Many people long for others to accept them the way they are—especially, I suspect, people who know they’ll find that acceptance. But for those of us with disabilities, what does “the way you are” even mean, exactly? When a person who lives with constant challenges is told, “Don’t worry, you can carry on being exactly the way you are,” I sometimes wonder if that person actually wants to carry on in that same mode. The phrase “The way you are is fine” contains kind sentiments from the person saying it, I know; and I know the speaker believes the phrase will put the person it is being said to at ease. What I’d like to query, I guess, isn’t the phrase itself, but the subtext underlying it. If the speaker means, You know, you’re already good enough just being the way you are, then some people will be delighted to hear it, but I suspect others will be thinking, No thank you very much: I don’t want to be stuck the way I am now for the whole of the rest of my life. In a way, it’s easy enough to accept a person as being the way they are. What matters long term is what follows on the heels of the assurance, “It’s okay, just be the way you are.” That’s the kicker.
If I could speak to my thirteen-year-old self, I wouldn’t offer bland words of easy encouragement. Just being told, “Do your best!” and “It’ll be all right in the end” wouldn’t have meant a whole lot to me back then—life was simply too much of a struggle. No one has an objective view of the good and bad aspects of their present selves, I believe: it’s only via hindsight that we understand what we were thinking. Positive words uplift people, I know, but I’d prefer to impress upon my younger self that life is short. People keen to embrace tomorrow are people imbued with hope. Once we grow to understand that our lives don’t—as we once imagined—go on forever, we can roll up our sleeves and get on with things.
I was thirteen before I fully accepted the fact of my disability. Prior to then, when I was still a child and thinking of not a lot apart from myself, I couldn’t begin to visualize my future. Time’s passage and flow seemed unending, like being on a swing that I never got off. So I’d like to tell my thirteen-year-old self that the swing will one day stop and that, until it does, by swinging with all your might, the same old scenery will evolve. Once you’ve felt the presence of death, you know the brevity of life. Life is short. Life is a sequence of regrets. But all the worries troubling you now will soon recede, into the past.
The final thing I’d like to tell my thirteen-year-old self is to consider for whom he is living. I’d say, “Please live your life for yourself.” Parents, teachers and caregivers continue to look after us, and of course we mustn’t forget to thank them. However, our lives are our own lives. We should live for ourselves with pride and with our heads held high. In the past, I used to despise myself for being so useless—but the one making that judgment was also me. I’d tell myself, “Make your life shine with the purity of a flower and with the shimmering of stars. Around you are people who are proud of you and wish you well. In your future are days when you can look forward to your tomorrows.”
I took the street I always take, so how did I lose my way? Too weird for words. Just a slip of my mind, perhaps? Looking around, that’s what I figured. “This place could be anywhere”: a perfect phrase for this town. I’m supposed to know what’s going on, but even where I was standing looked unfamiliar. Looking behind me, I saw a river across the road and, as if my feet had made the decision for me, I began running. Lights were dancing on the river. Here and there were whirlpools in the current. I noticed a person on the far bank staring straight at me. “HALLLOOOOOOOOO!” My voice came out loud, unbelievably loud. Still watching me, the person gave a slight bow and I felt a little reassured. Well, let’s cross over this river and see what’s what on the far side, I thought, and off I jogged. There must be a bridge around here somewhere. But I couldn’t find one. I was panting for breath now, so I took in my surroundings once again and noticed that the person who had been across the river was now over on my side, so I dashed back the way I’d come. “Excuse me,” I said.
“What’s the matter?”
I wasn’t sure how best to explain things. “Well, I’m kind of lost.” My forehead was all sweaty. “Where is this place? You see, I—”
“Cheer up, you’ll be back home soon enough,” said the man.
These kind words consoled me and left me embarrassed that I’d been so flustered. Of course, yes, my family must be wondering where I am. With that thought, it came to me who this man was.
