It’s hard to believe two years has passed since we bravely endured our Redwood Coast ride of 2020. That means it’s time for another big adventure. After spending 270 miles traversing the Pacific Coast Bike Route, we decided our days on the sides of highways are over and it’s time to start highlighting safer, more accessible routes that wheelchairs can manage. We decided rail trails were the perfect space for our team to have a beautiful experience highlighting what’s possible for people of all abilities in a safe way.
Excited for the journey
We then had to narrow down what rail trail to highlight. So, we got involved with the Rails to Trails Conservancy back in early 2021 to promote the benefits of trails in their trail moments project. It was a lot of fun and was well received. Conversations continued, I mentioned my search for great rail trail(s) to highlight for a big ride and we learned the easternmost ~500 miles of the Great American Rail Trail was mostly complete and possible for a wheelchair. Excitement ensued!
Flying isn’t pretty
I then started wrapping my head around how this all would work. There were a lot of challenges. First off, the starting point is nearly 3000 miles away. Do I fly? Drive my tired minivan? Then there was the question of surface and isolation along the route. It’s almost entirely dirt and there are four different sections where there are 10-mile segments with no vehicle access. What happens if my chair fails in the middle of one of these? Heat could be a real challenge. What if medical issues arise…
It’s easy to spiral into all of what could go wrong. I had to remind myself that life often begins at the edge of your comfort zone. I have a solid team, a firm grasp of the mechanics of my chair and a lot of experience doing long rides. Sure, all sorts of problems could arise, but that’s where I thrive. Problem solving and enduring are things that really motivate me and this was an adventure I didn’t want to miss.
A ride to remember
The titillating aspects of the trail were just too great to ignore. Starting the whole thing off at our nation’s capital, a mecca of advocacy. There are many dark, old railroad tunnels to pass through. Traveling the Great Allegheny Passage that has historic points of interest galore. Rolling through Pittsburgh, The City of Bridges, and seeing the Americana associated with this area. Finally, the finish line was quite near Elyria Ohio, the headquarters of Invacare, the manufacturer of my power wheelchair.
After setting the Guinness World Record earlier this year for the furthest distance traveled in 24 hours in a mouth-controlled power wheelchair, I really wanted to sit down with the people who make my chair. I live an active lifestyle and don’t ever miss a day out on the trail. Their chairs have held up for me for the past 14 years and I love to give credit where credit is due. Praise isn’t the only thing involved in the chat. Wheelchairs need to be designed for the user’s lifestyle. There should be modular improvements such as improved batteries, robust suspension and motors that provide both torque and speed for people to purchase out-of-pocket to fit their lifestyle.
However, this is not just a wheelchair manufacturer issue. Wheelchair manufacturers are in business to make money. The vast majority of chairs they sell in the US are purchased through Medicare or private insurance. Most private insurances base their coverage on what Medicare allows. Medicare has this lousy, antiquated stipulation that they will only financially cover wheelchairs and wheelchair features for in-home access. This stipulation dates back to 1965 and is outdated and ableist. Access to the outdoors should be a human right. Medicare will often deny things like tiedown hooks on your chair, lighting, or batteries that allow you a full day of recreation. It’s frustrating and does not take into account any of the benefits of being outdoors.
We need change!!!
I’m a huge advocate for getting outside and that’s because my quality of life has been so improved by spending time in the outdoor space. My spasticity is severe, and I’m reluctant to keep taking more medication to manage it. The best thing I can do is go bounce around. The body wants to move and I can really manage my spasms by regular outings on a local trail. The needs of an individual are greater than just being able to move from your bedroom to your living room. This discourages physical activity and encourages a sedentary life which can often lead to poor health. Furthermore, access to the outdoors provides a high quality of life that prevents decline of mental health. Medicare needs to address this issue and acknowledge these features improve people’s independence and allow them to live fruitful, productive lives.
I’ll step down from my soapbox and get back to the big ride!
Dr B & Jimmy are the dream team!
Anyway, I knew I couldn’t do this on my own, so I projected the Ian’s Ride logo at the closest cloud, and soon Josh Blaustein (Dr. B) and Jimmy Quenelle had signed on to ride their bikes with me for the 12-day adventure. Dr. B is always proud to mention that he has rode every mile with me of every Ian’s Ride event that’s ever occurred. Jimmy’s not far behind. This kind of friendship and support is phenomenal. I could never do these kinds of adventures without a lot of help. These two continue to help me to push my limits and demonstrate what’s possible for people of all abilities. Thanks guys!
I also need support when I’m not on the trail. For the first week of the trek, I will have one of my all-star caregivers, Edwin, and the second week my dad will fly in to see me to the finish. I’ll also have my mom along for assistance. She helps with the caregiving, social media posts and driving the SAG wagon.
We love ride alongs!
We will be doing frequent social media posts on all platforms throughout each of the days and will be doing daily blogs describing our experience. We encourage folks to join along if they live nearby any of the sections we travel through. We welcome all modes of transport, but wheelchairs are particularly encouraged to join; we travel between 7 and 8 mph but are happy to slow down for a few miles if needed. We are also big fans of beer, so love any recommendations of breweries along the way. I’ve outlined our route for each day below. Please contact us if you have any interest in connecting.
We have decided to do a bit of a split route near the end of the ride. The easternmost ~80 miles of the GART still have a number of incomplete sections, so we decided to skip those and spend the last two days enjoying the completed trail into Columbus.
I’m now off to finalize some logistics, quadruple check the packing list, pray to the old gods and the new that everything works out and get ready to head off in just over a week. Super excited about this adventure! #GetOutside
September 19 – Fly from Seattle to DC
September 20 – Prep day
September 21 – US Capital, DC to White’s Ferry, MD – 38.6 miles
September 22 – White’s Ferry, MD to Sharpsburg, MD – 41.1 miles
September 23 – Sharpsburg, MD to Ernstville, MD – 38.6 miles
October 3 – Spend the day at Invacare HQ in Elyria Ohio
October 4 – Fly from Cleveland to Seattle
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