Dear Daughter, Welcome to Wonderland

In honor of Halloween, a journey into Wonderland….

As far back as I can remember, I’ve had bad dreams. We all have bad dreams, and usually mine were run-of-the-mill types. When I was very young, of course I would cry for mommy and daddy, and they’d come in and comfort me, telling me it’s just a dream, and I’d calm down and eventually go back to sleep either in my own bed, or if I was taking a particularly long time to calm, in their bed safe between them. At a still relatively young age, my dad helped me learn the difference between a scary dream and reality, and I learned to self-sooth, and go back to sleep on my own.

But then there was the recurring bad dream. I had that dream for as far back as I can remember as well. When I was about 5 or 6, my parents asked the pediatrician about it, and it was mostly dismissed as “stress” (not sure what kind of stress I was supposedly experiencing as a 6 year old…), and was forever after dubbed my “stress dreams.”

It has been years and years since I’ve had the dream, but I still remember it very vividly. I’m standing in a shadowy place when suddenly objects start falling out of the shadows at me. They start slow and small, but quickly pick up frequency, and they get bigger, and bigger. Marbles to tennis balls to bricks and tires. Then bigger tires, and even bigger tires. I try to back up, but can’t get away fast enough and the origin seems to get closer and closer, until the shadows are above me, and I’m looking up into them, and the tires are falling out of them over me, bouncing all around me and on me, all the while getting bigger and bigger until they almost block out everything else. And there’s a voice. It too starts out small, quiet, distant. I can’t quite make out what the voice says, but it doesn’t really sound happy. As the objects get bigger, the voice gets bigger, louder, fuller. By the time the tires are monster truck sized, the voice is so loud and all around me and I still can’t make out exactly what it’s saying, but I know it’s yelling at me cruelly and all I can do is cover my head with my arms and press my fists into my ears to block out the tires and the shouting and pray it will stop.

My parents would usually have heard my crying in my sleep and had rushed in to try to wake me up. I’d be startled and disoriented and continue crying and not making sense, so they’d comfort me and take me to their bed to sleep. I’d eventually calm down, and we’d all eventually fall back to sleep.

But then I’d wake up again. See, my dad snores. Loudly. And I’m claustrophobic. I’d wake up and be stuck in the middle of their two sleeping bodies with no hope of falling back to sleep for his snoring and my increasing anxiety about being stuck between them…sigh. It sure was tough to be 5.

The dream actually happened once when I was staying at a friend of the family’s house. My mom’s friend/my friend’s mom came in to comfort me and I ended up back in their bed. My friend’s dad also snored. And they weren’t my parents. I knew I had to figure this thing out.

So at around 8 years old, I tried what my dad taught me with the other bad dreams. When I woke up, I didn’t cry out, but just waited and observed, waiting for the dream to slip away and reality to come back into my room. That’s when I remember noticing something beyond the dream. As I was waking and waiting, I noticed changes in my body. My arm would get really skinny and small, or my hand would get huge. I also noticed changes in my surroundings. As the loud voice faded, it was replaced with an empty barely perceptible ringing, and everything in my room would be far away from me, as if my bed had shrunk with me on it. I would just sit and marvel at these things. I’d touch things and feel them as if my hands were very small or very large. I’d touch my tiny arm and feel it’s tininess. I marveled at these sensations and sights until they passed, and then I’d go back to sleep and mostly forget about it until it happened again.

As I got older, the dreams faded, but the growing/shrinking thing continued. I never told anyone about it. I figured they’d think I was crazy or something. Sometimes it would be just as I was falling asleep. Sometimes I would wake up in the middle of the night and find myself in that state. It didn’t scare me anymore. It was just something that happened.

When I was about 19 in the dorms in the Air Force, it was still happening, although much less often. One day I read an article in a magazine about “Alice in Wonderland Syndrome” and it described most of what I had experienced to the T. (Turns out I wasn’t a weirdo!)

From US National Library of Medicine

“The foremost symptom of the Alice in Wonderland syndrome (AIWS) is an altered body image. The person observes sizes of parts of the body wrongly. More often than not, the head and hands seem disproportionate, and in general, the person perceives growth of various parts rather than a reduction in their size. Another most significant symptom of the AIWS is that the patient perceives the sizes of various other objects inaccurately….The individual loses a sense of time. For him, time seems passing either at a snail’s pace or passing too swiftly. Some people experience strong hallucinations; they may visualize things that are not there and may also get the wrong impression about certain situations and events. Furthermore, like the visual perception gets warped, so does the auditory and tactile perception.”

Turns out a British psychiatrist, John Todd, wrote a paper in 1955 about this condition, also known as “Todd’s Syndrome.” He’s the one who named it “Alice in Wonderland Syndrome” due the similarity to Alice’s experiences in the story. But there was no known cause. It was attributed to certain diseases or diet or just a neurological anomaly.

