Getting There
So, I’m back at my desk after five days in Southern California. Really, it was three days in SoCal and two travel days; five days out of my parents’ house, nonetheless. How did it go?
I was sitting on the toilet in the hotel room on Sunday after breakfast, thinking about how I would write this (and keen on describing my process.) I decided to start with the highlights. In five days away from home, in unfamiliar surroundings: I didn’t fall, especially alone in a Men’s Room; I sat down on and got up from three different toilets without incident; I didn’t choke or spill anything at any restaurants; I didn’t spend days in excruciating lower back pain from sitting with less-than-ideal posture on planes, and in cars and wheelchairs. Our travel experience went reasonably smoothly with no major delays, cancelations, missed flights, or accidents. Let me break it down for you.
We were a little late leaving my house for the airport—not an ideal way to start the trip. I thought it was about a 2-hour drive, but even under ideal conditions, it’s just shy of 2 ½. Conditions were less than ideal.
The GPS alerted us to a 40-minute slow-down near Montreal with a long red line and alternative route suggestion. We took it, circumventing most of the highway and driving past farm after farm while Erica held an overfull bladder. We were already stressed over the time; a bathroom break had to be avoided if possible.
After wasting a handful of precious minutes encircling the terminals looking for parking, we quickly found a spot in the garage, unloaded our shit, and made the long walk, following the signs, through the cold and windy echo-chamber of concrete. While Erica stopped at the bathroom just inside the door, I rolled on to the Air Canada counter. With only one other customer in sight, I found my way through the crowd-control maze and up to the counter.
The older woman and her even-older “work husband” (“He’s been here forty years,” she boasted), both immaculately uniformed Quebecois, worked with us to get everything prepared for our flight. My flight, really; Erica, despite nursing a recently sliced-up and surgically repaired hand (self-imposed), did not require any extra assistance.
Despite some uncertainty from both sides (they sent for a manual chair and I transferred into it for all of thirty seconds), Erica filled out a form on the chair, a phone call was placed to the terminal, and we were soon on our way. “When’s your flight, 6:15? You should be at the gate an hour before. When’s boarding? They’ll board you first.” It was 5:17; we had to go.
Fortunately, getting through security and customs is much faster with a wheelchair. While the security lines were short—and I forgot to mention that the Air Canada agents checked both of our carry-ons for free; I can’t say enough good things about them—we were able to snake past a couple of dozen people at customs and were through in under five minutes. Moments later we were making our way toward the counter at the gate when a twenty-something in glasses caught my attention. “Mister Methot?” he said in a French (French Canadian, I’m sure; doesn’t matter) accent. “Right this way,” he followed.
I rolled down the jetway, slowing a bit for each bump, and saw the “aisle chair” awaiting by the plane’s entrance. (A standard wheelchair, and really, even the smallest wheelchair I’ve seen, is much too wide to fit down the aisle of, I imagine, any commercial airplane. An aisle chair is a very narrow version that looks a bit like a dolly with a seat. It has [I learned] three seatbelt-style straps: one to go over your thighs and two that crisscross over your chest.) I’d been asked early on if I could manage to walk through the plane to my seat. At row 32, only a few from the back (and the restroom, as was my intention) I told them I could, but it would be slow. They looked for two seats near the front, but the flight was fully booked. “I don’t care; I can definitely use a chair if it’s easier.”
With Erica’s hand, I stood up, shuffled my feet, and flopped down in the aisle chair. A man strapped me in, turned me around, tipped me back slightly, and pulled me over the inch-and-a-half bump into the plane. The first to board, I was then pulled down the aisle to my seat and unbuckled.
The “driver,” obviously unaccustomed to a passenger who could stand, stopped the chair right beside my seat, expecting to assist as I shuffled from one seat to the other. I suppose I could have indulged him, but, at first, it didn’t occur to me as I’ve never done such a thing. I was comfortable standing up and shuffling with a hand for steadying, and after Erica and I requested he pull the chair further back to clear room, that’s what I did. (It’s difficult for someone with a disease that is continually progressing to feel confident in any movement; I try to stick with what I know.)
