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Alice In Wonderland Syndrome

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An absurd amount of symptoms are attributed to Lyme disease. The last time I checked, the number topped 100. (I have experienced all but two.) Many are shared with other chronic illnesses, such as chronic Epstein Barr virusfibromyalgia and lupus. Some of these symptoms are just plain crazy - like Alice in Wonderland Syndrome

Never heard of it? You're not alone. Most doctors never have, either. I'm not sure if that's because we patients think the symptoms are too crazy to talk about or because doctors refuse to believe these are a real set of symptoms. Maybe both. 

Alice in Wonderland Syndrome affects perception. Often the first symptom is body image, but not in the way that a normal-sized girl might feel fat when standing beside her extra skinny friend.This syndrome causes us to perceive our bodies differently. My first experience with this syndrome happened when I was very young, somewhere around the age of 7 or 8. I vividly remember my hands feeling enormous, yet also light, as if they'd float away. You know the Pink Floyd song Comfortably Numb? The lyrics: When I was a child, I had a fever. My hands felt just like two balloons... Those lyrics are that experience. I told my mother what I was feeling. Though I don't remember her exact response, I'm sure it was something about me being sick (scarlet fever) and that the feeling would go away when I felt better.

It did. But it didn't.

My hands eventually felt normal again. For a time, at least. This incredibly odd syndrome has never left me. Occasionally, my hands will get that same feeling. Or my feet. Sometimes I'll feel huge, like I'm 9 feet tall. Other times I feel like I've shrunk to the size of a child. (Okay, admittedly I'm not that big to begin with. )

But the oddity doesn't stop there. Alice in Wonderland Syndrome affects more than body image. It affects all aspects of perception. And, as the years moved on, these problems grew worse for me, eventually lingering longer and some never leaving at all.

My vision changes constantly, though it's nothing an eye doctor can fix. This is a distortion of visual perception. Some things will seem incredibly far away, when they're really only a couple of feet ahead of me. Other times, something a good distance away will seem too close. This has become such a problem that I no longer drive. I can't judge where I am on the road in comparison to the other cars around me. (I also get lost very easily, which is another complication.)

Then there is distorted perception of time. Everyone has experienced that sense of time moving faster when they're enjoying themselves and time moving slower when they're waiting for something. This is far beyond that, and unrelated to the experience being favorable or unfavorable. It's a sense of a month feeling like a day and a day feeling like a year. For me, this isn't a huge issue. For other people, it can be extreme enough to be unbearable. When you can't depend on a rhythmic passing of time, life can feel chaotic.

The distorted perception of touch is, fortunately, one I rarely experience. When I do, it throws me completely off balance. The hard floor beneath my feet can suddenly feel soft, like it might give out beneath me. I've never experienced anything more extreme than that. Some people experience textures differently.Something soft might feel fuzzy or rough. For some people, this could cause a whole lot of creepy sensations.

Distorted perception of sound is another issue. Some days, a person speaking softly feels like I'm being shouted at. The slightest noise makes me cringe. This is unrelated to headaches or migraines. It's all in how we perceive the sound. There are days I hear a whisper like it's thunder crashing. Sadly, I recently read about a young woman who suffered so badly with this that she eventually committed suicide.

The worst aspect of all this for me is the feeling of disconnect that comes with these changes in perception. Once again, Pink Floyd nails this feeling in Comfortably Numb:

There is no pain you are receding
A distant ship's smoke on the horizon
You are only coming through in waves
Your lips move, but I can't hear what you're saying

Often, I feel like my body isn't quite present, like I'm not quite in the same dimension as everyone else. It's a difficult feeling to explain, though Pink Floyd comes the closest. I wonder if one of the group members suffered with Alice in Wonderland Syndrome

I've only had one doctor I could openly discuss this with. (And I've had a whole lot of doctors.) A few times I've mentioned it to others, only to get a blank look. Or a suggestion that I go on antidepressants. 

I'm not depressed, certainly not in any clinical way. I'm frustrated with my limitations, irritated with all the unhelpful (I'm being nice here) doctors I've wasted money on over the years. But I'm not depressed. Or crazy. (Clinically speaking, at least.  )

Life is an adventure, and this is mine. I've come to accept that some days I'm going to feel like I've slipped into the rabbit hole with Alice.