Owning A Few Things

I was in my living room one afternoon a few weeks ago, sitting across from one of my piano students. I enjoy teaching this particular student very much. He challenges my creativity, he learns very differently than any other student I've had, and he makes me laugh in every single lesson. This student, Conner, has Down syndrome.

I admit I was intimidated when I first took Conner as a student. I didn't know what to expect, and I didn't know if I had the creativity or ingenuity to teach someone with a learning disability. In our first lesson, I realized that Conner couldn't discern a beat in music. I worked almost that whole first lesson on hearing the beat and clapping together to songs with slow tempos... he couldn't do it and I wondered how long he would want to continue lessons. As weeks went on and we both kept working, Conner began to learn to clap with me, and he is now able to play a beautiful Mary Had a Little Lamb on the black keys. He practices everyday and has earned whatever improvements he has made. I love teaching Conner.

But I don't just love teaching Conner because of his unique situation, I also enjoy teaching him because of his unique personality that inevitably keeps me grinning in lessons. In one very special lesson, Conner pointed out something that made me stop and think about an important part of my self-perception.

I was sitting on the couch in the middle of the lesson as I listened to him review a few songs we had learned. I prepared to transfer into my chair so I could instruct at the piano, and I watched him observe me as I moved my legs manually, using my hands. In past lessons, Conner has shown concern for my recovery and said things like, "All better?" or, "Legs better?"as he reaches out to touch my legs. But on this particular afternoon he made a different comment. As I finally got into my chair and rolled up to the piano he muttered to either himself or me, "...Handicapped."

I died. Because it's already too difficult to keep attention on the piano, I try not to reinforce any behavior that would detract from that focus, but I definitely did not succeed this time. I laughed out loud, and before I could say anything his aid (who regularly attends lessons with him) said, "Hey Conner, so are you!" We all laughed even harder, including Conner. Then I turned to him and said, "That's right, Conner. We are both handicapped and that's why we make such a good team." Conner calls things for what they are, with only very little filtering.

My mission since injury has been to prove to myself and the world that I won't be deterred in any of my goals, aspirations, or dreams. In a way, I've tried to prove to myself that I don't have limitations at all. I even sometimes find myself daydreaming about horrible situations where, for example, I'm escaping out of a burning building without a wheelchair (who knows why I would be without it), and try and convince to myself that I could still make it. I have been unwilling to say to myself, "I, Carson Tueller, have some limitations".

But why is that so hard to say? Of course it's true, I know that, I've known it all along. But why has it killed me to look it in the eyes, even in my own head? I think it's because admitting that would somehow solidify that this unsavory reality is just that. My reality. My life. And it is unsavory (well, parts).

What I am beginning to learn is that I can go on undeterred in all my same goals, aspirations and dreams and simultaneously accept that I am limited in some ways, or that I have to go about achieving those things by different means. That word "acceptance" is a tricky one. I don't think it's so much about accepting that the reality exists, because I could have told you I had limitations a year ago (duh). It's about finding peace in our imperfect realities.

Let me share a small victory, and I mean small. Shortly after having that humorous experience with Conner, I was at the gym by myself. Whenever I go to the gym alone I understand that I'm taking a risk since I have to find, uh, creative ways of working out. Some of these methods include transferring onto workout equipment. On this particular day I was attempting to get onto a shoulder press machine, which has a seat at a pretty intense incline. I was transferred but one of my legs slipped off of one side and ultimately ended up on the ground. Normally this wouldn't be such an issue because I could just scoot over to my chair and transfer up, but one of my leg was kind of twisted around the base of the machine making it impossible for me to adjust myself in any inconspicuous way. Oh, and I had basically de-pantsed myself during this ordeal, which definitely made me feel better about the situation.

Only moments after this, I was approached (while I'm pretzeled on the floor around this machine, with my undies showing) by a fellow lifter who offered to help me up. He moved my chair and I instructed him to move my legs here and there until I was freed. I thanked him, he offered his apologies for not knowing how to help better, and we went on working out. I was grateful for any help at all.

In the past, this kind of experience would have been supremely humiliating to me, especially because this helpful guy wasn't terribly bad looking... But for some reason, and definitely with the help of Conner, I've started owning a few things about my situation. I feel less embarrassed when I have to accept help in simple ways, even as a grown adult. I am beginning to own the chair and sometimes I don't even care when people see my skinny legs. I feel a deeper sense of self that is unattached to my level of able-bodiedness. Am I independent? Yes... but do I need help with some things (like stairs)? Of course. And that's getting to be more okay than it was in the past.

It has taken almost two years to even begin addressing my internalized stigma of having a disability, or to not care about the many, ever-present stares. It's taken a while for me to own my limitations, but it's starting to happen. Recognizing distasteful or unwanted aspects of each of our realities is difficult. I know I'm not the only one whose life is turning out different than imagined. But despite our dissimilar life experiences, I believe the process of finding peace is universal. It is the first step out of denial that we start to see reality for what it is, and not just what we wish it was. For me, peace has only ever come after weathering a storm I really never believed I would sail out of. Don't get me wrong, the storm still rages, but I'm simply grateful for these moments when I sense a spark of hope for life, or feel a fleeting feeling of peace. You know, like when a sunbeam breaks through the dark. It's that kind of hope that makes me feel (and just almost believe) that one day I could be deeply happy again.