More Than My Illness

It has been bothering me that, so far, this blog is about living with MS. (Two whole entries--you can tell how patient I am!)

In the last few years getting Dancing with Monsters (the book) to the world has felt like an important mission to me, but I'm determined that it--and my life--not be entirely about illness. The point isn't that MS stinks. The point is that understanding chronic illness as a creative process has made it easier for me to endure.

I met with the "first reader" of my manuscript yesterday (thanks, Barb!) and she told me (among other things) that the parallels between creative process and illness are not well explained.

That message strengthened a call back to painting that I've been feeling lately. What a relief, what a JOY, to put paint on paper again! It's a mystery that I hold myself back from something that nourishes me so well.

The challenge (the Overwhelm) is to describe the painting process in words because any graphics within the text of the book cost me $100 apiece and I am a cheapskate. Can I do it?

[Part of me answers: "Who cares? Just paint!"

Nothing is easy; Everything is a blessing

Here's the game since my last post: I wore one of those silicon wristband (mine was from the MS Society and said "HOPE" on it) to remind me to fake cheerfulness. Every time I noticed it, I said to myself: "Nothing is easy. Everything is a blessing."

The first thought is to combat the impatience and anger I feel when what used to be effortless things (typing. for instance) are difficult and slow. I know it's not exactly a positive thought and those folks who practice affirmations would be horrified by it. It's easy for me, though, to want to give up when I can't do what I used to be able to do. I watched a video, once, of an artist with Cerebral Palsy. That guy worked very hard to pick up a brush and move it across the canvas. "Would art would pull me hard enough to keep at it if it were that difficult?" I wondered. I hope so. "Nothing is easy" releases me from fear of discomfort.

The second thought is to steer me towards gratitude. I am lucky. I am around people who love and/or tolerate me gracefully. I live in abundance far beyond my basic needs. The inconveniences I face because of my disability really are just that (inconvenient).

I kept the wristband on for three days.

I'm not sure I was noticeably easier to be around; I kind of doubt it. I felt better, though--less ornery. The effect lasted for a couple days after I stopped wearing the wristband.

Then my primary scooter broke down. I can't walk anymore, so that was A Big Deal. Luckily (blessedly), I have a backup scooter. After an evening in the manual wheelchair (and THAT's harder than it used to be!), I switched to the little portable scooter. Until about nine months ago, that little scooter was all I had. When I got the larger, more comfortable, one it took a while to get used to it. I was hoping switching back would be. well, easy. (A techie co-worker suggested I wanted to be able to "reset to defaults.") Nope. Cuz nothing is easy. Add ninety degree heat and surging (or is it dropping?) hormones.

I missed two transfers yesterday (spent time on the van floor waiting for rescue but a long lost friend called while I was waiting) and then had to ask for lots of help. More chances to practice patience, humility and gratitude. Catch the rhythm?

Still, orneriness is on the rise again. Where did I put that wristband?

Overwhelm Cha Cha

I confess that I was secretly hoping that finishing the book (which is in semi-final draft form at this writing) would be some sort of graduation for me. Oh, not a physical cure. Aside from the tiny "miracle happens here" space I reserve, I'm beyond hoping for physical cure.

My orneriness over the last weeks has shown me I'm not beyond hoping for emotional perfection. Nor am I beyond being a sulky (at best) four year old when I don't get it.

My physical symptoms have increased in recent months. At first I was patient with my tears, my new fears, my clumsiness. But I wanted to get through it and be done. I wanted the "new normal" to arrive and the struggle over.

I've had several days in the last month where I've gotten out of bed using my new procedure and pretended the New Normal had arrived. (The new procedure is to put the scooter right next to the bed and use my arms to slide my bottom from bed to scooter seat. I used to use the walker and walk a few steps to the scooter.)

"I've got it now!" I crow inside. "Things will be easier again!" Then I go into the bathroom and can't transfer to the toilet. The crowing bird crashes to earth and I'm swearing and in tears.

I have been doing the cha cha with Overwhelm for weeks and I'm getting tired of it.

Can I manage to "get over it" and "be serene and good humored" through sheer force of will?

On one hand it seems unlikely, on the other hand: what else is there? This feels like a "fake it until you make it" situation.