what had unfolded for them. Some sort of hope.
When I finally gathered my wits and could focus, I gently placed my hands on each of her shoulders, and looked into her beautiful, but lost eyes, and told her, “It’s going to be alright.” I barely finished saying that, when she lept towards me, and gave me the tightest hug I’ve ever felt. As we embraced, I felt my heart knotting. I wanted to tell her a million things, yet that one small statement and one big hug, seemed to say it all between us.
I know there were more hugs with her family, and I did my best to give them my assurances and offers for help, but that’s all I really remember. In my memory, they are gone as quickly as they appeared around me. And I fall back into the chaos, completely stunned from what had just transpired.
For over a month now, I’ve gone back to those few moments over and over. Back to her eyes that proved to me just how much her body and mind had betrayed her, even though I knew next to nothing about her story. The way she stood in front of me. Our hug. The look I took at myself when AE held me as a prisoner. Why the interaction resurrected my terror, but also left me feeling hopeful and helpful.
I just keep thinking about her. And praying for her and her family.
I doubt I said and did all the right things in that little time we had together. But that hug alone made all of my AE, its aftermath, and my hard work in JM Stebbins and Unwillable, worth it.
No matter what I said or did that evening, just me being in that room, gave someone else hope.
And it told me everything I need to know about my new life.
My new meaning.
“So what if we don't look the same? We been going through the same thing Yeah, you are, you are My chosen, chosen family” ~ Chosen Family by Elton John and Rina Sawayama
* If you missed Chosen Family Pts I and II:
Click HERE for Pt I
Click HERE for Pt II