The telltale Big Envelope and its contents:

It’s the only school I’ve heard from out of the 13 I applied to, but I’m pretty sure I’m going there.  It’s a great feeling to know at least I’m going somewhere.

In other news, ring watches are back.  This could have almost as great an effect on my future as going to law school.  There was a point today where I wished I had a ring watch.  And all this ring watch talk has led me to the question: should it actually be called a watch ring?

Maybe I’ll find the answer in law school.

“Here we go, Steelers, here we go, Pittsburgh’s goin’ to the Super Bowl!”  It’s the chorus of the Steelers fight song, and once again, it’s true.  It’s a weird sort of deja-vu-but-not-really for me.  The last time this happened was 3 years ago, when I had just moved to Philadelphia from Pittsburgh.  My roommates and I got into football because we missed the Burgh, and watching the games at the Fox & Hound (a sort of de facto Steelers bar, or at least it used to be, in downtown Philly) was a way to reconnect with others from there and just generally feel the PGH love.  Ever since then I’ve been a Steelers fan, but my life has changed in huge ways- that’s why I say it’s not exactly deja vu- more like just a cause to reminisce.

The aforementioned song is damn catchy, though not really a fight song like the Eagles have.  It was written rather specifically for Super Bowl XL, mentioning the old head coach and lots of retired players, and it needs updating.  In an effort to find a new version, all I could come up with is this playlist of pretty cheesy songs.

For your amusement: me during Super Bowl XL, which the Steelers won, by the way.That tshirt gets smaller every year.  I need a new one for next season- preferably a roomy jersey that I won’t grow out of.

I always think about New Year’s resolutions, but never make them.  2009 is shaping up to be a banner year: I made three.

• Read a book every 3 weeks
• Try a new recipe every week (I get stuck in recipe ruts sometimes)
• Find a song I like every week (my music rut is even deeper than my recipe rut)

I kept them simple and specific, because stuff like “read more” doesn’t cut it for me- I’ll never do it unless I set myself a specific goal.  And to hold myself to them, I’m keeping track in a spreadsheet.  I’m trying to get a widget to show up in the sidebar that will show you what I’m reading (and help me stay accountable to my resolution), but of course it’s not working.

My upcoming food blog will help me keep up with the new recipe resolution.  Yes, I’ve decided to join the zillions of other food-blogging vegans- as soon as I get my new camera.  Stay tuned for more on this.  What I can tell you now:  I have the best first name ever for a food blogger.

On my way back from New Hampshire in August I met a fellow wheelchair user named Sean and his girlfriend Liz on the plane.  It turned out he is also an athlete, so we chatted, exchanged contact info, and parted ways.  He is somewhat of an ambassador for adaptive cross-country skiing, so I thought of him when planning my trip home for Christmas and got in touch.  With short notice, he arranged for a ski for me, a place for me and my mom to stay, and an overall awesome experience.

I had better luck with XC than downhill skiing in my able-bodied days.  My mom and I used to ski at the nearby golf course on snow days.  But that was probably 15 years ago.  I love downhill skiing and trying new sports is like my drug (or maybe my anti-drug.  Remember those cheesy ads?), so I was psyched to give XC a try.

The setup is similar to downhill sit-skiing- you’re strapped into a frame that’s clipped into two skis.  You use two short poles- though not as short as I expected.  It’s quite strenuous, but not as bad as it might seem- and it’s a worthwhile workout.  On cross-country skis you can go places that you couldn’t get to in a wheelchair, like in the middle of a snowy field next to a rushing stream surrounded by mountains, which is just where I ended up.  It was beautiful and quieter than anything in my daily city-bound life.

We rigged up a tether system for ascending big hills.  Sean, who must have amazing arms, was able to basically pull me uphill with my ski tethered to his.  Another big (if unlikely) help was an apple slicer duct-taped to the back of my frame.  This allows someone to ski behind you and give you a boost with tip of their ski pole in the center of the apple slicer.  Whoever came up with this makeshiftly awesome idea should get a million dollars.

Me and my rig:

Sean and I in action:

More on my flickr.

I wanted to share this poem that describes an everyday occurrence for chair users- people holding a door open for you- and the feelings that often surround it on our end.  For more poems, essays, and other bits of disability literature, check out Wordgathering.

Wheelchair Blues
by Gary Winters

I know you mean well
when you spot my wheels
and make a mad dash
to the swinging door
in your goodness haste
and we do a dance
me giving you room
to maneuver so
I back-wheel aside
and allow you to
do your day’s good deed
help a crippled vet
you open the door
I use every time
I come to clinic
and feel rather proud
I do it myself
with two-handed drive
a swivel and lurch
then zoom right on through
like an offshore breeze
and keep on sailing
but you don’t know that
as you open wide
and stand there grinning

waving me on through
smiling traffic cop

I try to smile too
but it’s really hard
’cause if I blast through
I’ll run right over
your shiny new shoes

I was listening to WHYY the other morning and heard this opening line of a brief news clip: “2 nurses at the VA nursing home are charged with stealing from their patients, some of them wheelchair-bound”.  Now, I’m not even going to complain about their use of “wheelchair bound”- yes, it’s obnoxious, but it was a terse radio headline; I’ll leave it.  The part that I really didn’t like is how the fact that these patients were wheelchair users is used to make the charges seem extraordinarily heinous.  It’s like, it’s bad enough that nurses stole from their patients, but- oh my god- they even stole from people in wheelchairs.  It’s the whole wheelchair-user-as-person-to-be-pitied thing.  If I were the victim of a crime, I wouldn’t want people feeling extra bad for me just because I use a chair.

