First date, the good, the bad, and the "damn"

I mentioned a little about having a new boyfriend (I feel so high school just writing that). I want to take a moment to sing his praises, though he'll probably laugh when he sees this post.

First dates are always a bit complicated. They require me to decide how much to tell someone, and how soon to tell them. It's also a case of "what if my knee goes buggy on me, how do I explain that?" And our first date was no exception.

We met at a local restaurant, nothing fancy, just someplace to meet for lunch and talk and see if this was going somewhere. And he saw me on crutches. And it wasn't a big deal to him.

And then we went for a walk in the woods. A long walk in the woods. Ok, he walked, I crutched. And I definitely got more of a workout than he did. But it was fun. I never get to walk in the woods anymore, because walking in the woods leaves me open for falls where no one would find me, and cell service in those woods is a bit spotty. He found a way to give that back to me, without even knowing how much I craved it.

It was fun to watch him navigate between wanting to help me, and wanting to let me do things for myself. I'd say he fought himself pretty well. There were definitely times when he wanted to help and held back. But when I asked for help he was right there. It's unusual for me to find someone who gets the importance of letting me do as much for myself as possible. It's really unusual to find it in someone who has little or no knowledge of the disability community, with it's unique perspective and set of etiquette rules.

We followed with putting together a quick dinner at my place (there are limited restaurants in the area, and after dinner we would have been really stuck as neither of us are into the bar scene, so we decided to just go back to my place). At this point, I was doing pretty well, and feeling pretty strong. It's one of those rare days when I felt like I could handle the pain and I could do almost anything.

We traded off backrubs for a while. I actually have some training in massage thanks to a few fun classes while I was in college, and he may not have training in it, but he's good. It was nice to just relax and enjoy. It started at least in part as a way to loosen my shoulders after the long walk. And sort of progressed from there. Neither of us is easy on our bodies, so there were plenty of knots and kinks to work out.

And then it happened. I shifted, and my knee twinged, and I knew I was in trouble. And within a minute I was lying on the floor fighting to stay conscious with tears running down my face. It's a first date nightmare. I couldn't help but think that he'd run after this. Who wouldn't? But he didn't. When I said I was cold he got a blanket and held me (he's like most guys and has way too much body heat, it's not fair). When I simply couldn't fight it anymore I asked if would mind if I checked out for a while, jsut let go of consciousness and let my body do some repairs. Not only did he not mind, he took care of me while I was out.

It's rare for someone to be okay with seeing someone else in that kind of pain. It's rare for them to be so understanding. It's really rare for someone to see that, and still be willing to push them to go for a walk the next day.

Snow

Well, snow has come. I live in an area where snow is a fact of life for a large part of the year. And I love the beauty of it. I love how it coats the bare branches of the trees, and seems to erase the tops of the branches when the sky is a sullen gray. I love the clean look that snow gives the first day after a snow storm. I love snow, so long as I can stay safely tucked inside.

You see, snow is bad for my knee. It's bad for crutches, and worse is the thin layer of ice we seem to get under the snow. It's bad for my wheelchair. I actually got a little snow in my axle the other day, and I couldn't get the wheel back on until I had thawed it out. Of course, that means thawing it with my already cold hands, which I must then find ways to use to grip and propel the wheels.

I hate that my disability has robbed me of looking out at a snowy scene and seeing only the joy. This is one area, where no amount of accommodations can make me not disabled.

But i do have the chance to borrow a dog and turn her into a sled dog in the next few days. So hope springs eternal.

Sense of humor, or "wow, that joke failed"

Sorry for the break all. Work got busy, and I just couldn't face the idea of coming home and writing even more content after doing it all day.

Sense of humor. The truth is that there is often a fine line between joking about something, and being hurtful. I experienced someone who didn't know that that line even existed, and tripped right over it.

