brokenclay.org/journal

Jessica Galli Explains Wheelchair Racing

Katja — Tue, 15 May 2012 02:53:50 +0000

A nice introduction to wheelchair racing from Paralympian Jessica Galli:

Packing Light: Four Days in Phoenix

Katja — Sun, 22 Apr 2012 16:34:15 +0000

Packing for a four day trip to Phoenix. Two travel days, two days of meetings. Day time temps will be 95-102, night time temps in the low 60s, and the temperature indoors may be in the high 60s.

On the plane:

Green tunic, leggings, ankle boots, jacket, scarf. This green scarf is a very stretchy lightweight knit that is almost as large as a pashmina when stretched out, so it can pinch hit as a small blanket.

Day 1 of meetings:

The same tunic, a black stretchy pencil skirt, flats.

Day 2 of meetings:

Black tank top, cropped turquoise sweater (the heaviest thing I am taking), scarf, same skirt, same flats.

For the return trip, I’ve got another tunic which I will wear with the leggings, boots and jacket.

Here’s my packed bag (pen included for scale):

In addition to the clothes, the bag contains:

12 inch laptop (underneath everything)
portable bicycle pump (also underneath everything)
wheelchair tools (in red mesh bag)
liquids:
- jojoba oil
- toothpaste
- sunscreen
- dry lube for wheelchair
other toiletries (toothbrush, nail file, meds, rubber bands, sewing kit, hairbrush)
packable backpack in tiny blue bag – this Sea to Summit daypack has a 20 liter capacity and weighs under 3 ounces. I’ll use this to carry my laptop and work stuff to and from meetings
swimsuit, goggles, swim cap
collapsible cane in side water bottle pocket
another couple of scarves and a pair of tights in case it’s really cold in the air conditioning
a book

The bag under the wheelchair (purse equivalent) contains wallet, phone, keys, work ID, and will fit into the backpack for boarding the plane. That’s it!

Adjustments

Katja — Tue, 17 Apr 2012 03:16:41 +0000

My brain is having trouble adjusting to this whole walking thing.

Thursday night we went to a friend’s clarinet recital in Denver. We found the place, we parked, we walked up to the door. The concert was being held in a small art gallery, with one large step into the building and then a full flight of stairs up to the gallery. I started hyperventilating, and then I realized that I could just walk up the steps.

I’ve got a couple of short trips coming up, and thinking through the logistics, I realized that I need a smallish cross-body shoulder bag, like a messenger bag (I hate wearing a backpack) to use as luggage, since it’s hard to carry anything large/heavy using crutches. I went to REI and found a nice bag. I could fit my computer in here, I thought, and a couple of changes of clothes, and my wheelchair tools, and my tire pump…tire pump? By definition, if I’m using this bag, I’m walking, and don’t need a tire pump.

(My husband and several friends have talked me out of this idea of going on a 4 day business trip without the wheelchair. “Face it,” a friend said, “If you don’t take the wheelchair, and you need the wheelchair, you’re screwed!”)

Wheelchair Racing and the Fear of Falling

Katja — Fri, 30 Mar 2012 21:10:28 +0000

Here we are at the beginning of the racing season. The weather has warmed up, and it’s time to hit the road and get some training in. I’ve been hunting for an event or two to do before the Bolder Boulder 10K on Memorial Day. Sadly, a lot of the 5K, 10K and half marathon events in the Boulder area are on dirt; the dirt trails around the Boulder Reservoir and Coot Lake are very popular for running races. The racing wheelchair just doesn’t do well on dirt and gravel; it’s like trying to ride a high performance racing bike on that kind of surface.

I thought the Horsetooth Half Marathon in Fort Collins in April might fit the bill; I emailed the race director to ask about participating. Now when you email a race director and tell him you’re a wheelchair racer and will there be any issues if you enter his race, you get (or at least I get) one of three responses:

Fabulous! We’ve had wheelchair racers before, and we know just what to do!
Fabulous! We’ve never had a wheelchair racer before—anything special that we need to do?
Um, ok.

Three or four days later I got response #3, with the added caveat that the course is very hilly, and that they wouldn’t be able to provide transportation from the finish line to the start line.

In the meantime, I’d been reading runners’ reviews of the race, and people were pretty unanimous that this was an awesomely hilly course, especially the first 4-5 miles. They were also pretty unanimous that this is one of the most beautiful courses anywhere.

