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smallrestlesshuman

I somehow ended up in two pursuits that involve a

I somehow ended up in two pursuits that involve a lot of hierarchy and judgement around choice of equipment. Last weekend Lisa @keepinitwheel306 and I went mountain biking after a very long holiday week of daily rain. I was little kid excited even though we were mostly sticking to fire roads while the rest of the trails dry out. We got two comments that day. One guy said that our bikes were not allowed on these trails. He then highlighted Lisa's Bowhead as especially not allowed and "ATV-style." Another lady loudly said, as she hiked past us: "How is that even exercise?”

I've had other comments. On a recent road ride one gentleman said that I "need a sail on that thing" about my trike. And when I surf using my wave ski, people in the line up ask me if I'm disabled. The worst was a La Jolla lifeguard who paddled up to me and Yvonne on his 11' long board and said that my board was "a weapon". When I pressed him on how, given it's made out of foam and fiberglass just like his but is way smaller and lighter than a long board (my wave ski is 7'6"), he said something vague about paddles.

Overall there is just a lot of ignorance around adaptive equipment. But it's more than that. One of the more memorable conversations I had was with a fellow mountain biker at the top of a big climb. We were both catching our breath and waiting for our riding partners. He asked me the usual questions about my bike. And then he said: "I'm really glad to learn that something like this exists. Now I know that if I get injured I'll be able to keep riding." And that touched my heart.

That leap is missing in all the other curiosity-driven exchanges I've had. And that's the real driver of all the ignorant comments. People keep me in "the other" category because of my disability. They can't fathom the possibility of their own injury and need for adaptive equipment. I understand why. The thought is deeply uncomfortable. But is it too much to ask? Can disability become more familiar? Closer to their daily experience and therefore not representing a completely different kind of human? I think more than education about adaptive equipment, we need representation.

Thanksgiving road trip. We packed the van with thr

Thanksgiving road trip. We packed the van with three bikes and the many surf accessories and set off north. First stop was a ride in Crystal Cove. Then we met up with my brother for a traditional holiday meal of some of the best Korean food I’ve ever eaten. We hung out on his very cool rooftop porch, from which the Hollywood sign can be seen. I find it funny that my very East Cost, very straight-laced little brother is making a home for himself in LA.

We took a road bike ride along the coast and did some tourist things (loved the LACMA). Then it was time for mountain biking in the Santa Monica mountains.

I found the perfect adaptive bike trail. The Backbone Trail runs for 67 miles from Pt. Mugu in Ventura Country to Malibu. The segment we did was a generous single track: winding, hilly and interesting without being slow and arduous. It was the perfect width to keep me on my toes while feeling grace and flow. This is how I imagine most trails feel on two wheels. It was an out and back and I had a really hard time stopping to turn around. We’ll be back to scout out more.

Then surfing at a busy beach break that was pretty much a total struggle, then home before traffic.

Ben and I returned to the Tetons. After a cancella

Ben and I returned to the Tetons. After a cancellation last year, we were really happy to make the trek again and bike with 20 other adaptive riders. It felt like a trike takeover of the mountain. We were half of the festival this year. Even with Covid, this is an experience that’s important to so many of us.

I got to try a Bowhead for this first time. It was harder than it looks! Best way I’ve heard described is learning how to balance on two wheels all over again.

I also took the lift to the top for the first time and rode down with confidence. Bombing down hill continues to be loads of fun. But challenging cross country is where I feel the most brain reward centers activate. I guess I like it when my biking looks more like rock climbing than skiing.

After Wydaho was over we took another week to try the other trails in the area. I struggled and triumphed. I loved it and I got frustrated. I got two comments. One very fast and complement biker said to me: I think that bike is too wide for this trail. Another time, a more beginner rider said: If only the trail were a little wider. It’s interesting, the difference in phrasing and perspective.

As I’ve been loving biking and struggling to feel part of the greater mountain biking community, I’ve wondered what would make me feel equal to my peers. Is it the Bowhead? Is it an acceptance of trails just being much harder and slower for me? The passage of time? Disability pride? Riding exclusively in a trike gang? I don’t know. But right now it doesn’t feel like any of these is the answer for me.