Here's the story:

I've recently been dating a really sweet guy. He's into bowling and I've occasionally gone to watch him bowl (I bring my knitting and it actually can be a fair amount of fun). There's someone on one of his teams that I'll call Sean for the purposes of the post. This guy is hardcore into bowling (around 30 games a week). Nothing wrong with that. I, on the other hand, haven't even tried bowling since I was about 5. I also use a wheelchair or crutches most of the time because of knee instability and pain from nerve damage. I've met the guy, and talked, but don't really know him well.

Sean texted my boyfriend and asked if he wanted to bowl a couple of games on Saturday morning (I was visiting for the weekend). I was fine with that. I even suggested that this might be the time to let me try and see if I could figure out a way to bowl. So we said sure and just checked that it wouldn't be an issue for me to join them (after all, I would be new to this and while I wouldn't try to hold the game up, I'm not likely to get a lot of strikes). His response was hurtful. To quote "Sure, just bring a shovel to scoop her up off the approach when her knee goes out on the slide". Cue me: Yeah, I know people say this kind of stuff all the time, but it caught me by surprise.

My boyfriend let Sean know that it wasn't cool, and that we certainly wouldn't be joining him Saturday.

And it got me thinking. Wiser heads reminded me that this was likely a joke that failed. And the truth is that from a close friend, I probably would have seen this as a joke. Over the years, I've had friends/family attempt to trick out my wheelchair (the Ben Hur spikes weren't really my thing, mainly because I like having hands on my wrists), joke about my crutches (which are ancient, and painted green), my knee, me falling down. I've been playfully called gimp, cripple, wheelie, and every other name they can think of. None of it bothered me.

So what's the difference. How do I explain to people that this is a situation where they could be really hurtful without meaning to, and that these are the kinds of jokes that you can only tell with close friends?

I think part of the problem is that people don't realize the history of discrimination, and so don't see it as something they have to be sensitive to. Most people would never walk up to a Black person they barely know and tell a joke that involves race as a punch line. But they don't see the same impact for people with disabilities. They don't look around and see the pervasive discrimination that I still face. It's an awareness thing. They don't see the store that isn't accessible because of one little step at the entrance, it just doesn't occur to them that that is a form of sayin "keep out". They also don't spend time talking to the people who are still discriminated against. The people who still can't get anyone to believe them, or help them, because of their disability. They haven't experienced people treated them like glorified pets simply because they use a wheelchair.

So part of the problem is that they simply don't get that disability can be a sensitive topic. It's just not part of their understanding. And the other part of the problem is that they don't seem to get that there are jokes you can make with a friend, and jokes you can make with a stranger. And you should probably ask yourself which kind you're telling.

If you've gotten this far, look around for a day and notice all the stairs you take and think that each of those is a giant "people with disabilities aren't welcome" sign. Then think hard about "joking" about that.

How many spoons do you have?

Many people ask me what living with chronic pain is like. It's a struggle to answer them. But it seems like someone finally (okay, a while ago, but I just found it) decided to come up with a way to answer that question. Thanks to the person who posted this link.

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf (warning, PDF)

The Spoon Theory is useful in describing the reason you can't go out tonight. Yes, I have time to do both the cooking and go out, but I don't have the energy, or the pain tolerance. No, I can't just put off my chores for too long, because I can't do an all out cleaning for an hour or two when it get's bad. I'm not a clean freak, this is just my way of coping.

It also helps to explain why I can have good days. And why I can plan for good days (mostly). So tonight I can go dancing, but only if I'm really good for a week in advance, and plan to do nothing else for the rest of the week.

And it makes the "I can't ever stop thinking of it" concept really clear. I'm constantly checking in with myself about how many spoons I have left, and what I need to spend them on today (not eating dinner is not a good option). It gives a glimpse into the mindset of having that loom over.

Thank you Christine, for putting into words the way I live my life.

Cool Wheels

A colleague just got some new wheels. I notice new wheelchairs (and random accessories) the way some people notice new fashion trends or haircuts. I also knew that she was in the market, so I was sort of keeping an eye out. Pretty sure it's this one:

The cool thing (for her) is that it's titanium. And the reason that's a good thing is "Now the airline can't break it". Last time she flew they managed to warp the frame of her chair. And while it was usable, it wasn't comfortable.

