How We Get Home

12 bus stop

At the library bus stop, there was a man obsessively touching and rearranging his plastic bags.  He had a few groceries, but they were jumbled in small bags that he put in a larger bag of easily torn plastic.  The large bag was shredding.  It took me a few minutes to realize he was blind.  His eyes were mostly closed and slightly sunken.  He had a bottle of Sprite that fell on the ground and rolled a few feet away.  I told him, but he said he had to get his bags together before he picked up the bottle.

I had a cloth bag that folds up in my purse.  It’s made of strong stretchy cotton and accommodates a lot of stuff.  I was in my wheelchair and I rolled over close to him.   I asked if he was blind.

“I can see a little.”  He didn’t have a white cane, only a walking cane.  He had a bit of crust along his eyelids.  I was concerned that he was alone, that his cane didn’t indicate he was blind like the white ones do.  I understand the need to be self sufficient, I often take risks going out alone in my wheelchair.  The need for independence and to get places on my own is strong and I’m stubborn.

I explained the bag to him and said he wouldn’t have to worry about it tearing like a plastic bag.  He asked what color it was. I said it was shades of blue in a kind of checkered pattern.   He looked hesitant.

I said, “It’s okay if you don’t want it.”

He sighed.  “I think I’ll pass on it.”  He went back to fiddling around with the plastic bags, peeling off layers of plastic.  I backed away.  I had an urge to chase after the bits of plastic blowing away, littering the library grounds, but it would be impossible in my chair.

He got irritated.  In frustration, he banged his body against the back of the bus stop shelter.  His Sprite bottle rolled further away in the wind.  I was afraid to ask to help him again.  I thought he didn’t like my interfering and had taken a dislike to me.

Soon, a woman joined us at the stop.  She was short, elderly and looked frail.  She wore a white face mask to either keep germs out or keep from spreading them.  She was dressed in a purple fake fur coat, a blue skirt and purple boots.  She had on a wig that was slightly askew.  She pulled a small suitcase on wheels with a purse attached to the top with a bungee cord.

The sun came out.  It was about 40 degrees.

“That sun sure feels good,” the lady said.

She took a good long look at the man fidgeting next to her.  She began to talk to him softly.  She opened her purse and it was stuffed with plastic bags.  She went through them like she was going through a filing cabinet til she found the exact right size.

She gently but firmly urged the man to put his things in her bag.  He agreed.  Then she got another bag out of her purse and double bagged his bags so he could make it home without losing anything.

“I think I dropped my pack of cigarettes,” he said.  “I can’t find them.”

We looked with him.  He tapped around frantically with his cane.  With the sunlight beaming on his bags, I could see the shape of a pack of Marlboros through the translucent plastic.

“I think they’re in your bag.  They’re Marlboros, right?”  I said.

He said nothing.

“They’re in the bag,” the woman said.  “Marlboros, right?”

He felt around the bag.  “Yes.  Thank you.”

I felt a little miffed and wondered why the woman had such a better rapport with him.  He sat down quietly, compulsively rubbing the plastic as we waited.

The bus arrived.  It was crowded but they made room for my wheelchair,  no one grumbling about giving up seats for me.

The blind man didn’t get on the bus, but stood looking confused.  The woman with the suitcase got back off, and guided him on.  There were no seats and people crowded the aisles.  But they all  moved back more and someone gave him a seat.

“I took care of my uncle who went blind,” one woman said.  A man said, “My mother went blind.”

The woman who helped him with the bags stood by him and got him to tell her where he needed to get off the bus.  “I’ll help him if you have to get off before his stop,” a man said.

“We’re going the same way,” she said and her eyes smiled.  By then, to me, she no longer looked masked.  Her kindness made her smile visible.

When I got off the bus, the people standing had to get off the bus so I could get out.  The woman wished me a good day.

So much of life seems scary and people seem uncaring.  When I got across the street, dodging a car that didn’t see me because they were talking on the phone, braking inches from me — I thought that blind man shouldn’t be out on his own.

Maybe this woman in a wheelchair shouldn’t either.

But, safe on the sidewalk, a few blocks from where I live, I felt in my heart he would get home.  Some people may speed through life oblivious, but sometimes they look up and brake in time.

Kindness still weaves it’s way into our lives,  keeping us as safe as possible.

And sometimes, it shows up in a mask and purple coat —  patient, with a soft voice and a bag filled with exactly what is needed.

