chronic illness – joy murray art~stories~life

The Slow Life

July 30, 2019Posted in chronic fatigue syndrome, chronic illness, Uncategorized8 Comments

Most of yesterday was cloudy, which is nice in the summer when the sun can be so hot. It stayed in the low 80s, so it was nice.

I felt sluggish. I have for the past month, had that feeling of moving through syrup that people with chronic fatigue are familiar with. Even though I have had neurological problems for 40 years now, I still get frustrated by these bouts of fatigue. I am able, mostly, to keep up with my social obligations — in fact, I find often it helps to be around other people. I kind of leech off their energy. Although sometimes I can’t answer questions coherently, and forget things, I still like to be with other people.

Then I nap. I don’t get much artwork done.

I have had a morning writing practice for about 5 years now, but this last month I just stopped. I slept. I told myself it didn’t matter whether I wrote or not — and I have all these piles of composition books filled with nothing much.

Yes, that’s a sign of depression.

I’m being treated for it, but fatigue and depression, they are part of my life, no matter what I do.

My son’s been helpful. He paints with me sometimes, gets me out of my lethargy bubble. He’s in his thirties and energetic. But after we painted for about 2 hours, he said he was tired and took a nap on the couch.

I was delighted. If he needs a nap after painting, then maybe I’m not so abnormal after all. It is intense work, even if it’s nourishing work. I took a nap, too.

So this morning I did my morning write: I wake up, make a cup of coffee, get back in bed, prop up the pillows and write in a notebook for as long as I need — usually about 30 minutes. Most of it is just recounting yesterday, or working out a problem. Sometimes a real story or poem will flow out and I’m there to catch it.

The day starts with words. It helps my memory. It’s a space that’s all mine.

And now, here I am writing a blog post again. One creative act leads to another.

Late yesterday afternoon, the clouds got a darker shade of gray, thunder rumble like long monstrous growls. A light rain sprinkled down, then a heavy rain drenched the ground. As the sun set, it lightened up, and for a while it rained while the sun shone.

The light changed as the sun sank lower on the horizon, and glowed a golden pink. A magical kind of light that made my little bit of the world like another planet, with soft light and sweet damp air.

I am so lucky, so very lucky, to have a life that’s slow enough that I can see such moments, savor them from beginning to end, to watch the sky fade from the magic of daylight to the rich dark blue of night.

Yesterday, I accomplished nothing. And I accomplished everything.

~~~

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.

Visual Journal – Connection

November 28, 2018Posted in chronic illness, handicap, Uncategorized, WheelchairTagged Connection, gratitude1 Comment

I went to a new mental health clinic. A friend of mine drove me and I used my new light weight wheelchair.

The clinic takes medicare and medicaid, so there were lots of older people and people with disabilities. In the middle of the the parking lot, was an older woman in a wheelchair. Her back was so hunched over that she had to tilt her head sideways to look at anything besides her lap. She had one leg amputated below the knee.

As far as I could tell, she was by herself, dropped off by one of the non-emergency medical transport companies. She looked so frail, but was also able to get around in what looked like an extremely heavy wheelchair — up and down the ramp, and over thresholds, into the clinic. I needed help from with that from the friend who drove me there.

When the older woman saw my wheelchair, she was delighted.

I used to get lots of compliments and questions about my 3 wheel walker, an easily maneuverable thing that didn’t take up much space. Then I became too unstable for it, so I started using the standard 4 wheel one. I found that I missed the attention I got with my old walker — I guess I felt I was a cool handicapped person with the 3 wheel one. None of us are immune to wanting a little attention and compliments.

Now I’m using a wheelchair most of the time. I have a power chair for everyday use and a manual one for when I need a ride somewhere and can’t take the bus.

So, when this frail, friendly woman started complimenting my chair, it felt really good — that she noticed me and took time to tell me, in her own way, I was lucky. And, as often happens, when I go to clinics, I realized how much movement and mobility I still have.

I had a good session with my new psychiatrist, but I think the thing that felt best was my brief connection with this woman, her clothes tattered, her body bent, her eyes a milky blue, her life limited but so alive. And though it was a short conversation, it lifted my spirits. What people go through, what they survive — it seems like resentment would cloak us all, but over and over again, I see people find a way to shed bitterness and share their sweetness and light.

IMG_20181128_0001_NEW — In my journal, I tried to capture her glow as well as the golden autumn light that shone on our brief meeting.

