In talking with other members of the transabled community over the past 9 months or so, I’ve noticed something. To borrow the transgendered community’s language to use for transabled issues as Sean does, a lot of us seem to ‘crossable’. By that, I mean people that are transabled, but pretend other disabilities at times, learn/use skills related to other disabilities without pretending, or other similar things.

I know quite a few people who blindsim at times, but have no desire to actually be blind. People who need a sensory impairment, but who use a wheelchair at times (or have a desire to use one at times), without needing/wanting anything affecting mobility. Then there’s me, who (obviously) needs MS, but at times wish I could be deafblind for a period of time. Not permanently, it’s not a need like having MS is. It doesn’t cause depression for me, it doesn’t cause any major issues really, it’s just there in the back of my mind. Sometimes it comes to the front for a time, and I’ll spend more time reading braille, less time interacting with the world in a sighted/hearing way, but it’s just fundamentally different than MS is for me. I don’t pretend to be deafblind in public, nor do I have any desire to. I use braille, use computing devices designed for blind/deafblind people, but have no desire to need these devices to get through daily life as I do with my wheelchair.

I’m not sure why so many transabled people seem to have this in common. Is it because we probably tend to be fairly involved with the disability community in general? It doesn’t seem to be, because non-transabled people involved in those same communities don’t have any desire to crossable as far as I’ve ever known. Is it because we’re so involved with other people pretending that we want to experience other types of pretending ourself, to know what that’s like? That seems more likely to me, as a lot of transabled people I’ve met seem to also be curious about disabilities other than the ones they need. It’s likely a combination of things, and likely different for each person.

I don’t have any good answers here, just observations and more questions.

No posts for a month! People keep asking me when I’m going to post again, and now seems like a good time.

Just over one month ago, I went out on my second trip on wheels. Since then, I’ve spent every weekend on wheels, and today for the first time wheeled to work. I’ve gained lots of strength, lots of confidence, and lots of wheeling knowledge and skill over that time. It seems like about a year ago since my last post!

I haven’t been making posts these days after each trip, because it’s just become… normal. Not to say that I’m about to stop wheeling because I’m not getting anything out of it, just the opposite! It’s not a huge event that requires planning and such anymore, it’s just something I do, head out on wheels. I should post more general-transabled-stuff, but haven’t really been in the mood to do so lately. It’ll come back to me (the wanting to write about it, I mean), I’m sure.

That said, going to work on wheels today was a big event for me, and a scary one. My workplace is very open and accepting of pretty much anything, and everyone’s used to me using my crutch[es], but I still worried a lot about what people’s reactions would be. At this point, I wasn’t worrying about any logistical obstacles, I’m good enough with all of the physical aspects of getting around the city on wheels that I rarely worry about that any more (except of course making sure places I’m going are accessible!). I headed in to work this morning, navigating through my neighbourhood to the transit stop near me (after getting up my front steps, which reminds me of how much I need to move), on transit to work, through downtown to work, and up to the office. I headed in a bit early, to try to beat most people in and reduce the amount of stress I’d have passing a bunch of people’s offices and cubicles on my way to my desk. Wheeling down the halls to get to my desk, I was actually less nervous than I’d feared I would be. As planned, the office was fairly quiet as I headed to my desk, and nobody commented until I got all the way to my desk. A co-worker 3 cubes down popped his head up and said ‘hey! you’ve got wheels!’, and came over to look at my chair. Working in a technical field as I do, the first question he had wasn’t really a surprise. ‘What material is that frame made of? It looks light.’. I almost laughed at having been so worried about the ‘oh my god! why are you in a wheelchair?’ questions, when I should have known my co-workers would be more curious about the technology and build of the chair itself. The rest of the day continued along similarly, with the most common comment I received being ‘good morning Robin’. Same as every other day. About the only acknowledgement anyone gave that something was different were a few ‘hey, that’s new’ comments, before going on to talk about work topics. I couldn’t have asked for a better reaction from all my co-workers, everyone treating me pretty much exactly the same as they always have. I’ll likely keep using my chair at work on worse days, and use my crutch[es] at work on less-bad days, rather than wheeling all the time. Though that said, I’m sure Marie will mention that this was my original plan with my crutches too, but that became an all-the-time thing. Time will tell, but I can’t see myself using my chair 100% of the time any time soon really.