You may be wondering what it’s like to go through security in a wheelchair. I forgot to mention it. The chair is metal, so any sort of metal detector is ineffective. Of course, people assume—sometimes incorrectly—that someone using a wheelchair cannot stand. As before, it didn’t really occur to me in the moment to say, “No, no, I can stand.” When the T.S.A. officer?...official?...agent! began to instruct me on my upcoming seated pat-down, I just went with it. Standing up would have made it easier, though perhaps that would have disallowed my metal detector exemption. Either way, a compulsory feeling of my chair and body and I was on my way.
The flight to L.A.X. was due to be about 6 hours 15 minutes, arriving at 9:30pm P.D.T. (That’s Pacific Daylight Time, dummy.) The aircraft was an Airbus A220, with two seats left of the aisle (where we were) and three on the right. With about 35 rows, and no first-class section that I could see, it carries about 175 passengers. (The return flight would be aboard a Boeing 737 Max 8, i.e., the plane that crashed twice in four months in 2018-19, killing 346 and causing a 20-month grounding by the F.A.A. Yup, that plane. Perhaps I shouldn’t have told my mom.)
The flight was uneventful and, despite being assured that it would be no problem by the crew, I didn’t need to use the restroom and remained in my seat the entire time. Which was fine, except for one thing: my neck. I’m sure most people don’t notice the vibration of an airplane in flight; I’m not sure I did at first. But by the third or fourth hour, it was torture on my emaciated neck. Torture.
I’m not sure I can even describe the feeling, except to say: pain. I sat on the aisle because I’d assumed I might have to use the restroom on a 6-hour flight; I didn’t think of resting my head on the window. Several times, looking for relief, I leaned to my left and rested my head on Erica’s shoulder. If only I could have fallen asleep, passed the time and (at least until I woke up with the inevitable pain from bending my spine into that position) delivered myself from the unending agony as I tracked the time on the woman’s watch across the aisle. (I bought a neck pillow and sat by the window on the return flight. It made a big difference and I tried to sleep with my head against the wall, but I couldn’t, and indeed, it was still horrible.)
The last thing I’ll say about the flights is that despite having a multifunction touchscreen 18 inches from my face, I couldn’t use it. Not because my fingers are curled—though they are—but because my shoulders don’t work; I couldn’t reach it. In fairness, I could use it a bit with my nose, but Erica thought that was disgusting and I couldn’t reach every part of the screen. For entertainment, I listened to several hours of Born a Crime, Trevor Noah’s memoir on a self-contained Playaway device from the library.
Traveling with my new lightweight folding chair meant that I was able to rent a regular car, rather than something equipped with a ramp. Once we retrieved our bags by the Air Canada office in some deserted corner of the terminal, we followed the rental car signs to the curb to wait for a shuttle. Underdressed in my unbuttoned flannel, physically shaking, my jaw clenched tight in the breeze, I sat watching for a bus. I don’t know about Erica, but between the gathering of people, noise of the traffic, and cold temperature, my senses were a bit overwhelmed.
I’d skipped the inevitable rental car shuttle when considering our itinerary. (I’m not much for itineraries, not the most thorough of planners. I use it here as a figure of speech, mostly.) Could I even get on the bus when it finally came? Would Erica have to retrieve the car and come back for me? She tried to find out from the nearby traffic cop, or I guess he was airport security (the cop was out in the road trying to keep the near lane free of stopping cars.) He wasn’t helpful.
When the bus with the right logo arrived, we approached, still unsure what would happen. A metal ramp slowly unfurled in place of the stairs across from the driver and I drove onto a half-empty bus, turning and pulling my chair alongside a few folded seats across from the luggage rack. The bus quickly filled to its limit and people stood over me, facing all directions and hanging on. I don’t know how much that driver is paid, but between driving (and honking) in heavy traffic, hopping out at each stop to gather and place giant plastic-encased bag after bag on the luggage rack, repeatedly announcing to interlopers that the bus was full (because the luggage rack was full), and helping those same passengers back off with their luggage, all with extreme urgency and an air of calm confidence, it can’t be nearly enough; he was a marvel.
We waited in a line of tired, mostly silent people for what must have been almost an hour. (My Behemoth chair has a clock, but without it, I never know the time because I hate repeatedly asking, and while it may be easy for you to take your phone from your pocket, it’s a hassle for me.) I sat quietly observing the variety of customers brought together by their need for transportation; the woman ahead of us, in yoga pants and a cut-off t-shirt with an enlarged neck hole mostly covering the sports bra underneath, may have gained more than her fair share of attention. Needless to say, eventually, we were out in “Zone 3” of the parking lot choosing our car.
