This evening, we had a “date night,” which just means we got ready for bed early and cuddled up to watch a movie. We really needed some time to relax and be together. We hadn’t done something like that in a really long time!
We watched “How to Train Your Dragon” which I had never seen before. It was really fun! Laying in bed watching an animated movie with my husband probably doesn’t sound like much of an accomplishment. It didn’t seem like that big of a deal to me either, but when I thought about it more I realized that it really was.
Three years ago, I couldn’t have enjoyed a movie like “How to Train Your Dragon.” Not only was I too sound and light sensitive to handle most movies, I was also too emotionally vulnerable. You see, I suffered from severe neuropsychiatric symptoms.
I haven’t written much about these neuropsychiatric symptoms because it’s something that’s still very painful for me to think about. It was hands down the worst part of my sickness.
The illness really harmed my brain and I very nearly lost my mind. I would often scream for hours, hidden away in the closet not even knowing what I was afraid of. I was reduced to the emotional maturity of a three-year-old. At 21, I found solace in hugging and talking to my stuffed animals.
I couldn’t handle grown-up conversation without falling apart. Death and loss. War and violence. Lying and betrayal. Disappointment and heartbreak. All of it was utterly overwhelming.
It didn’t matter if it was about someone I didn’t know. It didn’t matter if it was completely fictional or theoretical. It’s was soul crushing. I would just shut down. It was akin to having all your skin torn off. Even the lightest touch must be excruciating if you’re all pink and raw. I’ve never felt so vulnerable in my life.
People would say things that a normal person might find mildly hurtful and the words would cut right into the deepest part of my heart. I was completely devastated by things that I would ordinarily find irritating.
I had zero emotional resilience. Once my feelings started down a path of sadness and fear I could not turn them around. Even if it was only a passing comment, even if it was just a made-up story that sent them down that path. It was hopelessly outside of my control. All my willpower hardly made a dent. I’ve never felt so helpless in my life.
Everyone tried very hard to be careful around me and it still wasn’t enough. I remember one time when my 13-year-old brother, Jason, suggested we watch “101 Dalmatians” together. We figured it would be safe for me. After all, it was just Disney.
It started out innocently enough, but when we got to the part where Cruella threatens to skin the puppies alive, our fun movie time turned into a nightmare. I was horrified and I lost control.
I started sobbing and then hyperventilating. Jason stopped the movie right away but I could not calm down. Brett heard me from the next room and came in to comfort me but I continued sobbing and hyperventilating for probably an hour or more.
I was terrified. Just as terrified as if Cruella was a real human, standing right there, skinning innocent puppies in front of my eyes. Nothing Brett or Jason said could comfort me. I could not stop crying for those puppies. Poor Jason felt terrible!
Episodes like this were all too common during that time in my illness, sometimes happening multiple times per day. Had I tried to watch “How to Train Your Dragon” then, I’m sure it would have turned into a similar nightmare. Yes, it’s animated. Yes, it’s a children’s movie. But three years ago, the mean words, knives, dead and injured dragons and suspenseful scenes would have sent me into the closet screaming 10 times over.
But tonight, I watched it and had fun. I was able to enter into the story while still keeping myself separate from it. My brain could actually understand the concept that I was not the characters and that the events in this story were not, in fact, real. I knew that there would be resolution in the end and I enjoyed watching the story unfold.
So… to anyone who feels like their illness has taken over their brain and left them without even the thinnest of skins. I’ve been there. You are not alone. You are not crazy. You can know that it’s not really you. Even if everyone thinks something is seriously wrong with you. I can tell you, it’s not you.
I know, because I’m on the other side now. There was nothing wrong with who I was. I didn’t fix this by trying harder to be strong. I didn’t even fix it by thinking positive thoughts or trusting God more. The answer came through killing the infection in my brain and avoiding the toxins that were affecting me. It had a physical cause.
I’m feeling more and more like myself every day. I’m still a flawed human being with fears and sorrows but I can let myself be sad now without worrying that the sorrow will never let me out again. I can get really scared, like I did when Brett almost drowned, without getting stuck in a never-ending tornado of panic. When I cry now it’s not like turning on a faucet that cannot be turned off again. My crying is actually healing and productive. I can let myself feel something and then move on.
So my friend, don’t lose hope. Perhaps you will find answers soon. Perhaps you will be the next one to find your way out of this darkness.
By the way, Brett and I made a beautiful PDF of my favorite resources for suffering souls. I created the content and he made it look fancy with his superduper graphic design skills. It’s available for free to my email subscribers. Click here to sign up and receive 5 Resources for the Suffering Soul.
