I’m down here!

iuHugging someone in a wheelchair is not all that different from hugging someone…not in a wheelchair. It doesn’t have to be like in the picture (the only image The Google was able to offer me). Although I bet that was one of best hugs either of these two ever had. It’s really pretty simple, if you think about it.

Just come down to my level. I’d come up to yours, but you can see how that’s not going to work. Pull up a chair or kneel down, squat if you have the leg strength. Hell, sit in my lap. We just need to be at eye level – the same as you would do if we were both standing. The rest should be self-explanitory.

That protocol also applies to holding a conversation with a person in a wheelchair. Craning my neck, trying to bridge the three feet between your height and mine, is uncomfortable. Neither of us wants to be in this physical relationship, me way down here and you way up there, but there’s nothing I can do about it.

I realize as I write this that I have not done my part in this dance. I have not suggested to the people who awkardly bend down to give me a hug that there is a better way.

So I’ll ask. Come down here and give me a hug. We’ll both be better off for it.

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.

Take a spin in my head

I wrote this after being rudely awoken, far earlier than I would have liked, by my near constant companion Jimmy.)

How about this. You wake up in the morning feeling like someone has been pounding on your left triceps.  If you’ve ever climbed a big mountain or done a long run or trail hike, you might know what this feels like. Except, this morning, you have the pain without having enjoyed the climb that caused it. It’s just there. No reason, it just aches. There’s medication, a whole bottle of it, right there beside your bed, that might, in an hour, dull the pain. Or it might not, no way to tell. Either way, as a side effect you will spend the morning in a fog – dizzy, weak, uncoordinated, disoriented. And desperately tired.  You get woken up too early every single morning with a variation of the same pain. It might be the other leg, or your lower back, or one shoulder or the other. Pain is pain, am I right? Thinking clearly is over-rated ayway.

Tell me – would you reach for the pill bottle, or decide to ride out the pain, which will probably go away on its own eventually. Or it might not. Give it some thought, if you can with that ache in your leg.

Second Level Stress

The Prophecy Merry go Round - 201 Blog.Is there no end to the parade (or is merry-go-round a better image?) of MS symptoms to identify and cope with?

As if the pain of spasticity, general muscle weakness, lassitude, and cognitive deficits were not enough, now I find “Second-Level Stress.”


  • Poor relationships due to changing roles and expectations.
  • Increased work stress from diminished productivity or performance.
  • Increased mental health symptoms.

The last including anxiety disorder. Apparently, people with MS have a 43 percent chance of meeting the criteria for an anxiety disorder. Now, I wasn’t out fishing for new symptoms to adopt. I’ve been feeling increased anxiety for months. Thoughts that seem to speed up out of control, feeling tense and increasingly fatigued (though I’m not sure how much more fatigued I can feel), decreased ability to focus or concentrate – these are all things I’ve observed in myself recently, and wondered what was going on. I would never have associated these feelings with MS. It was only the delivery in my inbox of this article that snapped it all into perspective.

My initial response is an eye roll, and a “Great! Another freakin’ symptom. Thanks, MS!” My second, more reasoned response, is, “Great. Now I can look at treatment options.” There are several ideas mentioned in the attached article, and I’ll investigate until I find something that works. While past treatment experience doesn’t fill me with confidence, I appreciate having a course of action to pursue. I’ll add it to the list.


While many people my age – I am hopeful that 57 can still be considered mid-life- might be lusting after sports cars, I find I am drooling over cool and sporty and high-tech, and, ultimately expensive, wheelchairs. Pitiful? Maybe, but I fantasize about wheeling around in a groovy whip.

I’ve been following The Ogo as it has progressed from fantasy to Indegogo. I’m glad to see it is still around and, due to the foresight of its inventor, might actually become an affordable option.

More realistically, I have been eyeing the SmartDrive for a while. I recently sat down with my physiatrist to talk wheelchairs, and was surprised that he and a physical therapist agreed that it was a good option. I’m waiting now to see if Medicare agrees.

And just the other day, I stumbled over the Tiga FX. A reimagined folding wheelchair – how smart is this, folds like a lawn chair, allowing for a rigid frame while fitting in a suitcase (wheels travel separately).

There’s plenty more. Off-road chairs, power chairs, adaptations up the wazoo. As I said, this is my mid-life fantasy list. Porsche roadster? How about The Kenguru? Even better, a Porsche-Kenguru mashup. I’ll be hanging my head out the widow and definitely NOT acting my age.

Tell me about your perfect ride.


Mercury’s Gone

I last saw Mercury twenty nights ago. It was raining. It was always raining, but I never noticed. It was a Wednesday, though it wasn’t always Wednesday. Mercury and I were just walking home from the Fig Leaf, after quaffing our usual tanks of lard, and we were weaving this and that. I must say, just to be accurate, Mercury was, I think, a bit more weavy than I, he having engulfed twelve tanks to my ten. Still, ten tanks of lard is nothing to stand back on. It’s not every or any man who can put himself outside of twelve tanks and still navigate the labyrinth out of the Fig Leaf.

So there we were, Mercury and I. I once called him Merc and got a broken halo for it, so no more. Mercury is a nice enough stout, but I wouldn’t want him on the other end of my cudgel in a bad sea. He tips over at 40 cur, besting me by half, and it’s not all in height, so he’s a right guy to keep happy and on my side of the rail. Me and Mercury were about the best mates I ever heard of. T’wasn’t nothing we didn’t do together, except one or two, if you catch me. We wasn’t like that. We were heading back to the ship, a broad lady of a packet she was, full to the gills with rye and tumbles, hogs heads and pig iron, lances and boils, all manner of stuffs and jargon, that our “benefactors” as we kindly called them, though much worse to their backsides, hoped to unload at dear prices at blazing ports of call all around the perimeter. We knew better, or at least said we did. It wouldn’t do to be caught like party mice at an auction now, would it? So say it all, we did.

Me and Mercury got back on board without much more than a scrape, and tumbled to our cabins. We being senior shippers, and bigger and meaner to boot, got what we wanted from that ship, though not many others. Once in the passageway, I bids Mercury fair night and full sails and goes to my own wee box, and I guess he does the same – though here’s the thing, here’s where the canker ga-naws, as old Hook used to say. I never saw him go into his bunkee, and I don’t know if he ever did. By the time I knew he was gone, I bashed into that locker to find it all neat and pins, even the bunk, though Mercury usually slept standing in the corner, not one to lie down for anything.

So away he went, vanished, lifted into the briny dew as some say, took upon himself a leave, gone trouting, went south. As far as I know, he’s all and none no more. Mercury was a fair right tommy, big enough not to be missed, you’d see his head and shoulders breaking the clouds over any crowd. Where he went, I do not know.