What I Want Read online

  Likewise, I knew that her parents had taken her on a cruise to Alaska for her sixteenth birthday. I knew that she’d been chosen as a finalist in an international violin competition and had flown to Germany during her junior year to perform with the Berlin Philharmonic Orchestra. I knew that she’d served as a camp counselor at a Christian camp in the Kawartha Highlands for the past two summers. I knew that her father was going to retire as soon as Bizzy was through with school.

  What I didn’t know, however, was whether or not Bizzy was still my girlfriend. We hadn’t exactly broken up or anything, but we also hadn’t seen each other in four years. And while we still wrapped up our conversations with our usual “I love you’s,” they seemed a lot less romantic and a lot more friendly-like than they once had.

  There had been more pictures over the years of her with more guys, too. Guys who had nothing wrong with them. Guys who might have been just friends . . . or who might have been more.

  In four years, I had still never worked up the nerve to ask.

  By the time I graduated from high school, I may not have known where things stood between me and Bizzy, but at least I knew what I wanted to do with my life. My dad (an engineer) had been steering me toward his profession ever since I was little. It really wasn’t too hard of a sell because I loved everything about math and science, and engineering was the perfect combination of the two. The only thing I was unsure of was what type of engineer I wanted to be, but Dad – unintentionally – had helped me figure that out too.

  Just as he’d always tried to figure out ways to minimize the impact of my cleft palate, Dad had also studied every potential treatment for symbrachydactyly that he could find. There are definitely some things that can be done if you have symbrachydactyly, but unfortunately, each treatment comes with its own set of problems.

  One thing doctors can do for you is to take bones from your toes and graft them onto your hands. They do this usually when you’re really little – like two. Then, when you’re older, you can go through a process called “distraction lengthening.” It involves a number of surgeries and a device called a distractor, which has two metal pins that are inserted through the upper and lower portions of your finger bones and are connected by rods. They cut the bone between the pins and rods and use the distractor to create a gap, which will get filled in with new bone tissue and make the fingers longer.

  Mom and Dad had been required to make a decision about that process long before I even understood that anything was wrong with me. I was already going through a lot of surgeries at that time because of my cleft, and the results of toe grafting didn’t seem super promising. Any new fingers formed are a lot smaller than normal ones and they often aren’t aligned with the hands properly. Movement is usually limited, too, plus it was likely that I would have had trouble running or walking if toe bones were removed.

  Ultimately, Mom and Dad had decided against it.

  Another option if you have symbrachydactyly is to have only your second toe removed and transferred onto your hand. They do this a lot if someone already has a thumb, like I do, because it gives the thumb something to pinch against (and just having your second toe removed doesn’t usually cause problems with running and walking the way having the bones of lots of toes removed does). This is something that can be done when you’re older, so Mom and Dad decided that I could choose that later for myself if I wanted to.

  I decided against it.

  Mom and Dad had never let me use my hands as an excuse for anything and had always acted as if I could do everything that everybody else could . . . and so I could. Sure, I might need to use a pencil or my teeth to help me do something, but I learned how to button and zip and tie and how to write and to type. I could scrub and scrape and clean, cut and chop and peel. Mom made sure I could do dishes, and Dad made sure I could throw and catch. There was really nothing that I couldn’t do. (Except play the violin. Bizzy had tried to teach me once, and I was horrible at it. Honestly though, I don’t think that really had anything to do with my hands.) And so, when I got older, I decided that I didn’t really want to have a toe transplanted onto my hand – I just didn’t figure it was worth it.

  Prosthetics are another option if you have symbrachydactyly. There are several types.

  One is cosmetic prosthetics. These are very lifelike (complete with hair and freckles) and their main purpose is to help you look normal. I had a set once but found I could hardly do anything when I had them on. They seemed to slow down every movement I made and felt so unnatural that I wound up stuffing them into the back of a drawer, resigning myself to the fact that I was forever going to look like a freak.

  Another type of prosthetics you can get, however, is called neural prosthetics . . . and neural prosthetics changed my life (but not in the way you might be thinking).

  Although there are lots of different types of neural prosthetics, essentially they all have one thing in common: they work with your nervous system to help make up for whatever it is that you’re missing.

  My sister Lily has a really common type of neural prosthetic. She was born deaf, and when she was little, she got cochlear implants. Doctors attached a series of tiny electrodes to her auditory nerves, and then to receivers. Small microphones, processors, and transmitters attach to the outside of her head by magnets, and the sounds picked up by the microphone are passed from the processor to the transmitter to the receiver and at last to the electrodes. The electrodes stimulate her auditory nerve so that Lily can hear. There are neural prosthetic devices for just about everything you can imagine: arms, legs, hands . . . even fingers.

  About a year after I got my moustache, Dad took me to Philadelphia to investigate neural prosthetics. The type we were looking at were very advanced, with sensors that picked up on subtle chemical and electrical currents from the muscles in my hands to control the prosthetic fingers. There was a definite learning curve, but by the end of one week I was able to use the prosthetic fingers to spear a piece of steak with my fork and cut it with my knife. I could also pick up a blueberry without crushing it and wind thread onto a bobbin (which, incidentally, was not something I planned on doing a whole lot of).

