It took a while to get over the fact that, to a certain extent, my secret was out. My parents refused to leave, despite my urging them to go away. I didn’t want anybody to see me like this. Even though I knew that I shouldn’t have had anything to be ashamed about, it hurt to see the expressions on peoples faces change so dramatically just after laying eyes on me.
It’s like, when confronted with something so out of the ordinary, something nobody ever imagine a human body physically capable of going through, there’s a little space in between the rapid fire change of facial expressions. At first there’s a natural kind of hesitation, as the brain tries to rationalize that which just doesn’t make sense. Then there’s shock, once realization sets in, and that’s quickly followed up by an attempt to manage any further reactions.
But as the subject, as the cause of everyone’s emotional extremes, there’s a moment in between, it happens so quick, but you’re so hyper-aware of everyone looking at you that it’s impossible to miss. Right before your family and friends settle into that worried “you poor thing” effort to display a deliberate and compassionate concern, there’s a brief half-second where the pure horror on everyone’s face shines through.
It’s panic, it’s fear, it’s people that you know and love looking right at you and yet struggling to make the connection between the person they know and the reality of what’s going on. Maybe it’s just me, maybe I’m still having trouble juggling my own self-perception, or maybe it’s just something that’s hardwired into all of us. We see someone we know diminished by something external, and there’s some sort of instinct telling us to run, that something’s not right, to get away before things get worse.
Again, maybe that’s a little dramatic, but for me those feelings were very real, and it was hard to try to keep a level head when my brain was screaming at me to run away, to take my pain and my fear and crawl away into a dark place somewhere.
I sat there on the couch in stunned silence, listening to my parents and my wife try to put into words that which was inexplicable. Why was I shrinking? How long had it been going on? What should we do next?
This was definitely out of everyone’s level of experience, but if anything resembling consensus was reached, it was that some sort of action needed to be taken as soon as possible. The problem was trying to figure out what action to take. My parents volunteered to stay with us while we made a plan. I said no, that it wasn’t necessary, but my concerns were ignored as my wife gratefully accepted their offer.
Over the course of the next week, nobody left me out of sight for more than a few minutes.
“Come on guys,” I remember trying to argue my case for a little privacy. “It’s not like I’m just going to disappear.” I said it trying to be a little tongue-in-cheek, but nobody laughed.
And even though I thought a little humor couldn’t have hurt, I guess it wasn’t that funny, the way my condition was progressing. While my wife and my parents tried to seek outside help, I continued to get smaller, and after a couple of weeks I couldn’t have been any bigger than a toddler.
I hated the fact that I was growing more and more dependent on other people just to get through the day. And I’ve never been one of those guys who blindly go through life not taking stock of how lucky he is to be here. I’ve often thought about what it means to be healthy, I’ve considered the fact that you can’t take anything in life for granted.
But shrinking, getting smaller, I’ve said it before but I still feel healthy. It’s just the world around me is changing. As I got smaller, I found my old world still here, but just less and less possible for me to navigate within.
For example, I remember I was sitting in the living room with my mom. She had dozed off on the couch, and my dad and my wife were out somewhere. Maybe I just wanted to assert some sort of dominance over my life, over my house. I quietly jumped down from the couch and went into the kitchen to make myself a snack.
Easy, right? But even though I was probably only around three feet tall, it wasn’t just my height that was affected. And I should have realized my own limitations, but I don’t know, I guess I was being stubborn, I guess a part of me just refused to acknowledge the constraints imposed on me by my new size.
I planned on boiling some water for a package of instant noodles. I dragged a kitchen chair over to the counter so I could reach the noodles in one of the cabinets. With a little more effort, I was able to slide the chair toward the sink and fill up a small pot with water from the tap.
Even though the plan was so straightforward in my head, I was having a lot of trouble. And while a part of my brain was acknowledging that fact, the stubborn part of me continued to act, even though it had taken me great effort just to fill up a pot of water and reach a pack of noodles.
Filled with water, the pot was weighing down my small arms. I was trying to keep it from splashing, but there was a messy trail of small puddles leading from the sink to the oven. After I managed to place the pot on top of one of the burners, I made a move to ignite the stove. But my hands, they were big enough for me to grip the stove’s burners, but it was like the knobs were glued in place.
It was me, I wasn’t big enough, I didn’t have the strength necessary to push it all the way in. My memory sent me back to when I was a little kid. I saw myself trying to get the top off of a childproofed prescription bottle, or a jar of pickles. It was like, I knew what I needed my hands to do, but there just wasn’t enough of me to make it happen.