Sad that that was a consideration, but at least she got a cool chair out of it.

Assistive Techonology -Or why I love Roomba

So there's sort of a backstory on this. My Mom was going to get a Roomba for Christmas. I found one on sale for a great price, and I thought I'd really thrill her, since she does a lot of sweeping up sand and has been talking about getting one for a long time. Then 3 weeks later I went home to visit. And discover that my Mom had borrowed a friend's Roomba, and it didn't really help her, since there was too much in the way of furniture for it to get around. Of course, now it was well after the 15 day return policy. So I was stuck with the little red frizbe. I thought about selling it on Craigslist, but I figured it might be worth it to try.

Side note: I hate vacuming. It takes most of my energy and strength, and I can only do it in 15 minute bursts. Even in my tiny apartment that means it can take a while to finish. I'd much rather have that time for other things, and that energy can go a long way.

So, I pulled it out, and let it charge for the required (or at least recommended). Then I set it in the middle of my bedroom floor (well known for it's deposits of hair) and hit the little green butten. Can I just tell you, this thing is funny to watch. It starts in a spiral, and then works it's way around the room (even cleaning under the heating registers) and finally ends with a series of foreys across the floor. After a few minutes of giggling at it I shut the door and went into the other room. Other than the ocassional bump into the connecting door, it was actually fairly quiet. I went in after an hour, and it had stopped next to the dressor, and the whole floor was clean. It even got up the hair (I have long dark hair, so it often makes the floor look much dirtier than it is). I opened the canister, and was shocked at how much the little thing sucked up (I had actually cleaned two days before). What's more, with a quick swipe of the cleaning tool all the hair untangled from the brush (which is removeable, which makes it so much easier to de-hair).

The next day I left it to tackle the living/kitchen/dining/office room. That's a lot of furniture, and I was sure it would miss large sections. Well, it didn't. I was impressed. I figured I'd have to create little walls (yes, you can get virtual walls, but I don't have any) to pen it in so it would clean, but it did a pretty good job even without that.

This isn't generally what people think when they talk about assistive technology. But it saved me a lot of time and energy, and freed me up to have a better day. It's taken strain off my body, and having the vacuming done by a little robot amuzes me no end. This counts as an assistive device.

Someone asked me how I justified the expense. And it got me thinking. It wasn't cheap, even getting a great deal. But, neither is a dishwasher (and the Roomba takes a lot less space). A lot of people have dishwashers, even though they could do the dishes my hand. There is a slight advantage of using a dish washer, namely the heat, but either way will work. Many people consider a dishwasher an essential. My Roomba (and I'm actually starting to think of names for it) costs less, and benefits me more than a dishwasher ever would. So I think I keep the little thing. One more way that technology can make my life easer.

Treat me the same

Sorry about the delay in posting, life took over. If you're still reading, expect a lot of posts in a short amount of time!

I went out with a new friend the other day. And I mentioned that people treat me differently because of my disability. He was shocked (like I said, new friend). I told him it was fascinating to watch how people treated me differently when I was walking, using crutches, or using my chair. Then he offered to push me up the hill because he was worried about me, and I tried not to laugh in his face.

People treat me differently all the time. We went dancing that night (crutches mostly, you'd be surprised how well I can dance on one leg and crutches). Several people spoke to him (even though I was right there) about how cool it was that I was out there dancing. One guy decided to talk to me, and given the amount of drink he was doing I really wished he hadn't. At the end of the night, I could see understanding coming into his eyes. People treat me different. They can't understand that I'm just living my life, and while I might do it differently than they do, I'm not really doing anything special.

I went dancing. In my case, it involved crutches. So what? It doesn't make me better or worse, it just makes me different.

It was a good reminder to me, that with all the physical barriers I fight against, sometimes it's the attitudinal barriers that are hardest to overcome.