  Ultimately, however, we decided against getting neural prosthetics. They seemed to slow me down almost as much as the cosmetic prosthetics had because I had to think so hard to make them do whatever I wanted them to do. Supposedly everything would have become second nature to me after a while, but I didn’t see much point in getting them since I could already do everything that I wanted anyway. I was so used to my hands the way they were that I worried these new prosthetics would wind up in the back of a drawer like the other set had . . . and these were way too expensive to let that happen.

  So I ultimately left Philadelphia without any prosthetics, but I also left with a certainty of what I wanted to do with my life. I might have decided against neural prosthetics for myself, but the technology behind them was cutting-edge and amazing, and I knew that I wanted to be a part of it.

  I started looking into universities around the world and when the time came, concentrating on the ones that were leading the way in biomedical engineering. In December of my senior year, my top choice, Princeton, accepted me, and Mom and Dad took me out to eat to celebrate. Then, two weeks later – when Grace made the decision to attend school in California (on the other side of the continent) – I celebrated again.

  ~ ~ ~

  EARLY ON DURING my first semester at Princeton, I took an anatomy and physiology course. During one of our labs, while I was busy hooking electrodes up to the sciatic nerve of a pithed frog (to collect data about the relationship between stimulus intensity and response), our professor wrapped up her verbal instructions.

  “After you’ve made sure that the stimulus amplitude is at zero point two five volts and the pulse width is at zero point one, you should go ahead and apply a brief stimulus at the proximal end of the nerve.”

  I was ready to go so I hit the button and then read the computer screen. Sh
e walked by as I was recording the numbers, and I looked up at her.

  “Is this basically how they figure out where to place an electrode array in a cochlear implant?” I asked.

  “Well,” she shrugged, “it’s a lot more sophisticated, obviously, but yeah. Basically it’s the same principle.”

  I nodded.

  “How do you know about cochlear implants?” she wanted to know.

  “My sister has them,” I explained, and she nodded understandingly.

  “Can you imagine trying to get about a thousand of those placed just right?” she asked with a laugh.

  “A thousand?” I knew that Lily’s array only had about thirty electrodes in it and I didn’t think things had advanced that much since she’d gotten hers. Plus, I was also was pretty sure that limb prosthetics didn’t have that many either.

  “Optic nerves,” she said knowingly. “Major precision.”

  “Oh.”

  “Of course it’s still in its infancy compared to what they’re doing with cochlears,” she shrugged, “but you know . . . it’s just a matter of time.”

  “Yeah,” I agreed.

  After lab that day, I researched everything I could find about visual prostheses: the tiny cameras and transmitters, the neural interfaces of electrode array cuffs, the surgery to access the optic nerve . . .

  It would likely be years before the technology even came close to approaching that of other neural prosthetics, but I couldn’t wait to call Bizzy anyway.

  “Guess what I’ve been looking into?” I asked her.

  “What?”

  “Visual prosthetics!”

  “You mean like bionic eyes?”

  “You already know about them?” I asked, slightly disheartened.

  “Well, yeah,” she said. “But it’s not like it’s going to help me anytime soon.”

  “No,” I admitted, “but I’ve been studying up on it and it’s pretty cool.”

  “I suppose,” she said.

  “I think that’s what I want to do.”

  “What do you mean?” she asked.

  “I mean I think that’s what I want to go into,” I replied. “Visual prosthetics.”

  “Are you serious?”

  If there was another field in the area of biomedical engineering that was as advanced as this one, I didn’t know about it. Plus, Bizzy sounded pretty pleased.

  “Yeah,” I said. “I think so.”

  We talked for a bit longer and then she said that she needed to study.

  “I miss you, Bizzy.”

  “I miss you, too,” she said.

  It was almost a singsong voice . . . the same one she used to tell me that she loved me, too. It was the voice that made me feel like she didn’t really miss me at all.

  “No, Bizzy,” I said. “I mean I really, really miss you.”

  There was a slight hesitation, but then she said, in a much softer voice, “I really miss you, too.”

  “I was thinking that maybe I’d drive up there and see you sometime.”

  “To Montreal?”

  “It’s only about seven hours.”

  There was another hesitation.

  “If you don’t want me to–” I began, but she cut me off.

  “No,” she said. “That would be great if you’re sure that’s what you want to do.”

  “I’m sure.”

  “Okay,” she agreed. “When?”

  I went over my fall break.

  I couldn’t eat the day I left, and the closer I got to Montreal the more nervous I became. By the time I checked into my hotel and dropped my stuff off, I was on the verge of throwing up – even though my stomach was completely empty.

  I drove to the parking deck that Bizzy had told me to go to and texted her to let her know that I had arrived, counting on her text-to-voice translator to sound a lot more calm and collected than my own voice would have. She texted me back and told me to meet her by the main entrance of the parking deck. She said she’d be there in five minutes.

