I haven’t been on a plane since I started using a wheelchair, and really, several years longer. I didn’t have the opportunity; I didn’t make the opportunity to fly. But I’ve been trying to live more purposefully and do things that don’t necessarily fall in my lap.
I noticed a new Instagram follower in late February. I don’t investigate every new follower, but @wilder.racing caught my eye, so I checked out his page. “Racing for ALS;” interesting.
I’ve never been to an automobile race (I could’ve said “car,” but I chose the most pretentious option), but I’ve always liked cars. And I’ve watched every episode of Netflix’s Drive to Survive. And, because my freshman roommate has owned more than fifty cars (I once asked for a list) over the years, I’ve had the chance to drive, and more recently, ride in some cool cars. BMW 328is, Mercedes-Benz E420, BMW M3, Volkswagen R32, Ferrari 360 Modena, Mercedes-Benz G500, Porsche Panamera, and most recently, a C8 Chevrolet Corvette. The Ferrari was the last one I got to drive, in 2013, two years after my diagnosis.
The Instagram link brought me to the registration page for “Vince’s Race” at Willow Springs International Raceway in Rosamond, California, on April 29th. After several clicks of the minus sign on the map provided, I learned it’s located north of Los Angeles. L.A.! Hmm. I miss the sun. Did I mention it was cloudy, snowy, bleak February in Vermont; about four months since we’d really seen the sun?! Maybe I could go…
Before anything else I had to find a travel companion. Truthfully, I had one preloaded, that is, I had someone in mind. Otherwise, I wouldn’t have seriously considered going. (This is life with ALS; always dependent upon others.) We exchanged some texts and she told me to look into it. Awesome!
With that, my research project began. Rather than explaining every aspect of booking a trip to the Los Angeles area, I’ll give you the sticking points. If I was traveling with my Behemoth 375-pound wheelchair, I’d surely need to make special arrangements, with the flights and rental car, at the very least. I didn’t even know if it was possible.
Just a quick sidebar: If it wasn’t obvious, wheelchairs are more indispensable to their users than really anything in a regularly-abled person’s life. Prescription glasses might be comparable if someone truly can’t function without them. Traveling with my chair is traveling with myself; it has become a (very visible, to others) part of me.
After consulting a number of online sources, I learned that it is possible to fly with such a companion. Kind of―theoretically. The Behemoth has to physically fit in each plane’s cargo hold, and each plane is different.
The downside of flying out of a smaller airport―something I experienced repeatedly traveling for work―is that direct flights are extremely hard to come by. A first-world problem if there ever was one. (For those of you over sixty, I mean a problem of the privileged, like your dog walker showing up five minutes late, your favorite pedicurist having the day off, or a less than ideal foam-to-coffee ratio in your Starbucks cup.) But, in this case, it was looking like a possible deal-breaker.
The smaller regional jets―like the Embraer E-190 that flies the first leg, from Burlington to LaGuardia―can’t fit my chair. The cargo hold opening isn’t large enough. The first “leg” of my plan seemed foiled before it started.
I checked flights out of Montréal (two hours north) and discovered the same problem on the long-range “regional” Airbus A220 used for (direct!) service to LAX by Air Canada. Hmm. Maybe I can’t bring my chair.
I tried to call Air Canada (to confirm my online source) a few times on consecutive days, but a recent snow storm had overwhelmed their support staff and all non-emergency calls were being referred to the website. (Presumably, I could have waited for hours on hold.) Instead, I decided to pretend it was 1992 and contact a travel agent. Because I assumed they would have some expertise in the matter. They did not. After several tedious phone calls with what seemed like an elderly woman―who quoted me a much higher price, had no clue about traveling with a wheelchair, and suggested a conference call with the airline, i.e., an interminable period of inescapable torture―I gave up on any waning hope that she could help and gladly stepped back into the 21st century.
I was advised (by a friend at ALS TDI) that I could likely borrow a small, portable power chair (that could be fold up and be checked like a piece of luggage) from the Team Gleason Foundation (named for former NFL safety and pALS, Steve Gleason.) I filled out the request form and got on Amazon out of curiosity.
I don’t buy a lot of stuff on Amazon, or truthfully, anywhere else. But I looked through the chairs―eliminating any without a high back and headrest―picked one out, and moved on to the company website to learn more. And as I began to wrap my head around its value―not only for flights, but trips in vehicles outside my van; and possibly for use on muddy terrain and with my ramp―I began to move slowly toward making a purchase.
I showed and talked to my mom and bought it the next day. It’s a Majestic IQ-9000 long range electric wheelchair by ComfyGo Mobility. It cost me $2,199, folds and weighs 55 pounds with the 6-pound battery, has a stated range of up to 19 miles, and can be controlled by a joystick or remote control. Really, it has a remote.
With my purchase, I could book (seemingly) any flight I wanted. Like a regular person! And we could rent a normal car instead of the converted minivans I’d researched. Doors were opening, possibilities showing themselves.
Those direct flights out of Montréal still had my attention. I immediately got back to Expedia and discovered not only an ease-of-use improvement without a multi-hour layover, but the cost was barely more than half of what I’d expected to pay. Round-trip tickets to LAX―about 2,500 air miles―cost us $357.20 each. Incredible.
The car rental was easy and typical. I was hoping to get something fun, but the up-charge was ridiculous. A base Mustang (“or similar”―how do they get away with this bait and switch?!) is not worth TRIPLE the price of a Corolla. I got the Toyota.
Finding a hotel room would be different. I learned on a previous trip (to visit friends and Foxwoods Casino in Connecticut) that what is commonly known as a handicapped accessible bathroom is really just a regular bathroom with some grab handles drilled into the walls. I was able to step over the wall of the standard-sized bathtub with help from one of those handles, but it was far from routine (or safe), and that almost two years ago.
What I actually needed was a roll-in shower, which has no wall or lip or edge to step over. My shower at home has about a four-inch lip, which has not yet become a problem. As you might imagine, hotel rooms with this level of accommodation are harder to come by. And less likely to be available at an affordable price.
I won’t bore you with the details of my decision to try to stay in Santa Monica; for the most part, it was early March in Vermont and I was craving sunshine and ocean views. (The event is named for Vince Murray, who passed away just 13 months after his bulbar ALS diagnosis in 2015. He and his wife, Glynis, loved NASCAR and were regulars at Sonoma & Las Vegas Motor Speedway. It's held at Willow Springs Raceway, out in the desert [it certainly looks like desert to me] about ninety minutes north of L.A. I had no interest in staying out there.) But I will say, the roll-in shower requirement creates quite a small sliver on the hotel room Venn diagram. (There I go with the overeducated language again. I just mean that it’s a limiting factor, or bottleneck―there aren’t many of them!)
Eventually I found something I liked (with photographic evidence of the essential shower), and began to try to get on board with the price. Santa Monica is expensive! It turns out everyone wants to be near the parks and beaches and ocean. Fortunately, it’s become easier for me to say “Why not?” and drop $300+ per night on a roof and a bed because, well that’s one of the mantras of the ALS brain. (At least my ALS brain. Some others are to live in the moment and to always “try to keep trying.”)
After all that, I was feeling (mostly) prepared for my trip. I’ll let you know how it goes.