Yes, it’s terrible that those nursing home residents were stolen from by their nurses, but the fact that they use wheelchairs does not make it any worse than if they could walk.  The wheelchair matter is superfluous and didn’t need to be in the headline at all- except for the apparent purpose of dramatazing the story and making the bad guys look really really bad.

I have been promising Lee (up there, with the sign) I’d write about his new venture, Cut & Sewn, for far too long.  Well, not his own venture, but one he is dedicated to.  He’s Mr. T-shirt now.  And you can be Mr. or Ms. T-shirt too, for 30% off.  Cut & Sewn has several different syles of shirts, hoodies, and even undies that you can personalize with your own snarky message (or inside joke, or meaningless phrase) and choice of graphics.  Not feeling inspired?  Choose from one of their designs. I wore this Karaoke Kid hoodie all over New York City and it was comfy as hell and well-received by all.  I even got picked up in a Brooklyn bar with it on, so clearly it’s a guy magnet.

Until December 31st, use the code THIRTYOFF to get 30% off your fabulous Cut & Sewn purchase.  That’s a pretty good deal, if you ask me.  And whether or not you’re into cool shirts (though really, who isn’t?), check out their (not incredibly t-shirt-related, but very cool) blog Loose Lips, written by the aforementioned Mr. T-shirt, Lee.

Last weekend I attended (and spoke at) a symposium (“a meeting at which several speakers talk on or discuss a topic before an audience”) on Friedreich’s Ataxia at Children’s Hospital.  It was the first of its kind, and they plan to make it an annual event.  What sets it apart from the National Ataxia Foundation conference I go to every year is that it was exclusively about FA, and not hereditary ataxias in general.  It was a wonderful experience- I learned tons and was able to contribute by speaking about adaptive sports.

I often feel discouraged about the future of FA treatments; for so long we’ve been hearing that things are coming very soon.  But now I’m starting to believe it.  There are many different potential treatments being studied- not just Idebenone and Deferiprone, which are in human trials right now, but A0001, HDAC inhibitors, EPO, and others.  With so many possibilities, I feel like at least a few have to stick.  And someone made me feel hopeful about FA research by comparing it to the fight against cancer in these terms:  look at how many millions of dollars have been poured into research over decades for a disease that affects huge numbers of people, and there’s been vast improvements in treatments to be sure, but still no cure.  And for FA?  Far less money has been spent over less time on a rare disease affecting far fewer people- and we’re talking about a cure within the foreseeable future.  (A “cure”, by the way, will likely consist of what I heard mentioned many times last weekend: infant screening for FA + drug cocktail = kids who grow up having no FA symptoms, and are FAers by DNA only.)

Another highlight of the symposium was getting to hear- and meet- Dr. Dan Gottlieb.  He hosts Voices in the Family, a show I like on my local NPR station, and I didn’t realize he was going to be speaking until he rolled on stage (as he put it, “I’m not a quadriplegic; I have quadriplegia”).  He spoke about resilience- how to deal with something like FA in your life.  I appreciated his opening quip: “I never like to speak at events like these because I can never find any handicapped parking.”

While I’m sharing pictures, here’s me looking all knowledgeable while speaking about adaptive sports.  I shared the hour with Kyle and Gavin Kerr (the head of the PCAS board), and our segment was called “To Hell With the Wheelchair, Let’s Go Have Fun!”

I got many compliments on my speech- I think the word used most was “inspiring”, which I am amazed that I am.  I mean, I get it; I just never thought I’d be in such an inspiring position.  I think I motivated a lot of parents to go home and make their FA kids play sports.  I hope those kids enjoy it as much as I do.

In my post about the marathon I mentioned a film that NBC aired a few weeks ago about the 2008 Paralympics.  Well, you’re in luck, because they’re showing it again- this Saturday Dec. 6th at 4:30 Eastern time.  Watch it with tissues nearby- I sobbed throughout.  It doesn’t focus so much on the sports as on the stories of individual athletes.  This doesn’t make up for the complete lack of coverage of the Paralympics, but it’s something.

And it’s educational, too- I learned that Oscar Pistorius is HOT.  But, as I recall from my time in Cape Town, that’s standard fare there-  I swear, nearly every person I met was insanely attractive.

Flying as a wheelchair user may seem daunting, and it can be tricky, but I’m here to offer up my expertise in this subject.  Don’t fret- it may not be a painless experience, but it’s usually not too bad, and I hope that after reading this you’ll have an idea of what to expect.  I’m looking at you, Kyle, the inspiration for this post, who is trying to decide whether to take his new wheelchair on a trip to Philly this weekend.

