This is a new story that I'm hoping will have 4-5 parts if people enjoy it...
I’m 24, but I feel like I am five years old right now.
Actually, I feel like I am two. Maybe one and a half. Because even a five-year-old can get out of bed himself. He can brush his own teeth and go to the bathroom himself. I can’t do any of those things. That’s where Maria comes into the picture.
Maria is in her 30s and a relatively recent immigrant from Mexico. When I was a kid, I used to love my sweet Mexican nurses, who were so loving and nurturing. I don’t want loving and nurturing anymore. I want somebody who treats me like a fucking man.
“Hola!” Maria cries out as she enters my bedroom. “ Are you ready for wake up, Graham?”
I roll my head to the side, knowing I’m getting up no matter what my answer to this question is. Actually, I could say whatever I want in front of Maria. She can’t understand a single word I say.
I’d like to blame it on Maria’s inferior English skills, but she’s actually pretty fluent, especially compared to some of the others. The truth is, most people can’t understand me. Unfortunately, my tongue doesn’t behave much better than my arms and legs.
When you’re born after only 25 weeks of pregnancy, you’re pretty much screwed for life.
“We get up, yes?” Maria says to me, already rolling me over to check my diaper. It’s soiled, obviously. Even if I could hold it for more than five minutes, I have nobody to take me to the bathroom during the night. It’s a lost cause. I’ve accepted it.
“Lots of caca!” Maria feels the need to comment. “You must have a big dinner last night!”
“Yeah,” I mumble. I never ever engage in any sort of conversation with Maria. As I said, she can’t understand me. But even if she could, I don’t have much interest in discussing my shit. And the fact that I have no control over when it comes out.
After Maria changes me, she sets about dressing me. I can’t help at all with this process. Due to my premature birth, I have cerebral palsy with spastic quadriplegia. What that means, in plain English, is that my four limbs are reduced to tight, useless sticks. The muscles of my face and mouth are affected as well, which is why a lot of people have trouble understanding my speech.
The one thing that isn’t affected is my intelligence. I have an IQ of 173. Genius level. Lot of good it does me.
As Maria fights my limbs into clothing, I can already tell this is going to be a bad day. There are some days where my arms and legs are quiet, and mostly… well, I wouldn’t say they do what I want them to do, but they don’t do anything that I don’t want them to do. Like, they don’t start spasming wildly. And I don’t drool out half the food from my mouth when I’m trying to eat a meal. But I can tell by the way my arms are twitching already that they are not going to cooperate for me today.
I fucking hate my body sometimes.
Actually, all the time.
Maria sings a little song in Spanish as she dresses me. If you told Maria that I have an IQ of 173 and am currently a PhD candidate in theoretical physics at Caltech, she wouldn’t believe it. There is literally nothing you could do to convince her that I do not have the brain of a three-year-old child. The last thing she does for me before she leaves every morning is put a Teletubbies video on YouTube for me, even as I’m trying to bring up my research on the screen.
“You like tubbies, Graham?” she always asks me.
It really is a lost cause.
Once I am dressed, Maria uses the lift by my bed to get me into my power wheelchair. As I feared, my limbs won’t cooperate at all today. I can’t even manage to get my right hand on the joystick. Maria ends up having to push me into the bathroom to brush my teeth and comb out my hair while I watch in the mirror.
Believe it or not, my face isn’t bad. On a good day, someone might even say I’m handsome. I’ve got nice, thick black hair, and really clear, blue eyes. But on a bad day, my lips lock in a grimace, and I drool like crazy, and there’s no mistaking I’m a guy with severe CP. As I said, today is a bad day.
Before leaving my bedroom, the last thing Maria does is attach my talker. You know that thing that Stephen Hawking uses to help him talk? I’ve got one of those too. Even though I can technically speak, it’s not useful if nobody can understand me.
You’re probably picturing a voice that sounds like a stilted robot voice like Hawking’s. But my talker doesn’t sound anything like that. Technology has come a long way. The voice sounds incredibly normal, although nothing like mine. It’s a pleasant, American-accented male voice.
