Didn’t it rain?

Carnations on a Rainy Day by Joy Murray

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.

My 20 lb portable manual chair
My power wheelchair when I first got it, after a year’s process, in August 2018. My old chair was donated to me a few years before.

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.

The loaner chair

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.

Flying Dreams by Joy Murray

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This Mysterious World

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I had to pick up a few groceries yesterday at Kroger.  I wanted to find a wedge of a kind of cheese that  my son introduced me to that I couldn’t remember the name of.  A woman who looked younger than me, maybe in her late 30s, tall and pretty, was happily looking through all the cheeses on offer.  “Look at my cart, it’s nothing but plants and cheese.”   She had about 8 coleus and a few other plants I didn’t recognize.

We both had on our masks.  The store was crowded and noisy.  The woman asked me if my wheelchair belonged to me.  It did.  Medicare? Yes.  She was trying to get on disability and wondered if she should get a lawyer.  I said I got on it without a lawyer, but I was first rejected, and it took 11 months for me to get my appeal approved.

She started talking about her disability.  I couldn’t hear her well, but the word cancer pierced through the mask and the noise.  It is in her spine, lymph nodes, breast and other parts of her body.  She had a lot of neuropathy and her legs hurt all the time.  She said she usually ordered her groceries online but her mother took her out today.  I noticed an iodine stain peaking out from the cap sleeve of her dress and smeared on her upper arm.

She asked me a few more questions about getting on disability.  She said she gets confused by all the processes because it’s in her brain, too.  Then she said she heard that there was an expedited process for people with stage 4 cancer.

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She was dying.  This healthy (looking) woman was dying and worried about getting benefits to help her through the remainder of her life.  I asked if her doctor could help, she said he was cold.  “You know, how some doctors just intimidate you.  I wish I could get another doctor.”  She shook her head, quickly back and forth, as if she was trying to dislodge a thought from her head.  Then I saw her eyes crinkle from a smile behind the mask.

I told her I had a thinning spinal cord and she said she’d just read about that, since her spine is weakening.  We talked about pain and the cocktail of drugs we are on.  Even at Stage 4, she worried about the amount of drugs she is taking.  I told her I don’t worry, if they work, I’m happy.

I told her about my porch garden and how we should try to enjoy the beautiful things in life.  She agreed.  The conversation bounced around, and I thought she probably doesn’t get to talk to many people.  At one point she pulled open her dress collar a bit and showed me the swollen skin on her breast bone.  It wasn’t like a bruise, the skin was mottled, the veins a pale blue mapping an area about the size of the palm of her hand.

I saw a woman waiting patiently a few feet away and asked her if she needed to get to the cheese counter and she said, no.  The woman I was talking to said the other woman was her mother.  We all introduced ourselves.  Her mother was small and thin and looked tired.

The woman excitedly told her  mother about the cheeses she had picked out.  Then they looked over a list of things they needed while I rolled away to finish my shopping.

I took a long way home, strolling through neighborhoods I like for their gardens.  I thought of all the noise of the world, all the troubles.  And all the unnecessary ways we hurt each other, when life is so precious and fragile, so hard to hang on to.

People fight small and deadly battles, live lives of pain and financial worry.  How hard would it be to just give dying people the things they need?  Why do we have to fight so hard to get a wheelchair?

We’ve watched people die over racial injustice; we’ve watched them die from corona virus.  We make and take sides over things that we could all be working together on.  Then maybe we could find the energy and funding to make both living and dying a richer experience in this mysterious and often beautiful world.

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This blog is brought to you by the generosity of people who support me on Patreon , buy my art, and who support me in so many different ways

Cards and prints on some of my art is available on Redbubble.  

If you find a typo, let me know, and I’ll send you a postcard.

Stuck

I am still going out in spite of the Safer at Home warnings (But I don’t think it’s safe to go to restaurants yet.)  I usually go for a walk around the neighborhood, looking at gardens and  trees.  I live a few blocks from a Kroger, so I go there for my prescriptions and food.  I can get people to do that for me, and sometimes, I do.  But I want to see people, see who is wearing masks, who is complaining about masks.  I’ve always loved people watching.  And now is a very interesting time to do so.

I do take precautions.

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Can’t touch this

When I go to Kroger, I use the sidewalk on the north side of their parking lot.  It’s usually clear, though sometimes I have to move shopping carts out of the way.  And some people have started using it as a dumping ground.

When I went this week-end, someone had backed their long-bed pick-up truck with it’s back wheels right up against the sidewalk curb.  It had a trailer hitch that poked out even further on the sidewalk.  There looked to be just enough room for me to get by, but one of my electric wheelchair wheels slipped off the side walk and into the strip of mulch and struggling plants.  I couldn’t get it to move.  I was stuck.  I tried several maneuvers to get it going, but the wheel dug into the mulch and wouldn’t go forwards or backwards.

There was someone in the truck.  So I knocked on the truck.  Then I banged on it.  Whoever was in it was either hard of hearing or had earbuds in and was listening to something that kept him from hearing me.

So I took a deep breath.  Someone would come along and I could send them into the store to get some men to help me out.  It felt like I sat there a long time — time passes so slowly when you’re anxious and in need of help.  I do have people I can call to get me out of situations like this, but I thought I could find help there.

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Not Part Of the Plan by Joy Murray

Finally, a young couple walked by in the parking lot.  I yelled, “Excuse me,” and waved my arms around.  They didn’t hear or see me.  I took off my face gear and yelled again.  They heard me.  The man came running over.  I asked him to get a store employee to help me, but he thought he could do it.

He was a thin young man, and it’s a heavy chair and I’m heavy, too.  I was near a light pole, so if worse came to worst I could stand up and hold on to the pole while he moved the chair.  But we just did some back and forth moving, and he lifted it some, and then I was free.  He helped me ease by the truck.

I thanked him profusely, but he shrugged it off.  His partner asked if I was okay.  “We’re glad we could help.”

The man in the truck never moved or saw a thing.  I should have given him the evil eye, but I was so happy to be rolling again that I didn’t think about it until I was in the store.

Then, to make matters better, they had toilet paper!

So no evil eyes for anyone.  I was rescued, people treated me politely, no one laughed at me in my protection get up, and a gentle spring breeze accompanied me on my way home.

I took another way home, because I’m not risking that janky ass side walk again.

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It’s complicated by Joy Murray

I hope you stay safe and find kindness and toilet paper in life.

 

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This blog is brought to you by the generosity of people who support me on Patreon , buy my art, and who support me in so many different ways

Cards and prints on some of my art is available on Redbubble.  

If you find a typo, let me know, and I’ll send you a postcard.