010 (2)

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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 facebook here,  Instagram@joymurrayart.

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.

Botox for Muscle Spasms

Two weeks ago, I was given Botox shots in my lower legs to help stop muscle spasms, cramps and relax the over-tonation of my calves that result from my Hereditary Spastic Paraparalysis.  I got about 100 shots — just kidding, it was more like a dozen.   I have been worried about loss of sensation in my body, but boy, I felt those shots!

I love my neurologist, who is kind and patient and always gives me lots of information.  He doesn’t mind that I ask the same questions over and over, or that I go off meds then back on, then off again.  He has that rare quality of letting me have some say so, and some mood swings, in my treatment.  He figures a degenerative disease is a hard thing to deal with.  I know he sees patients who have a lot worse symptoms than I do, but he knows my struggles are difficult, too, and honors that.

When I leave, he always clasps my hands and bows, thanks me, and tells me to go live my life fully.  (He’s not from the U.S.)

Yesterday, I had my check up and we’re pleased with slight relaxation of my calves and that the night time cramps have been reduced (though my feet still twitch).  I’ll get shots every 3 months, and hopefully things will continue to improve.  Not to the point of actually walking, but a bit of the damage in my legs will be alleviated and I’ll be more comfortable.

Since my doctor is the kind of of person who spends quality time with his patients, he’s often late for our appointment.  I can hear him in the next examination room assuring or laughing with a patient.

I usually read, but yesterday I drew in my little notebook from the posters on the walls.

parkinson's sketch
From a Parkinson’s Disease poster.  You can see the ghosts of previous sketches and writing in the scan–it’s very thin paper.  It’s a very thin page between who we were and what we’ve become.
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From a poster on migraine symptoms, the brain so complex, so efficient, but so vulnerable to dysfunction, so much can go wrong.

Life is so complicated and precious.  I think of how I’d not get any treatment at all if I didn’t have Medicare and Medicaid, so I’m so grateful for that.  The shots are going to cost thousands of dollars as time goes by.

Decades ago, I heard a doctor speak of the cruelty of numbers, how we try to budget the quality of life, and it is something that can’t be contained within the small world of economics.  It’s a thought that’s remained with me throughout my life.

Life doesn’t fit in a budget. Health, in all it’s manifestations, is priceless and precious.  I have a handicap that has reduced my ability to move, but very expensive treatments cause small improvements, relieve pain, and opens the boundaries that biology has randomly built around me.  I take part in the community, I cultivate beauty and delight for those around me.  I serve as an example of what health looks like, even when compromised, I am a healthy person.  Handicaps and illness are a part of life.

I hope we can all keep working to make sure healthcare is available for everyone.  We are all going to get sick, have accidents.  Upheavals in our health are lurking inside us.  Let’s keep working to understand this, honor this, and make sure everyone benefits from the medicine and care that is available.  Let us mind how we go.

20190126_152610
He gave me a rainbow

~~~

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 facebook here,  Instagram@joymurrayart.

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.

Mermaid at the Art Institute of Portland

I had an opportunity to donate one of my wheelchair mermaids to the Art Institute of Portland’s (www.artinstitutes.edu/Portland) Feast for the Eyes fundraiser for both the school and the Oregon Food Bank.  I was delighted to hear that she became a sort of talisman for the organizers of the event.  Her spirit and tenacity inspired them when things were getting frantic.  Both Eden Dawn Killen, Producer,  and Bree Perry, Auction Team Coordinator,  were glad to have her there.

If you want to see the kinds of fashions new graduates of the Art Institute of Portland are designing, check out this photography site in a few days.  Pics from both auction and the show will be posted:  Onscreen Imaging, http://www.osiphotography.com

This is part of a series of wheelchair mermaids I’ve made over the last ten years.  Years ago I saw a film on women with disabilities and one feisty woman who was born without legs told children she was a mermaid.  In Hans Christian Anderson’s Little Mermaid tale The Little Mermaid, Ariel gave up her voice to get legs and appear human.  I’ve met so many people who are rolling forward — talking, singing and laughing in their wheelchairs — that I have no doubt if Ariel had gotten better guidance, she would have come on shore anyway and developed even greater power.

She is handstitched and needlesculpted.  The cloth is all cotton and her hair is Homespun brand yarn.  She is part of an original series but is a one of a kind work of art.