My father. “Dad,” I murmured, and he looked a little taken aback. He was probably thinking, So at last he’s realized who I am. He clasped my hand and I apologized in silence: Sorry I didn’t recognize you straightaway. My father and I set off side by side, like we did when I was a kid, and everything was just fine. A minute ago it all felt like the end of the world—unbelievable! “Thanks for coming out to get me,” I told him.
Dad pretended not to hear me. I wondered why.
—
We came upon an avenue of gingko trees I had walked down before. Yes, the scene was quite familiar, but I was no longer at ease—I felt as if I was, in fact, in a strange country. Loneliness ebbed over me, so I spoke up again. “Dad, how long will it take to get back?”
My father turned to me. “By the time the sun goes down, I’d say.”
“Good,” I replied. And for the first time in a long while we spoke about dozens of things—school, friends, the cat, you name it. He took it all in, sometimes smiling, sometimes nodding, sometimes making agreeing noises. I described every last memory I had in my head.
The evening star was out and everywhere around me was tinged with all the colors of sunset. I gazed yearningly at the scene. “What—a—picture…”
A silence fell. There was nothing left to tell my father. I was on the point of saying, “Your turn, Dad,” but as I looked up at his face, a shadow passed over it. He looked despondent, and I became all flustered: I have to keep talking about my life, he wants to hear more. I struggled to come up with more recollections that I might have squirreled away somewhere, but my body wouldn’t stop trembling with anxiety. I’ve forgotten something, something crucial…and now Dad’ll be furious with me.
The next moment, I found myself running off again until, some time later, I finally ran out of breath. I should be in the clear by now. I felt like I’d done something bad, but also as though I was safe. Darkness had swallowed everything around me, so there was nothing I could do—I’d have to lie down and go to sleep right where I was.
—
It was early morning when I woke up. Light bathed my whole body. I felt good, and sang to myself a song I once loved a long time ago. Inches away and everywhere were swaths of wildflowers, all pretty pinks and yellows. A cabbage-white butterfly crossed my vision. I’m going to catch you, I thought, and chased after the butterfly: the butterfly fluttered and fluttered and fluttered and fluttered and time and time again I snatched at the thin air, before finally tripping over and landing on my backside. Defeated, I squatted on my heels and raised my head. Who’s that?
There, in my line of vision, was an old man. His gaze wasn’t piercing, but he unsettled me. He was peering at my innermost self, I felt.
I hurried away, trying not to look back in his direction, until he was safely out of sight. Who on earth could he have been? Why was he staring at me like that?
Now that I thought about it, it struck me that I’d probably seen that very same old man yesterday, as well. And perhaps I saw him the day before, as well…
Who knows? I told myself not to worry too much about it.
I took a nice deep breath, and let it all out…
There’s nothing especially out of the ordinary.
As a mood-changer, I tried summoning up a cheerful memory. Nothing came to mind. Tired. I must be tired. A good long rest at home, that’s what I needed. So off I set once more. On sunny days, the trees and plants and wildflowers are aglow with life. When I was a child, I used to run around and play in these meadows, catching insects and
playing hide and seek. Those were the days. One after another, the faces of my friends visited my mind.
How is the old gang doing these days? I wondered.
The greenness around me, meanwhile, was denser, darker and deeper. The life force of nature that envelops this world left me lost for words, and feeling like I was the one being breathed in by something, I kept walking. The thought struck me that up ahead lay whatever it was I was searching for.
All of a sudden, as if emerging from a labyrinth, I came upon an empty field and I sat down, sighing. Yes, the scenery here was familiar. I used to be such a cheerful person. I counted my blessings, and smiled…but just as I was about to get going again, I heard voices in conversation. Wow, I thought, even in a place as empty as this, there are people. I got to my feet as some friendly-looking women approached. They wore aprons and shared some tea and snacks with me.
“What a glorious day!” they said. “We’re going for a walk. Why don’t you come with us?”
“Well,” I responded, “okay then.”
We set off. Everyone was in good spirits, and kind.
After a while, this white building came into view. One by one, the women went inside. “Why don’t you come in?” they asked me.
Well, why not? An invitation’s an invitation.
