A friend and I took a little road trip this weekend. It may sound commonplace, like any two pals driving hours in a car, but of course, that wasn’t the case. I needed her―to drive and perform all of the tasks that I couldn’t. We’re not equals in this way, but I never feel that dynamic. She knew me before, and we’ve only grown closer over the years. Thank you, Erica.
We drove 4 ½ hours south to the Connecticut coast, and 90 minutes each way to Newport, Rhode Island to visit the Gilded Age Vanderbilt summer cottage (i.e., mansion), The Breakers. Our conveyance was the only vehicle I ever ride in (for the most part), my wheelchair-accessible Dodge Grand Caravan.
Most of the time I see pictures of people riding in these vans, they’re strapped in their wheelchair, isolated toward the back. In more than two years of ownership, fortunately, I’ve never been in that position. Instead, on most trips, I drive my chair up the ramp, stand up and shuffle forward to sit in one of the aftermarket, fixed-in-place, second row jump seats. Their smaller and split to the sides, intended to fit a wheelchair between them.
But the back seat is still isolating, and on such a long drive, it’s worth the extra effort to get my body into the front. Because the floor of the van has been lowered to accommodate the rear-entry ramp, there’s about a ten-inch step to get into the front. Allow me to clarify, the van doesn’t have any center console, so it’s fairly simple to get from the second row to the first. For someone of average mobility, anyhow. It’s barely workable for me, but with Erica holding me steady from behind, I was able to make the transition and flop into the passenger seat.
I made a checklist before I left―for myself, not my children. There are a number of show-stopper items I had to bring. My wheelchair charger, without which I could be left with a 300+ pound, freewheeling manual chair; my folding, portable ramp, without which I couldn’t get into my friend’s house; and a lightweight, manual wheelchair, just in case. I also brought, less urgently, the tray that hooks into my chair, for portable eating and drinking; several metal straws, a fork, and a spoon; a few protein bars and a water bottle; and all of the regular weekend road trip items.
About halfway through our drive, we stopped for fuel in Brattleboro. Because I was in the front seat and so many things were loaded into the back of the van, we used the manual chair to visit the convenience store bathroom. Sliding out of the passenger seat is fairly straightforward, but we soon learned that climbing back in might be a problem. The vehicle rides significantly higher than a stock minivan, and I hadn’t ridden in the front seat in almost a year. With my right hand on the open door and my left grabbing the handle on the ceiling (I had to ask Erica to place it there), I lifted my left foot as high as possible to reach the door sill, but I was coming up just short; she had to help. All of these placements did nothing to get me up and onto the seat; I couldn’t pull myself up with my left arm or push down with my left leg. There was simply nothing there.
After several more than awkward attempts, with Erica doing everything to push my weight into the seat, I wasn’t sure how I’d ever get in. And I couldn’t stop laughing at our inadequacies. Bent to the side, feeling myself slide farther off balance, laughing uncontrollably, I was sure I’d end up on the pavement, helpless if not hurt. Erica assured me she wouldn’t let me fall, but as is always the case in these situations, I felt panicked.
Somehow, I regained my balance, managed to get past the ALS giggles, and we tried again. I can’t even describe the difference in our technique it was so minor. I’m not sure I could repeat it tomorrow, but in one fluid motion, I was up on the seat and wiggling my way into place.
Because it was already after 2:00 and I judged it better than anything the convenience store had to offer, we drove next door to Burger King. (I would have preferred to walk, i.e. get pushed in my manual chair, but there didn’t appear to be any sidewalk and my muscle refused to push me a few yards on the road.) We quickly and routinely hoisted my body into the van after our meal. (I skipped over the exciting part, I know. Because I’m a cheapskate and knew the sandwiches would be smaller and more manageable―probably more of the latter―I ordered a cheeseburger, chicken sandwich, fries, and drink from the value menu. I drank about 4 oz of the Coke and though my digestive system hadn’t experienced a fast-food chain in ten years, it didn’t give me any trouble on the ensuing drive.)
