degenerative disease – joy murray art~stories~life

On the Road Again

October 13, 2021Posted in degenerative disease, disabilityLeave a comment

After 2 months, they finally got the joystick controller on my wheelchair replaced and I am on the road again.

In these days when I was pretty much confined to my house, I learned a lot. I learned how to get groceries delivered (Only one store in Memphis will take SNAP food benefits, Aldi’s, which often has limited stock). I became more comfortable asking for help. I adjusted. And since I was sick for a lot of September, it wasn’t as if I could go anywhere anyway.

I also learned that taking walks is a huge part of my creative process. These warm fall days have been so beautiful, but I couldn’t really stroll the neighborhood or the nearby park in that janky loaner chair they gave me. Now that I’m mobile again, all kinds of ideas are percolating.

When the service guys came to install the joystick, I told them what a terrible loaner chair it is, and asked why they didn’t have more and better chairs for when a repair is going to take a long time. They said their company services East Tennessee, North Mississippi, and East Arkansas. They have 10 loaner chairs. They go through times when they aren’t needed, then all of the sudden, all of them are loaned out. I also asked why they didn’t keep joysticks on hand. They said there were too many different kinds for different kinds of chairs, so it would be too expensive to keep them on hand, and they’d have to have a shop the size of Amazon. And the insurance paperwork delays things.

But it bothers me that they didn’t have more compassion for me and others with mobility impairments, that they weren’t able to provide me with a safe wheelchair so I could get around the neighborhood. And it bothers me that I had to ask for a loaner chair, that one wasn’t offered as part of the service. I have a manual chair, but I’m not strong enough to use it all the time. And I certainly can’t use it on these cracked and bumpy sidewalks in my neighborhood. It was a huge adjustment in my life, and they didn’t seem to care at all.

Yesterday, I got to go to the grocery store all by myself. I visited parts of the neighborhood I hadn’t seen in two months — gardens, wild growth, cute houses, decaying houses, trees I love, and, of course, road construction. Halloween decorations are up here and there — always interesting to see how and what people put up for the season. I can go in my yard and off road a little bit. This chair can handle up to 3 inches of curbs or street cracks. And it supports my back and the seat is right depth for my legs.

It felt so good.

And now I have a huge poncho that folds up and I can carry with me where ever I go, so if I get caught in a gullywasher again, I can protect my chair’s control mechanism.

I still have to wait a month to get a new cushion for the chair. But while I was using the janky torture chair (really, if a chair doesn’t fit your body and doesn’t have good shock absorbers, it can cause all kinds of old aches and pains to arise, not to mention the possibility of pressure sores), one of my patrons gave me the money to buy a cushion that helped tremendously. So now I’m using it on my chair. (What great support! My supporters on Patreon also helped because I had enough money to get things delivered. People are so kind!)

Life is good.

~~~

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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.

If you’d like to make a one time donation, you can do so at paypal

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Sick Days

September 19, 2021Posted in degenerative disease, disability, Uncategorized10 Comments

The morning glory vine is dying and yet it’s blooming more than ever

The night before my 61st birthday, I got sick. I got a kind of stomach flu, usually a 24 hour sort of illness that dragged on for days. I had meds to keep me from getting dehydrated, but I couldn’t eat for several days. I was very weak and unstable. Somewhere in the midst of the brain fog, I knew I shouldn’t be entirely on my own. But I didn’t have any idea how to ask for help. So I slept a lot. And slowly I got better. But I didn’t bounce back. I still feel like parts of my brain are offline.

Usually after an illness, I get a burst of energy, but it didn’t happen this time. In fact, I was ready to check out assisted living situations. And I did. They were all too expensive. And I’m afraid if I get into a subsidized facility, if we have another lockdown, I’ll be totally isolated from my friends and family. So now I’m beginning the process of getting some at home assistance.

I talked to a few friends about it and they were so kind and generous to me. Lots of helpful advice and offers of support. They will help me navigate into the next phase of my life, which I think may have started before I got sick, I just didn’t notice it.

There’s always been this force inside me that prodded me forward to goals. I’m not one to sit inside myself too long without coming up with a project to keep me afloat. Creativity has always been my life line. I’ve changed goals a million times, and necessarily met them, but I always wanted to make things — stories, fabric art, art. Oh art, so flexible and infinite in it’s variety, so many shiny heights to aspire to, so many golden paths to wander my way out of my struggles with my body.

But this time, the thought of getting back to my creative work exhausted me. A 20×24″ canvas seems huge. The way I tend to the paint and brushes, the cleaning and mixing rituals, none of that holds the charm it did. It feels strange, but I’m not sure I’m going to cling to my work the same way that I did before. The work is not work, should not be work, but a sublime journey, with difficulties, for sure, but it’s a way up and out of the challenges of mortality. To think in color, to capture a vision, an image — to tell a story — it’s a moment of transcendence. Of joy. But it’s hard, too. It feels quite difficult now.

While I recovered from the worst of my illness, but was still sick, I wrote in my journal about the frustration of life in pain, of all the roads in my life that have lead to weakness, but within that song of despair, I kept asking is there a way of finding joy. Both a centering emotion and my name. I don’t want the illness to take my identity, my joy.

Then I felt a shift, thinking how fortunate I am to be settling into this new state of limits, when actually, a limitless world is still available to me. Media technology may be a mixed blessing, but it allows me easy access to the entire world. I can see the whole of the planet through the window of my computer, my reading device, my phone, even. I can go places that, even if I were healthy, I could never get to. I started watching travel videos. Let me see the scope of this blue planet before I leave it.

I can text friends. I can call for help in the middle of the night. I’m not alone. I just have to train myself to remember that and ask for help.

I keep choosing life. It’s a sad old world, and so beautiful. So full of magic. A friend came over and we crossed my street to watch chimney swifts do their amazing dance as they descend into an old brick chimney for these September and October nights. There’s a big pipework project on my street that’s developed to the point where it’s impossible to get across without walking a block over, where there’s a break in construction. There are a couple of men living rough in that little park now, and I’m still in my wobbly loaner wheelchair, so I don’t feel safe going across the street on my own. (The men are obnoxious at times, but mostly stay to themselves.)

I can see the swifts from my porch, but getting closer, I see the dance so much more clearly. Sometimes, at dusk, the birds seem to just pop out of sky. It’s clear sky, then a full flock of 50 birds fly in and start circling the chimney, on or two dropping in. It’s a pleasure to watch, and also to hear the little gasps of delight from my friend. The swifts fly in a circle so big they disappear and reappear again until they all finally make it into their night shelter, sleeping with their claws clutching the walls, hanging on for dear life.

Dear life. I want to sketch that one day soon. Not today. But soon.

