Lucas Foss

RE-CALCULATING (Part 1)

Jonathan — who has quadriplegia (wearing a baseball cap) is sitting behind his drum set playing something — (something that he is engaged and connected with — in the moment) while the audience comes in. Ideally his wheelchair can't be seen by the audience at this point. When the house lights go down, he starts to speak.

( He is still drumming while he speaks part of this first paragraph — feeling the joy — background beat, etc.)

This is my favourite part of the show. This just sitting here, playing music, (rim shot - drumming stops for a beat or 2) before I start to speak. (renews drumming) Of course I'm speaking right now but you know what I mean. I'm just explaining something to you, telling you something personal about myself. (stops drumming)

Our relationship of sorts, has started just by you coming in and sitting down and seeing me on stage. And as I'm speaking, your mind is starting to organize who I am to you; categorize me in a way that makes sense to you. (Jonathan begins to take off his Velcro drum gloves.) that's the way minds work. And we are doing it all the time. And the more time we spend together, the more refined a category I will become. If I didn't speak at all, it would be harder but you would find a way. If I didn't speak at all, someone might think, I was trying to be funny and they may laugh, someone else might think I was trying to do some kind of avant garde theatre, if I didn't speak at all someone else again might get irritated, with this perceived waste of time and start to think of me as a… jerk. There would be lots of different interpretations because there are lots of different people here, who come from different lives. (finishes taking off his drum gloves)

(Jonathan comes out behind the drum set and rolls over to centre stage and faces the audience and as he takes his hat off — revealing his bald head, he begins to speak.)

What do you think of me now? Your mind is likely re-calculating. It reminds me of the GPS voice when you make a mistake driving, "Re-calculating." (sudden realization - drink) You know what? I'm recalculating too, re-calculating you, in your recalculation of me. But I don't know you at all. All I can see, are a bunch of faces and I can't even see your faces very clearly from over here. And so what is it that I think I know? (thinking) I don't know you or what you are thinking. (pause) I've done all kinds of shows before and I notice that if someone from the audience isn't looking at me or looking down or they are texting, or they have their eyes closed or they don't laugh when I think they should, or they look bored, or they're sleeping, I feel rejected and hurt because I take it personally. But really, none of those people are rejecting me. (discover) I've made everyone in that audience my rejecting father. And that's true off stage as well. Anyone who is in authority or is unkind, I project my father onto them. And maybe 10 percent of that projection is true but mostly it's false and so I'm living a false life in a certain way. I'm making decisions based on the wrong information. And if I can catch that falseness when it's happening then I…(pause feel into a moment of insight) (what you were going to say.) Hold on a second…something in me has just changed. I was playing my music, which I just love doing and then I stopped. I was feeling really good, so comfortable and relaxed being myself. I'm coming from a different place than my mind and I'm not worried about anything (pause - realize) …until it's over. (Take a couple of beats - pick up cigarette but don't smoke it yet) I don't really use my mind when I'm drumming. It's coming from somewhere else, maybe it's my body, I don't know, but then when I stopped drumming, my mind came back in, like a sling shot that's been held back and must release. And it flooded me with all the busyness that a mind has and then I lose that space I was in …and now I'm feeling this deep emptiness all of a sudden and I don't like this feeling and I don't want to stay here, it's way too much pain, … (realization) ah…so then I started talking to you about re-calculating, trying to distract myself and I'm desperate to find something else to fill me, to feel better. And I start looking for something outside of me that I think I don't have (find it) …This is my suffering, that I think I'm deficient. Yes, I think that there is something wrong with me. And I'm not talking about being in this chair, I'm not talking about having quadriplegia. These feelings were there before my injury.… (intensely) I'm talking about my heart. I'm talking about my defended heart. Everyone is not my father, every hurt I feel does not have to be infused with my father's hatred. The problem I have is all my history gets triggered more often by being in this chair because I get to feel rejection more than the average bear. And that's because I don't seem to be the average bear, I seem to be something different and some people don't know what to do with that.

(picks up cigarette and takes a drag) This isn't a real cigarette by the way — I'm not smoking tobacco — so please don't worry. it's a green cigarette, actually electric — there's nicotine in it which releases with each drag and I get a little kick in my lungs. I'm only blowing out vapor or steam but it does do the trick — helps distract me from the pain of the emptiness sometimes.