Upon arrival in Frank and Barbara’s (as if those could possibly be their names) driveway, I dismounted again into the manual chair and Frank carefully backed my behemoth powerchair down the ramp. Before visiting their newly-built home last year, I’d seen pictures and asked Frank about the lowest point of the front porch. My portable ramp is not long enough to accommodate a standard front stoop, but at less than two feet, the rise at their house is easily manageable.
Theirs is the only house I’ve been in with my powerchair―outside of my own, of course. It’s a large, two-story home with one step from the oversized mudroom to the main level. Frank―who designed and built almost every aspect of the house by himself―made a handsome and effective little wooden ramp for that step.
But though I’ve spent several nights there, I’ve never seen the second floor or the basement. In fact, as you might imagine, that’s becoming a theme. Going over the list in my head, I don’t believe I’ve been up or downstairs in any of my friends’ houses. Outside of sheer curiosity (and the feeling of being left out, yet again), it’s not so much of a problem. Except for one thing.
The main bathroom, and in some cases, the only bathroom, is often upstairs. In this case, Frank built a half bath off the mudroom, but as an overnight guest, it left one thing to be desired. There was no shower.
So, each morning, with Erica’s help, I stood by the bathroom sink and washed my face, armpits, and undercarriage. It was workable if not ideal for a three-day trip, and of course, we could have been more thorough if I’d wanted.
Other than having to call for assistance due to my inability to get myself out of bed in the morning (because I can’t get up on my right side and chose not to shimmy over to the left of the bed and try to navigate back to my chair on the rug while still half asleep), I had a relatively easy time in their house. On second thought, I’m leaving out one thing: Frank likes a low toilet. Why a grown man approaching six feet prefers to sit on the floor when he poops, I don’t know.
Remembering that I’d barely managed to get myself back to my feet the year before, I knew I’d need a workaround and didn’t bother to test my ability to get up in the usual fashion. I simply no longer possess the core strength to rise from such a height without falling (or risking falling) backwards. I needed something to grab onto.
The toilet-and-sink bathroom is not large enough for me to pull my chair in and shut the door, but that’s to be expected. I’m perfectly able to leave it outside and shuffle a few feet. But because I absolutely did not want to admit that I had come to a place where I needed help up off the toilet, I thought I could use the arm of my chair.
Because I knew I’d be pooping with the door open, and a couple of curious small children were in the area, I had to inform our hosts of my post-breakfast constitutional. “Natty’s in the bathroom, please give him some privacy,” I heard Barbara call in her kindest kindergarten teacher voice. Excellent.
I pulled as far in as I could while still leaving enough room for me to lean forward and get to my feet. I moved my stocking feet inch by inch into position, and because my would-be handle (the arm of the chair) was still too far to my right, very carefully tapped the joystick forward until the footrests had almost hit the back wall. (I do not like to move my chair while not physically in my chair for multiple reasons, most importantly I don’t want to run into myself or do anything to cause myself to fall.)
Satisfied with the odds that I’d be able to get back to my feet, I pulled down my sweatpants, held onto the arm of my chair, and lowered myself onto the much-too-low porcelain. Without getting too far into the physics of wiping, I will say that despite having gotten used to the ease and wonder of a bidet, I’m fairly certain I cleaned myself up quite admirably. If I’d had an upcoming shower, of course, I wouldn’t have been so particular.
Erica and I drove to Newport on Saturday. I didn’t want to bother with the hassle of getting myself into the front seat for the 90-minute drive. Instead, I stayed in my usual second-row jump seat. The combination of my placement, the excess road noise from driving at high speeds in the rain in a van with no insulation under its floor, and my weakened speaking voice, made for limited conversation.
The rain was still falling as we pulled into the handicapped spot at the front of the parking lot. Because it was raining and I was getting hungry for lunch before touring The Breakers, I devised a plan to eat in the van. It’s not something I’ve done before―eaten or drank in the car. At least not without someone bringing the food to my mouth. But sitting in my chair in the van, using the thick plexiglass tray that bolts onto its arms, I was able to wolf down (wolf down is a relative term in this case; I may have only tried to be quick) a protein bar and a banana while sipping water through one of my long metal straws.
