There are many more than two, of course, but these are the things that I’ve appreciated lately:

1. If I get hurt, it’s ok. I mean, I don’t want to get hurt- it would still suck.  And I’m not talking about serious injuries.  But a minor leg injury wouldn’t be a big deal in my daily life.  When I was training for the marathon on a handcycle last year, I suffered shoulder & elbow pain from overuse, which carried over into daily life and made it tough for me to get around at times- an arm injury can be crippling (ha) to a manual chair user.  If my knees or ankles get sore, well, they’ll get plenty of rest.

2.  People think I’m just an able-bodied person with a weird bike. Yesterday I was waiting to start my ride in Valley Forge when a guy on a recumbent bike (two wheels) came over and started talking to me about my trike, including asking me if this was my first recumbent.  I could have said, “Well yes, but I used to ride a handcycle, and before that I couldn’t ride a bike for ten years,” but I didn’t.  With my chair nowhere in sight, I was just an AB on an expensive cycle.  My disability is such a big part of who I am that it felt odd to realize that he had no idea.  I felt like I was hiding something from him, but in a good way- keeping my hilarious little secret of not being able to walk all to myself.

In case you couldn’t tell, I’m loving my trike.

I’d love to say I’d be a cyclist even if I didn’t have a disability.  But anyone who knew me before my diagnosis- hell, anyone who knew me 2 years ago- knows that wouldn’t be the case.

As I often recount in conversations, speeches, probably even a blog post or two, having a disability brought sports into my life.  When I was able-bodied I was terrible at anything physical (even the gym class I took called Lifetime Sports, where we played things like badminton and horseshoes).  It wasn’t until I discovered adaptive sports that I realized I loved the challenge of sports.

Last spring I started handcycling on a bike borrowed from my local adaptive sports center.  I fell in love with cycling, and though handcycling was great, I was inspired by Kyle to get a recumbent trike.  I really wanted to be able to use my legs- since they’re not too helpful for walking, I might as well put them to use on a trike.

In April I received a grant from a very cool organization called the Challenged Athletes Foundation, which helps people with physical disabilities participate in sports.  Check them out if you’re a disabled athlete and you need help funding sports equipment, prosthetics, training, or fees/travel for competition.  Thanks to CAF, I picked up my fabulous Greenspeed GT3 a few weeks ago, and am loving every minute of riding it (well, almost every minute- the climb from Fairmount Park back to my house is a killer, and of course it’s at the very end of my ride).

All by itself:

I couldn’t get the frame in pink, but at least I managed to get pink pedals!  And giving some love to CAF via the sticker they sent me:

Speaking of Kyle, he also got funded by Challenged Athletes for a new trike, and it’s a beauty!  Check out his video here.  Thanks, CAF, for all the miles ahead of us.

The 2009 National Ataxia Foundation meeting in Seattle was much the same, content-wise, as years past.  It was my 4th year going to the conference and the trend continued: I went to less actual conference stuff and spent more time socializing.  That’s fine with me; that’s really what it’s about for most of us young ataxians anyway.  I didn’t even present this year (clearly their programming has gone downhill!).

Kyle, fresh off Ride Ataxia 3, and me.  Kyle had a banana in his pocket.  For real.

Besides hanging with new and old ataxia friends, the highlight of my trip was my day out in Seattle.  It was wonderful to get out of the hotel, see the city, spend some time alone (and with PPKers!), and eat real food (I subsisted on Taco Bell and Clif Bars most of the weekend).

The White Lightning pizza at Pizza Pi- that’s white garlic sauce, artichokes, grilled onions, mushrooms, potatoes, and Teese vegan cheese.  I finished it off, plus a vanilla float.

Julie and I outside:

Weird graffiti on the chalkboard walls of the bathroom at Sureshot, where I enjoyed a soy chai and a donut.

I also thrift-shopped, used-bookstore shopped at Twice Sold Tales where there was an awesome cat, and got to see a lot of the city from the bus (I like to think of it as a 50 cent sightseeing tour, as opposed to the $20 one some of my friends went on).

As much as I loved spending the weekend with friends, I found that I really enjoyed traveling alone (even just around a new city for a day).  It’s inspired me to travel alone some more.  No big plans yet, but who knows?

More pictures here.  Next year’s meeting destination: Chicago!

When I started reading a NY Times blog post about this blog, People Who Sit In The Disability Seats When I’m Standing On My Crutches, I first thought, I like this guy’s style- it’s like if I were to publicly call out all the assholes who park illegally in handicapped parking spots.  But as I read further, and then actually read the blog, I realized this guy is just an angry jerk who needs to chill out and be glad he’s only temporarily disabled.