20 Comments
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August 2, 2017 at 7:04 pm😊❤️
August 3, 2017 at 11:46 amI’ve come back to this a couple of times this week and each time this quotation from Brené Brown comes to mind “vulnerability is our most accurate measurement of courage”. It was so courageous of you to share this with us, Ana. Thank you 🙂
August 5, 2017 at 7:54 pmThat time of your life truly sounds like “the dark night of your soul”. I must say that my emotional state has never been that vulnerable, but it has been in a deep, dark spiral before, and that is a very scary place indeed. Psalm 139 has been such a comfort to me where it says, “… surely the darkness will overwhelm me and the light around me will be night. EVEN THE DARKNESS IS NOT DARK TO YOU, and the night is as bright as the day. Darkness and light are alike to You. ” I can’t tell you how many times I’ve said this over and over, out loud and in my head, when the darkness descends. The darkness I feel because of contamination and my illness is not dark to my Savior. Praise God!
August 2, 2017 at 9:17 pmAmen! Thank you for sharing Elizabeth! Such a comforting passage.
August 3, 2017 at 11:47 amAna… thank you. Now in month 28 of acute bartonella and I so relate. Blessings.
August 3, 2017 at 12:44 amI had a pretty bad case of bartonella. I would have horrible mood swings. But the I V antibiotics cleared that up pretty well. Unfortunately I was also having mold exposure from my home so now I am trying to heal from that and hopefully, if need be, deal with the Lyme next.
August 3, 2017 at 7:54 amI’m so sorry Carolyn. So difficult. Hugs!
August 3, 2017 at 11:47 amVery inspiring! I like the way you write all your post. I am very happy for you! continue to do what you do!
August 3, 2017 at 4:37 amThank you Christine!
August 3, 2017 at 11:48 amThank you for sharing Ana, thank you for being real and laying your heart out there.
August 3, 2017 at 8:42 amAww… Thank you! It wasn’t an easy one to write.
August 3, 2017 at 11:48 amWhat a wonderful testimony to the possibilities of recovery, and also acknowledging the depths to which this illness can take a person. Any person. Beautiful. And I relate!
August 3, 2017 at 10:28 amThank you so much Kim! ❤️
August 3, 2017 at 11:49 amThis is so important to talk about. I’ve also felt like I was losing my mind (from mold and lyme and co-infections). Suicidal thoughts are one of my symptoms when I get exposed to mold. But I always knew at some level that it wasn’t really me, there was something attacking my brain. What you wrote about “I didn’t fix this by trying harder to be strong. I didn’t even fix it by thinking positive thoughts or trusting God more… It had a physical cause.” This really needs to be more widely understood. Thank you for your post!
August 3, 2017 at 12:10 pmThank you for sharing Jen. I have had that too. It’s horrifying to feel like something else is attacking your mind. I’m so glad this post resonated with you.
August 3, 2017 at 6:47 pmThis is so encouraging Anna. Not only that you have come so far in your recovery, but also that there are others who can find hope through you in the words that you write here. 🙂
August 3, 2017 at 1:04 pmAww… Thanks Ashely! I hope you’re right! 💕
August 3, 2017 at 6:48 pmWhen you write about feeling you had lost your mind, I think of the nightmares I’ve had, and how they affected me. I knew they were only dreams, but that didn’t stop my heart racing, my emotions being crushed, and all the physical responses my body still had. I would wake up and be in pain for hours. It didn’t take long for me to realize, I can handle so so much physical pain, but take my mental capabilities away? That really scared me. When I was hallucinating, and couldn’t tell reality from dream, and couldn’t reason my way out of that fear… that was not okay. And, just like 101 Dalmations for you, there were shows we watched as a kid with innocent stories that would disturb me deeply, because something was presented that just messed with my mental picture of reality. It got into my dreams, and messed with my head. Having extreme or chronic illness really warps your reality in many ways, and some days it takes all you have and more just to get through without everything falling apart inside and out. I’m glad you were able to enjoy that time of calm and comfort with your husband, Ana.
August 4, 2017 at 4:43 amThank you for sharing so vulnerably Ruth! I’m so sorry you dealt with those type of nightmares Ruth. I’ve had those too and it’s just like you describe. Your body and emotions respond as though the terrible thing really were happening. It’s dreadful! And yes, losing your mind is often even more terrifying than the physical disability. May the Lord strengthen and sustain you dear sister…💕
August 7, 2017 at 8:44 pm