A couple of days ago I packed the racing wheelchair up in the back of the car and drove to Fort Collins to see for myself. The course starts at the Colorado State University football stadium, on the west edge of town. Rather than parking right away, I drove the first five miles. The first mile and a half is an immense switchback taking you up to the edge of Horsetooth Reservoir. The next bit goes along the dam, but then it starts up again. And up. And up. Pretty soon you see signs advising you that this is open range, and that means cattle guards. For the uninitiated, a cattle guard is a metal grid set in the road surface that cattle will not cross, because they will get their hooves stuck in them. Or maybe a racing chair wheel?

At about mile 5 I turned around and drove back down. Driving down some of these hills made me nervous in the car! I argued with myself on the way about even trying any of it in the racing chair. But I’d brought the darn thing, and I was dressed to work out, so I parked at a trail head near the start and got going.

Now if a runner is going up a hill and it’s too steep, s/he can jog, walk, or just stop. If I stop on a steep slope in the racing chair, I will either slide downhill or tip over backwards. I pushed, and pushed, and pushed, and pushed. Cars passed me. A couple of bicyclists passed me. I pushed some more. I looked at the cyclometer. It said 0.3 miles. I pushed a little more, looked up at the vast expanse of hill ahead of me, and turned around. Downhill looked just as scary. I rode the brake all the way down, got back in the car, and cried a little bit. When I got home, I emailed the race director to apologize for wasting his time.

Check out The Trail Goes on Forever for Jen Allen’s recap of the Horsetooth Half from a runner’s perspective.

Wheelchair on Safari

Katja — Wed, 07 Mar 2012 17:13:10 +0000

Check out Into the Wild with Epic Enabled South African Safaris from Disabled World.

Looking Forward to Spring

Katja — Mon, 27 Feb 2012 01:09:08 +0000

Nothing like the end of a bleak, cold, windy February to make a person’s thoughts turn to the upcoming racing season.

Between the walking (hard work, I tell you, hard work), surgery in late December, and the weather, I’m way down on training hours. I’ve gotten out on the handcycle exactly twice since early October. I’ve kept up with weight training and Masters swimming (mostly).

I’ve been fantasizing about doing another bicycle tour. I find myself wandering through websites talking about supported touring, credit card touring, solo touring…do I really want to drag a wheelchair and luggage behind me and camp? This guy did on his cross country handcycle tour: Sonny Neumiller @ crazyguyonabike.

I also fantasized briefly about Ride the Rockies in June, but then I compared my average daily mileage in France (a whopping 19 miles) to the RTR daily mileage…yeah, probably not ready for that ride yet.

Which gets me mentally back to my old bugaboo, feeling like I’m so slow and cover so little ground that there’s no way to do any kind of bike tour with anyone else. I remember how inadequate I felt being passed all the time in the Venus de Miles the first year I did it. Last year, instead of starting early, I started with the other 33 mile riders, and that was worse. Too late in the day, much too hot, too slow (although I had the awesome companionship of the incredible and incredibly patient Kate G).

But I know from previous experience that I need to set some goals, decide on a set of events, and just get going, and it will be all right.

Unexpectedly Upright

Katja — Mon, 02 Jan 2012 00:02:39 +0000

Multiple sclerosis is a strange, no, bizarre, disease.

To review: for many (most) people, MS is a relapsing-remitting disease. Attacks (relapses), which can have a variety of symptoms, hang around for days, weeks or months, and then go away (remission). Remission may mean that the person is free of all symptoms of the attack, or some of the symptoms may remain, usually at a less troublesome level.

When we read about MS, we read about relapses lasting at least 24 hours and at most a month or two. We read about remission being a long term thing, years or even decades for many people.

At some point, though, for many people with relapsing-remitting MS, the symptoms of a relapse don’t go away. Perhaps there are no more relapses. Perhaps there are relapses, resulting in loss of function, and they don’t get better. This variation of the disease is called secondary progressive.

As a person who has been unable to walk without support for over 5 years, I fall squarely into the secondary progressive category. But something has changed.

Early in December, I noticed that my brief periods of standing up and talking a few steps around the kitchen (hanging on to counters) to do dishes or cook were getting longer and stronger. For a week or so, I experimented with more walking in the kitchen. Pretty soon I was making it across the hall and into the bedroom. A while after that, I was doing it without crutches.

Several weeks ago, I started taking some small trips (with crutches) out into the outside world (massage appointment, choir rehearsal). Just before Christmas, I went to work with crutches for the first time since 2005.

Aside from getting a puppy in November (which, if anything, should have sent me to bed for weeks), nothing has changed (medication, PT, etc) that I can attribute this to, so I’m saying it’s a remission. Since it’s lasted (and I’ve seen improvements) over a full month, I’m feeling cautiously optimistic. My husband, on the other hand, is feeling wildly optimistic—he’s talking about buying me a bicycle!