Biked the beautiful Back Bay for #haveaday. The su

Biked the beautiful Back Bay for #haveaday. The surf was flat, the mountain bike is in the shop, but because I have a road bike I could still get out. So grateful for organizations like @kellybrushfdn and @hi5sfoundation that provide grants for athletes to purchase this expensive, specialized equipment. There’s no Craigslist option for me. Thankfully, there’s the financial support from these rad organizations. @victoriasvictoryfoundation #highfivesfoundation #kellybrushfoundation #kbactive #adaptiveathlete

Without much planning, research, or info, I decide

Without much planning, research, or info, I decided to try the Skyline trail in Big Bear. I miss the spontaneity of able-bodied adventure; this was my attempt at getting that old spark back. I saw a trail that looked beautiful and long and I wanted to do it. Plus, a fire road runs parallel to it, so I knew we had a back up if needed.

We crushed the first 10 miles or so. It was a beautiful mix of flowy and technical. The trail follows a ridge and is sandy, wooded, and boulder-strewn. It reminded me a lot of the trail runs I did around Lake Tahoe.

We came to a section with squeeze after squeeze that required me to get off my bike and for Ben to carry us through. We exited to the fire road for a bit, then dived back in. I underestimated my stubborn need to stay on the trail.

With 7 miles to go we ran of water. But soon came across a large family having a picnic at one of the campgrounds. They were incredibly kind and friendly and gave us three litters and two cans of herbal tea. We pressed on with new optimism.

With four miles to go and some climbing still left, my battery died. I used a mix of shlump gear and Ben assist to finish the ride.

It’s been a while since I was this tired. I love a full day out. And I’m an unapologetic advocate of getting in over your head.

My trainer at Adapt tells me the ankles (Subtalar

My trainer at Adapt tells me the ankles (Subtalar joint) are the steering wheel of the body. If that's true, I'm ghost riding the whip. I usually ignore my feet because they have the least sensation and no movement. We tried this exercise, though, with an emphasis on the ankles. On my weak right side, the sensation of stomping my foot down on the plate really helped me activate my quad and hamstring. I could feel the pressure though the bottom of my foot and felt it translate into quad engagement. Afterwards, my calves were twitching. Definitely interesting. Plus, even horizontal jumps are fun. #scirecovery #adaptiveathlete #rehab #workout #adaptiveworkout

Over a long July 4th weekend Ben and I took anothe

Over a long July 4th weekend Ben and I took another trip to Mammoth. It reminded me how these trips were basically the only thing I did last year. With everything else on pause, I was still able to get away and camp with good friends, push my biking skills, and enjoy the sound of the wind through the pines. That’s a lot. And it continues to fill my cup. This trip I was also able to meet up with old climbing partners. They were in the Sierra for climbing, I was there for biking, but we were still able to shoot the shit over dinner like old times.

This was Ben’s first trip post-knee surgery and he did really well. Thanks to @riley.devin for suggesting we take trails we haven’t done before that turned out to be pretty terrible. And for @bungs.bungs.bungs for pulling us through them.

On Friday Ben had knee surgery to repair a tear to

On Friday Ben had knee surgery to repair a tear to his meniscus. In the pre-op appointment, the doctor asked if there would be anyone to take care of him at home. When Ben mentioned me, the doctor said I "didn't count." So Ben had to list some neighbors that could come over and help.

I was really bothered when I heard about this exchange. Presumably because I have a spinal cord injury and use a wheelchair, the doctor thought I couldn't help Ben after surgery.

Not to brag, but I'm a great nurse. Empathy and experience goes a long way. Ben told me I've been both helpful and empowering: always willing to step back and let Ben do the things he can do on his own. There hasn't been a situation yet where that we couldn't handle. We're both experts at adapting. Plus I have cushions, mobility aids, and all sorts of tools for managing pain.