The Rental Car
I made all the arrangements for this trip, one of which was renting a car. Not a truck, or S.U.V., or godawful minivan. A car. Something I wouldn’t have to be hoisted up into on every single trip. Toyota Corolla (or similar).
There were five vehicles in Zone 3 when we got there: a small pickup (Chevy Colorado, I think), two small S.U.V.s, and what I imagine were nearly identical Hyundai and Kia sedans. We went with the Kia Forte.
You may remember that Erica had recently sliced up her left hand and had surgery to repair the tendons, rendering her left hand only slightly better than useless. As I tried to get comfortable in the Kia’s passenger seat, Erica tried to find a way to lift my 55-pound chair into the trunk.
She learned pretty quickly that without an effective grip from her left hand, it was impossible. Unaccustomed and uncomfortable asking for help, she approached a fellow renter in the dark lot and for the first of what would be sixteen times the chair was loaded or unloaded by a stranger. Let me give you an example. The Dodger game: loaded by the valet at the hotel; unloaded by a fellow baseball fan in the Dodger Stadium parking lot; loaded by another stranger after the game; unloaded by the valet upon our arrival. It must have been frustrating, but I didn’t hear Erica complain.
Oh, and the Kia Forte, apart from the widely-known ease of theft and difficulty insuring, is a pretty nice little car for under $20k. And despite outings to Dodger Stadium, the L.A. zoo, Willow Springs International Raceway, 90 minutes to the north, and California gas prices, I only spent $35 to fill the tank before returning the car. One more reason to hate my minivan.
The Hotel
Everything about the hotel was fantastic, except for the shower. Okay, I also admit some frustration in using a plastic fork’s bendy tines to stab at my free hot breakfast, but I meant to pack my own utensils. My mistake. (I did pack two stainless steel straws, which I bring most everywhere.) And I could have done without the $46/day valet parking charge, but those guys did more for us than most. But the shower, that’s my real gripe.
Websites like Expedia have filters like “Accessible bathroom” and “Roll-in shower,” but in all of my searches, I could only verify three or four showers deserving of the term “roll-in”. Most accessible bathrooms are regular bathrooms with grab bars on the walls. I chose this room specifically because of the tiled shower with bench and no stepover. (I’m not sure I could step over a tub if I had to; it’s been a long time.)
What I got was an oversized stall shower with sliding glass door, a lone grab handle, and no bench. Not what I paid for. It was the first thing I checked when we got to the room, but I wasn’t about to make a fuss at well past 2 a.m. Eastern. And though it wasn’t what I expected, I knew (I didn’t KNOW, but I was pretty sure) I’d be alright. Had I absolutely needed the seat or had to shower in a chair as “roll-in shower” implies, it would have been different; I would have been forced to speak up.
Actually, it was the sole existence and placement of a single vertical grab bar that bothered me most. The most vulnerable movement in my routine is stepping over the threshold into the shower; the only moment of my day where I’m supported by one leg, however briefly. That’s when I most need an anchor. I didn’t have one. Fortunately, with a steady hand holding mine (I prefer something that doesn’t move; no matter their strength, humans move), I was able to make it safely over the three-inch rise that housed the glass door. And using the single vertical bar (horizontal would have been much better) on the back wall, I was able to steady myself, albeit awkwardly.
I’ll speak up next time; nobody wants me to fall in the shower.
The Chair
You may remember that I bought a lightweight, portable power chair before my trip. (If you don’t, see my last post.) I took it out a few times in preparation, but wasn’t sure how I’d like living with it exclusively for five days.
It went remarkably smoothly. It’s not the Behemoth (my 375-lb Permobil M3) in terms of ride, comfort, or solid presence, but it was a more-than-passable substitute. And, of course, its small size and versatility cannot be overstated.
My main concern was comfort; how would my body feel after days in this chair? I rarely spend more than a couple consecutive hours in the Behemoth, mostly due to lower back pain, or the threat of it. (It doesn’t really allow for “active” sitting, in which the spine is stacked up and mimics standing. My dull lower back pain is from slouching—not keeping an arch in my spine—but an inflatable lumbar pillow has helped tremendously.) Its headrest is ineffective (I have to lean too far back to make contact, and it isn’t adjustable), and the size of the chair makes it feel like sitting in a confined space (like a plane!) all day long. And because it sits lower, I can just get up out of it on my own and often ask for a hand to make it easier.