~~~

Thanks for reading my post. If you like it share it. If you find a typo, please let me know and I’ll send you a thank-you postcard.

You can now follow me on Instagram@joymurrayart and Twitter @joymurrayhere. I no longer have a facebook account.

You can get prints and cards of some of my work on Redbubble. They also print my work on lots of other items, including phone skins, tote bags, shirts and journals:

https://www.redbubble.com/people/JoyMurray?asc=u

If you’d like to support my art and writing, please consider becoming a donor on Patreon. If I get enough supporters, I can make this blog ad-free! Here’s a link to my Patreon page:

https://www.patreon.com/user?u=8001665

If you prefer to make a one time donation, you can do so at paypal.com Please email me at joyzmailbox@gmail.com if you’d like details.

Birthdays and other reasons for pause

September 8, 2018Posted in aging, chronic illness, Daily Draw, degenerative disease, Uncategorized, visual journal11 Comments

September is always like the beginning of the year for me. I guess I got into that feeling when I was in school and it seemed I was older, a younger self left behind, often with disdain.

It’s also the month of my birthday — and most years that’s a cause for celebration. But I always slightly resented September weather — it’s “supposed” to be cooler, but here in Memphis we usually have summer heat until October. After living in the cool wet Northwest for about a decade, though, I made my peace with September heat. The wet weather there was exacerbating arthritis pain, so now I just enjoy an extra month of baking but hurting less.

September is my daughter’s birthday, too.

This year I didn’t get the birthday buoyancy I usually feel for just surviving and outliving an early prediction about my lifespan.

When I first got sick, back when I was 16, with seizures and weakening muscles, I was told I might have any number of degenerative diseases that could end my life by the time I was 30. It was 1976, before there were MRIs and the kinds of tests that can diagnose disorders better. I stopped having seizures in my mid-20s. But my legs continued to weaken. I had “possible multiple sclerosis,” or more often, the diagnosis was “abnormal.” Then in my late 40s, they found a lesion on my spinal cord, and gave me the diagnosis of Transverse Myelitis, a rarish disease, but one that should be stable.

Only it wasn’t stable. I lived for about a decade in denial of increasing weakness and body changes. I blamed instability on my osteoarthritis. I sometimes gave myself a hard time about not exercising, or eating poorly. But when I did those things, I didn’t improve.

This last year, I got a full MRI work up and it was discovered my spinal cord was thinning and I have an even rarer disorder called “Hereditary Spastic Paraparalysis.”

Through it all, I’ve always imagined I’d be a partial user of a wheelchair, but would still be able walk some, around the house, get in and out of bathtubs, have some balance. I would still get in and out of friends houses and restaurants with just a walker and a helping hand upstairs. But that’s all fading a bit. I keep falling. The reality of my own delicacy has been as hard as the floor on which I contemplate the loss of independence. I am an advocate of interdependence, we all need each other in many ways we take for granted, but still….

I know I’ve talked about this on my blog before, but the upcoming birthday has made me melancholy. I have bi-polar and feared a depression was settling in. Then I feared it wasn’t, that I’d become a melancholy and anxious old woman.

I didn’t plan a party or an art show. In fact, I’ve been a little blocked about everything.

But I’ve got great friends and family. I’ve spent the last week being taken out for meals, given presents, and given support. I allowed myself to talk about my fears, my disappointment, my delusions. And my friends, they listened and they gave me the best gift — their understanding. Nobody has tried to undermine my mourning of my strength, they just subtly and emphatically proved that they’d be there for me. There is a hand on my elbow when I’m in dangerous terrain.

I had felt like an abandoned scarecrow, like the crows had pecked me apart. But sort of like in the Wizard of Oz, my friends put me back together, and got me back on that yellow brick road — even though we all know the Wizard is just a guy improvising his way through life like the rest of us.

It’s a lesson I learn over and over — that in spite of my fears, I have love in my life, and that kind of assistive device will carry me through anything. I am rich beyond belief. Each day there is some jewel out there shining for me, if only I keep my eyes focused outward. I know that it’s impossible to do on my own, so learning to rely on others has been the biggest gift of it all. To trust. To love.