(takes a drag or swig) One of the things I used to really like, when I could get away with it, was when I was sitting in a regular chair at a house party or somewhere and people come in who don't know me and they look at me like anyone else in the room. it's somehow such a liberating feeling. I like it so much, just to be looked at in a normal way by strangers. I suppose it's not the most self accepting state to be in but I can't help how much I enjoy that experience. I can't get away with the chair thing at all anymore, as my body has lost its form over the years. So I don't look that normal, sitting in a regular chair. But now that I remember, (find it) one of the more enlightening things about that 'sitting on the chair experience' is that some people acknowledged me and others didn't. Some people smiled and others didn't. Some people didn't actually see me at all. This told me something. It told me that it's not just this disabled me that doesn't get connected with or rejected, lots of people have that experience. The last kid picked for the baseball team or not picked at all kind of thing. One time, at a house party and I was sitting there like a regular person and I was having a conversation with Janice, this really fun woman I'd just met, when this other woman came through the front door to the vestibule and was taking off her coat and Janice said "oh no, hope she doesn't come over here." I just said "what's wrong?" and Janice says …she won't stop talking about herself and her problems, you can't get a word in edgewise, her favourite expression is "ya but". The woman didn't come over and something in me felt relieved even though I had never met her but the mood had changed somehow between Janice and me and I was sorry about that.

Later in the evening, when it was time for me to leave, my chair got rolled out from the spare room and I transfer over and when I look up, Janice is coming come out of the kitchen and is standing there staring, with a shocked look on her face and she literally can't speak, the silence went on forever it seemed, although likely just a few seconds. Now, that other woman, Janice didn't like, she's there too and she laughs and says "hey nice ride, where can I get one of those?" I really hate those kinds of comments but she was cute. Her name is Barb and we ended up in relationship for a year or so and we still are great friends. I remember how shocked she was to find out that me being in this wheelchair meant more than 'not walking'. That it meant no bowel control, no sensation, no normal sexual function and intense muscle spasms. Barb taught me a crucial life lesson. One day we were driving to the beach and I'm angry and complaining that I want to walk my own dog and wash my own car and masturbate and have regular sex. I'm yelling with frustration. Barb just listens, she doesn't react or take it on or get defensive and this is the first time I see there is another way to be, other than reactive. I'm not enjoying my life with this anger. I hate myself in this situation but there were others that didn't.

I start to hear this acceptance more and more But Barb is the first person to say to me: "I like you, Jonahan, I don't see your disability." That really surprises me because actually, that's all I thought about.

I've only ever been in relationship with able bodied women. I just don't see how a relationship with a woman who has a disability could possibly work. We would have double the trouble with barriers and limitations. There are lots of great women out there who have disabilities, but I've never given it a chance, not to say they would want to give me a chance either.

I always liked the Sadie Hawkins dances, you know when it was up to the girl to do the asking. Then I don't have to worry about my awkwardness or embarrassment or stupidity or being rejected, it's out of my hands. So this was in grade 11, and before my injury, I was asked out by a girl named Julie, she has braces on her legs from polio and she limps quite noticeably when she walks. God I still remember how hard it was, I don't want to go out on a date with someone who has a disability, even if she is really cute. I want to go with a "regular" girl. I lie and say, "I have other plans that night but thanks for asking." So I don't go to the dance, we might have had fun. I wonder if she's still around.

Appearance is crucial in our culture that's for sure — things like clothes, cars, and people. It's an endless list. I get attracted to someone by the way they look and they get first opportunity to be invited into my life. Sometimes the idea of who this attractive person is, well it turns out to be not quite what I thought, when I get to know them a bit. I'm not saying that attractive people can't have as much inner beauty as anyone else. It's just that appearance isn't telling the whole story. And who is it that decides who and what is attractive anyway? Love is going on all over the place with all kinds of people with different shapes and sizes and colours. (takes a swig of water)

I get into so much trouble when I can't separate myself from the feelings I'm having. I remember when I was 13, being wildly passionately in love with Shannon. It ended badly and I was in 10 different kinds of pain and I thought I was this love sick, suffering suicidal adolescent.

