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.
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:
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.
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.
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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17 thoughts on “Talkin bout my degeneration….”
Thanks for sharing this, Joy, and I’m so sorry to hear this. It nearly made me cry. You will have my blessing continually in heart. Leandras.
Tears are shed by everyone who is blessed to live a long life. Thank you for your kind thoughts.
Positivity is always welcome.
Beautiful writing as always. You are in my thoughts and prayers Joy.
Thank you so much.
This is a very moving account of the process. Your creativity and spirit is inspiring … after I recover a bit from my fighting some of the reality of your words. You, and these other artists that share their talents under such difficult challenges, tell me how the creativity you all have inside you is a factor. Just as not everyone has these particular challenges, not everyone has the talent & creativity & necessary persistence required to accomplish so much. Perhaps one could develop skills to make up for what isn’t flowing from inside – that would be my hope if I am in such a situation. Aging itself sets up a much milder form of challenges. So what you discuss has relevance to anyone who is lucky enough to be elderly, as well as those facing particular challenges that may not be visible to others.
So much is going on all around us. I’m concerned about the future of sentient life on this planet. And the role that humans play in bringing pain and devastation to animals & other beings. The present actions of people is crucial to long term survival. Making the best of each day seems to be the best approach.
You make the most of each day. And you inspire others to do the same.
A big, gentle hug to you & much love,
On Tue, Jan 28, 2020 at 5:52 PM joy murray –art ~ stories ~ life wrote:
> Joy Murray posted: “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. Fortunat” >
Thank you for your thoughtful and kind response. I would rather have a less challenging life, but books and art and music and community involvement have all helped give me the strength to deal with it. I have made mistakes for sure, but I’ve been lucky, too, to be around positive, thoughtful people. I feel so grateful when I can find a way of looking at this disability in a more positive way. Just to think of it as graduation instead of degeneration takes a great deal of weight off how I can envision my future. The future of the world and sentient beings is another matter, but yes, living one day at a time, and embracing a simple life helps me feel that there is hope for our planet. You are certainly doing a lot to make the world a better place. It’s nice to feel your hug and love. Take care, Martha.
Joy, lady, you will always be my hero.
Thank you dear. We keep finding grace in life, and you are a part of that in my life.
My disability is not neurological in origin, but you and I are experiencing many of the same graduations in our lives right now. Thanks for sharing this in language that encourages growth with change. Thanks for expressing the value of your life throughout your lifetime. Thanks for your creative and beautiful artistic expressions of you and your life experiences. You rock, Joy!
It’s vital, I think, to have art and positive language to prop us up when we are falling apart. It’s always amazing to me how my personal changes in life resonate with others. I’m glad we have this medium of the internet to share and grow with each other.
Hi, Joy. I seem to be living very far from you, but your words have kept me reading till the end of the post. As long as you as you, and I, are connected here on WP I’ll be glad to continue reading you and enjoying your work.
Thank you so much. I enjoy your art and writing, and am glad we can share things from far away.
Dear Joy – what a beautiful and heart wrenching explanation of your disease process. I have lived far away from you for many years now and yet still hold dear our years as mothers raising our children together in Memphis. The first day I met you in my Midwife role & have been happy as well as grateful to be able to keep up with you, your art & writings through Facebook. Thank you for sharing your life -it is so important for people to see & hopefully find greater understanding & compassion for others with challenged abilities & to have a greater insight in one’s process. You provide service to others in an extraordinary way – with gratitude & love , Margie
Thanks so much Margie. You made being a mother so much easier for me. And you cured me of my touch phobia, too. That was such a powerful and restorative time in my life. I’m glad we keep in touch, even if we haven’t been able to see each other much. My circle of friends, near and far, helps me so much.
I LOVE how you’re using language to re-frame your abilities, in terms that are positive rather than negative. I think everyone should do this. Thank you for giving me insight into how to adapt to challenges!
You’re so welcome. It’s helped me through out my life to use language to change my perspective. I read a lot of poetry and fiction, so the lessons there have made me see beyond my own experience. Adapt On!
I had at one time replied to one of your word press posts and it went into my address book. I’ll try to remove it or just remember not to use it!!