A long overdue update.

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Since my last post in late August 2018, I’ve re-established a rhythm of day-to-day life. Unfortunately, that often doesn’t include adding to this blog. I’ll aim to change that. For now, this will be a hodge-podge of thoughts and experiences.

What I Miss

  • I haven’t worked my way through the underlying reasons for this, but I miss being able to stand in community with people. And that’s probably what it is — the community aspect. But whether it’s standing for the National Anthem at a sporting event or standing as part of a standing ovation at a concert, it pains me not to be able to join in. I wish I could. [On the flip side, I’ve always thought that people are a bit quick to give standing ovations for some musical things … so my staying seated in protest lacks a bit of luster when it’s done in a wheelchair.] I first realized this during High Holidays in 2017 when the prayer book read All Rise. Every time the congregation stood, I would cry. In 2018 I told the Rabbi about this, and he actually said “Please rise if you are able” during the service. That doesn’t mean it doesn’t hurt. It does.

  • I also really miss sitting at the bar at a restaurant. With all my travel, I could often eat at a restaurant bar by myself and I didn’t find it awkward. Even with friends, sitting at the bar takes a bit of the formality out of it and can be pretty comfortable if it’s designed for tall people. But bar height is well above my comfort zone, and so I can’t just go have a casual drink at the bar. “Bar top” seating in a most of restaurants also isn’t accessible — and those are often the ones the ones that are available on a “walk-in basis.” So if you didn’t make a reservation, there’s might be nowhere to sit. But not being able to sit at the bar — I miss that.

Travels

Over Thanksgiving 2018 (November), my parents I went to London. This was my first post-accident international trip. For context, I’d spent the prior 6 years traveling internationally about 50-75% of my time. So I had an itch to get back out there. London was incredibly accessible. It was easy to get around with the help of the SmartDrive to save my strength. All the London taxi cabs have built in ramps, so while the Tube isn’t the most accessible, it was still easy to get around. We ran into one small problem when we took a lift (elevator) up to cross a bridge over the River Thames and were met with a lift that was out of order on the other side. That was less fun. It should surprise nobody by now that we got in touch with the City of London and suggested an opportunity for improvement. The Mayor of London’s response is here.

 

But, London out-did itself on some other accessibility innovations. We went to the Bank of London for a quick visit. This is one of the most genius designs I’ve ever seen. Props, London.

 

London also has this incredible “National Disability” program. We were able to catch a few shows and had no difficulty with seating. It was really quite enjoyable, and I’m grateful to my parents for making it happen and helping me get back on the international road!

 
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Learning to Ski

I used to love to ski. Being in the mountains was one of my happy places. So, getting back out was something that was important to me (like biking). Adaptive skiing is definitely a thing. In fact, it’s a paralympic sport. I’ve chosen to pursue mono-skiing. Lots of innovation in the space with development of more and more complex ski rigs over time. I’m lucky to have access to one of the largest adaptive recreation and sports programs in the country at Courage Kenny Rehabilitation Institute. CKRI has an impressive array of programing, including a winter sport program. Along with the staff from CKRI, volunteers from across the region come out multiple times per week to help teach. Some have been teaching for 15 years. They teach people with a range of disabilities, not just those with spinal cord injuries. It’s incredible watching young and old learn, and awesome to watch a blind skier fly down the slope. Some folks have been doing this for years and years. I spent most of my first few lessons on the ground. Frustrating, of course, but it also just made me try harder and harder.

 
 

To accelerate my progress, a dear friend had organized a ski trip to Breckenridge, Colorado, where the Breckenridge Outdoor Education Center is location. BOEC is widely considered one of the top places to learn adaptive skiing. The team there was incredible. Patient, thoughtful, adaptive in their teaching style. They got me fitted in a mono-ski that works for my tall body. They realized quickly that I wanted to push and push, and they went with it. Sure, I spent a lot of time on the ground at Breck too, but the progress was exponential. (I also learned the hard way the benefit of winter tires/wheels for a wheelchair. While there was plenty of snow in Minnesota, I usually avoided wheeling through the snow. But there was no avoiding it in Colorado — and I ordered winter wheels upon my return.)

 
 

I made incredible progress. Here is a short video — the stopping part was definitely a work in progress.

 
 

Continuing PT

  • I’ve also resumed PT at Courage Kenny. I’m lucky to have an excellent therapist who specializes in neuro. She pushes me hard. It’s clear that I have a ton of work to do. I’m nowhere near as strong as I need to be to safely navigate and also to get myself off the ground when I fall. Floor transfers - as I discuss at length below - are an incredibly important skill that I’ll need to perfect. To do that, I’ll need stronger triceps and scapular muscles. And, for the general long-term health of my shoulders (which are now basically my most important joints), I need strength and flexibility to maintain integrity and to ward off injury. We’ve continued to practice wheelchair skills as well — and sometimes my friends (like Ron!) get in on the action.

 
 

It’s spring in Minnesota. Time to emerge from hibernation. Back to biking season. The emotions won’t go away. But I’ll work more aggressively to get back on the handcycle this spring and summer.