It is hard to figure Linda out sometimes. She came in Friday night with the newspaper; “I wanted to let you know that two athletes died suddenly this week.”
“Thank you.” I said, “Uh....both from heart failure?”
“Mmmmm. Acutally three, but one was shot in the head in the back of a stretch hummer.”
“I don’t think that applies to me.” Linda nods. “And the others were heart related?”
She nods, “One was 26 and fell down dead the next morning, the other was in his 30’s and fell dead during a game.”
“And you came in here just to tell me this?”
She nods and then walks out. Mmmmm.........okay, thanks Linda.
Saturday was our first major wheelchair outing; we were going so I could build muscles, we would see if I kept fainting, what my heartrate was like (if using a manual wheelchair was going to work) and find out what problems might occur and help me if I couldn’t wheel back by myself. The whole trip took over three hours and was a mixed bag. I learned a lot about pavement. For instance, almost all pavement slants either slightly to the left or the right depending on the street (unless you are in someplace really flat like....Kansas?). When you are pushing the Bethmobile forward, the slant will also cause you to drift one direction or another. Then throw in tree roots throwing up sidewalk, potholes and a slight uphill and Beth begins to realize the sidewalks she walked over for a year thinking of them as “flat” was a pedestrians point of view. Now I have the point of view of a self propelled ball bearing. Also have to say planting trees right in the MIDDLE of the sidewalk might be great on some “green space” planning board but when you are going downhill using friction on your wheels to avoid these faceplant wheelchair traps, a PS2 obstacle course game seems tame.
We went to the library, where I sucked oxygen (and learned to “take breaks”), then to Hills Native Art, the Mall, up to Subways for lunch, to the bike store and home again. That is 40 blocks of rolling in all and about 2.5 hours longer than I could have lasted standing up, without one episode of passing out and only one use of oxygen. So, wheelchair seems to be a success.
Over the years Linda has sometimes complained that we never got matching rings to show our years of commitment to each other (thirteen!). So with a few weeks planning, I took her to Hills Native Art, which is THE place in North America to get genuine native artwork from living legends and multigenerational native artist families. I had put some rings on hold previously but we looked some more and in the end found rings that suited each of us. Linda was totally surprised, because I had used my final stash of squirreled away money (on the basis that medical costs are going to consume our lives for the next while, so spend it now!).
Linda got a ring from the same artist who did her bronze and silver bracelet I got her for her birthday. He is Don Lancaster, now in Alert Bay and a member of the Kwaguilth Nation. Her ring has the symbol of the wolf which is known strength, intelligence and devotion and is the family oriented symbol of West Coast culture. That seemed a pretty good match.
My ring which is tapered and slightly thicker is from the famous Haida artist Alvin Adkins (the Haida are probably the most famous of the native artist nations and traditionally only use black and red outside of metalwork) from the Queen Charlotte Islands (Islands far out to sea just south of Alaska; we visited them 8 years ago together). Now I like my ring, but it shows the hummingbird. “This isn’t by any chance a goth hummingbird that sucks nectar from people’s eyes while asleep?” I asked. No, I was firmly told. The hummingbird is a symbol of joy. Hmmmm, that didn’t fit. But wait, it is also seen as a companion of difficulty. Yes, I think we have a winner! (Maybe it was a “companion through difficulty”, whatever, Linda says, “a difficult companion”). Anyway, we now have hand-made one of a kind rings to show our commitment to each other. Linda is happy, I am happy. Then I almost face planted right outside the store.
See, a loaner wheelchair like mine has foot casters which you rest your feet on. Only, the street Hill’s is on, Government Street, has been redone in brick with long and deep sloped gutters for the rain. So when Beth rolls forward at speed to catch the streetlight, the chair rolls down, the footcasters hit the bottom of the gutter, the momentum of the chair continues forward lifting the chair (and me) entirely off the ground in a nice arc which gets pretty exciting for both those IN and outside the chair. Am I supposed to be looking STRAIGHT down at my feet?
Most streets have these “token” wheelchair inclines of which many are great if you want to spend a lot of time flying through the air (see, when there is a two inch gap from the street to the “ramp” you get to fly going down it and trying to come up on the other side of the street), the solution to this is a “wheelie” where, as your weight is over your wheels, you lean back as you give a hard push, lifting your whole foot assembly up in the air as you move forward over the bump or down gutter and then progress on. Doing wheelies has a steep learning curve, particularly as you tend to have cars behind you waiting as you try to get over the damn curb. I tended to do about 70% success rate but never actually got thrown from the chair on my failures. That 70% is at a stop, still working on doing one while in motion.
One thing I learned a lot about from my day was people. Some are cool and many are self absorbed jerks who have convinced me to convert my wheelchair to have pointy and spiked bits ala Ben Hur. Holding a door open for someone in a manual wheelchair is cool (particularly when the mall we visited doesn’t have a wheelchair door) Moving while walking so the wheelchair person has a smooth sidewalk which doesn’t involve hitting a bench, plant, telephone exchange box or the many other things cluttering a sidewalk is cool. The guy who asked me how tall I was, that was cool, if confusing (I am about 4’8” in the chair). Talking to me in a normal tone is cool. Talking to me at all, cool.