Upon backing down the ramp in the wind, I realized immediately that I needed a jacket on top of my hoodie. I stood up from my chair in the rain and Erica slid each of my arms into the coat, zipped me up and, upon request, pulled the hood over my head. It was 52 with impenetrable cloud cover and still raining, the remnants of Hurricane Ian. The ocean view for which the house was built would be a disappointment on such a miserable day.
I rolled over the neatly maintained pebble (not gravel, not dirt) path, past the massive iron gate to the guard house to buy tickets. Indeed, there is a guard house just inside the gate―of course there is. After a pitstop in the bathroom, we were directed to the far side (the left side) of the entrance for the wheelchair ramp.
This seems like a good time to say, from the moment the staff members saw me, I was paid kind and special attention. And it didn’t feel phony, like it was only a part of the job. Like you may know whether an interaction with a receptionist or server feels genuine, I’m sensitive to how I’m treated by strangers. Without retreading ground I’ve covered many times before, I felt respected by the staff. Each one of them looked me in the eye and treated me as an intelligent adult―as they would anyone else. It doesn’t seem a lot to ask, and yet, I feel the need to make note.
I don’t want to get into describing the house and its features. It would take hours to write and I could never do it justice. Erica and I followed the group on a prescribed loop through the first and second floors. I was often singled out from the crowd, whether due to a staircase or imp narrow, secret door between bedrooms.
It certainly wasn’t the first time I’d felt it, but as one of the ushers pulled back the rope and directed me to the elevator, I felt all alone in a room full of people. I was instantly transformed to a night just a few weeks before. My freshman roommate―up for a visit―and I went for a drink at Foam on the Burlington waterfront on a Saturday night. I drank two beers through a straw in a couple of hours sitting outside on a late-summer evening, and twice made my way to the bathroom. Besides my fear of light-headed falling at the urinal, perhaps due to the extremely unusual presence of alcohol in my bloodstream, I found myself looking around at the carefree, youthful, and attractive twenty and thirtysomethings and thinking, yet again, Why am I always the only one? Though the crowd at The Breakers couldn’t have been more different, I felt exactly, absolutely the same.
Eager to tour the oceanside gardens in the rain, we made our way to their entrance after taking a few pictures of the house. To our surprise, we found a single step stood in my way from getting onto the meandering path through the gardens. Given the ramp at the front door, the additional ramp in the foyer, and all of the conspicuous efforts taken to make the experience accessible (to all who can afford the $28), the lack of foresight took us by surprise. And it would have been so easy to fix; the drop was no more than a curb.
To seek an alternative route (and vent her frustrations―that’s who she is), Erica reentered the house while I successfully held onto the umbrella. We were given a separate path to try and two free pity-tickets without expiration. It turned out a poor substitute, as we couldn’t get near the oceanfront or the back of the building, but given the weather, we were both ready to leave nonetheless.
I was wiped out on the drive back, but couldn’t fully relax sitting upright. My modified Dodge Grand Caravan does not have the smoothest or most comfortable ride on the highway. It drives like the entry-level (cheap) minivan that it is, exhibiting an ever-present shake. The jump seats seem to amplify the issue, their headrests vibrate in an almost unbelievable exaggerated manner.
Needless to say, a combined 3 hours in one of those seats was exhausting. It’s mostly my neck―the motion of any drive can be tiring. And this was the second straight day without my usual, hour-long afternoon nap, whose principal benefit may be to rest my weary neck.
Our hosts ordered pizzas and like the previous night, we ate dinner with the kids at the oversized kitchen island. Unlike the previous night, no one was drinking and we all got to bed before ten. Despite feeling thoroughly worn out, I didn’t sleep any better than the night before, which is to say, I mostly lay awake.
Following eggs, toast, and coffee (tea for me), another strategic trip to the bathroom, and help washing and dressing, we took some group pictures in the driveway before getting on our way around 11. I climbed into the front seat through the door and Frank drove my chair into its place in the van. We stopped again in Brattleboro for gas, but this time I stayed in the car. Erica fed me a protein bar while she drove, holding it up to my face so I could take bites. She held up my water in much the same way while I took pulls on the straw.
I haven’t been on a lot of trips in my van; it’s hard to find a driver and companion. There aren’t that many Ericas out there. I’ve been looking for someone new, unsuccessfully, thus far.