Matt Muro was angered when people didn’t give up the priority seats on the subway- labeled “priority seating for persons with disabilities”- when they saw him standing there on crutches he uses due to a stress fracture.  So he started taking pictures of these folks and posting them on his blog with vitriolic titles like “Hi, I’m an Asshole”.

I have so many problems with this I don’t know where to start.  So I’ll start by suggesting you check out the aforementioned “asshole’s” picture here.  He appears to be able-bodied, sure, but there is an open priority seat on each side of him.  So what’s the problem?  What is Mr. Muro complaining about?  The priority seats aren’t like disabled parking spaces- they’re not supposed to be off-limits to able-bodied people at all times- they’re to be vacated if someone needs them.  Two are vacant in the “asshole” picture.  I see no problem here, and no reason to call the poor guy an asshole.

I could go on like this forever.  But I won’t, so here are most of the rest of the reasons I think this guy is full of it:

• Many people have physical disabilities that are not visible.  There are myriad valid medical reasons why someone might need that priority seat that Mr. Muro (or anyone else) can’t see.
• A lot of the people pictured are SLEEPING.  What does he expect them to do, spot his crutches through their see-through eyelids?
• Dude, you gotta advocate for yourself.  If you need the seat, ASK.  Maybe you think the world should revolve around people with disabilities, that the seas should part for us (personally, I don’t; I just want to be treated like the normal person that I am)- but that’s not the case.  Speak up if you want to sit down.

Et cetera.  Basically, give me a break.  And every time Mr. Muro sees someone taking up one of his precious priority seats, he should comfort his poor hurt self with the knowledge that he is only experiencing a tiny fraction of a percent of the adversity that people like me experience all their lives.  Hell, if I could even get into half the subway stations I wanted to, it would make my life a lot easier.  Maybe he should focus his photoblogging efforts on the lack of stations’ accessibility, and put his anger to good use.

It’s that time of year again- Ride Ataxia time!  For three years now, my friend Kyle has ridden his recumbent trike to the National Ataxia Foundation annual meeting to raise money for FA research and increase awareness of FA.  The first year it was small and far, as Kyle and his dad rode 2500 miles from San Diego to Memphis.  Last year, around 50 people rode 650 miles (Sacramento to Las Vegas) in 13 days.  This year, about 80 people are expected as the group rides from Portland to Seattle in 4 days.

Clearly, this year is bigger than ever.  The ride is shorter than before, but that gives more people the opportunity to complete the whole thing.  It’s expected to raise more money than the first two put together, which is amazing to me.  In fact, this whole thing is amazing to me, and I’m so proud of Kyle for all he’s done for our cause.  I can only hope to someday be so cool.

Here’s what you can do:

• Read more about the ride and the cause at Ride Ataxia
• Track the ride via live GPS feed here
• Keep up with the team via Kyle’s blog posts
• Donate here!  Any amount helps.

And yes, that means I’ll be going to Seattle this weekend to hang out with my fellow ataxians.  I know you want in on the fun, but don’t worry, I’ll tell you all about it.

No one has ever just heard of Friedreich’s Ataxia, unless they know someone with it.  And why would they?  It’s rare (about 1 in 50,000 people in the US are FAers like myself), never mentioned on the news, and you’re never asked to donate a dollar to it in the grocery store like muscular dystrophy (though I am technically a Jerry’s Kid- MDA covers FA).  And it’s definitely not something a writer would give to a fictional movie character.  Until now.

Though it was made a few years ago, The Cake Eaters is finally being released starting this weekend.  It’s directed by Mary Stuart Masterson and stars Kristen Stewart as a girl with FA.  I’m dying to see it but dates for the Philadelphia showings aren’t available yet.  If you’re interested, check here to see if it’s playing near you.

I’ve read a lot of articles about the film recently and most, like this one, refer to Kristen Stewart’s character as “terminally ill”.  While I get that they’re just trying to briefly sum up the severe physical effects FA can have as well as its progressive nature, it’s not a terminal illness, and I hope the movie doesn’t paint it as such.  (FAers often develop heart disease, but it is by no means universal or inevitably fatal).  But I’ve heard positive reviews from people who know FA well, so I’m hopeful.  The minute it comes out in Philly, I’m wheeling my non-terminally-ill ass down to see it.

