Emily, Lived By:

So I’ve been in a wheelchair for well over 24 hours now.  It has been stranger than I expected, but for different reasons.

Physically, it’s been much easier than I anticipated.  There are, of course, little inconveniences; say, it takes up to a minute of wrangling to open a door.  I discover my soap & moisturizer are out of reach. It’s cold to take a shower seated upright above a bathtub.  But I’ve always been at home with physical discomfort, in fact, I kind of enjoy it.

Lucky me, because I’m getting sick.  It feels like my lungs are full of honeycomb & wool (the itchy kind).  Do you think it’s because of all the germs I get on my hands from wheeling?  It is, of course, inevitable that this project will take a physical as well as a psychological toll on me.  Eg., a few weeks ago I got lemon juice in my eye & experienced absolutely no sensation.

Anyway, I also thought it would be nearly impossible to navigate the day’s tasks… & it would have been, alone, on the first full day in a chair.  But I wasn’t alone for most of it.

After waking up, I transferred out of bed & then, eventually into the tub where I took my 1. shower.  It wasn’t the indulgent affair it usually is for me (I’m world-renowned for ridiculously long showers) but it did the trick.  Getting dressed in a wheelchair is certainly difficult.  But I’m very glad I store all my clean clothing in a heap on the floor.   Bella’s estranged father happens to live in Vancouver & he came by with his girlfriend (my friend Shannon) to 2. take the dog for a walk. Bella hasn’t seen him in around three years so it was a little much for her to take in.

I 3. sprayed on some of Shannon’s perfume. I like the smell, but it was supremely uncomfortable.  Obviously.  I mean, it was just how you would expect wearing someone else’s perfume to feel.  

Round & round, all through the town

After the man headed off to the library Shannon & I checked the bus routes.  We wheeled over & waited.

You all want to know about people’s reactions.  Well, I can tell you: they’re different.  They’re different in the way you’d expect them to be different.  I presume that what you mean when you want to hear about people’s reactions is that you want to hear about the emotional reaction I have to these different reactions.  Honestly, it doesn’t particularly bother or surprise me (though I’m sure it would be different if this was my permanent condition), so I’m less inclined to write about the predictable awkwardness of strangers.

Still, ok: there’s the expected range of reactions.  A lot of pitying looks, a conspicuous absence of male interest, a lot of social discomfort (where should I stand? Should I offer to help? Don’t stare!) etc.  I kind of enjoy it, at present.  I always feel exposed in public, &, perhaps oddly, I like the feeling of invisibility disability gives me.  Don’t get me wrong, I don’t advocate this kind of lack of awareness on your parts.  Generally, I think everyone should be treated as human.  However, I feel like an odd & in some ways inhuman person, & I guess at the moment it’s a relief to have a visible marker of it.

Look carefully at that finger on the right. This is the most you'll see of Shannon all year.

Perhaps it’s because for the past several weeks I’ve had to be so extroverted in a way that doesn’t come naturally to me.  Now people look at me & don’t see me or don’t want to– good! I don’t want them to either.  I was a little giddy with the knowledge that I could behave however I wanted & get away with it.  Once on the bus, I kept thinking I could scream “WHY, WHY, WHY!” the whole ride to Granville Island & no one would put me off.  I would just get sympathetic, uncomfortable gazes.  In my normal life, I experience a lot of reactions from strangers, but sympathy almost never.  Only when I fall down the stairs or in the street, which is often.  Clumsy!

By the way, if you hadn’t already gathered this, I 4. Took the bus.

I also like how people now treat me as if I’m some sort of gentle saint.  I mean, really, I eat it up!!

A man with no teeth came & stared at me & then asked “What happened to you?”

“It’s a long story,” I told him.  “A very long story!”

Then we kept wheeling along.

It’s funny to need people.  It’s funny to need them so badly that you have to pay them to accompany you!  I’ll be doing a lot of that this week.  It’s funny to feel like it’s only right to pay someone for spending time with you.

Spent some time under a bridge with crow.

Shannon & I wheeled around Granville Island & through the market, to see what it was like.

Actually, I found it not much different from navigating those crowded passages in an able body.  Except, of course, you’re much shorter, slower & everyone stares.

Check out my wheels

We were supposed to 5. Eat lunch at the Indian stall. Neither of us felt like Indian, but it wasn’t my choice to make.  I hung around, as several people skipped past me in line, & attempted to see into the display case.  I wasn’t quite the right height.  Eventually, we managed to order.  We got four chicken samosas.

Mr. Cellophane should have been my name

They were adequate.  We ate them outside, where Shannon refused to let me take her picture.  “Just the back of your head!” I said.  But apparently she hates the back of her head.

We went for a second lunch of steak & a bottle of wine.  The food was mediocre, the conversation certifiably excellent.  The waitresses were, of course, concerned & solicitous.  So I felt more comfortable than usual sending back my steak.  It was cooked medium & I wanted (…needed!) rare.  I’ve always had an uncommon bloodlust.  I’d eat all meat raw if I could.

I considered my packaged leftovers my 6. Groceries for dinner.  I ate them for dinner, after all.  My goodness gracious.  I can’t believe I’ve eaten two baked potatoes today. How things change.

Then I picked up 7. Groceries for the week.

Four fine balls of mozzarella.

Missions accomplished, we 8. Took the aquabus home.

What lies beneath?

Do you see the little kid staring?  Totally normal.  I found I liked being at eye level with children.  What I didn’t like, however, was that as children would stare at me with absolutely natural curiosity, their parents would nervously redirect them in such a way that they would realize (often, likely, for the first time) that there was supposed to be something shameful, pitiable, & taboo about physical infirmity.

Upon arriving home, I took a long nap.

Then I headed out to 9. Meet friends at a bar of my choice. I met Krissy & Ray at the bar where I swing-danced with Simon on Wednesday.  I thought there would be a nice parallelism in this.  But it was too noisy for them, & there was a $12 cover (the bouncer pityingly waived it for me) so we went out to walk the streets.  Eventually we ended up elsewhere.

We had 10. a few drinks & talked on a few topics (generally depressing: eg., forced marriage & rape of female virgins before execution in Iran).  Then I10. danced in my wheelchair outside the bathroom.  Very briefly.

Staying "alive."

Fortunately, the bathrooms were also accessible.

The caption of the year

Now I’m home. Soon to bed.  & another long day in the office tomorrow.

All night last night I dreamed normal dreams.  But whenever I walked in my dreams, I would remember that I was supposed to be in a wheelchair.  Then I would feel a horrible sense of guilt at having failed to follow my orders.  Then I would forget again & keep walking. All through the night.  Was very relieved in the morning to discover this wasn’t the case.

I’ve realized, over the course of the past few days, that there’s really no way to accurately simulate the experience of a paraplegic. I can feel the muscles in my legs working involuntarily all the time… helping brace me, keep my balance, etc.  I have managed not to flinch from cold water or unpleasant sensations, but I know that this is absolutely not the same.  Living like this, I can feel how strong my body really is, instead of the reverse.  So I am having two parallel experiences, really: I’m at once able-bodied & disabled.  There’s this mischievous feeling in my legs, which keep telling me walk! They do play along for the time being.  But I know that they’re there if I need them.

It’s only now that I begin to glimpse what it would really be like if they weren’t!