Ice #4

Now that (maybe) spring is here, a few last ice images.

I’m tired, maybe a hangover from a weekend away. The thing about multiple sclerosis is that I’m always second guessing. Is it the MS or just normal life?

I got a book about yoga from the local MS Society chapter. It sets out a week-by-week course, which looks pretty easy to fit into my busy (ha) schedule. We shall see.



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A rare bit of blankness in a shopping zone.

I work for a company that makes down comforters, pillows, sheets, etc., and there is usually a sample bed all made up in a back room. When MS fatigue is most powerful, it is hard not to sneak off for a little lie down. On those days, I usually drive to Payson Park on my lunch break and take a nap.

Not quite as rejuvenating as a featherbed and a down comforter might be, but better than nothing.

I have been enjoying watching The West Wing on TV, partly because the president is living with multiple sclerosis. I think the writers handle it very well, not making too big a deal over it, allowing it to just be a part of his life.


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Even fat bald old lions still need to roar. And where better than in the Maine Maul.

Multiple sclerosis is a weird disease. It sometimes shows up in devestating ways, bringing near-complete disability, sometimes it is nothing more than the strange little tickle that’s been creeping around on my right leg, a feeling as if there is a bit of celephane tape stuck there. Strange.

In what feels like some sort of surrender, I asked my neurologist to start the paperwork to get me a handicap tag for my car, the kind that hangs down from the rear view mirror. It has not happened often, but there have been occasions where I’ve cruised a parking lot, only to have to settle for a space far from the store. Like with my snowshoe trek from last weekend, it can feel like I’m climbing Mt. Everest. So, OK, I guess in maybe a little way, I’m disabled. There, I said it. Doesn’t really feel very good though.

It’s funny though, how through difficult times, good things can happen. I’ve met some interesting people, both for real and on-line, and opened up some deep conversations that never would have happened were it not for multiple sclerosis. There is always a silver lining.


After a few days of almost balmy weather, I’m starting to beleive in spring again.

I am collecting pledges for my MS Walk in Brunswick, Maine on April 6. If you’d like to make a pledge, go here, click on the “e-pledge” button, enter my name (Stephen Harris), and click on the “e-pledge” button again. Your support is greatly appreciated. If you think you might be in Brunswick on the morning of April 6, we’d love to have you join us for a stroll.

I’ve been feeling more stiff and creaky than usual these last few days. At first I thought it was payment for my exertions over the weekend, but now I think it is due to my laziness. I used to get up at 5 every morning, do a bunch of MS-adapted yoga, or some tai chi, maybe some MS specific stretching prescribed by my osteopath.

But I’ve been lazy, and choosing to sleep an extra 45 minutes instead. And feeling more stiff and creaky than usual. Multiple sclerosis rears it’s ugly head.


So I did go out into the woods yesterday, and it was truly wonderful. The best word I came up with was “astonishing.” I started out, and thought how easy it was, how foolish I had been to think that this was so difficult, and I had a wonderful time. I was very glad, tho, that I had thought to bring the walking stick that Ben had made for me, because I stepped into some sort of sinkhole, and sunk to my hip, and were it not for the stick, I’d be there still. The snow was easily 3 feet deep, beyond the reach of my arm.

I found that all my familiar landmarks were gone, so my goal of the bench in the Peace Garden was not to be, and when I noticed the land begin to fall away down the hill, I realized I had way overshot the garden, and it was then that I started to feel a little tired, and the thought occurred to me that maybe it had been a mistake to come this far out into the woods. The walk back was like climbing Mt. Everest – one step, stop to rest, another step, stop to rest, with occasional longer pauses to try to flex my sore back. Then I saw the house, and eventually made it to the back steps, got the snowshoes off, the boots off,(best boots in the world!) and crawled thru the door to sprawl on a chair.

It was hugely exhausting “walk,” but well worth it for the experience of such a magical place. It was discouraging only in that it was so exhausting. And tho I implored my family to go out and see for themselves, none of them did. Too bad.

Cloud Escapes

Two Buddhas in Conversation is an ancient Chinese (I think) bronze sculpture, which I have never seen. I read about it years ago, and the name has always stuck with me, mostly in association to photography – the conversation, if you will, between darkenss and light, between form and emptiness. I think that is why I am so attracted to black and white photography.

Since I started this blog, I have been casting about for something to write about. I don’t want to write about the photographs – if I can say it in words, why bother with the photograph – but I didn’t know what else to write about. Yesterday I read a few blogs written by people with MS, writing about their experiences with it, and the little lightbulb went on, and I thouht I’d see how writing about my experiences with MS felt. You’ll have to let me know how I’m doing.

We have a lot of snow here in Maine, about a foot fell yesterday. The woods around my house are beautiful, and I would love to strap on my snowshoes and go out into it – with camera or without. There is something very special about the winter woods, something quite magical. But I feel how heavy my legs are, just going up the stairs, and how my back and arms felt after 15 minutes of shoveling yesterday, and I know I would not get far. I am scared that I’d fall down and not be able to get up. I have this image of myself crawling back to the house thru three feet of snow. Another thing I have to give up and get over?

Maybe I’ll go out anyway.