Category: degenerative disease

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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