The city I live in has a bunch of the downtown office buildings interconnected with tunnels, which makes it easy (especially while wheeling) to get between the connected buildings. Some of these connections aren’t level so there are elevators and lifts, some of which require keys (as certain kinds of lifts legally require training before you can have access to them in this area), so I had an appointment in the morning today to get said training and be issued a key to access the lifts. This was probably the part of my day I had been stressing about the least, as it was someone who didn’t know me, which I knew I’d be fine dealing with. The training was uneventful as expected (it’s a lift, there’s not much to it!), and I now have a key to access the lifts in the tunnel system, which will make getting around quicker and easier (as without a key, you have to wait for security to come and operate the lift for you).

That’s about it, I suppose. I’ve just been reading over my older entries on this site, and remembering back to the first time I went out wheeling, which was almost exactly 3 months ago today. It seems like years at this point, really. The notes from the first trip (point 6) refers to a half hour trip because of an out-of-service elevator, where I had to travel from one end of a mall to another to use a different elevator. That trip, that took me about half an hour 3 months ago, took me about 3 minutes this past weekend. That first trip out, I worried that I’d never get good enough at this to get out without being exhausted and in pain by the end of it. Now, using wheels saves me large amounts of energy. I’ve come a long way in 3 months, if I do say so myself.

I headed out for my second wheeling trip today. The long delay between my first and second is due to the fact that I live in an area that has snow all winter, and I figured wheeling while there was tons of snow around was likely not a good idea while a new wheeler! My first wheeling trip was during a break in the snow, and now it’s spring so the snow’s all gone.
It was wonderful. It felt right. I came home and was just… happy.
I don’t think I’m going to post a big entry about this trip, because it was just a short little trip out to have lunch with a group of friends downtown. It didn’t feel like a big event, it just felt like a trip out. It just felt right.
A few quick notes from this trip:

1. I worry too much about what other people’s reactions to me using a wheelchair are going to be. I got together with a group of friends this morning, some of whom knew I use a chair sometimes and some of whom did not. Nobody reacted in any way, really. Everyone just treated me like they always do. A few people ooh’ed and aah’ed over my chair being ‘different than your average wheelchair’ (it being a Quickie GPV and not a depot chair!), but that was it. If only I could remember this whenever I start to worry about people’s reactions!
2. All the routine things you have to learn when first wheeling are much, much easier after even a little bit of experience. This was only my second trip out, but all the little things like curb cuts, ramps, streetcar tracks, etc. were all so much easier than the first time.
3. When you’re wheeling with someone else (someone else walking, that is), nobody asks if you need help, in contrast with wheeling alone. I know people are just trying to be helpful, but it gets annoying to be asked by every person walking by if I need help or if I’m waiting for someone to come take me somewhere.
4. Getting used to wheeling in the community is as much about route-finding as it is about learning to actually operate my chair. On my normal route between my house and the nearest transit stop, there is a mild uphill section, then a mild downhill section, then another mild uphill section. Mild if you’re on foot, anyway! I decided to try a different route while wheeling today, and discovered I can cut out about half the slopes on the way, making it much easier to get there. I also discovered today that getting off transit somewhat uphill of where you want to be is much easier than getting off at the closest possible stop, which may be at the bottom of a hill. Wheeling a longer distance at a slight down grade is a lot easier than wheeling a short distance uphill!
5. I really need to move to a more accessible house so I can do this more often without needing help to get out of my house.

It’s been awhile since I posted part 1 of my first weekend out, but due to busyness in my life and depression issues, I hadn’t been in a place and mental state to write. Here’s the next installment in my weekend!