Okay, uncool: When I push the wheelchair door to the library and six people all walk in it and then stream around me as I have to wait for them to finish using the door I opened, which then closes on me. Staring at me for long periods of time with expressions that clearly show you are trying to figure out exactly why I am in a wheelchair is uncool. Hey you teenage boys, cutting directly across me while I am rolling to get where you want to go so I grab my wheels and slide to a stop.....uncool. People crossing the street who brush past me then step right in front of me while I am trying to wheel across in order to get ahead of everyone else are uncool. And for VERY uncool – the EIGHT elevators I had to wait for because people who didn’t want to walk to use the escalators at either end ran around me and jumped on the elevator before I could wheel forward; that includes the elevator that opened, said, guy said “No room” and hit the “close door button” (I was stuck on the third floor for about 8-9 minutes). Also, when I did finally get on an elevator, only one other woman would get on with me (about 5 more could have gotten on). “Do they think I am going to start flailing around?” I asked her. She looked away. That was pretty common. You want to get a 10-15 foot radius without people, just put a wheelchair along a wall and start sucking on some oxygen. People can’t wait to get away from you. My father drives transit in a wheelchair accessible bus and he says he has to hold out his hand to stop people as they crowd onto the bus, swarming past the person waiting in a wheelchair and then he tells them, “You have to back up, the wheelchair passenger has priority.” They blink and look confused and eventually, with some grumbles, back up to let the wheelchair passenger on.
So it was an education. I remember back in the UK, I worked in a cinema multiplex and we had some regular wheelchair patrons. Most of the other workers didn’t want to go near them, so I, after asking the first time if they wanted help (No was the universal answer) would walk beside them talking about films and what they had seen. I remember being proud of myself because I had pushed my comfort zone and talked to people in wheelchairs, and did so like they were normal human beings. I’m feeling pretty shitty about those feelings now, and of course the irony of being one of “those people” is not lost on me. As I said to Linda, “Why can’t they (people) at least be a bit courteous, I mean, I’ve been staring at their butts all day and I can still be courteous?” We stopped at Subway for lunch which had a severe angled ramp inside to comply with wheelchair regs, but no way to open the door while on it. Classic.
I didn’t see anyone else out in a manual wheelchair, but I can tell you, I am already dreaming about my new rigid one I will be fitted for on Tuesday. There are so many things I want to change about the one I have (make it lighter, lighter!). We stopped at a bike shop and had the tires filled to full pressure for the pavement (someone decided throwing a bunch of pebbles in all the pavement would make it “artistic” – also bumpy). I really am trying to be positive (you should have heard Linda who came home with a headache from the stress of seeing so many people leap in front of me to save themselves .05 of a second). It is just that before, what people saw was big ole me, and now I am defined first by the chair (like the people who talked to me in an 8 year old vocabulary).
We just have to redefine that perception somehow, like today, when we went to the Oceanside park where people go on weekends to walk their dogs. The dogs loved to come sniff the wheelchair and the owners loved to talk to me about their dogs so we met a lot of people.
But one thing is I am building a whole new muscle group, a whole new incredibly painful muscle group (last night on pain pills I was still hallucinating from the pain and believed that Jesus was trying to kill me. At 4 am, our neighbor started moving stuff in the room next to my bed and I started clawing Linda almost screaming, “He’s coming, He’s coming to kill me and you know he can walk through walls!” – it was a long night). During the outings my heart rate topped at 150-160, and after taking more breaks was a standard 130 bpm or less. This means I am now mobile, and will not faint, and will not go into oxygen deprivation and will not die (so a plus from the walking which now has those small side effects). I do however have to kick one annoying habit. When the chair, due to the tilt of the pavement, slides one way or another, I tense my legs, or thrash them from side to side. This is the wheelchair equivalent of the first two years after I got my driver’s license when I would drive and my mother would be in the passenger's seat beside me. Her feet never stopped moving and I could audibly hear her foot slamming the invisible “brake petal” against the floor. She also used to hold onto the side of the door with both hands. Anyway, I need to learn to relax the legs, and let the upper body and arms do the talking, no matter how much I tense my legs, I still won’t stop sliding toward traffic if I don’t manipulate the wheels with my hands and arms.
So this week I am going to try and go out every day; learn how to get on and off buses, build up those muscles in my arms and wheel smarter, not harder (like take a bus to the mall, wheel on nice flat floors, then take bus home). It is a new perspective and life, and not one I would have imagined four weeks ago; and hopefully they will find what is wrong soon and solve it and I will walk and run again and this will a part of my life that gives me an insight and empathy with the 1 in 200 North American’s in a wheelchair. But until that happens, this chair rocks (and sometimes feels filled with rocks....heavy rocks), today I wheeled myself to have lunch with Linda at a restaurant that I couldn’t walk to unaided even a couple weeks ago. So that’s a better life right now, one where I have choices. Please don’t take away my Goth card again but really, I do LIKE getting outside once in a while.
2 days ago