The talker was incredibly expensive. Luckily, I’m pretty loaded. Actually, my parents are loaded, but it amounts to the same thing.
Since my arm is refusing to cooperate today, Maria wheels me out into the living room for my breakfast. On my good days, I’m able to feed myself. Sort of. Today that’s not going to happen.
“What you like for breakfast, Graham?” Maria asks me.
I want to tell her to just make me toast, but I suddenly get locked into a muscle spasm so violent that I can’t even access my talker. It’s one of those giant spasms that takes over my entire body. Even my jaw clamps down and my face twists into a horrible grimace and my whole head jerks to the right. In addition to taking medication for muscle spasms, I have a pump implanted in my spinal cord to help control them. It helps, but there are still bad days.
Maria takes my silence as a cue to pour me a bowl of Cheerios. I hate Cheerios on a good day… I don’t even know why we have them in the house. (Oh right, because I’m two.) The milk is going to be absolutely impossible to keep in my mouth, and I’m going to end up wearing it. If only my stupid muscles would relax, I could tell her that.
By the time the spasm subsides, Maria is sitting next to me with the bowl and is playing choo-choo train. If you think I’m exaggerating, let me assure you that I am not.
“Here come the choo-choo train, Graham,” Maria says, the spoon waiting expectantly outside my mouth. “Open wide!”
I obligingly open my mouth. Maria empties the spoon into my mouth, and I do my damnedest to make my tongue cooperate in moving the food bolus to the back of my throat. I manage to hold onto about half of it, and the rest dribbles down my chin. Luckily, Maria is used to that and ready with a napkin.
My mother enters the living room just in time to witness the spectacle of me attempting to eat breakfast. She’s dressed in her dark navy suit, and her hair is twisted into a chignon. She musses my own short hair with her hand and smiles at me. “Good morning, Graham,” she says.
Even though she’s in her 60s, my mother is reluctant to retire from her job as an executive in an investment firm. She’s always been incredibly career obsessed, as is my father. That’s why they didn’t get around to trying for a baby until my mother was nearly 40. She ended up getting pregnant after lots of fertility treatments, but there were tons of complications from the start. Like I said, I never had a chance.
Mom is not the most nurturing person in the world and I think she would’ve struggled even with a completely normal baby. But a special-needs baby was beyond what she could handle. Pretty much from the moment I was born, she turned me over to nannies and nurses. I’ve lived with her for 24 years, but I barely know her.
“Hi, Mom,” I reply obligingly, even though it propels another glob of food out of my mouth. This bit flies all the way onto the dining table.
“Oh, Graham,” Mom sighs, clucking her tongue at me. “You know you can’t talk and eat at the same time.”
She has a point. I can’t do either of those things individually very well, so there’s no chance of trying to do both at once. But then again, I’m not sure why she cares. Maria is the one cleaning up the mess. And it’s not like we’ve got company we want to impress.
“Sorry,” I say.
My mother nods, then chatters a little bit about work. Some deal she’s working on. Really, I have no interest in her work. I’m pretty sure Maria doesn’t either. But we both pretend to be listening.
After my mother has headed out the door, and my bowl of Cheerios is empty (although only about a quarter of it made it into my stomach), Maria wheels me over to my computer and puts on my headset for me. That’s when my day really gets started. When I become a functioning member of society rather than a useless cripple.
I’ve always been good at math and science, and I am currently three years into a doctorate in theoretical physics. Even though I live less than an hour away from Caltech, I am doing most of my work remotely for obvious reasons. Actually, the university has been really awesome about making accommodations for me.
My advisor is Dr. Middleton, who won the Nobel Prize in physics for his work in relativity. He and I Skype a couple of times a week, and maybe once a month I make the trip onto campus to meet with him personally. It’s a hassle getting there, but he always makes sure the meetings are worth it.
I can’t say that Dr. Middleton wasn’t really awkward around me when he first took me on as a student. It would’ve been weird if he wasn’t. But I can tell he really respects me now. He actually tells me that he hasn’t been this excited over a student’s work in a long time.