It's clear this doctor's model of disability doesn't include any kind of nuance. He probably pictures me sitting in a wheelchair somebody else has to push around. This goes back to a topic I've thought a lot about: it seems most doctors haven't dealt with medical issues of their own. The process to become one is designed to weed out the "weak" -- the unhealthy, slow, disabled.

When my friend had hip surgery in the middle of her medical rotations and literally could not crutch fast enough to keep up with visiting patients, her advisor suggested she take time off from school. No one offered that she use a scooter or a segway or a wheelchair. This was unbelievable to me. How are doctors so poorly versed in accommodation? In mobility aids? Thinking about it still upsets me. My friend thought she was falling medical school.

I see it all part of the same problem: disability, even by doctors, is poorly understood. As a diverse population we are completely unrepresented in popular culture and the wisdome and resources we have are not appreciated except by the people closest to us. Until something changes, we'll continue to not count.

Trying to find balance. Trying to surf enough and

Trying to find balance. Trying to surf enough and bike enough and work enough and do the dishes and keep all the plants alive.

Sometimes I feel like six different people, all competing for the same small block of sunlight. I get obsessed and let one thing crowd out all the others.

I surfed every weekend then took a month off. I'm getting back into road biking after not touching it all summer and fall. Maybe the right way to think about it is I'm seasonal. San Diego might not have seasons, but I do.

Photo is by Ben using our new camera and borrowing a super telephoto lens. Finally, there are pictures of me surfing! Photography is another fun thing on my to-do list...

It took three bands and some creativity but I got

It took three bands and some creativity but I got a decent squat going. The kind that burns through the entire range of motion. Tracking of my right knee is still the hardest part. But I'm happy with my glute engagement here. @sala11alas

This is what a typical Saturday morning looks like

This is what a typical Saturday morning looks like. I’ve been feeling grateful for surfing, lately. After a summer of closed beaches and parking lots, poor conditions, my fall has been solid. We’ve had some great swell come through and I’ve been lucky to get out almost every weekend.

I just invested in a paddle by @qbpaddles, which weighs almost nothing and is really fun to handle. The result is surfing for hours without shoulder pain and finally feeling like the weakest link in the chain is healing. PT, stretching, and refraining from CrossFit over Zoom have also helped in this.

I’m looking forward to surfing all winter. The cold water makes me smile like nothing else and for hours afterward.

Thanks for the action shot, @tallcapodude!

Another Falliversary post. Another chance for me t

Another Falliversary post. Another chance for me to recreate the last picture I took before my fall and to reflect on the past year. Year Five has been a strange one. Last year I resolved to work on my social anxiety. But I never considered that access to strangers would be a choice taken away from me. This year I accomplished one major physical goal: I started walking with two AFOs, finally not needing a KAFO on my right leg. But in terms of mental health, I hit some lows. We all have in 2020. Today, so close to another presidential election, seems eclipsed by how perilous everything feels. So I'm having trouble talking about myself. This year I resolve to write more. To be part of more acts of radical optimism. And to stick with my shoulder PT.

I went back to Moab for the first time since I got

I went back to Moab for the first time since I got injured. We rode for three days with @tellurideadaptive on some of my favorite trails yet. The biking out there felt so similar to rock climbing -- the same route finding over sandstone -- I got misty-eyed at times. It was so good to focus, to feel challenged, and to finally have the experience to make a plan and have it work. My summer riding felt like it culminated in this trip.

🎹 TX Jelly, Texas Gentlemen

You come home and your house seems completely fore

You may have heard of a #tikegang out in Colorado,

You may have heard of a #tikegang out in Colorado, but here on the west coast we also ride together in a female-heavy band of adaptive cyclists. And we do it with style.

Right before the pandemic and my friend's death, I

Right before the pandemic and my friend's death, I got a new brace for my right leg. I was able to scale down to an AFO from my stance control KAFO.