~~~

Thanks for reading my blog. Feel free to share it, if you’d like.

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.

If you’d like to make a one time donation, you can do so at paypal

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

You can subscribe to this blog by email in the link below this post.

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

Didn’t it rain?

August 21, 2021Posted in degenerative disease, disability, Uncategorized, wheelchair life6 Comments

*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 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.

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.

~~~

Thanks for reading my blog. Feel free to share it, if you’d like.

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.

If you’d like to make a one time donation, you can do so at pay pal

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

You can subscribe to this blog by email in the link below this post.

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

Stuck

July 20, 2021Posted in degenerative disease, disability, gardening3 Comments

I’ve mostly adjusted to life using wheelchairs. I love them — my power chair and manual chair. I can go many places but not everywhere I want to. The power chair can handle a lot of different surfaces, but does best on flat paved ground. Of course, it does well on floors and indoor surfaces.

If it hasn’t rained too much, I can get around on grass, so I can get out and see my garden.

It’s been raining often lately, but it’s still quite warm. I’m seeing mushrooms pop up and they delight me. I want to take photos of them, but often they are in places I can’t get to.

A neighbor’s garden got an extra bit of zen from mushrooms (I was able to get close because this is close to the driveway)

A few days ago, I saw huge yellow fungus that had grown up overnight under the oak trees across the street. The trees are surrounded by an island of mulch. I went to see if I could get close enough to get pictures. There were about six big yellow blobby mushrooms. I tested my wheelchair on the edge of the mulched area, and it seemed to be able to move okay.

I flew across the mulch and got a few photos of two, then turned to get another.

I don’t know what kind of mushroom this is — a brain mushroom?

Then I wanted to go photograph the others and tried to move the chair. And it didn’t move. The wheels dug into the mulch, which was damp from the rains. I tried different speeds and pushed my weight around at different angles, but the wheels just spun.

I was stuck.

I felt like such an idiot. I also felt an acute sadness at not being able to follow my whim and capture pictures of these wonderous bits of nature.

I phoned my son and he was home. (I have a list of helpers I can call and he’s first on the list.) He came in about 10 minutes. It seemed a long time to me because my sense of stupidity and loss seeped into my entire being. I started to cry a little bit.

When my son arrived, he disengaged the motor of the chair, and pushed and pulled it out of the hole I’d dug myself into. He took time to marvel at the mushrooms. A young woman jogged by, but stopped to see if we needed help. She asked if the garden across the street was mine. It is. She’d seen me sitting on the porch.

“I always love walking by it. It makes me happy.”

It makes me happy, too.

My son walked with me across the street and made sure I was safely in the house. He didn’t chastise me for my foolish pursuit of images.

I sat out on my porch for awhile, surrounded by plants I have full access to. I’ve photographed them hundreds of times. Every year I still get a garden. The whole world isn’t accessible to me, but I have a good space.

This is disability pride month. I’ve seen people with disabilities online showing their amazing lives and ways of getting around. I’ve see people with disabilities let nothing get in their way. But I know they struggle, like me, with limits and barriers that no amount of pride or strength will break down. It’s not bad. It just is.

Within my limits, I know I have a lot of riches. I doubt if I were able bodied, I would have developed the eye for detail that made me notice the mushrooms. I couldn’t take the time to nurture my porch garden. The reason I love and respect plants so much is that they are rooted, immobile, but they grow, bloom, fight and flourish from their one small place in the world.

I thought about my list of people who will come help me when I get in trouble, need rides, get stuck. When I feel the limits of my life are unbearable, this circle of friends (I include my kids in the circle) come to put wheels on my troubles and we move forward together.

Friends are the best assistive devices. Friends are accessible. There is always an accessible bridge between our hearts.

I bought this celosia the day after I got stuck — something more to see up close while the mushrooms continue their lives at a distance

~~~

Thanks for reading my blog. Feel free to share it, if you’d like.

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.

If you’d like to make a one time donation, you can do so at pay pal

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

You can subscribe to this blog by email in the link below this post.

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

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