Sometimes I wonder if he would still respect me though if he saw Maria bathing me or changing my diaper.
It’s usually best not to think about things like that. It’s just depressing.
You might be wondering how I ended up in a doctorate program in physics in the first place. Believe me, it wasn’t an easy path. When you can’t control your body at all, including your tongue, people tend to assume the worst.
Including my own parents.
For the first five years of my life, I was treated like I was a retard. Those are the words I heard them use to describe me on multiple occasions: profoundly retarded. And it wasn’t like I could say, “No, I’m not!” In those days, I could only actually speak a few words, and my speech was impossible to understand.
When I was about four years old, my parents hired a nanny named Rita. After spending a few months with me, Rita recognized that I wasn’t retarded. She tried to tell my parents, but they just laughed and rolled their eyes. So instead, she started trying to teach me things on her own. She taught me words and math and even worked on trying to improve my speech.
At age five, I was required to undergo neuropsychological testing to exempt me from kindergarten. My parents took me to the office of Dr. Willard, a tall man with kind eyes.
“This is just a formality,” my father explained to Dr. Willard. “Graham is profoundly mentally retarded.”
Dr. Willard looked down at me in my wheelchair. Those days, I sat in a manual wheelchair and got pushed around by my parents or nannies. A doctor had already told my parents that I would never have the intellectual capability to control a power wheelchair.
“It’s still important to figure out his exact IQ,” Dr. Willard said. “Even children who are profoundly retarded may be capable of some basic level of communication.”
“Not Graham,” Dad said, shaking his head. “There’s nothing in there, believe me. Can you get an IQ score of zero?”
It just showed how little attention they paid to me. It was fairly obvious that I could at least understand language.
Dr. Willard escorted my parents from the room, leaving the two of us alone. He regarded me for a minute, studying my face. “This is going to be a challenge,” he said thoughtfully. “Graham, if I gave you three cards to pick from, do you think you could point to the correct answer?”
Dr. Willard smiled at me. “I have a feeling you’re smarter than your parents think you are.”
We were in that room for over an hour. I remember finding it fun, actually. He asked me questions about a lot of the things that Rita had taught me, and some things that she hadn’t taught me but that I figured out on my own. At one point, he gave me a math problem to do, and when I selected the answer, he blurted out, “Jesus Christ, Graham. You’re right again.”
When Dr. Willard invited my parents back into the room, they seemed very irritable. “What the hell were you doing in here with him all this time?” my father demanded to know.
Dr. Willard faced my parents with a serious look on his face. “Mr. and Mrs. Anderson, Graham is a genius.”
Dad started to laugh. “Yeah, good one.”
“I’m serious!” Dr. Willard insisted, looking somewhat pissed off. “Obviously my testing was somewhat limited by his communication deficits, but I’d estimate his IQ to be at least 150, probably more.”
My father shook his head, like Dr. Willard was putting him on.
“But, Doctor,” my mother said, “Graham can’t even talk.”
“That’s true,” Dr. Willard conceded. “He can say a few words, but his speech is very limited by his physical disabilities. I’d recommend you put him in speech therapy immediately to work on that. Regardless, his intellect is quite impressive.”
My father was still shaking his head. “Doc, you’ve got to be kidding me.”
“I assure you, I would never joke about something like this,” Dr. Willard said. “Graham is only five, but can read on a third-grade level. And his math ability… well, let me just say that it is quite impressive.”
“Graham can’t read,” Mom said firmly.
“Believe me, he can read,” Dr. Willard said.
I could tell, even at age 5, that my parents weren’t buying it. I was scared that they were going to march me out of there and take me to some quack who would confirm what they believed to be true of me.
“Would you allow me to give you a demonstration?” Dr. Willard offered.
“Sure, knock yourself out,” Dad said, rolling his eyes. “But I can tell you right now that my son is no genius. I’ve never heard anything so ridiculous.”
Dr. Willard lay three cards in front of me. One was a square, one was a circle, and one was a triangle. “Graham,” he said. “Point to the square.”
I pointed to the square.
“Good,” he said. “Now point to the shape that has three sides.”
I pointed to the triangle.