I am thankful for another year of being in this world with my friends and family. And to all of my internet readers and supporters who listen and provide insight and share their own struggles.

Thank you.

IMG_20180908_0004 — September 9th starts the new year for me 🙂

My Guerrilla Garden

August 13, 2018Posted in chronic illness, gardening, UncategorizedTagged inspiration2 Comments

This summer I’ve spent a lot of time communing with plants. I’ve had some changes in my life. My adult daughter moved in with her two cats. She’s going to help me out around the house while she regains her financial composure after changing careers. So my studio got smaller, but it’s a good thing for us both.

I planted a lot of flowers in pots on the porch this summer, and if you follow my facebook page, you’ve seen the progress of that enterprise.

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In the back of my house, in the neighbor’s driveway, there’s been an abandoned motorcycle since I moved here over a year ago.

At least it looked abandoned.

I wanted to take some good close ups of the rusted gears, and the way things that once moved become stationary. I have transitioned to using a wheelchair for most of my outdoor and indoor activities this year, and I felt a bit of attachment to the rusting old thing that once must have glided with ease through the streets of Memphis. My photography was limited, however, by the quality of my camera as well as my ability to get in close without my own wheels getting stuck in the gravel pavement of the driveway.

I decided in the spring to use it as a guerrilla garden. (I sometimes plant left over seeds in abandoned lots and in other people’s property just to see if they grow.) I started adding pots of plants that might vine into and over the bike. It’s in an awkward place, not much soil, inconsistent sunlight. But I know plants strive to grow no matter what, so I went ahead and sneaked plants onto it.

But it didn’t really look right to me. So I went ahead and planted some purple hearts in the ground around it. I also planted some morning glory seeds hoping they were strong enough to handle the thin layer of soil under the gravel and dry conditions. And within a month, things were growing:

And the morning glory was more than prepared to take a ride on those old wheels.

My neighbor told me about mid-project that it was indeed his motorcycle, not really abandoned by some former tenant. He’d bought it to fix it up, but that he’d never had time to. He was happy that I was able to create a little garden with it.

Then a few weeks ago, he told me that someone had bought it to fix it, and would pick it up soon. It’ll be interesting to see if the morning glory will continue to grow even when the support is taken out from under it. I’m not worried about the purple hearts, they grow and grow. They don’t let circumstance stop them.

For now, though, the old motorcycle is still there. Thriving in it’s disrepair. Rust settling in deeper and deeper and my little bit of wild gardening twining through it.

This summer. I’ve felt like I’ve been in a fallow period artistically. I haven’t been painting a lot. I’d planned to paint the flowers I grew on the porch, but instead, I do brief pencil sketches then just sit back and meditate on color, on growth, on life. On Change. I keep thinking things in my life will settle, but sometimes it feels like change keeps knocking me off course.

My morning glories, hibiscus and moonflowers bloom only once and then they fall away, their bright brief task in life carried out with color and grace. They go to seed and another flower takes it place. I check the plants each morning for buds and for new flowers. My marigolds, petunias, celosia blaze out, and will bloom til the end of summer. It’s mid-August and I’m sure they know their days are numbered as the sun slowly changes angles and they keep growing towards it. And I am with them, every day, watering, tending and delighting.

So, now as I see my garden’s progress, I don’t feel it’s been a fallow time. Only a change in season. All these little growing things are here for the summer, then they will go fallow, and with or without me, they will come back.

I think we all need fallow periods for our roots to grow, so when the time comes, we bloom freely and with whatever color we can muster.

Life is change, but I feel rooted in it nonetheless.

Thanks for reading my post. If you like it share it. If you find a typo, please let me know and I’ll send you a thank-you postcard.

You can get prints and cards of some of my work on Redbubble. They also print my work on lots of other items, including phone skins, tote bags, shirts and journals:

https://www.redbubble.com/people/JoyMurray?asc=u

If you’d like to support my art and writing, please consider becoming a donor on Patreon. If I get enough supporters, I can make this blog ad-free! Here’s a link to my Patreon page:

https://www.patreon.com/user?u=8001665

If you prefer to make a one time donation, you can do so at paypal.com Please email me at joyzmailbox@gmail.com if you’d like details.

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