Before you go: When you book your ticket, tell them you’re a wheelchair user.  Even if you book online, it doesn’t hurt to call and tell them what’s up.  I fly Southwest 95% of the time, and with them you can sit wherever you want to, but if it’s like most airlines and you have to book a specific seat, tell them you’d like one that’s close to the front and/or a bathroom.  If you can’t walk at all and need an aisle chair (the little chair that fits down the aisle of a plane), tell them that.  If you need an aisle seat for transfers, tell them that too.

When you get there: I prefer to check in inside.  I feel like the people there are a little more informed than the curbside check-in people.  Either way, tell them everything again, especially about the aisle chair.  The one that’s used on the plane (to get you to the bathroom) is different from the one used to get you on the plane (that one stays at the airport), so make sure there will be one on the plane, if you need it.

They should put tags on your chair- one for gate-checking purposes, one for damage purposes (they’ll write down your chair’s info and if it has any damage- this can be invaluable for proving that they caused damage during handling, which will happen sometime in your flying life).  Gate-checking is what they do with baby strollers and such:  they take your chair as you get on the plane, put it with the luggage, and give it back when you get off.  If you have a folding chair, ask for them to put it in the plane’s closet (see here).  Make sure your chair will be checked all the way through if you have a connecting flight- but tell them you need it during your layover!  No one wants to be stuck in a huge, awful granny chair while they pee, get overpriced snacks, and shop at the magazine store (or whatever other people do on layovers).

If you need help getting to the gate (I’ve pushed for what felt like miles to get to my gate before), just ask.

Security: Always a fun one.  If an airport employee is pushing you, you’ll bypass the lines.  I’m always by myself, and just wait in line until (often) I’m called out of it and brought up.  Put all your crap in the bin (ask for help if you need it- usually other passengers will jump to help).  The security person will probably ask you if you can walk at all- meaning, “can you save us the trouble of searching you and just walk through the damn metal detector?”  I always say no, because it’s safer and easier for me to stay seated.  They’ll bring you into the separate search area (which always has one of those mats that show where to put your feet, which cracks me up as I roll up to it) and bring your bin of stuff while you’re waiting.

A same-sex person will come over and proceed to pat you down.  It’s not really invasive, though it can be ticklish if you have crazy sensitive legs like me.  They’ll swab your chair with one of those explosives-detecting things, and assuming you haven’t been mixing up pipe bombs in the basement, you’ll be on your merry way.

Getting on the plane: You’ll get to be first, or at least one of the first.  Great, ’cause you always wanted to spend as much time as possible on the plane, right?  (Good news: you’ll be dead last to get off, too.)  If you’re sitting in the row closest to the door, you may just be able to wheel right down the jetway, into the plane, and up to your seat.  Anything further away and it’s the aisle chair for you- or making your way down the aisle holding on to seat backs/flight attendants, if you can.  I take my seat cushion off my chair and put it in my plane seat- no chance of them losing it in transit, and my butt stays happy.  Take off any other parts that might come off accidentally-  I sometimes take off my anti-tippers but have recently forgotten- but I don’t think those suckers are going anywhere anyway.

I usually ask a flight attendant, as they’re getting ready to get the show on the road, if they saw my chair make it on board.  I’m terrified that someday, as the plane taxis away, I’ll see my poor little chair sitting on the tarmac, or maybe waving to me from the gate like people did pre-9/11.

In air: Using the plane bathroom is best avoided.  I’ve peed once on a plane in the past two years.  But I’m lucky enough to usually only fly for a few hours.  If you’ve gotta go, I hope you can transfer easily from the aisle chair to the tiny bathroom…or else I really have no advice for you.  Sorry to be discouraging here.  But flight attendants are your friends, and will try to help.

Other than that, your plane experience will be largely like everyone else’s who’s stuck there, except you can’t get up and stretch, and maybe it doesn’t bother you that you have no legroom.

Afterwards: Like I said, you’ll be the last one off, since it will probably take them ages to get your chair.  As soon as you can, check it out to make sure they didn’t damage it.  If you do notice something wrong, go to the airline’s baggage office (which will be near the baggage carousel) and file a report.  Do this even if it’s minor- that’s how I got a free bottle of touch-up paint when Southwest scratched my frame.  And who knows- a little bump could turn into something bigger, so it’s best to have things on record.

At the baggage carousel, I ask someone to grab my bag off the belt and put it in my lap.  I can manage even big roller bags at least for long enough to get out to the cab/friend who’s picking me up.  If you can’t, ask a skycap person for help.  It never hurts to have a few ones on hand for situations like that.

That’s the bulk of my advice.  I don’t know anything about flying with powerchairs, but sites like this one will give you some tips.  I could go on about this for even longer, but I’ve spared you.  If you have questions I haven’t covered, please ask!  Or if you have tips of your own to share, I’d love to know.

Oh one more thing: moving sidewalks are FUN.  Especially when they’re empty, so you can go fast, and not get in trouble (I never have, but I don’t think you’re actually supposed to use them in a chair).  I hope you can get a little joy out of your wheelchair-flying experience by zooming down one of these.  Just don’t faceplant at the end.