I wrote blog post about the process:
"When I walk it feels like I’m on a tight rope. It takes all of my brain capacity and any strong breeze or stray sidewalk crack can tip the scales against me. I use my hot pink crutches about three times a week to slowly parade down the sidewalk in front of my house. Ben is next to me as careful spotter. I need all of his attention as well. I’m not doing it because I think I’ll be walking as a primary mode of locomotion. I have a strange fascination with walking like with a difficult new sport. It’s probably better if I think of it as slacklining. I enjoy the challenge of slacklining. I enjoy progressing at it. The practical considerations don’t motivate me. I’ve learned that careful goal-setting is the key to mental health."
Link in bio.

Today I did a new mountain bike trail in a new are

Today I did a new mountain bike trail in a new area. Usually I try for obviously accessible paths, like fire roads and easy rides when venturing somewhere new. You never know how crazy something is going to get for you on three wheels where others just have to take care of two. I went for it. And I got rewarded with a fun, rocky, technical climb. And two very different, varied descends. I also got stuck. We hit a section that most people walk. The rock path was too narrow for me and the next rock step was too steep.

When I got there, two guys we meet earlier were waiting for us. We had chatted with them at the top and they stopped here in case I needed help. And I did. They helped carry me and my bike over that crazy terrain and I just felt so grateful. They were awesome and were having a lot of fun just hauling me up.

Back in the parking lot, they invited us to join them for beers. We sat and chatted for a while. They gave me more trails to try. I'll never get over how kind people can be and how a connection like that can elevate a simple ride into something that leaves me basking in its glow for days. #haveAday

When I think about the anniversary of the ADA I th

When I think about the anniversary of the ADA I think about how small our fight is. How local our voices. Instagram makes it easy for us to find each other. But how do we reach a broader audience?
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My experience is that people still find it intuitive and normal to discriminate based on disability. Of course you can't do this (go on a boat, visit this area, take this class), *you* are lacking... Knowledge of the social model of disability is completely missing. It's not taught in school. We never think about it until we finally fall through the cracks. That was the case for me, anyway.
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I've seen it in the places in San Francisco that seem to be shouting for social justice. They champion a diversity of sexual orientations and a rainbow of skin but don't have an accessible bathroom, anything but bar seating, or a ramp to the back patio. It stings the most when you're invisible to the people who claim they are fighting for equity.
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I've seen it at work, where the ADA doesn't protect me. There is a big difference between UCSD, which chooses to make changes when asked, and the VA. The space where I work at the Veterans Affairs clinic really limits what I can do by myself. And requests for easier doors, push buttons, any kind of structural accommodation get ignored in the ancient building. It's not in the budget. It's ironic and illustrative: we only get basic access when all other priorities are filled. We're not in the budget.
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It's not in the nation's awareness that people with disability still face basic access problems, still face discrimination, struggle to find work, the list goes on... We struggle and we teach our friends and our partners about the structural inequity. But I think many of us stop there. Embarrassed to ask for too much. Still feeling undeserving.
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I've gotten into a new habit. Whenever I stop myself and choose to stay silent about a specific issue, I ask if this is how I want my friends to be treated. If I'm not OK with this happening to the people I care about, I swallow all the apologies that are forming in my mouth and I try to make a change.

Ben and I finally packed the van and started drivi

Ben and I finally packed the van and started driving. Taking a road trip was strangely emotional. I hadn't realized how stuck I felt. Sure, we had done some bike rides on the weekends. But I needed a real change of scenery. We were giddy sleeping at the rest stop on our way to Mammoth: it felt like a real vacation. We met up with @riley.devin, who was an amazing local guide and gracious host. The result is three days of mountain biking at @mammothmountain, some swimming in a very cold mountain lake, and a trip to my favorite hot spring. We'll be back in August.

I finally wrote down some of my thoughts on risk a

I finally wrote down some of my thoughts on risk and loss and grief. Link in my bio.

"What I believe in is the freedom to be wrong. To be unlucky. To be hurt. And I think all of us deserve love even if we go out into the mountains and don’t come back. Or just barely come back. Yes, it’s a waste to be young and healthy and at the beginning of your career and have a rappelling accident. It’s a huge loss. But it’s also a loss, every day and at every step, to try to prevent this person from being at the top of that belay station. I lost a friend who has been with me since middle school..."

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