Last Friday, August 13, I got caught in a rain storm on the way home from Brooks Art Museum. I’ve been caught in the rain before, and it’s irritating because the chair cushions get wet and it takes a long time for them to dry out. This time, though, the rain seeped into the joystick, the mechanism that runs the chair, and about a block from home, the chair just stopped. No puttering or slowing down. It wouldn’t move at all.

At the time I was in the street because the sidewalk was blocked with trash bins and piles of yard waste. I was next to a storm drain and rain water was gushing down from the gutters. I didn’t want to disengage the motor (you can do that with two levers on either side of the chair so it can pushed manually) because I was afraid I would roll into the gutter or the storm drain. The street isn’t level — it’s been paved over so many times it’s a hill of asphalt. I was tilted.

I tried getting it to start a few times but it was dead. I called my son, and he was home and could come help me out. As I waited, cars wooshed by and a sense of vulnerability rained down on me. I wished I had some kind of flair to light in case a distracted driver didn’t see me. I remembered my flashing lights on the back and front and back of the chair. I hadn’t used them in a long time because it’s summer and I’m rarely out in the dark anymore.

I got them on and waited. It was about 10 minutes but seemed like an eternity. My son parked his SUV next to the chair and got me out of the rain. He then disengaged the motor and began a heroic struggle to get the chair into the vehicle. It weighs probably 150 lbs. or more. I tried to look up how to take it apart on my phone, but it’s not that kind of chair. A youngish man stopped and helped, so they got the chair in — it fit. It lay like some spent and defeated robot in the back.

My son got me home, got my manual chair, got me in the house, got the chair out of the SUV, got it up the ramp and into the house. We were soaked. Once I got in dry clothes, I called the wheelchair company service department. They said I had to let it dry out for a day or two and see if it worked then. The manual chair I have is not really built for my body. I got it so I could get rides in other people’s cars — it’s lightweight and folds up easy but it’s not meant for everyday use. And I have arthritis in my hands, so continued use increases my pain.

But I am glad to have it.

Monday I had an appointment with my neurologist. One of the things I already needed to discuss was getting the seat cushion replaced on my chair. It’s 3 years old and I’m starting to have pains in my butt. (Life can be such a pain in the butt.) When I talked to the wheelchair company, they said the doctor had to send a prescription and “a physical therapist will have to be involved.” Okay, fine, another layer and delay. I don’t mind a PT being involved. I want a good cushion because I don’t want to get pressure sores. But there was no way to get the chair serviced and the seat cushion replaced on Tuesday, when the person who services the chair would come out to look at it.

On Tuesday, the repair person came out, tried the joy stick. It turned on, but it’s stuck in the fastest mode, which is unsuitable for indoor use, especially since I have some cognitive delays and already sometimes run into walls and tables. (Plus I have a fear of going out the front door and flying off the porch like a broken ET. There are steps out there, my entry ramp is at the back door.) The repair person said, well my work here is done. “I’ll put in an order for another joystick.”

It’s going to take two to three works — getting the order in, getting medicare and medicaid approval, and getting back here to install it.

I had to ask if there was anyway I could get a loaner chair. No they didn’t have any.

And there was no real recourse.

The repair person wasn’t completely without sympathy (after I asked for it). He went back to the shop and found an old chair that I could use. He put in my batteries (it’s nice to know they weren’t damaged in the rain.) The replacement chair is not built for my body either. It’s also not designed as well. It’s a front wheel drive and the rear wheels are worn and janky. They wobble and it feels like they have their own agenda. A friend said they were twerking, which gave me a more lighthearted way to deal with it. Still, it doesn’t feel like a safe chair for running errands and travelling the neighborhood in. Or going out in the yard and communing with the garden. And the cushion is still a problem.

But the team of Joy Helpers are doing what they can to make sure I get my food and medications in.

It was a rude awakening to be stopped so completely. I forget my mobility is totally ruled by my wheelchair. If it breaks down, then I don’t get to move about. The powers that be will approve a wheelchair for a person who needs one once every five years. A machine that gets used everyday in all kinds of circumstances is not going to make it 5 years without some need of repair. Businesses that contract with public health services often run on a tight margin and they don’t keep stock around; plus they have to file the paperwork to assure they get paid. It took me almost a year to get the chair I use now. And I’m very grateful for it.

But this latest rainstorm may take a month to recover from. And I’m in limbo about the cushion.

I needed to get back in touch with both the neurologist and the wheelchair service provider this week, but I couldn’t bring myself to do it. There is only so much of this game of bureaucracy I can take before I start to feel the beast of depression start munching at my spirit. And so I’ve just read, rested and even painted some. The days of stress had taken a toll on me, I was exhausted by it all. I was running on anxiety and nervous energy. I watched some videos on how to better manipulate a manual chair and one bit of advice was to get rest. So I did some meditation, some stretches, danced a little in my twerking chair, and took some deep naps.

Sometimes resting is the only way to win a battle. To stay healthy and hopeful. To ease the pains in the butt.

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