Are We There Yet?

When I go through an illness, I like to wait until it’s over or I’ve adjusted to it before I start to talk about it.  For most of my life, since I was 16, I’ve had a neurological condition that defied diagnosis.  It started with seizures, then I developed weakness in my lower limbs  For a while it was possible Multiple Sclerosis, but I was diagnosed as “abnormal.”  When I was 46, after a thin slice MRI of my spine, they found a lesion in my thoracic spine (as well as a fracture vertebrae,) and diagnosed me with Transverse Myelitis.

Journal cover from 2005

The good thing about that diagnosis was that while my nerve damage couldn’t be repaired, it wasn’t degenerative.

Only it was.  Subtly at first.  A lot of my decreasing my mobility was blamed on increasing osteo-arthritis in my lower limbs.  I made a progression from cane, to walker, to sometimes wheelchair use.

Pursuit of Happiness (2)
Journal sketch 2013

Still, as I was considering leaving Portland, I had the feeling my upper body was getting weaker.  I have become quite clumsy.  I began to fall more often.

A few months ago, I had a pinched sciatic nerve that caused me some of the worst pain I’ve ever experienced.  My new neurologist ordered a complete MRI of my brain and spine.  The good news was my brain is fine.  The bad news is my spinal cord is thinning and he believes I have a condition called “Heredetary Spastic Paraplegia.”

“Hereditary spastic paraplegia (HSP) is a general term for an expanding group of rare genetic disorders characterized by slowly progressive weakness(paraplegia) and increased muscle tone and stiffness (spasticity) of leg muscles. The age of onset, rate of progression, associated symptoms, degree of muscle weakness and spasticity, and overall severity of HSP can vary greatly from one person to another, even among individuals with the same subtype or among individuals within the same family.”


It’s more rare than Transverse Myelitis.  I don’t know of anyone in my family who has it.  The neurologist said it could be caused by a genetic mutation as much as being passed down through the family.

I told a friend I thought I’d lost a part of my identity by the diagnosis change.  She said she didn’t think it was so much a part of my identity, it’s just something I have.  But I went so long without having a diagnosis, and there were many times when I thought I was some sort of hypochondriac.  With a name for it, it was validated.  And, of course, I took hope in the assurance that it was NOT a degenerative condition.  I’m degenerate enough, thank you very much.

are we there yet 2


But over the years, there was always evidence that I was weakening.  And there was always a little bit of guilt about not doing more physical therapy, perhaps I wouldn’t be getting so weak if I exercised more.  It’s that modern faith in the exercise cure-all that I didn’t feel I was living up to.  But even when I was doing water-aerobics and Tai Chi, I was weakening.

never going back 300 dpi
Illustration for the music video Never Going Back to the Gravity 2014

I rode a bike til I was in my 30s, then I couldn’t, my feet fell off the pedals.  I lost bowel and bladder functions — talk about adding insult to injury.  I tried diets, exercises and all kinds of “cures,” but the steady weakening was there.  I could blame it on age, even though I knew people in their 70s, 80s and 90s who hadn’t weakened at nearly the rate I had.  I think the diagnosis was my own little faith cure, my island, my way of minimizing the condition and getting on with my life.

So now, I’m processing this new diagnosis.  Later this week, I go to have a “nerve conduction” test, to see how much the nerve damage has spread.  The good news is I’m still sensory in tact, and in many ways hypersensitive.  I still have a sensual life.  And the sciatic nerve pain stopped.  The neurologist gave me better medications for controlling spasticity and leg spasms.  It also helps with mood swings and for the first time for decades, I don’t feel like my life is too hard, that death would be a good solution to all my problems.  That’s a huge weight lifted off of me.  I think I can make it through.  I am a survivor.

As soon as the pain was under control, I started painting again.

But it hasn’t been the kind of manic, I better get this done before all hell breaks loose kind of energy, or the desire to take on bigger projects than I can manage.  If anything, I’ve cut back on a lot of stuff.

I’m tired.  And disappointed.  And frustrated.


And it’s okay.  I don’t have to find a silver lining to this situation, although I will, I know.  That’s my nature.  I don’t want to dwell forever in a place of mourning for the life I couldn’t have.  And I’m lucky to have friends with varying degrees of disability who make my life easier and give me perspective.

Still, I will probably never get better.  Chances are I will get worse.

But still, there’s a little wild Joy inside me that’s already doing an unaccompanied dance to the internal music that has gotten me through this far, and will take me where I need to go.  I won’t limit myself to this sad aspect, I know.

But for now, I’m sitting with my impatience and sorrow.

And it’s okay.  It’s all going to be what it is, regardless of what I think should happen.  What a gift it is to age, to learn, to cry, to transform.

Turtle Dreams 001


If you’d like to support my art and writing, please consider becoming a patron on Patreon.  It costs as little as a dollar a month and makes you eligible for exclusive content and free give-aways of my art.  January 15, I will be giving away this painting:

Bougainvillea in the Rain, mixed media on paper, 7×10″

Some of my original art and crafts are for sale on Etsy:  \

You can get prints and cards of some of my work on Redbubble:


11 thoughts on “Are We There Yet?

  1. I love the “Are we there yet?” drawings especially, though they’re all lovely. And your reflection on diagnosis, identity, and coping is fascinating. Thank you for sharing!

    1. It was very cathartic to draw and share the grumpy drawings. I always try to expand my ideas of what is a thing a beauty I think going forward, I’ll be pay more attention to the beauty of such expression Thanks for reading!

  2. Joy, this is so lovely. I’ve never followed a “blog,” but I’m going to try to figure it out and follow you! Take care.

    1. Thank you Debby. Now that you’ve followed it, you should just get an email each time I publish a blog, which about once a week, unless I’m in my turtle shell 🙂

  3. Ahh…a new diagnosis…the good news and the bad news. Wow. You’re dealing with tough stuff, Joy. Thank you for sharing it with us. Your visual expressions are strong and beautiful. 💕🎈

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s