There is no other inner voice or observer to give an objective perspective. Right after I swallowed the pills, something happens, … space popped in and I know I am more than my suffering, more than my feelings. I got lucky, well maybe it's not luck but Grace, I don't know but ever since then I've always have enough space to not take myself to be my feelings. Sometimes I get identified with a role, like being a good student or being someone with a disability, or a good son or loyal friend. When I think I am a role I have in my life, how I see things is limited. I used to think I was the best possible friend any person could have: loyal, true blue and all that. My buddy Rick, got really depressed when his parents broke up and I'm always trying to cheer him up and give him other perspectives but what I find out later is that he didn't want that at all, he wants someone to listen and understand what he was going through, not to try and fix him and make him feel better. I'm devastated to learn that I'm not being the friend that he needs. When I lose that 'good friend" identity, it feels like I'm dying, like I'm losing my sense of who I am. (pause) Of course I have so many identities, (pause) but none more powerful than with my body.

You can relate — we love our bodies, hate our bodies, change our bodies. We wish we had a body like "that" or we're glad we don't have a body like "that". We judge ourselves and others because of their bodies, their appearance.

And I notice when I judge, my heart is closed. And I can't see the person, their beauty and how much we are alike. And I know a lot of people don't see me. All they see is 'this' and they don't know what to do or say or they avoid me.

And it happens in an instant sometimes, an aversion of the eyes — they are trying to be respectful — not to stare, or they don't know what to do or how to be or what to feel but they are feeling something, even if it's numbness.

All the false smiles — being ignored is almost better, just a different kind of hurt. It bothers me that I'm not even given the chance to be seen or known beyond this body.

And I get it, but it hurts me, stirs up all those ideas I have about myself. I know that critical voice, same as you, I know the self hatred and that hopeless giving up place, same as you and I know the fear, same as you.

I'm the same as you. I am you.

Do you even know what makes you uncomfortable?

Is it the feeling you are having that is saying "God, I'm glad that's not me" Poor guy he'll never get laid. "Christ, I wouldn't want to live," couldn't do this or that. Ok these are feelings you are having or what your mind is saying but why does a feeling of discomfort mean a wall has to pop up between us? How will you find out what the truth is if you don't check it out? Let's have a conversation and you can be uncomfortable and maybe I will too. What's so wrong about being uncomfortable? Sometimes I just want someone to come and talk to me without it being some kind of sense of duty.

I mean these are the very same feelings I had about myself when I got injured. I lost a lot of friends immediately after it happened, some I never actually saw again, others I did see one more time, when they said "I can't bear to see you this way, don't want to be around me, it's too uncomfortable for them. Later on I lost friends because everything I do takes me 4 times as long: getting up and going in the morning, getting in and out of my van, anywhere I go needs to be accessible, they have no patience for me. But I'm still basically the same person inside, only my body had changed. I don't mean to say that was a small thing, it fucking wasn't and isn't. My whole life, present and future was altered forever. Even the past was altered. How could I enjoy memories of friendships I no longer had after they had rejected me? I even rejected myself. And in the beginning I had the very same attitude, if I saw a person with a disability I'd avoid them , go across the street, I didn't want to get lumped in with them.

I guess we all lose friends, basically because someone changes, and someone makes a decision, at some level, to end it or let it slip away. My change was the injury but for me it wasn't a choice. (drop water bottle — watch it) Ah the dreaded dropping of the water bottle, this is not my favourite part of the show. Can someone get that for me?

I have a friend of mine who has a bit of a pot belly and he says that he can go months at a time without looking in a mirror below his chest. He is so disgusted with his stomach. I don't know what that self hatred is about for him but I get it. In the beginning when I was faced with the reality that I can no longer walk, have regular sex, get myself in and out of bed, bathe myself, pick up anything, get through most doors, and a thousand other little things that are huge barriers for me, I was filled with anger and disgust. All of these rejections from the environment, I took very personally and they were very much an invitation to self loathing and hatred. And for a long time it was an invitation that I embraced, because it really felt like someone had died here.