Random observations about being upright after all this time:

I’d forgotten how tall I am, or at least what the world looks like from this height—it’s a re-working of perspective
What am I supposed to carry my stuff in? I have to buy a purse now that I don’t have my trusty wheelchair bag there 24/7
All my pants are too long
Wait, what do you mean I can’t wear the 2.5 inch high pumps I bought because they look good and it doesn’t matter cause I use a wheelchair?
When did my husband get shorter than me?

Things people have said to me:

Did you have surgery?
Are you on new medication?
Have you started physio-therapy? (No, but does exercising count?)
Wait, I didn’t recognize you!
(Even weirder) Nothing at all

Now I have to worry about how my ass looks. At this point, it’s a pretty cool thing to have to worry about.

P.S. I am not a superstitious person, but I hope announcing this to the whole world (or at least the two dozen people who read this) doesn’t jinx the whole deal.

More Home Modification

Katja — Tue, 06 Dec 2011 16:24:06 +0000

Mitch has a couple of great posts (with photos) about his home modifications at Enjoying the Ride:

Disabled? Want Sports Equipment?

Katja — Sat, 26 Nov 2011 03:02:58 +0000

The Challenged Athletes Foundation is now accepting grant applications. If you’re disabled and want to get into sports, check out what CAF funded last year, and apply for a grant. Grant applications are due on December 1st.

Sometimes You Just Want a Pair of Jeans

Katja — Sat, 08 Oct 2011 01:13:40 +0000

Stylish, well-fitting jeans are tough for anyone to find. By some estimates, the average women tries on over a dozen pairs before finding one that she’s willing to pay for (and then, if she’s me, she finds it still doesn’t fit very well).

For women who use wheelchairs, the search is even harder. Pockets and rear embellishments are hard on your backside. Because you’re always seated, the front bunches up and the back slides away from your waist, leaving you with a constant fear that your undies are on display for everyone to see. The legs ride up, and even tall girl jeans leave an unattractive gap between hem and shoe. And that’s just the fit. When it takes 10 minutes for you to wriggle into a pair of jeans and you have to be lying down to do it, department store shopping just isn’t going to work.

There are a couple of companies that make jeans especially cut for wheelchair users, like USA Jeans and Rolling Elephants. Rolling Elephants’ line has a certain rugged/organic/crunchy granola appeal, but lacks anything conventionally stylish. USA Jeans seems to have a practical/functional philosophy also somewhat lacking in style.

Enter Indi. Indi does not cater to wheelchair users, but does offer custom made jeans based on measurements you give them. It took quite a while, and some outside help, but I now have a pair of jeans that fits correctly and comfortably around the waist, and (I hope) looks fairly decent.

If the jeans you receive don’t fit, you can return them (you pay postage) and Indi will re-do your order for nothing extra. If I had to do it over again, I would go to a tailor or seamstress and pay her to do the measurements. As it was, I measured myself, and what I thought was my best fitting pair of jeans.

The first pair Indi sent me was, like most jeans for walking people, way too long in the front and way too short in the back. I re-ordered, with rise adjustments. I immediately got an email from Indi asking if I didn’t want to reconsider the waist measurement, as that should change with changes in rise (here an experienced tailor would have been invaluable!). I re-measured my waist, emailed Indi, and waited for the second pair.

The second pair, while better, still wasn’t right. I almost settled for it, but thought If we can get this right, I’ll be able to buy jeans that fit whenever I want!. So I sent it back, requesting an even higher back rise and an even lower front rise. At this point the Indi pattern person got alarmed, and emailed me to confirm. Did I really want a 7″ front and 19″ back? She must have been envisioning a very unusual physique! I measured myself again (tailor, tailor, tailor). I guessed about the waist. I sent her an email.

The third pair was so close I almost cried. The back rise was now high enough, but the waist! Many inches too large. My self-measuring confidence was at an all time low. I took them to a tailor. She laughed and said, “You’ve got some gap-osis going on – you could fit your purse back there!” She pinned. She measured (4 7/8″ taken in!). She sewed.

And two days later, voila! Jeans that fit around my butt and my waist. And a set of measurements, courtesy of my tailor, for the next time I order.

Obviously the Indi process isn’t foolproof, but for those who don’t have access to a dressmaker to make them jeans from scratch, it’s worth looking into. It’s pricey, but not as pricey as designer denim. Each repeat of the production process took between 3-4 weeks. But now that I know it’s possible to get jeans that fit, I’m going to have a hard time buying jeans off the rack that don’t.