All I needed to do was to apply enough force inward, and then the knob would easily turn to the left. I pressed with my hands, then both arms. Finally, I shoved my whole body’s weight against it, still without any success. Totally frustrated, I leaned back a little bit and threw my shoulder against the knob.
It was a dumb move, and the chair I was on tipped back. I didn’t have enough time to try and regain my balance, and I mindlessly reached out and grabbed the handle of the pot on the stove as I fell backward.
The loud crash obviously woke up my mother, because as I got up to my feet, she was standing in the entranceway to the kitchen.
“What’s going on here?” she demanded. “Look at this mess.”
“Sorry mom, I was just trying to …”
“You’re sorry?” she yelled. “You could have burned the house down.”
“Come on, mom, that’s a little dramatic. I just …”
“You just what? And look at this, there’s water everywhere. Do you have any idea …”
“Mom! Stop!” I interrupted her. The way she was talking down to me, it was like I went back in time twenty years. I’d make a mess, or get in trouble, and I’d have to stand there and listen to her go on and on. “This is still my house, mom. All right? You can’t just come in here and treat me like … like this.”
But it didn’t have any effect. She walked into the kitchen, right past me, as if I hadn’t said anything at all. While she grabbed some paper towels to start cleaning up the mess, she kept muttering under her breath.
“Did you hear me?” I demanded.
But if she did hear me, she wasn’t engaging. And what was I going to do, keep yelling? I was totally powerless, over my own body, in my own house. I was losing ground here, and if I expected any support from my wife, I didn’t get it.
“Well, what were you thinking? Why didn’t you just ask your mom to help you make lunch?” she said later that night.
“So you’re taking her side?” I was getting defensive.
“There aren’t any sides here, you’re being ridiculous. Did you make a mess? Should you have asked for help? I mean, come on, that’s what they’re staying here for.”
“Yeah, because you asked them to stay here. I don’t want them here. I feel like I’m in sixth grade again. You have no idea how awkward it is for me to have to …”
“Yeah, well you have no idea what it’s like for me either,” she started talking over me. “I can’t do this alone, OK? So I’d appreciate it if you would just try to cooperate here while we try to figure out a next step.”
With that she turned over to her night table and shut the light off next to the bed before closing her eyes. I couldn’t sleep much that night. I felt bad for myself, but I also thought about my wife, about what she must have been going through. This couldn’t have been easy for her, for my parents either. Maybe I did need to try to chill out a little, if not for my sake, then for everyone else’s.
But all of that thinking all but evaporated the next morning as I went downstairs to find my mother installing a bunch of hardware throughout the house. There were special rings around the stove knobs, plastic clamps holding all of the cabinets shut. The worst part was one of those stupid gates blocking the living room off from the kitchen.
“What the hell is this?” I asked her. “Are you childproofing the house?”
She didn’t answer me, she just kept going about what she was doing. I tried to get her attention a few more times, but she refused to engage.
When my wife came downstairs, I tried to rally her to my side, “This is ridiculous honey, right?”
That’s when my mother spoke out, but not to me. “It’s for his own good,” she addressed my wife. “This way we won’t have to worry about him burning the house down.”
“Listen,” I was getting heated, “this is still my house. And if you think that I’m just going to sit around while you …”
Just then my father ran into the kitchen.
“OK, great, thank you so much” and then hung up his cell phone and let it slip into his pocket. “All right everybody, let’s get going.”
“Get going where?” I said. “What’s going on?”
“It’s one of my coworkers,” he told us. “He’s got a daughter who’s a researcher at some biology lab at the university.”
My mom and my wife smiled. “That’s great,” my mom said.
“What did she say? Has she ever heard of anything like this?” my wife asked.
“Jesus dad, you ever think about running this stuff by me before making plans like this?”
Dad ignored me. “I told him as little as possible,” he continued, “I didn’t think she’d believe me without seeing it for herself. Anyway, she’s willing to take a look if we can get there before lunch.”
I didn’t like the idea. But I couldn’t give any reason why. Everything in my head was telling me to stay in the house. I worried that once this got out, that it would be the end, of me staying at home, of life as I knew it. And I was right. But what choice did I have? This was getting worse, and wishing it away wasn’t going to make the problem solve itself.
“All right,” I said finally. “Let’s go.”