But enough whining. The chair really did great; it’s amazing to have a power wheelchair that can go almost anywhere. Maybe you’re wondering how important the power feature is; couldn’t you get by with a manual chair? You might ask. Living without so many freedoms we once took for granted, I think it’s fair to say that pALS have a death grip on whatever they can. Assisted mobility is a huge gift: to control your own route, move side by side with another, and remove yourself as a burden. The first time I cruised down a bike path, or around a grocery store—after years of limited mobility and months being pushed along in a manual chair—it truly felt like a miracle.
Having never gone any significant distance in the chair, I was also concerned about its range. The company boasts 19 miles of battery life, but I have much more faith in my own experience than the ideal conditions of some lab. At least, unlike the Behemoth, this chair could be pushed fairly easily if I were to run out of charge. (Though Erica told me she would not be pushing me if that happened. She was kidding, but, you know, not entirely.)
It didn’t come to that; in all the places we went, the battery gauge never fell below 3 out of 5. And the L.A. zoo is very large and set on the side of a hill. I did get pulled and pinned up against a large rock on a short, steep descending corner at the zoo (something I’m quite sure the Behemoth would have handled with ease, simply due to its heft and planted nature), when gravity just pulled me and my cute little chair down like a riptide. (These chairs operate like the one-pedal driving mode in some electric cars; there isn’t any coasting. If the joystick is straight up, the wheelchair is stopped. In this case, I was moving slowly forward but was pulled sideways, for which I was unprepared.)
The chair did well and, thanks in part to my pillow, my lower back wasn’t screaming at me all week. And everywhere we went—from the tight spaces of restaurants and stores, to the tight spaces of various elevators—I appreciated its small size.
The Event, etc.
I haven’t mentioned the reason for our trip. As I described in Part 1, Vince’s Race was held at Willow Springs International Raceway on Saturday, April 29th. With long travel days on each end, we basically had Friday through Sunday in SoCal. Here’s what we did:
We ate the free hot breakfast at the hotel each morning. It was more than satisfactory (other than those damned plastic forks) and I especially enjoyed the make-your-own waffles, though the butter was ice cold and there was no real maple syrup. Nonetheless, it was a satisfying and easy (and very much necessary, for me) way to start each day.
I made the assumption that Los Angeles would be sunny and warm at the end of April—all of Los Angeles. Looking out at the snow in early March, I pictured shorts weather. That’s not what we got.
Much of the city was enveloped in low-hanging clouds our entire visit; I don’t think the temperature topped about a breezy 64 in Santa Monica; it actually rained (more like misted, or spit rain, but stay with me) more than once; I’m glad I brought a jacket and hat; I was still cold with them on.
We walked down to the pier and I bounced over every piece of wood to the end; we took the elevator in the back of Bubba Gump Shrimp (as we were instructed) to get down to the beach and its bike path; and we had lunch at a hole-in-the-wall taco shop. (Discovering they sold much-easier-to-eat burritos, I ordered one and was annoyed when it came cut in half.)
Back at the hotel, Erica looked into Dodgers’ tickets with handicapped accessibility. She found something desirable almost immediately and we decided to attend that night’s (Friday night’s) game. Seventeen miles from our hotel, the drive to Chavez Ravine was expected to take forty minutes; whether baseball, Friday night, or simply everyday rush-hour traffic, it took two hours.
Having never paid much attention to the accessibility of a professional sports stadium, I was amazed at how easy it was to make my way to our seats, especially given Dodger Stadium’s age—it was built in 1962. Without going into too much detail, the Dodgers beat the St. Louis Cardinals; the crowd was into the game, full of light-hearted fandom and enthusiasm for the children in attendance; and Dodger dogs are unusually smoky.
Really. I was surprised. Sitting in my chair without any available surface on which to prop my arms and bring food to my mouth, I was hesitant when Erica announced her intention to get food. “I can feed you something,” she said, all but scoffing at my petty hesitation. “Okay, get me a hot dog,” I surrendered.
I’ve mostly resisted being fed by anyone because I can still do it myself. And I very much don’t want to (and am not ready to) let go of that freedom. But in certain situations, I’ve had to.
