Tombo Triptych

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Cruisin’, part 2


I ‘ve been out and about with my bad motor scooter – taking the short bus to Freeport (home to Maine’s #2 tourist destination, L.L. Bean, and a very accessible little downtown), and to Falmouth, and yesterday into Portland for a spin around the Museum of Fine Arts (to be dazzled by Georgia O’Keeffe, Marguerite Thompson Zorach, Florine Stettheimer, and Helen Torr) – and I was immensely pleased with the SmartDrive‘s performance at every location – brick concourse, concrete sidewalk, museum floor. The only hesitations were from my inexperience and lack of trust. Even when it popped off the chair, it was doing what it was supposed to do. It was easy to reattach, and each time I learned a little something new. Brilliantly simple.

There is always a “but…”. I wonder why there isn’t some sort of geared wheel hub that would offer a transmission brake to slow the chair when going down hill. Relying on my grip on the handrims is both difficult (was that smoke rising from the palms of my gloves?) and dangerous if my hand strength should give out – look out below! Bike mechanics, engineers, makers and tinkerers – can this be done?

Allow me one more ranty rave – the SmartDrive is a life changer. My solo outings I would never have even attempted under my own power, knowing how limited my strength can be. One of the things I used to love to do, and one of the dearest things I lost to disability, was wandering the streets with my camera. Thanks to the SmartDrive, I have that back again. Now I look at the bus map and realize that, theoretically at least, I can go from Yarmouth to destinations on my local route, including the Downeaster train in Portland, which offers me essentially…everywhere. That might not seem like much to most people, but as someone for whom those horizons previously came with enormous obstacles, being able to look at the map and see such possibilities is, pardon the expression, huge. A simple hunk of technology like the SmartDrive is empowering and liberating.

Discuss: “It’s exciting that a woman who is transgender can go to the bathroom that she identifies with, bizarre that the disabled community can’t.” (I cannot find the attribution for this.)

No Mind

I feel like I have plenty to say lately – I have a growing list of prompts and drafts and notes to myself, lots of great topics – but when I sit to begin putting actual words together, I feel stumped. I don’t know what it is. I blame the easy scapegoat of MS for robbing me of my ability to write coherently. I’ll keep at it – god knows I have plenty of time.

I was awake all night – again – last week, so I sat up, took my phone camera and made this.898

There’s more (if you want to see) at Captured Light.

I have also re-discovered My Counterpane, a vibrant online community of MS people – people who immediately know what we’re talking about. Wander over and introduce yourself.

It’s the little things

Problem: when you spend your days in a wheelchair, how do you carry your wallet, cell phone, keys, etc. Solution:

  • A hoodie, with kangaroo pouch pocket. Hip. And let’s face it, we wheelers are always on the lookout for steeze. Available in many colors and styles. Can be emblazoned with your favorite band logo or catch phrase. Downside – not so good in warm weather. My current favorite:


  • When it’s too warm for a hoodie – Cargo pants. I feel like a little cub scout when I wear them, but having access to pockets outweighs the style factor.

And now, this:

After the Snack.


Here I go Again

There are too many false starts and rough drafts piled up on my desk. I sit down with a great idea that seems fully formed in my noggin, only to find when I sit down to write it, after a few sentences, it’s gone like a puff of smoke. So, OK, I put it aside, save it to the draft folder, along with all the other great starts. I’ll come back to it, I tell myself. But when – if – I do, I can never seem to find the thread, search as I might. I chalk it up to the slipping transmission of my MS brain.

Someone said that the definition of insanity was doing the same thing over and over, expecting different results. So, thinking myself not to be insane (which is debatable), I’m going to try something different. I’m going to post random stuffs here – photographs, the occasional very short story (I seem to be able to manage very short exercises in fiction), quick thoughts and observations. Etc. I think I had always intended this blog – seems so self-indulgent – to be about more than just MS. Just as I am.

So. To that end, here’s a new photo from the other day. I’ll figure out how to create links here to other photo galleries and external things. For today, my little brain is about spent.


From “The Littles.”. You can see more of them here.