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I wheeled into the upper level of the subway station nearest to my house, extremely glad to finally be on nice smooth indoor flooring. I took a few minutes there to rest (there was nobody else around in this part of the station at this time/day of the week so nobody would come up to me and ask if I was okay, as they had been every time I stopped to rest on the way there) and got some cash out of an ATM that was there, to make sure I had some money for the rest of my trip out. Once I felt my arms were up to working again, I headed down through the maze of 4 elevators to get down to the platform itself. This part of the trip, which I had initially expected to be one of the hardest parts, was actually quite easy! I had imagined navigating through elevators, up and down ramps, and through the gate system controlling access to the fare-paid area would be more difficult than it actually was. It was much easier pushing on the nice smooth floors, and having been through the station many times before meant that I knew exactly what route I needed to take to get where I wanted to go.

I got to the gate where you have to pay your fare in order to unlock it, and two construction workers working in the area opened the door using their key and held it open for me. One of them explained that they weren’t the type to make “people like me” worry about a fare, so go through. I think I said “Bu… I…” before deciding it was easier to just go through than argue with them. I had an unlimited transit card in my pocket that I would have used if they hadn’t done that for me, so I felt no guilt in not paying a fare (little did I know this was just the beginning of an entire weekend of having employees wave me through without a fare!). Having decided not to argue with them, I thanked them for the help and wheeled through the open gate, heading across the wide open floor to the elevator that would take me down to more elevators, eventually leading me to the platform.

I waited patiently on the platform until the next train came in and, crossing my fingers that I wouldn’t catch my wheels in the gap or look silly in some other way, lifted my front wheels to clear the gap and wheeled onto the train. No problem! Knowing I only had a minute before the train started moving I considered using the wheelchair lock. Deciding against it as it looked overly complicated, I wasn’t sure it would even fit on my chair, and I’d never seen any other wheelers use it on all my years using our transit system, I wheeled to the doorway opposite the one in use and locked my wheels as the train started moving. I’d done it! I was on the train heading downtown and my trip had been, for the most part, completely uneventful.

The train trip itself continued to be uneventful, I sat and watched things go by for the 45 minute trip downtown. We arrived at the stop I was going to get off at to visit one of my friends and I wheeled off, again carefully making sure not to catch my front wheels in the gap. Making my way up to street level, transferring from elevator to hallway to more elevators, I started getting nervous again. Being on the subway is one thing, I have no trouble pushing, there’s no slopes, no difficult terrain to move over. Being back out on the street, I’d have to deal with all those things again. I wheeled into the last elevator (getting much better at quickly and smoothly lifting my front wheels by this point to clear the gap leading to the elevator car) and pressed the button to head up to street level…

To anyone curious, I do still fully plan on keeping this site up and having new content. I’ve been struggling with depression around being transabled (and just general random depression) for awhile now, and it’s become much worse over the past month or so. I don’t tend to feel like writing as much when I’m having depression issues, hence my lack of updates for the past month.

I’m still out here, and do plan to write more in the fairly-near future.

Being transabled is really, really awful some days. Other days, it’s only mildly awful. Today is not one of those mild days.
Today is one of those days where I cry myself to sleep, and wonder how I’m going to live with this for the rest of my life. Today is one of those days part of me wishes I’d kept hiding this, rather than dealing with it (but another part of me knows that’s not a long-term solution).
Today is one of the days I hate being transabled.

Last weekend, I went out wheeling in public for the first time. I posted my quick notes when I got home, but I wanted to put together a full summary of my trip now.

Friday night, I was having a really rough time transabled-wise, and started planning a trip for the weekend where I could spend all weekend wheeling (figuring that was about the only thing that was going to make me feel any better). As I don’t drive, I couldn’t heed the rule of “don’t wheel close to home”, and it also meant that I’d be in my chair the entire weekend, wheeling on and off of transit as I made my way around (in hindsight, this resulted in a trip much more tiring than I had expected!). I booked a hotel downtown, figured out a bunch of stuff to do during the weekend, and went to sleep more nervous than I’ve been in recent memory.