We went on like this for another 20 cards or so. I think I was getting all the questions right. I looked up at my parents after each answer, hoping to see them beaming with pride, but that didn’t happen. My mother seemed baffled and my father seemed skeptical.
“Are you satisfied?” Dr. Willard asked them.
“You know what I think?” Dad said. “I think you’re unintentionally giving him the answers. I think you’re looking at the card that correct, and he’s taking a cue from you. I heard even a horse can do that.”
Dr. Willard looked at him thoughtfully. “Okay then,” he said. “If that’s what you really think, why don’t you ask him a question that I don’t know the answer to?”
“Fine.” My father accepted a piece of paper from Dr. Willard, ripped it into three strips, and scribbled a word on each of the papers. He lay the papers down in front of me. “Okay, genius, read these names and point to the name of your nanny.”
The names he had written were Rita, Jane, and Mary. Easy. I quickly pointed to the name Rita.
I think that was the moment when my dad finally got it. He looked down at those names, then lifted his eyes to meet mine. He looked at me for a long time, like he was seeing me for the very first time. “My God, Graham,” he murmured. “I had no idea…”
My mother actually teared up. “Graham, sweetie,” she said, taking my curled up hand in hers. “I’m so sorry…” She looked over at Dr. Willard. “You must think we are the worst parents in the world not to realize how smart he is.”
“Don’t be so hard on yourself,” Dr. Willard said gently. “It can be incredibly challenging with a child like Graham to know what’s going on inside his head.”
Of course, Rita figured out that I wasn’t profoundly retarded after knowing me for less than a month. Dr. Willard figured it out in an hour.
“So what should we do?” Mom asked him.
Dr. Willard launched into a series of recommendations, including speech therapy and tutors that had expertise in teaching children with severe physical disabilities. I was listening at first, but I guess because of the excitement of everything that had happened, I ended up shitting my diaper.
Being incontinent has never been easy for me. Even at five years old, it was embarrassing that I still wore a diaper, because I was aware that other kids my age were able to use the bathroom on their own. It’s harder now, obviously, to be an adult who wears a diaper, but it was never any picnic.
I sort of hoped nobody would notice, but naturally, the smell of it quickly filled the room. I could see Dr. Willard’s nose twitch. My parents clearly noticed first and knew exactly what I had done, but they were probably afraid to say anything.
“Listen,” Dr. Willard finally said, when the stench was almost unbearable. “Why don’t you take care of Graham’s needs right now, and we’ll talk later about my recommendations?”
“Yeah, sorry about that, Doc,” my father said. He clapped me on the shoulder. “Hey, Graham, if you’re so smart, how come you can’t tell us when you need to use the bathroom?”
“Mr. Anderson,” Dr. Willard spoke up. “I’m sure you must realize how frustrating Graham’s physical limitations are for him. When you make comments like that, it probably makes him feel very badly about things that he can’t control.”
“Oh.” Dad actually looked embarrassed. “You’re right, of course.” He looked down at me. “I’m sorry, Graham. We’ll get you cleaned up. Don’t feel bad about it. It’s not your fault.”
I thought that day would be the start of an entire new life. And it was, in a way. My parents hired tutors for me, and I launched into a program of intense study. I started working with a speech therapist who helped me build my verbal skills to the point where I can speak pretty fluently, even though people who don’t know me well have difficulty understanding me. In my early teens, I got my talker, which really changed my life because it allowed me to communicate almost as well as anyone else.
I saw Dr. Willard again weeks later to complete my intelligence testing. He actually continued to be a presence through most of my childhood, helping to guide my education, and he remains one of my closest friends. I don’t know where I’d be right now if he hadn’t believed in me. I’m really grateful.
As for my parents, I guess I’m grateful to them too. After all, they shelled out the cash for all my tutors and therapies. They pay someone to take care of me so that I don’t have to live in an institution. It’s because of them that I’m getting my PhD right now. After all these years, they certainly recognize how smart I am.
But I can’t say there’s ever been a moment in my entire life where I felt like they were truly proud of the fact that I was their son.
To be continued...