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I had always wanted to see the Tulip Time Festival in Holland, Michigan. It seemed like an easy trip for someone who needed frequent breaks. There would be plenty of available bathrooms it and wasn’t too demanding, like, say, hiking up to Macchu Pichu, climbing Mount Everest, or standing in line for hours in the heat at Disney World. For a person who doesn’t get out much and wants to make a new effort, going to see tulips was perfect. Besides, tulips signify the coming of spring, rebirth, and hope.

Holland is about a 3-hour drive from Chicago. I cannot handle a drive half that long without breaks, so I needed another solution. I gave up my car in 2011 because it hurt too much to drive. My partner’s car is a Honda Civic, which has a small for the passenger seat, but I have an issue with almost any car seat. Some solutions I found online showed people who modified vans to have seats that lie completely flat. We rented a Dodge Grand Caravan with seats that folded down completely below the floor of the van. On the flat floor, I put a mismatch of things I had around the apartment. I laid a thick yoga mat, two comforters, and a blanket. I lay down in the back and felt comfy and satisfied. This was also a practice for another trip: a 6-hour drive to Iowa for a wedding.

I started out in the front to test out the van’s passenger seat. Although I still had the sciatica pain, it wasn’t as bad as it was in my partner’s Honda Civic. The seat was wider and higher, which raised my hips above my knees. This is the ideal position if sitting is required. Although I felt like I could have lasted longer in the passenger seat, I wanted to arrive at the destination feeling fresh— “back and leg” fresh, that is.  I didn’t want to arrive there in a bad mood due to pain. This is part of my new outlook on pain: preventing it in the first place with open communication. When I tediously describe the act of sitting in a chair, sometimes this leads people to call me “high-maintenance” or “exhausting,” but that’s the price to pay when talking about a disability, at least this disability.

Around Gary, Indiana, we took a bathroom break and I switched to lying in the back on the floor. The trick worked, but not as well as I expected. When you are sitting in a car seat, you are sitting on one big cushion that absorbs the shock of the moving vehicle. I thought the extra-thick yoga mat plus extra blankets would have been enough. Lying on the floor of the van, however, I felt every move, every bump. This may seem self-explanatory to some, but I’ve never been in the back of a van before, at least not on the floor. When the van turned around a corner, there was nothing there to keep me in place, so I had to use my arms to prevent myself from rolling over. I hadn’t expected that. I brought a book, but reading was too difficult. I couldn’t hold the book in place. I put on my headphones and tried to relax. Being on the floor means you cannot see out the window, so it feels a little isolated and boring.

But not all was lost. Lying on the floor was uncomfortable, for sure, but it took the pressure off my leg. My head and neck were bumped around, but the searing sciatica pain was prevented from going down my leg. I switched back and forth between the passenger seat and the floor, never letting the pain get too strong in any one area of my body. This has been the name of the game for me for many years and the key to surviving this disability.

The tulip trip took a toll on my body and my mood matched that. As all the hotels were booked in Holland for the festival, we stayed in Grand Rapids, some 30 minutes away. No problems, though. Grand Rapids was a beautiful city to walk around in, and that helped get all that pent-up driving/sitting energy out of me. The festival went well. First, we went to the Gerald Ford Presidential Museum in Grand Rapids (10 minutes driving and 45 minutes walking). Then we stopped at a tulip garden outside Holland (30 minutes driving and 2 hours walking). Then on to the festival itself (10 minutes driving and 3 hours walking with a lunch and dinner in there). These numbers add up to a good experience—plenty of switching between driving/sitting and walking. Walking takes a toll on a different area of my back, but that’s a story for another day.

For the Iowa wedding trip, we were in the awkward situation where we need to leave Friday morning and wedding was the same night. Six hours of driving and a social engagement in the same day! That was more than my body could handle. Not only did I need to endure two difficult situations, but I needed to smile. I addition to planned breaks and switching between the passenger seat and the floor, I would need to make that floor much more comfortable.

I’ve seen advertisements for mattresses for the backs of trucks and SUVs, but I wasn’t sure if I should spend $200 on a mattress used only in a van I don’t even own. I rely on trains and buses for my day-to-day transportation and don’t travel out of the state that often. And without the rental car/van to try it out in, there is no testing it. I added, even more blankets and mats for an improved ride, although still bumpy and uncomfortable. Most people just get in the car for a road trip. I need to plan it out more carefully.

My partner and I considered buying a van one day and making its floor my regular passenger seat. Parking an SUV would be difficult in my Chicago neighborhood, but if we moved to a more open city that doesn’t have a reliable transportation system like Chicago’s, buying a van to lie down in would make sense. But then I would rely on my partner as my sole form of transportation. He already drives me around plenty, but at least we can talk side by side when I’m in the front seat. When I’m on the van floor, he’s more like my chauffeur, or I feel more like cargo.