Saturday morning, I woke up and got ready as usual. I finished getting ready, packed my backpack with stuff to get through the weekend (being careful about weight, having never wheeled with a backpack on my chair before!), made sure I had enough air in my tires, and figured out how to get my backpack attached securely to my chair. That was it, I was ready to head out. One more issue… I live one level below ground, and it’s a flight of stairs to get up to the street. The only way to get up the stairs would be to roll my chair up on its back wheels, and once I get to the top, I’m on the sidewalk of a fairly busy street. I stayed right inside my front door for close to an hour, terrified to go out but at the same time knowing that if I didn’t, I’d not feel any better, and would end up regretting it for a long time. Eventually, I just did it. Opened my front door, got my chair up the front steps on its rear wheels, and up to the sidewalk! …and my next door neighbour was standing at her front door. We chatted for a minute about the fact that she was selling her house, then in the middle of that she said ‘oh my god! you’re in a wheelchair?’. I explained about needing it sometimes when I was going out for longer periods when I’d have to do a lot of walking, but that normally I got by okay on my crutch[es]. She was fine with that explanation, and we said goodbye… and I wheeled down the street for the first time.
It was absolutely terrifying, and wonderful at the same time. I was really scared everyone was looking at me, knowing I didn’t really need the chair, but at the same time determined to not care if they were. I started getting a little nervous as I got near the end of the block, knowing I’d have to deal with a curb cut for the first time, preferably without being tipped forward out of my chair ;). As it turned out, getting down the curb cut was actually easier than I had expected. I got to the opposite side of the street without any issue…and got stuck there. I couldn’t get up the cut. Due to the amount of sand and salt on the road and the fact that there is a little indentation in the ground right in front of the cut, my rear wheels were just spinning there. Not quite knowing what to do (as I’d been wheeling outdoors for a total of about 5 minutes at this point), I gave up on getting up that cut and rocked my weight backwards as I wheeled back in order to get back out onto the street. Being on a reasonably busy street (and somewhat embarassed that someone may have seen me try to get up onto the sidewalk and fail), I needed to get back up onto the sidewalk as quickly as I could. I wheeled around the corner to the cut intended for people coming from the other direction, which was relatively easy to get up. Finally up onto the sidewalk, I started wheeling down the street.About 3 feet later, I realized the street that looks nice and flat from a walking perspective is actually quite a hill, at least for a first-time wheeler. Fairly slowly made my way down the street, down a few more blocks, down and up a bunch more curb cuts, making my way to the nearest subway station to my home fairly uneventfully.
About one block from the subway station, I looked up at the entrance to it (up a fair size hill), and for the first (and last) time during this trip, seriously considered giving up and going home. I was so tired already at this point, and I hadn’t even been out for half an hour yet. I decided (fairly quickly!) that the tiredness was more than worth it, and in a few minutes I’d be on the subway and have an hour to rest anyway. I was going to make it through the weekend no matter how tired I was getting. I wheeled up the hill and (being glad it had an automatic door opener, this early on in my experience) into the upper level of the subway station…

I just came back from spending my first weekend wheeling out in public. I wanted to jot down some quick points, before I put together a full report of my trip and post it in a day or three.