She returned to hold up my Dodger dog (with ketchup and mustard, but regrettably, without relish or onions if they had them, because I too often decide what to eat based on implied messiness) while I took bites. It was so easy and there was a time when I would have felt all the eyeballs on me—or imagined them, at least—but, as with the wheelchair, I’ve gotten over that hump.
Saturday was race day. It was a ninety-minute drive out into the desert to the track; I had no intention of arriving for the 8 a.m. start. The drive—something I didn’t consider in the least—was absolutely beautiful. Coming out of the dense fog and cloud cover that hung over much of L.A., we gained elevation into bright sunshine and green hills. Distant mountains came into view and the land flattened out and it was cracked highway, scrub brush, forlorn houses and shacks with fences and parked cars. And solar panels. The landscape reminded me of the barren backdrop to a Road Runner cartoon, though admittedly, without the high cliffs from which Wile E. Coyote could drop his anvil.
The race, yes, the intended purpose for this trip. It wasn’t actually a race, but a track day to support ALS. It was 82 degrees at the raceway when we arrived around 10:30 (it had been 62 when we left Santa Monica), and the car would read 99 when we left. (Even after driving fifteen minutes to cool the thermometer, the Kia still read 96 in the desert, distant snow-capped mountains be damned.)
It was hot, and that meant most anyone that wasn’t driving a car was huddled under a series of tents. That gave me a chance to meet and hang out with some of the folks involved with the event, specifically Glynis, Meghan, and Kyle, who lost their husband, father, and friend respectively, to ALS.
There were some cool cars there: a lot of American muscle (Mustangs, Camaros, Chargers, Challengers, and at least one Corvette), several Porsches and BMW’s, a couple Teslas, Glynis’s rental Maserati, a smattering of Subarus, Mazdas, and Hondas, and one unmistakable Lamborghini. (See them all here.) I really should have made my way over to the garage to get a look at the Lambo.
Kyle spent most of his day giving rides in his Camaro to fellow civilians like myself. When it was my turn, he took me up to a big, empty patch of pavement to do some drifting, i.e., burnt rubber power donuts on dry pavement. A couple problems prevented me from really enjoying it: the helmet was big and heavy and despite adjusting the seat back, prevented me from holding my head up in anything resembling a natural position, and, I lack the core strength to hold my body and head in place in hard turns. And these were hard turns. So, after a few tire-melting minutes of not really seeing what was happening with my body bent far toward the driver and slammed back against the door a couple times, I had to call it quits. Kyle, undoubtedly disappointed in the experience though he’d never say it, tried some stationary burnouts, but each time, the car revved and then stalled. We drove back to the tents and Kyle almost immediately took someone else out on the track.
Thanks to the efforts of so many people, including the folks from Racing for ALS, and Glynis, Vince’s Race (that’s Glynis’s husband) raised over $40,000 for ALS TDI, whose mission is to discover and invent effective treatments for ALS. Pardon the outburst, but Fuck Yeah!
This is already far too long, so I’m going to wrap it up quickly. We had dinner Saturday night at The Cheesecake Factory, on the third floor overlooking the 3rd Street Promenade; we went to the L.A. zoo on Sunday ($21 per person and free parking, compared with $30 for parking alone at Dodger Stadium); had dinner at an Indian restaurant a few blocks from the hotel; and stopped by a souvenir shop where Erica bought gifts for her kids and I bought myself a t-shirt. We were in the lobby Monday morning just as breakfast began at 6:00, returned the Kia, and made our way to the gate with plenty of time to stop and buy snacks and a neck pillow. I took the window on the way home and tried (almost entirely unsuccessfully, I think) to sleep with my neck pillow. It was better, but still pretty terrible. Together, the flights were the most physically uncomfortable I’ve been, possibly ever. It took a little time to find the minivan in the airport garage in Montreal; we’d been in a rush and didn’t take note of the section, just the level. We pulled into my driveway just before 10:00 p.m., unloaded my shit, hugged, and Erica left for the eighty-minute drive to her house. Ugh.
I’m not going to sum this up with some pithy words to remember. Or maybe I’ll just say this: If you want to travel but don’t know how it would work and that anxiety is causing inaction, go for it; there’s nothing to be afraid of. Just don’t fall in the shower. (Guess I couldn’t help myself.)