  Those five minutes seemed almost as long as the entire drive to Montreal had. Finally, however, I spotted her coming down the sidewalk toward me, holding tight to her dog Star’s lead. I headed in her direction, wiping my sweaty palms on my pants.

  “Bizzy,” I managed to say as I neared her.

  “Hace tiempo que no te veo . . .”

  Long time, no see, Marco.

  She broke into a broad smile and opened her arms for a hug.

  Bizzy introduced me to Star and then asked me if I was hungry. I told her that I was (even though I still wasn’t really sure I was going to be able to keep anything down) and by the time we got to the restaurant, I found that I was really glad she had a dog. Not only was I happy that Bizzy had the pet she’d always wanted and that Star allowed her a whole new level of freedom compared to what she’d known before, but I was also thankful to Star for helping me avoid all those awkward moments of silence that I knew would have hung in the air otherwise. Just having Star wag her tail at me when I first reached down to pet her put me somewhat at ease, and as the evening went on I found that any time an uncomfortable lull in the conversation arose, I could just ask Bizzy a question about Star and we’d suddenly have something else to talk about. That plan got me through the end of dinner (by which time I knew more about Seeing Eye dogs than most other people in North America combined).

  “So I gather it would be bad if I fed her a French fry?” I asked as Bizzy finished off the last of her drink.

  “Very bad,” Bizzy laughed.

  “Sorry, Star,” I said, looking down at the dog. “I tried.”

  Bizzy laughed again.

  I looked at her for a moment as she put down her glass, trying to read her face . . . trying for the millionth time to figure out exactly where I stood with her.

  Just the fact that she’d agreed to let me come up here to see her said something, didn’t it? Didn’t she have to know that I wouldn’t have driven all this way to see her if all I viewed her as was just a friend? Surely she must have known that there was more to it than that.

  “You’re awfully quiet,” Bizzy noted. “Everything okay?”

  “Yeah,” I said. “I was just wondering if you’re ready to go.”

  “Sure,” she said. “What do you want to do now?”

  “Um, maybe we could take a walk,” I suggested.

  “Sure,” she said again. “Let’s go.”

  Bizzy always kept Star on her left side, so I made sure that I set out on her right. We walked along in silence for a few moments because I couldn’t think up anything else to ask her about her dog.

  “You’re awfully quiet,” she commented again.

  “Just thinking what a shame it is that you don’t need me anymore.” I said it lightheartedly, with a deliberate laugh in my voice.

  “What do you mean?”

  “You used to hold my arm all the time,” I said. “But now that you’ve got Star you don’t need to.”

  “I didn’t need to then,” she smiled. “I just did it because I wanted to.”

  “Oh,” I said, and she slipped her arm through mine.

  After we’d walked for a few minutes, we came to a bench, and – emboldened by the fact that she was still holding my arm – I suggested that we sit down together. She agreed.

  We sat in silence and it didn’t seem so awkward anymore. She didn’t ask me why I was so quiet and I didn’t ask her about her dog. After a moment, I got up the nerve to reach my free hand out and touch her cheek, catching a stray piece of her dark, wavy hair with my thumb and gently brushing it from her face.

  She turned toward me and I looked at her for a long moment.

  “I’ve missed you,” I finally told her.

  “I’ve missed you, too,” she answered softly.

  “I’ve missed us,” I clarified.

  “Me, too.”

  “Really?”

  “Yes,” she nodded. “Why do you sound so surprised?”

  I pressed my lips toget
her and sighed quietly.

  “Because sometimes I wonder if there even is an ‘us’, Bizzy.”

  “What do you mean?” she asked, looking confused.

  “I mean I don’t know what’s going on between you and me.”

  “What do you mean?” she asked again.

  “I mean I want to know where I stand with you,” I said. “I want to know what I am to you.”

  “You’re my boyfriend,” she answered carefully.

  “I am?”

  “Well I thought you were,” she said, “but if that’s not what you want–”

  “No,” I said hastily, “it is what I want, but I just wasn’t sure because . . .”

  “Because what?” she asked when I hesitated.

  “Because I just wasn’t sure,” I said softly.

  She didn’t say anything.

  “I love you,” I told her quietly.

  “I love you, too.”

  “No,” I said. “I mean I really, really love you.”

  “I really love you, too,” she replied, a smile beginning to form on her lips.

  I reached out and touched the side of her face and I watched that smile that I loved so much spread and reach up to her eyes. Then I leaned forward and pressed my lips against hers and Star nudged my hand with her cold, wet nose. I rubbed the top of her head to let her know that everything was all right, and I kept on kissing Bizzy as if I hadn’t kissed her in over four years.

  I drove to Canada a lot during college – either to Montreal to visit her while she was at school or to Ontario, where her parents lived in Peterborough. Her mom and dad were always very nice to me, and I didn’t hate them anymore for taking Bizzy away from me when I was fourteen. They took me to a bakery in Bobcaygeon where I had some kind of pastry called a Chelsea bun that tasted even better than the lobster tail I’d had in Boston with my dad, and then they took me to the lift lock on the Trent-Severn Waterway, where they seemed very amused by my fascination with it.