But upon reflection, I changed my mind. “I’m sorry,” I said, “but I’ve got a few things I need to take care of—I’ll have to excuse myself.” Saying this, I bowed.
The ladies objected, “Oh, but you’ve already made it this far!”
No. My mind was made up. I said my goodbyes and walked away in the opposite direction. Despite what I’d just told them, the people stayed in my thoughts and, secretly, I crouched down in the cover of a large tree growing next to the house. The sound of their footfalls faded away, and by and by the door was locked. I waited a while longer.
Nobody left the building.
This is not a place where I belong.
I can’t just stay here indefinitely.
No, I have to do something.
It’ll all work out in the end.
—
Where on earth did you spring from?
A small girl was at my side. I hadn’t noticed her before.
She asked me, “Where are you going?”
“Uh—thataway,” I replied, and began walking.
Yes, that’s true—I was going in that direction.
But after only a few steps I stumbled, tripped over a small rock and smacked my forehead on the ground, giving myself quite a nasty injury. As I was curled up there, the girl peered at my face in concern. “Come on,” she said. “I’ll help you the rest of the way.” I held the girl’s hand and she led us away.
What a helpful child this is, I thought, to take such pains over a person like me. I’m truly grateful. I wonder if she’s some kind of angel? So I thanked her.
Step by step by step, on we went.
“Well, we’re here,” she told me. “We’ve reached Thataway.”
Oh. We’re here already. Promptly I said, “Now this way.”
“Okay,” said the girl. She took my hand again and led me away in a new direction. Step by step by step. Her hand was small and gentle, and as long as I was with her, I felt encouraged and that everything was going to be okay.
“Here we are,” she announced. “We’ve arrived at Thisaway.”
I don’t want to say goodbye to this girl. And after thinking this thought, I fell silent, but the girl said, “Don’t you understand what I’m saying?” Her eyes filled with tears.
So I grew sad too. I put my hands on her shoulders. “No, I’m sorry, I’m sorry, I do understand.” How awful of me, to make such a sweet little thing burst into tears…This was all too much to bear. I looked up at the great beyond, and bit by bit by bit, my emotions calmed themselves. In every direction, the blue sky stretched away. White clouds floated. If I was a bird, I’d fly off to eternity…
…and my body felt lighter than air, then was lifted up.
I stretched out my arms, as far as they’d go.
Wonderful…just wonderful.
My mind and body felt so free, I forgot I was a person.
“Enough already,” I told myself. “That’s enough now.”
But what does “enough” even mean, exactly?
Somebody gave my back a shove, and at the speed of thought I returned to myself. The person who had pushed me was an old man, sturdily put together, who looked at me sternly. We’d never met. I pulled away, or tried to, but he prevented me. When he saw the blood on my face from my wounded forehead, his features showed distaste. I said, “Uh…” and placed my hand over my brow.
The old man said, “Leave that alone and come with me” and grabbed my wrist. “Hey,” I protested, “that hurts!” But he didn’t let go. He strode off, dragging me along after him, until we reached a small room which he pushed me inside. The room held one bed and one chair, and that was it. Where am I now, and what’s going to happen to me? I began crying and found I couldn’t stop. That horrible old man’s the lowest of the low to lock me up and leave me in a place like this! It’s not as if I’ve even done anything wrong…
This was the End—and I was petrified.
“Get me out of here! Help me! Someone!”
I peered through the one tiny window.
The sun was slowly, slowly sinking.
Ah…
A sunset to darken my heart.
—
I hadn’t noticed that I’d fallen asleep. The curtains were drawn and I couldn’t tell if it was night or day. Quietly, I opened the door of the room. The passageway outside was deserted—now might be my chance to make a break for it. As I set foot in the passage, however, the old man stormed up with a face like thunder and demanded, “And where do you think you’re going?”
Damn, I thought. Now I’m in for it.
Hoping to avoid trouble, I just put on a pleasant face.
The old man shouted, “What are you doing out at this time?”
