“Princesses, they’re just like us.”
My friend Christina once commented that on Facebook, under a picture of Princess Kate. You know, the most beautiful woman in the world. The one whose three children always look clean and like angels. The one who stepped out of the hospital in a slim fitting dress and heels the day after giving birth to her first child. I remember slowly walking out of the hospital in sweats, days after I had my first born, wondering if I’d ever be able to sit down again. Yeah, princesses, they’re just like us.
Follow me, this is a long one. But, an important one.
I try to be positive, uplifting, and inspirational. Don’t get me wrong, I mean what I say. But, there is a dark side of me. There is a lasting shadow of autoimmune encephalitis (AE). IT is a side I have refused to show. I have yet to write about IT.
There was a physical side to my illness. An unappreciated effect of AE. If you saw me from about September 2018 – May 2019, you saw that side. Appearances can be deceiving though. I was still me, buried beneath that swollen face and body. It was only my appearance, so big whoop right. And with time, it got better.
But, what you can’t see, is my invisible illness. A brain illness. And what you don’t know, is how taxing it’s all been on my mind and spirit. AE and IT have hurt me daily for a long time now. I have ventured around IT, made jokes, covered IT up, and dismissed IT. But, no matter what I’ve done, IT has remained.
A certain chain of events led me to pen this. The culmination of a perfect storm. God’s intervention for me to finally speak out. But, what you need to understand about me is that I’m a tough nut to crack, and I’ve been that way as long as I can remember. I didn’t go about this lightly.
I have an illness that I’m still coming to terms with. And even though I’m bright and well educated, I have resources, I have the time, and I have the support, I’m just beginning to scratch the surface of AE and all it means. I am so far from radical acceptance. I am a long way away from true forgiveness. I’m angry. I’m a work in progress.
I’m stubborn. I’m tired of being patient. I feel an incessant need to explain myself. Yet, I have an illness that most people have never heard of. I cannot truly explain it. And, most of humanity cannot relate to me.
I’m also a talkative person. But, for some reason, probably a deep seated desire to control, to conquer, and to seem invincible, I have refused to talk about IT.
I’m exhausted with my health. I can feel others around me who are also exhausted by me too. Some have even told me. Some just ignore me, then they don’t have to deal with their own fears about loss, grief, illness, and mortality. Some probably don’t even care about me or my illness. I have felt alone grappling with the exhaustion and my losses.
I can talk about AE and answer any question you may ask me, until I’m in what I feel like is a clinical setting. Then, any talk of AE leads me to a complete breakdown. When it’s clinical, it’s not a story about AE, it’s a story about me. And in my clinical story, IT is there, and I have to talk about IT.
But, I’m talking about IT now. Here’s how the events unfolded:
Very often, I perform mental gymnastics. I went to the psychiatric ward. My kids visited me in multiple hospitals. I was very sick. I recovered. My entire body changed, a few times. Somedays I feel really ugly. I lost my job. I lost my business. I lost the career I dreamed about since I was 10. And with it, I lost my circle of people. I’m alone, because people have moved on with their busy lives. I’m jealous, mostly of my colleagues. I lost the chance to happily retire from a long and successful career. I found out I was pregnant with an unexpected miracle baby. I was scared, and I was happy. People close to me, abandoned me in my time of need. I have been betrayed. I have questioned people’s loyalty to me, because my situation changed. People have shied away from me and my different brain. I am often quizzed on my intellect. I have had my brain examined and tested in many ways. I’m living through a pandemic. My family doesn’t leave the house. I have a serious and rare brain illness that I need to accept. I have a new cool life. I’m working hard to rebuild. I beat the odds. I have a new circle of friends. Lots of people care. I have naysayers. I’ve been wronged. I’m finding new purpose. I’m excited. I’m so fortunate. I’m more mindful now. I’m bitter. I’m angry. I’m sad. I’m sick and tired of feeling sick and tired.
In the past few years, I have felt more conflict in my head and heart than I’d want anyone to feel in a lifetime. I never really talked about IT though.
I’ve had a lot of people tell me how to live my life. Tell me how to deal with my AE. Some people give me that advice when I haven’t asked for it.
I coped with IT, but, didn’t want to talk about IT.
I have literally written an entire book about the experience. I share that I was not mentally ill as it initially looked, but had AE. I open up about spending 48-hours in the psychiatric ward. But, it’s okay, because I wasn’t there for my mental health, it was a medical problem. I wrote about how my mom suffered from depression in her mid-30’s, and that’s why people thought I was depressed. I asked Mom if it was alright that I talked about her story. But, it was her story, and not mine. I wasn’t depressed.
I still didn’t talk about IT.
Months ago, a close friend called me. She underwent EMDR after witnessing a suicide. She talked to me about my illness, and was so supportive. I grasped that she was being very open about a scary part of her life, and she was nudging me to the light and to help. I appreciated her input and I truly love her.
I still didn’t talk about IT. But, the wheels started in motion. Slowly.
Right after she made that call to me, I realized that I was saying the same things, and telling the same hurt-filled and bitter stories, to two people close to me. They finally had to politely tell me I was too much for them. It hurt. It really did.
I made a pact with myself then and there, that I would take some action, so I was not “that person.” I couldn’t let my AE define me in terms of my mental health. I needed to find better ways to cope.