Here’s a trailer:

And finally, Mary Stuart Masterson, as quoted in the above article: “Do people with disabilities want to have sex? Of course. Everyone who is breathing wants to have sex!”  Indeed.

I went home to New Hampshire last week to cross-country ski and spend time with my mama.  One of her first remarks upon seeing me was “I’m sick of seeing you in those shoes.”  I asked what she’d rather see me in.  Something sensible.  And supportive.  And brown.

Now, my pink Chuck Taylors have become somewhat of a trademark.  Kooky old weathermen have their bow ties; I have my pink chucks.  I’ll see someone I met once months ago and they’ll say, “I remember your pink sneakers.”  As much as my ankles could use the supportive shoes my mother would like to see me get, I’m reluctant to give up the thing that seems to stand out about me (because apparently the pink wheelchair isn’t memorable enough).

So what shoes did she end up getting for me?  These gems.  They match my chair perfectly, they’re somewhat more supportive than my pink low-tops, and apparently, they’re mom-pleasing.

It had been a while since I’d tackled a new sport, so I was psyched to go indoor rock climbing with PCAS a few weeks ago. When I arrived and the front desk guy mentioned “the blind group” that was coming that night, I was a little concerned at potentially being the only one with a physical disability. But it’s not like that’s ever stopped me before.

The rest of the group came, and indeed, I was the only physically disabled one- the rest were able-bodied volunteers and visually impaired people I know well from other PCAS activities. It’s interesting to consider the different challenges that we face while climbing- I can see the handholds, but have a hard time making my hands and (especially) feet get to those spots. My blind friends have average (well, actually, above-average, since they are very fit) balance, coordination and strength, but can’t see where to grab on to lift themselves up the wall. As you can see, it’s not a matter of who has it easier- we each have different challenges.

My biggest challenge to rock climbing was my lack of proprioception in my lower extremities. Proprioception is the sense of position of parts of your body in space. To use a basic example, if I’m sitting at a table (so that I can’t see my legs), I often can’t tell if they’re crossed or not. My neurologist tests this by moving my big toe up and down- I have to close my eyes and say which way he’s moving it. I usually can’t tell. This became an issue in rock climbing when I couldn’t tell if my foot was on a foothold or not. Or, for instance, if someone below would shout up, “there’s a foothold six inches to the right of your right foot”, I wouldn’t be able to get my foot there without looking, and even then it would be tricky.

To adapt for this, it helped to have someone climb up next to me and guide my feet into place. You can see Reid doing this:

Another thing that helped me immensely were ascenders- basically extra handholds attached to ropes, which were much easier for me to grab than little, slippy handholds. Apparently paraplegic climbers have used these to climb great distances. All I can say to that is, man am I glad I have my legs to help.

I also learned how to belay (that is, being the person on the ground attached by a rope to the person climbing, as a safety measure). I thought it was awesome that we had blind people on belay for other blind people, or for sighted people, and me in the mix too. It was just another example of how disability really doesn’t have to be disabling at all.

Note to guys who want to dance with me at a bar/club:

Do not ask my friends if you can dance with me.  Ask me, jerk.  Or just start dancing, like you would with any other girl.  But don’t ask my friends, and when they say “ask her”, proceed to sit on my lap and shake your ass.  That means you, guy at Mad River tonight.

I think it’s cool when guys try to dance with me, because I’m sure it takes balls to try and dance with a wheelchair chick, but there’s lots of ways to go about it without being a jerk.

Got it?

Last week I mentioned the dearth of good, new Steelers songs.  Thanks to the Post-Gazette’s Steelers Sing-Along Fight Song Contest, we have some new songs to enjoy.  None of them are really fight songs, and most aren’t all that catchy (“On the Road to Sixburgh” sounds like a sad breakup song, rather than a “holy crap we’re going to the Super Bowl again” song).  But I like “Steeler Ladies (Put a Ring on It)”.  I think if you’re not going to go the chant-y, classic fight song route (think “Fly, Eagles, fly….”), parodying an existing song might be your best bet- at least people already know the gist of how it goes.  Though “A Yinzer Anthem” also gets points from me- despite its non-derivativeness and lack of fight-song-ery, it’s sung by a pretty Yinzer-sounding guy, or at least one who does a good impression.  It makes me feel like I’m back in the land of Primanti’s, Jine Iggle, and gumbands.

Now that I voted for my favorite, it won’t let me go back and listen to the songs.  So if you vote, give them a good listen first.  And remember, this is the year we get that one for the…ring finger on the other hand.