Talkin bout my degeneration….

Over the course of last year, I’ve had to stop cooking — handling pots and pans had become dangerous because my hands are weaker.  I can stand some and move things carefully, but once while moving a pot of gumbo, my legs went out from under me.  Fortunately the gumbo spilled away from me and not on me.  But that was it.   Even if I sit in my wheelchair, my hands are weaker now and I’m likely to drop things.  I use a microwave and a toaster oven, so I can still heat stuff up and there’s lots of healthy options for that.  I just never saw myself as a convenience food person — I was a good cook and liked to make things from scratch, but life has intervened in that.

Over the holidays, I had to tell friends and family that I couldn’t come to their houses any more.  I need wheelchair access and most of them can’t provide that.  Their houses aren’t built in a way that can be modified for wheelchair use.  I bought a portable ramp to use for a low step or two, but many people have more steps.  Doorways aren’t wide enough.  There’s not enough turn-around room in the house.  So people come to me now.  Or we meet at a place that is accessible.

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Visual Journal Entry, by Joy Murray

I’ve had my degenerative illness since I was sixteen, but it wasn’t properly diagnosed until a few years ago.  Hereditary Spastic Paraparalysis causes a thinning of the spinal cord.  It’s been most aggressive in my lower body, but now my hands are slowly weakening.  This past year seemed like the whole degeneration process sped up.  I’ve had hypersensitivity most of my life, now I’m experiencing loss of sensation.  

I’ve struggled with ways of talking to myself about it.  How to still love myself and see a good future, to relate to others, to do the things that make me happy.  If I lose use of my hands then what?  It’s scary.

But I’ve got a few good role models — in addition to a wonderful circle of supportive friends.  I’m quite impressed with artist Lydia Emily,an artist with Multiple Sclerosis.  She has fiercely held on to her creative self while dealing with the symptoms she develops.  I love this picture of her, and that paintbrush holder.  It’s brilliant:

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Lydia Emily

Language is important to me when I speak about or to myself.  I was raised in a very negative environment, and have spent my life changing the mean and messy self dialogue that goes on in my head.

I’ve heard many people speak of the death of a loved one by saying they graduated.  “My grandmother graduated and her funeral/wake is next week.”

When I was at my sister’s house over the holidays, I used a walker, and had three people helping me up the few steps into her house.  I told her we should have future holiday celebrations at my house.  It would have to be potluck, prepared by everyone except me.  My son said, “She’s pretty much wheelchair bound now.”

I thought about that wording.  I am a wheelchair user, and the wheelchair liberates me.  I’m not bound by it and I am bound by it.  If the wheelchair can’t get into a building, I can’t get in.  I am bound and limited by my body, by the way I have to walk — or roll — in the world.  For most of my life I’ve had the option of the walker, or a cane.  Life was more painful, more precarious — I fell a lot.  Before I started using the chair, I fell about once a month.  I’m very good at falling and rarely hurt myself too badly, but, it was just too dangerous to continue.

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Watercolor and collage Visual Journal entry, by Joy Murray

Some people said if I started using a chair, then I’d get weaker.  But I was getting weaker no matter what.  I was tired, so tired, of pushing myself.  My wheels open up a lot of the world, but they keep me out of a lot places, too.

Part of living a healthy life, even with a long term disability, is acceptance.  So, as I was searching for ways to accept my weakening hands, I thought about artists like Emily Lydia, who have adapted.  If I lose use of my hands, then I’ll graduate to a new level of adaptation.

Just like I graduated to full-time wheelchair use.

If I use the word graduate, I feel that I’ve grown out of one way of living into another.  The word graduate carries with it a sense of accomplishment and elevation.  I have learned something, I am on higher ground.

When I was drowning in a swamp of fear and sorrow over a future that involved limited use of my hands, or maybe no use, I eventually remembered a woman I met 30 years ago.  She had quadriplegia, but she had a fully automated wheelchair, powered by slight movements in her hand and movement in her mouth.  She was an art student and drew and painted with her mouth.

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She Carried On, by Joy Murray, 8×10″ Acrylic on Canvas

And there are many mouth painters, people who work within their limits and escape them at the same time.  They’ve learned a new skill, and graduated to a higher level.

So that’s the story I’m telling myself now.  I’ve graduated to full time wheelchair use.  I don’t cook anymore, I’ve graduated out of that.  I’m learning new lessons now, going for that doctorate of life, specializing in all the aspects of a thinning spinal cord.  There is no easy A and no way to change the course of it.

I know I will continue to find mentors who will show me ways to expand my worldview, and I will continue to have ways to create, no matter what.  And to love, and to feel wonder at the way life has of surprising me  — of opening my heart to what life is offering me, instead of only seeing what it is taking away.

Here’s a short film about painter Antonio Davis made by the Obama Foundation:

 

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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.

 

Fat

I’ve been concerned about gaining weight since I started using a wheelchair more.  I’ve never been thin, and I’m usually happy with the body I have,  but I get worried about my looks and then obsess on what I consider my flaws.  I never judge others so harshly and I really like diversity in body shape and personality.

But like many, I also have this illusion of what I should look like.  That I should fit in those “healthy weight” ranges that doctors recommend.  I exercise some and I try to use my manual chair when I can, but the nature of my handicap is that I get tired very easily.  I also really like to eat.  Good food is one of the true pleasures of life.

So I think I’ll continue to struggle with it, with body image.  Does this wheelchair make me look fat?

I visited my 102 year old friend, who is in a wheelchair that tilts back a bit, so her belly pokes out more than she’d like.  “I hate that it makes me look so big,” she once said when she was having her picture taken.  I thought, how can it be this lovely woman can reach 102 and still be worried about that?

A few days ago, a friend of my brought me a fat laughing Buddha.  It’s a white ceramic statue.

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Since I’ve had it, I’ve had such a better attitude about my body, my life, my luck.  I’m lucky to have friends who give me a better perspective than I could ever attain on my own.

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He’s in my studio/bedroom so I see him first thing in the morning.  I once I heard a story, I can’t find any evidence of it anywhere, but I liked it.  After a life of austerity and fasting and working towards enlightenment, when the Buddha got older, he got happy and began to enjoy all the bounty of life.  That’s why there is the austere Buddha and this one.  It’s not true, but I like it anyway.

 

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So, this wheelchair, this body, makes me look like I’m enjoying life, getting out there, trying to get as much light as possible into my heart.

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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.

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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

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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.

Drawing Myself

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August 29, Joy Murray

People often ask what’s wrong with me, or more rudely, “What happened to you?!?”  I try to give as short of an answer as possible because my story is complex and I know most people don’t want to hear all that.  “I have a degenerative disorder,” is my standard answer.

But terms and words jangle around people, and I caught myself wondering about these things, how to describe myself and others with dignity — you know short of just calling them by their name.  I usually don’t ask about a person’s physical make-up, unless I see someone in a cast or with stitches that weren’t there before.  And I know them and care for them.

Anyway, I had to go three places yesterday where using a wheelchair wasn’t an option.  I wonder sometimes when I’m in a wheelchair permanently, how I’ll get places.  I’m working on it, checking out medical transport and the Memphis PLUS bus.  But for now, I can still hobble a bit.  So sometimes I do — but only when others are with me, in case I fall and can’t get back up.

When I got settled and rested, I drew myself with a handy cap.

It cheered me considerably.

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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 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.