Last week, I drove 1,600 miles over three days from my home in Portland, Oregon, to Calgary, Alberta, and back. It was an impromptu decision. There’s a bike there that I wanted to check out, and the opportunity came to test it out. The sooner the better. But I had to be flexible with weather and arranging childcare for my 14-month-old son, and I’m not wealthy enough to be flexible with plane flights. So it was either driving or not going. I packed the car.
Fortunately, I have some experience with long road trips. I grew up in a small town in Alaska, where there are no roads into town, you have to fly or boat in. So as soon as I had the opportunity, while going to the University of Oregon a year after my SCI, I started hitting the open road, just to see where it could take me. I’ve now driven cross country four or five times, twice on my own. I’ve driven from Oregon to Alaska three times. The farthest I’ve ever driven solo in a single, sleepless stretch is 1,000 miles and 18 hours from Seattle to Prince Rupert, British Columbia. I’d only recommend that if you’re interested in the finer points of masochism.
The weirdest solo drive I’ve ever had was from Cincinnati to Denver in an inaccessible (except for some hand controls) RV. I had to get in the rear door by bumping up the stairs and then using a tie down strap as a grappling hook to pull my chair in after me. It was all fine until I almost passed out while shimmying along the couch to reach the ignition and AC during a 100 degree Kansas gas stop.
Over the course of countless hours on the road, many of them solo, I’ve learned a few ways to make the miles tick by a more smoothly. Here, in no particular order, are my top six tips for long haul road tripping as a wheelchair user:
1. Cushion: Any long road trip means a lot of sitting in one position with little opportunity for a traditional pressure relief. Regular wheelchair cushions sit you up too high when driving, but if you have a bony butt like I do, anything over a few hours is too long to sit on a regular car seat with no extra cushioning. My go to is a Roho Packit cushion, a minimal, low-profile cushion made up of Roho’s individual air pockets that comes in a single 16.25-inch by 9.5-inch size. The unobtrusive size, with far better pressure relief than a foam cushion, makes it super versatile. In addition to road trips I use it on my shower chair, for airplane seats and laying under my butt anytime I want to get out of my chair and stretch out while traveling. You can get one for around $150 from a variety of online retailers.
2. Pressure Relief: Even with an extra cushion, sitting still for hundreds (or thousands) of miles can be dangerous for skin health. I’ve found that by leaning from side to side, forward and pushing up by putting my elbows on the door armrest and the center console, I can get some mini pressure reliefs while keeping one hand on the steering wheels and the other on the hand controls. It’s not perfect, but if I cycle through these regularly I can keep my skin from getting too angry.
3. Coffee: To keep me chugging down the road for any length of time, I need coffee. Back in my dumber days I’d use Red Bull — for one drive back to Alaska from college, I remember loading four or so cans into a Camelbak — but I don’t appreciate a twitching eye and a heart murmur the way I used to. Coffee gets prime position in the center console cup holder. An insulated, spill-proof to-go mug makes things easy. My favorite is a 16oz Zojirushi, available online and at some Target stores. It’s relatively cheap, easy to sip out of, will not spill a drop with the flip top lid closed and rivals the absurdly-expensive Yeti brand for insulating efficiency. If you pour your coffee straight from the pot at 6 a.m., it will still be too hot to do anything but sip at noon. Bonus tip: If you’re driving U.S. freeways, Pilot has the best gas station coffee out there.
4. Water: For a long road trip, you need quite a bit of water to stay hydrated. But it’s a pain to have to keep refilling a bottle that’s small enough to fit in a cup holder. To give me more capacity with easy access, I use a water bladder with drinking tube. I put a large bladder behind my seat and run the tube around to rest either in my lap or on the center console, which gives one handed sipping with enough water to keep driving all day long. You can get hydration bladders from a variety of online retailers, for $30 and up, depending on size.
5. When You Gotta Go: If you’re drinking enough, stopping to find an accessible bathroom every time you need to pee will seriously cut into your miles. To extend the time between bathroom stops, I connect my catheter to an extension tube and then connect the extension tube to a leg bag. Because legs bags typically have a one-way valve, this creates a closed system. I can cath into the bag and not have to worry about spillage like I would with a bottle. This way I can wait until I’m already getting out of the car to find a spot to empty the leg bag. When you’re trying to put in miles, efficiency is the name of the game.
6. Gas Stops: In Oregon (and New Jersey), the law says you can’t pump your own gas. That’s great for chair users for whom pumping gas is a serious hassle or downright impossible. But everywhere else, you’re on your own. Gas stations are supposed to send someone out to help you pump, if requested. But in practice, this is hit and miss, at best. If the station only has one employee, it’s not going to happen. I used to get annoyed by this, but for long drives, it’s motivation to get my butt out of the car. Between 350-400 miles (the amount I can typically go on a tank of gas) without any real physical movement is plenty. I get out at gas stops, roll inside to prepay — the pumping of gas isn’t so bad for me, it’s trying to operate the damn card reader that sucks — stock up on any supplies I need. I’ll push a few laps around the parking lot or do some active stretching (yes, I look like a freak) just to get the blood flowing a bit and wake myself up.
Driving a long haul can be exhausting, but it’s also incredibly freeing to just be able to hop in your car and go. So next time you start dreaming about pulling out of the driveway and not stopping until you’re far far away, go for it. You never know where you’ll end up.