I took a massive step, but I didn’t admit to it. Not to anyone but my husband. Not even to my own mother, who is my confidant, and my best friends, for a long time.
I interviewed a psychiatrist on my Brain Fever podcast. Her son has AE. She opened up and talked about having to see a therapist for the trauma she endured. I felt a quiet stirring inside me. She is really cool, she is so smart, and she publicly admits to this. It’s okay to discuss needing treatment for your mental health, no matter who you are.
SHE IS A PSYCHIATRIST. SHE WENT TO MEDICAL SCHOOL AT YALE. SHE ADMITS TO HAVING A THERAPIST. But, I was still different. I was more private. I still didn’t talk about IT.
I’ve just been waiting for the question in the speeches I give. I even asked my husband whether I could avoid IT. But, I can’t, and I shouldn’t.
I decided I still wasn’t going to talk about IT. I wasn’t ready. I didn’t want to let my guard down and be vulnerable.
And then yesterday happened. I felt the tiniest glimpse of an AE support group. I signed up for an AE webinar, and I figured it was mostly benign. But, I was not ready for what was going to hit me. I saw others – in person – in the virtual flesh. I saw survivors, patients, and carers, few in number, but they were there. And a psychiatrist presented to us. He put the most complicated issues into fairly simplistic terms. He made sense to me. He talked a lot about AE and mental health, which I’ve had questions about for years.
He spoke of people initially being misdiagnosed with behavioral disorders and mood disorders. I was that person. He talked about after effects that AE survivors face. I have some of those, and I don’t like them. Some of them terrify me.
And, just as I concluded my webinar, with a lot of tough issues to sort through, something happened to me that hurt my feelings. It was small. Something I should have overcome. But, my feelings, my emotions, my AE baggage, and my isolation took over, and I became a mess. I had to get away. I had to get air and exercise, which is the only tried and true method for me to regain my footing (outside of writing).
I walked around my neighborhood for an hour, crying under my sunglasses. Neighbors drove by and waved. I returned big waves, just like I always muster up when I’m out for my crying walks. They can’t see my tears. They don’t know what I hide under the sunglasses. They don’t know the lyrics to the music I have running through my ears. They can’t see the pain. All they see is my “happy” wave and smile.
There is a public Jackie and there is a private Jackie. Public Jackie can keep it all up. Private Jackie hurts. She is dark. She is afraid. She feels alone. She feels forgotten. But, she doesn’t want to talk about IT.
Later that evening, I found out that it was World Mental Health Day. I was having a huge emotional breakdown on World Mental Health Day. Isn’t it ironic.
I still didn’t talk about IT.
And then I got to today. Yesterday’s World Mental Health Day was in my news briefs. There was a story about postpartum mothers. Mothers who need a little help too. I have a six month old baby, in a pandemic, after AE, and I wish I had more help. The overwhelmed with life Jackie. And then I saw it, the story that broke the proverbial camel’s back. Megan Markel opening up on a podcast about her year-old interview that was talked about more than her wedding dress. That time where she just wanted someone to ask her if she was okay. She discussed that when she said that, she felt like she was running a marathon. Her duties as a duchess and mother to an infant had her tired and worn down, and she showed the tiniest bit of humanness that day. She was talking about mental health yesterday. The emotional Jackie.
The darkness ceased, the clouds parted, and it hit me – yes, princesses, they’re just like us. They are busy, they have children, they are tired, they are working hard, and they talk about mental health. And most of all, they just want someone to ask how they’re doing.
And sometimes, so do I. Because, then maybe I’ll open up, and admit that I’m affected too. I’m working my darndest on my own mental health, after a monumental and traumatizing illness detonated my life, and I have needed help. I still need some help. I’m finally going to start talking about IT.
Me: Hi my name is Jackie.
Group: Hi Jackie.
Me: I live in Bismarck, I’m the mother of three, and I have autoimmune encephalitis. I almost died a while back. My disease is confusing and devastating. Somedays I’m really sad. Sometimes I’m really afraid. I’m happy a lot too. I think it’s time to admit to this group that I struggle with mental health.
Group: Gives me some big smiles, nod their heads, and say, Welcome to the group, Jackie. You are not alone. And it’s okay, you don’t need to keep up the charade anymore. You don’t have to try to be brave. Just be yourself and admit you’re human. Mental health is real and you’re no exception.
Me: Bursts into tears. It’s about damn time. Also, does anyone here see a psychologist, because I started a few months back, and wow, it really helps! She is really cool.
Be well my friends. Be brave. Be yourself. Take care of you. And, if you need a counselor, that’s okay. Go ahead and talk about it. Lots of people care, and lots of people will listen. And vulnerability, well, that’s actually “in,” right now. Check out Brené Brown. I promise you’ll love her! And, if you’re reading this, thanks for supporting me and loving me. I’ve needed it!
“Won’t you look down upon me, Jesus? You’ve got to help me make a stand You’ve just got to see me through another day My body’s aching and my time is at hand And I won't make it any other way
“Oh, I’ve seen fire and I’ve seen rain I’ve seen sunny days that I thought would never end I’ve seen lonely times when I could not find a friend But I always thought that I’d see you again” ~ Fire and Rain by James Taylor