From medicalbag.com

“Documented triggers for an episode of AIWS include, but are not limited to, migraine, stress, brain tumors, Epstein-Barr virus infection, drugs (particularly cough medicine), epilepsy, and infections. Episodes are of short duration and can reoccur multiple times in a day. There is no way to predict onset. Several neurologists have ordered MRIs for patients with acute-stage AIWS, though once the episode has passed, brain activity appears normal. Dr. Sheena Aurora, a Stanford neurologist and migraine specialist, was the first to perform an MRI scan of the brain of a 12-year-old patient in the middle of an episode. Dr. Aurora’s 2008 report concludes that electrical activity caused abnormal blood flow in the parts of the brain that control vision and process texture, shape, and size.”

I couldn’t find the 2008 report, but I did find reference to a few patients she was able to capture a scan of during an episode, and the findings were the same for all.

Years passed, and I had an episode here or there, but didn’t think much about them anymore. I had “Alice in Wonderland Syndrome,” ok…still wasn’t going to tell anyone about that one.

One night, when my ex-husband was working the night shift and my son was with visiting his dad for the week, I was home alone with my daughter. She was a little over 1 year old at the time, still in a crib and not really talking yet. Around 2 am, she started screaming in her room. I ran in and picked her up out of her crib, but she was writhing so much, I could barely put her down on the floor before she wriggled out of my arms. For the next 45 minutes, I sat in her room listening to her scream, watching her twist and writhe on the floor, unable to do anything to console her or wake her. All I could do was watch and wait and make sure she didn’t hurt herself on anything in the room. I hadn’t turned on the light, and we lived out in the boonies so the only light was the moon coming through her window, and I was all alone. It was the most terrifying 45 minutes of my life. I kid you not, the whole time I was expecting any minute that her head would spin around and her eyes would be blacked out. (I watch too many scary movies.)

Eventually she slowed and I was able to hold her, and then she stopped and seemed to fall back asleep, although I’m not sure she was ever actually awake through the whole ordeal. I held her the rest of the night, watching, waiting. But nothing else happened. The next morning, she was normal.

I told my husband when he got home, but he ignored it. I told my mother-in-law, and she said “night terrors.” My daughter seemed young, but I guess that explained it. It was certainly better than all the horror movie causes that were floating around in my imagination.

The “night terrors” continued through the years. They weren’t often, and not one has ever been as bad as the first one, but every couple of months, my daughter would call out for me at night, or I’d hear her whimpering in bed, and I’d find her in terror. She’d cling tightly to me and I’d try to calm her down. Sometimes in her bed, usually on the hallway floor. Sometimes I wouldn’t be in be yet and she’d find me downstairs. But she couldn’t be calmed. She would stare through me, beyond me, eyes wide in terror, mumbling: “Too fast. Too loud. No!”

I tried singing to her (too loud!). Holding her tightly (too tight!). Letting her climb on me and squeeze me. Laying down with her. Walking with her (too fast!). Swaying (too fast!). Staying still. Soothing words. Stroking her hair. Sometimes something would work, but nothing worked every time. And I usually ran through all the efforts, so it may have just been time passing that ended up calming her.

One night, amongst her normal mumbling, I heard “outside. need outside.” So out we went. Shoeless, in pajamas, out the door. I stood on the porch, but she repeated “outside,” so I walked down to the patio, then the grass. Her fear seemed to wane. I asked if she wanted to be in the grass. She nodded, so I set her down, still holding on to her, on the grass. And she calmed. Going outside, in snow, in rain, in the summer or in the cold, as quickly as possible always worked.

In the beginning, she couldn’t communicate anything after. Then she said she didn’t remember what happened, just that she had a bad dream. But then, when she was about 9 years old, we stayed up after she calmed down and she tried to explain. And it was my “stress dream” from childhood. Not the tires, but loud, fast, things falling and growing bigger and bigger, overwhelming sensory overload, angry voices yelling. And she felt the growing/shrinking perception changes. “Wonderland” passed from me to my daughter.

We always go straight outside when they happen now. The last few times I’ve almost known they were coming. I’d not want to go to sleep yet, or I’d feel the need to be unoccupied, standing-by. Like I was waiting for it, but didn’t know that’s what I was waiting for. I’ve also been coaching her on how to move past the dream and just observe “the magic of your perception.” We talk about the episodes when they happen, and she seems comfortable sharing with me, and I am comfortable talking about it to her too.

Thank you, dear daughter, for joining me in Wonderland. I’m sorry I had to bring you here, but I’m so grateful to have you with me.

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