Startled by the volume, I scuttled back into my room.
How dare he talk to me in that tone of voice?
I grew angry. Well, to hell with him. I’m not doing what he says any more. That night I was in too much of a state to sleep, but the following day the old man entered my room and gave me a polite “Good morning.” I ignored him, which might have annoyed him. He didn’t give me any breakfast. I wasn’t madly hungry, but when no lunch came either, I said “to myself,” in a deliberately loud voice, “My my, I haven’t had a single bite to eat.” Begrudgingly, he made me a couple of big rice-balls—and after I’d wolfed them both down, the old man hoiked up his eyebrows into an expression of jokey surprise.
Thanks to that funny expression of his, every now and then I’d ask the old man to make more rice-balls. He rubbed antiseptic into the wound on my forehead, put on a Band-Aid and gently smoothed away the pain. Huh, maybe he isn’t quite such an ogre after all.
All the songs of the birds echoed in the mountains.
—
One day, I summoned up my courage and told the old man, “You know, I’d like to go home now.” He glanced at me but ignored what I’d said, acting like he hadn’t even heard. Who does he think he is? How can I trust him a moment longer? My patience was all worn away, and I snapped: “I want out of here! Why won’t you let me go home?” I boiled over and I pounded the old man in the chest over and over. “You!” I shouted, “You! Just get out of my sight!”
The old man’s shoulders trembled—and then he lost the plot. “That’s enough already!”
…Am I to blame for being here?
Am I in the wrong?
Don’t stare at me like that.
My last hope of ever going home was gone.
I might as well kill myself now.
I can’t take any more of this.
—
Yet my life with the old man somehow carried on. He tried to speak with me sometimes, but I was too grumpy, too sunk in desp
air to respond. Despite my bad temper, he carried on the conversation on his own. I wonder if the old man feels lonely? What passed through his mind was a mystery. From time to time, other people came into my room to clean or to tidy up, but the old man always stayed. Toward these others, he was deferential to the point of subservience, but he always lorded it over me. I disliked the old man for this, for sure, but as I observed him, I began to wonder if he also hadn’t been imprisoned here somehow and was being forced into working here against his will. The old man kept expressing his thanks to other people. Up to a point, I even began pitying him, and started treating him a little more kindly. Only yesterday I told him, “This job of yours is really pretty tough, isn’t it?” and for the first time the old man gave me a smile. Aha, then I’m right, I thought. Where’s the harm in helping him out a little? So when the old man told me, “Lift up your arms,” I lifted up my arms. Or if he told me, “Eat this up now,” I’d eat it up for him. Tasks like those, even I could manage. Someday, I want to get out of here and be free again. I needed someone to understand that I dreamt about being free again. Some of the weight was lifted from my shoulders by thinking of the old man as a kind of ally. The kind who fortifies you.
Now and then, when the old man wasn’t busy working, he would take me outside. Outside the building, the air was fresh and clean. The old man and I sat next to each other on a bench in the soft breeze. I would stare at the ground as he pointed into the distance and said, “Look at that, over there…” To be honest, I couldn’t make out what he was pointing at, but I’d respond with a “Right, yes…” and a nod. I guessed the old man was trying to lift my spirits and give me renewed hope in the future. I appreciated the gesture. Maybe he and I were becoming friends, after all.
Possibly because I was feeling more at home and settled now, I was sleeping better and more often. However long I slept, no one ever disturbed my rest. I’d have this strange dream occasionally. There would be this one joyful Me—full of the joys of spring—alongside another Me, who was sobbing his eyes out. These two versions of myself were unaware of each other’s existence…as if two worlds were housed in a single ongoing story. There was an assumption that the Joyful Me would get the happy ending, but in fact, both the Joyful Me and the Miserable Me would wind up pretty much the same. I didn’t understand why. Surprisingly I found myself sympathizing more with my happier self—after all, the dream Me who had the most in common with the real Me was the unhappier one.
Fall Down 7 Times Get Up 8: A Young Man's Voice From the Silence of Autism Page 7