But you have to remember I had a life before the injury. I have something to compare to and remember.… I have a young friend of mine, Sheila, who was in a snowboarding accident and got a head injury, when she was 18. It was pretty serious and she has real limitations in memory, social skills and fine motor dexterity. It happens just after she graduates high school. She's accepted into Queens University but now she can no longer do grade 8 math or English. She has to start all over again and she did. But it was hard and at first she hates being treated differently, even at school when she needs a note taker in class, a tutor and extra time for exams which meant she had to leave class and write in another room. She didn't want to "stand out" Sheila lost friends too. They slowly stop hanging out or calling. She sees them all heading on with their lives, moving out of the family home, getting careers, relationships, marriage and even children. Sheila can remember everything about the way she used to be and even with her courage to start over in so many different ways, she feels left behind and she is in a certain way, until her own life starts to take a new form and among other things she finds love.

How many of you actually know someone who has a disability? If Michael J Fox (Back to the Future actor) is your classmate and not famous — what is your response to someone who has uncontrollable spasms all over his body, who has Parkinson's Disease.

I remember this guy who was in my class when I went to Guelph University. 'Goo' as we called it. Anyway, Jason has autism and Tourettes syndrome and he's always waving his hand for every question the teacher asks and he makes funny noises quite a bit of the time. Jason is the smartest student in the class actually but he seems oblivious to anyone else around him. Maybe that's good because, eventually all the seats next to him start to be vacant and some students snicker. Jason didn't seem to notice and his feelings didn't seem to get hurt, I don't actually know if that's true. One day when no one wants him in their group when there was group work to do, he gets quite agitated. We bump into each other in line at lunch and end up having a conversation. It surprises me to learn that school is his whole life and all he does is obsessively study and how challenging it is for him not to make his noises and not to put his hand up all the time. Jason being upset about his initial exclusion from the group work is not about not being liked but rather that it is a barrier to getting his assignment done with an A grade. If he didn't get an 'A' he became really upset. The interesting thing that happens is that he has to give an oral presentation as part of his group work and this kind of public speaking is terrifying for Jason. But he did it, (pause feel this) with his eyes closed, my God and everyone sees his tremendous courage and heart and then the classroom energy starts to change and seats fill in around him.

I get confused too. I never know what to do when I pass by a 'little person'. I don't want to 'not' look and have eye contact as I might with any one else but on the other hand I don't want them to think that I'mstaring at them because of their size. I never know what to do. What would be so wrong to just talk to them and explain my discomfort and my 'not knowing what to do' feelings and hear their perspective because I actually don't know what it's like being them.

Half of the time I don't even know what it's like being me. You know, I think that I'm afraid to be angry or depressed around people, even friends because if I show those emotions like anyone else, then I really would be cutting down on the odds that anyone might want to get to know me, like having the disability is enough of a drawback. I can't have anything more on that side of the scales. (pause — swig) Because as you know, us folks with disabilities don't have any other problems like alcoholism, other addictions like porn or drugs, we don't struggle with parenting, or cheat on our taxes and we certainly are never criminals and we never judge other people with disabilities as lesser than ourselves. Ya, I don't like to feel the feeling of being rejected but I also don't like this fear running my life and holding me back.

doesn't everyone have some worry or fear of rejection. Have you ever gone into a bar or a club or pub or maybe you're at a wedding reception and you see someone across the room you're attracted to? Now, you don't know this person from a hole in the wall but even from across the room 'you can tell', there is something about them and you want to meet them but there's the fear you'll be rejected. So you plan what you might say, a good opening line that has humour in it. Sometimes I think that all you really have to do to make someone like you or see you is to make them laugh. You give them this great gift of themselves. Anyway, you remind yourself of how you are looking, what you are wearing, maybe check your teeth and breath and your heart races a bit at the prospect of going over and you're hyper-vigilant about the optimal time to approach this person, make sure you go over when there is an available chair so you can sit, this is no longer an issue for me or if you're cheap like me, you wait till after they pay for their last drink. And then it's now or never and you either go over or you don't. You have the courage to face rejection or you don't. Maybe your fear stopped you from even leaving the house in the first place.

 

Lucas Foss is a North Vancouver actor and playwright. He has been a service provider for adults with disabilities with outreach, agencies, federal government since 1976 and for the last 20 years, post-secondary and has disabilities himself. "Re-Calculating" has been performed 6 times since its debut in June 2012. The next performance is on June 12, 2103 at the Round House in Vancouver, sponsored by the Sam Sullivan Disability Foundation.