1. Wheeling really does make you invisible to most of society. For the most part, you get ignored even when trying to get someone’s attention.
2. As an exception to the above, if you stop wheeling for more than 3 seconds anywhere other than at an intersection, almost every single person passing by will ask if you’re okay, or if you need a push. This even applies if you’re obviously doing something with your hands like switching songs on your iPod or something.
3. I’m glad I thought to take off my push handles before I went out, because I’d have been pushed without people asking if I hadn’t. More than once I heard ‘You don’t have any handles! How do people push you?’.
4. Transit in this city is easier to use (along the main routes I used this past weekend) than I had expected. 5 points to the local transit authority.
5. Not one transit collector asked for any form of payment for transit. Everyone just unlocked the gate and waved me through without asking. I would feel guilty, but I have an unlimited transit card anyway, it’s just weird that nobody ever asked to see it. In the 10 years of transit taking I’ve had on feet/crutches, I’ve never been waved through without showing my card or paying.
6. Elevators being out of service, which are medium inconvienences when I’m using my forearm crutches, are major half-hour-detour inconvienences when you’re wheeling.
7. Streets that you think of as flat when you’re walking, you realize are very very not flat when you’re wheeling.
8. Curb cuts are extremely variable in quality. Some are a nice smooth transition from street to sidewalk, and some… aren’t.
9. Streetcar tracks Suck. The one main scare I had while out was not lifting my front casters off the ground in time, and getting pitched forward in my chair as they got stuck in the streetcar track while trying to cross a road. Luckilly I wasn’t moving that fast, and I didn’t get tossed right out. Shook me up a little, though.
10. What is considered an ‘accessible’ hotel room may bend the definition of the word ‘accessible’.
11. Getting through doors is much easier than I had expected beforehand. This is a good thing, because about 25% of the door opener buttons in the city appear to be malfunctioning/broken.
12. The worst accessibility issues I had while out were while visiting a friend… In a hospital! I find this ironic. The doors to the ‘accessible’ washrooms were too narrow for me to get through.
13. I massively, hugely underestimated how much physical effort this trip would take. I knew it would be hard, but I had no concept of how hard it would actually be. I failed to take into account that when I read other people’s entries about their first trips out, they are usually driving, so wheeling times are broken up by driving times, and they’re not dealing with block after block after block of sidewalks, curb cuts, and hills. I think this is why I ended up underestimating how hard this is at first.
14. Despite the issues I had, the extreme tiredness I’m having now, and the pain I spent last night and tonight in from pushing myself way past my physical limits… That was so worth it. I’m still on the high from it.

I’m back. Have been for awhile, but hadn’t felt much like writing until tonight.
Someone brought up something about leading a double-life in a comment to a previous entry, and I figured I’d write a full entry on it.

I live a double-life. Most transabled people probably do, in one way or another. Right now, some people in my life (mostly those who I haven’t known for very long) know me as a girl with MS, the rest of the people in my life know me as a girl without. I spend a lot of time managing these two identities, making sure the two don’t collide, making sure disability issues don’t come up in conversation when two people from the different groups are in the same place. Being careful who gets which story, based on who they know and who they talk to. Spending hours nervous as people in the two groups are in close proximity. I wonder what I’m waiting for, some days. Why don’t I just start ‘migrating’ the old identity to the new one? Once that’s done, everyone would see me as a girl-with-MS, and I’d have no more double life to manage. No more worries about who talks to who. I think part of me is waiting to see if therapy helps me at all, as I’ve just recently started with a new therapist. I’m not really thinking that it will be very helpful, but I think at least some small part of me wants to make sure it’s not helpful before I start making drastic changes in my life to accommodate this. I’m sure part of me is a little scared to do so, also. It’s a big change. I’m not sure how well my partner will handle it, as I know they would rather not see me as having MS.

But I would still have a double-life, even if I rearranged identities so everyone ‘knew’ I have MS. A number of people in my life know I’m transabled, and the rest don’t. Still a double life. A double life that’s much easier to deal with though, when compared with the ‘triple-life’ I have now. The people who know I’m transabled are people I’d trust to not say anything, even if in the presence of people who ‘know’ I have MS.

So what’s stopping me? We’ll have to see how the next few months play out, as I get into therapy and see how that works out. Right now I just want to stop living this double life and sort this out already.

It’s going to be significantly harder than I’d initially anticipated to be without my chair for a week. I’m heading out of town for a week starting tomorrow, and as I’m very new to wheeling, it’s staying at home while I head out (it’ll be quite awhile before I’m confident enough for air travel with it, I think!). I’d thought, originally, “hmm, that’ll probably be a bit hard, having to leave shortly after receiving it”. As with most chair-related-things, I’m finding my emotions around it are significantly stronger than expected. It’s going to be somewhat of a rough week, in that respect.
I’ll survive. It’ll be here when I get back :)