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.

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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.

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Twilight Memories

Last post, I wrote about my journal organizing project.  I’m gleaning through a journal I wrote in January 2014.

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The cover happens to match a color-your-own postcard from the Georgia O’Keefe that’s on my desk now.

I lived at Bridge Meadows in Portland, Oregon, from 2012 til 2017, an intergenerational community designed to support families adopting children out of the foster care system, and to provide people 55 and over with affordable housing.  It was designed to provide a sense of place and purpose in life.

It made it easy for me to be a mentor for children and also participate in classes and events that I wouldn’t have transportation or energy to get to otherwise.

One thing I did was participate in writing workshops.  The Joy of Writing was run by a patient and wonderful poet in her 90s.

This was written at the workshop on February 6, 2014.  I found it while organizing my journals:

Prompt:  A Twilight Memory

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Doodling opens up my writing when I’m stuck.  I get stuck often.

Twilight.  Moonlight.  Delight.  Dream light.  Dream right.

I love to go down to the river at sunset and watch the harsh sun soften and melt into layers of pink and gold and turquoise.  The light blue sky darkens to indigo as the sun dips lower and lower behind the horizon.  The water reflects all the color and then, as twilight comes, it darkens, too, rippling like a pool of indigo ink.

I was born in a river town — Memphis on the Mississippi.  If I went too long without visiting the river, I would feel a strange sense of longing that could only be soothed by sitting on the bluff watching the river flow.  As a girl, and young woman, I couldn’t always stay past sunset.  Even sunset was a dangerous time for a female alone.

All the creatures of myth and story — man-eating gar, river rats the size of hound dogs; the giant catfish would come to the surface and breathe misfortune upon you, emerged in those moments when the sun was sinking low.  Ghosts of men who drowned — the murdered disposed of in the deep dark water — they got their chance to wander at twilight.

But really, I would have been thrilled to be chosen by a ghost or colossal bullfrog.  It was the living that I really had to fear.  My brown mystic river bordered a city where many were desperate, wicked and mean.  It was not a safe place for anyone.

One of the true pleasures of my life was when I was dating an agreeable man and we went down to watch the sunset together.  I felt safer.  My date probably felt that two of us made a less obvious target.  

The sun set.  Twilight arose.  A million stars and a thousand fireflies lit up around us.

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While reading this, it reminded me of another journal piece from  2012  when I felt torn between my two hometowns.  Memphis eventually won out, but the rivers of Portland still flow through my heart.

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River self portrait – 2012

We are all composed of rivers and longing, even those in land locked areas, feel the river of life flowing through their veins.

What do you think?

~~~

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.

Slight Changes

In the past 15 years or so, since I started blogging and being a part of the internet community — the world wide web — this blog has undergone many changes and formats.  I have written on dealing with chronic pain and long term illness, art, books, and life around me.  My appreciation for it all.  Gratitude, beauty, reality.

ink bouquet
Still life in motion, 2012

I’ve posted from my journal, my visual journal.  I’ve promoted my art.  So much thinking, observing and blathering.   I wanted to share the interesting, ephemeral, and beautiful things that pass through my life.

Shifts in my life, cause shifts in the blog.

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About 10  years ago, I began keeping a morning journal, where I just write.  I start the day with words, trying to improve my memory, trying to keep some tenuous relationship to story and poetry.  For a while I kept one journal that had both stories and sketches and art.  At some point, I separated out the morning write, the diary part.  Too much  personal information and rumination in it.  I liked to show my visual journal, but I also want to write about private things — puzzle out life in a secret place.

I feel that I haven’t really written “real” stories and essays for a long time — other than this blog.

Dandelions

I’m now organizing my studio and journals.  I have the space now to put them in chronological order.  I’ve moved so much, that I have at times purged all my journals, but since 2010, I’ve tried to avoid that urge.  That insecure feeling that my writing is worthless, that what I do takes up too much space.

And why I am hanging on to all this?  Why shouldn’t I let the past flow on by me like river water, let it go, let it drift away.

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But since life is a puzzle, I write and draw to try to figure out it.  I try to preserve bits of my life and thoughts, good and bad.

Years and years ago, I read an interview with the poet Audre Lorde.  She was going through cancer treatment and couldn’t write poetry.  She kept a journal though.  When she was well, she went back and looked through her journals and found an abundance of poetry.  It wasn’t something she set out to do, but it was part of her, she wrote and when she was ready, she read and found her poems, bits of herself.  She held the space for the future in which all she’d been through began to make sense, or at least shine with a kind of beauty that became poetry.

healing heart 002

Though I started writing poetry in my teens, I leaned more toward prose as I got older and then in my 30s, I started making visual art. First in fabric, then in watercolor, now in acrylic and collage.

Storyteller 1

My artistic inclinations are married to my physical being.  If not for art and stories, I don’t know if I would have survived my Hereditary Spastic Paraparalysis (HSP), a rare degenerative disorder, most likely caused by a genetic mutation.  My symptoms started when I was 16 and for 30 years I had no diagnosis, and was considered abnormal, with possible MS.  Then I got a diagnosis of Transverse Myelitis.  Now the diagnosis is HSP.

Dandelion

So, as I organize my journals, I’m going to glean out what strikes me as relevant to others, or particularly important to me — things I did to keep living and cultivating delight.  Even if it is infused with tragedy, there is delight here on this confusing earth.    This imperfect, beautiful mystery,  entwined, riddled with tragedy.  Filled with light, muted by night, giving so much, explaining so little.

first tulip

And that’s what I’ll be sharing more of here.  The stories I find as I re-read the life I wrote of myself out a compulsion to understand my life, and to capture the stories that swirls around me.  It won’t be in chronological order.  Just what I find as I read through the piles of blather.

I guess that’s not so much different than what I’ve been doing with this blog all along.

 

joyous 001

~~~

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.

Reblog from Kam Redlawsk

I shared this on my facebook, but wanted to make sure my blog followers saw it to — gardening, art, inclusion,changing how we see our destiny and being our best, healthiest self.  Artist Kam Redlawsk speaks about creating in a fragile human body, and Ron Finley is leading a way back to the garden:

https://www.kamredlawsk.com/blogblog//ron-finley-choose-your-weapon?fbclid=IwAR3qo6LSAhiboMGZOw_Evd1z_epyWA4-IMRf-k2HOdJPf203oelwENZM1pQ

Photo+Feb+10,+12+28+42+PM