Sand

Today is a bright, beautiful spring day, warm and inviting. I went out for a breif walk in the woods around my house, and visited spots I have not seen in 8 months, since before the snow covered everythng up. I followed a trail of turkey feathers, and found the spot where the poor bird met it’s end, a heap of chewed bones and smaller feathers. I brought the larger feathers home, to do something with.

One of the things that I look at when I walk out there is what trees need to come down, areas that need cleaning up, where I might want to improve a path, etc. It used to be that I’d gather up my chain saw, work gloves, and other tools, and spend an afternoon cutting down trees, cutting the trees into firewood, clearing brush, and generally enjoying my role as steward for my tiny estate.

But I can’t do that any more. It made me so angry this afternoon, feeling my back and legs telling me we weren’t going to do that stuff today, and probably not tomorrow either. I had this feeling last summer, that I could not do that woods-work that I love so much. The difference was that last summer it was a sad lament, poor me, sort of thing, and today it is anger. It’s pissing me off.

So in the spirit of Camille challenging herself to quit smoking – and sharing that challenge with others – I am challenging myself to lose the weight that I know I need to and to get myself moving. I need to turn that anger into resolve to do whatever I can to get back out into the woods. Maybe that will end up being the opportunity given me through multiple sclerosis.

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Beach Fence

From Popham Beach.

I saw today that my counter has gone over the 200 mark. Whoo-hoo!

It has taken a little more than a year, but I am starting to feel like I am finding access to some anger about this MS diagnosis. Maybe it is dawning on me that multiple sclerosis is not going away. My step-mother’s sister told me that I have the right to as much rage as I need. While that’s one of those things that I knew – we all are entitled to our emotions – it took her words to make it real to me in this context. I have not really done anything with that rage, nothing more than accept that it is there, and to curse through clenched teeth when those damned leg cramps keep me awake until 1 in the morning.

I have heard of artists expressing their pain through their art, and I have wondered how I can do that with my camera, if some form of anger, rage, frustration, or whatever will eventually show up in the images.

I am gratified that some of you who have been reading these postings have left comments. It makes all the difference in the world to know I’m not just talking to myself here. Thanks!

Sand #1


So begins another series of images. Not technically “sand,” but taken at the beach.

I beleive that people who ask, “So, how are you?” quite often don’t really want to know beyond, “Oh, I’m fine, a little tired, but fine.” Sometimes they really do want to know. It is hard to know which is which, and I am tempted to treat every inquiry as a sincere one. But then I’d have to delve into how I’m REALLY feeling, and that gets boring, even to me.

For those who do really want to know, there is a page on MultipleSclerosisSucks.com called The Beer Theory, which is based on The Spoon Theory, both of which go a long way toward explaining what life with MS, or Lupis, or any debilitating but invisible illness, is like. I recommend reading either of these, and learning them. I tried it out on Alison, my wife, tonight, and we decided that if she notices me not being fully present, all she has to do is ask if I am out of spoons.

See, now you have to read The Spoon Theory to know what the heck I’m talking about.

Ice #15

This one is from my day at the beach. There is only one more ice image in the archive, so I guess I’ll have to go out and take some more pictures.

I thought of a good way to describe what it’s like to live with multiple sclerosis. First of all, most of us live with one or more annoying and constant symptom. For me, it is “spasticity,” when two opposing muscle groups don’t get the same message from the brain, causing stumbling gait and stiffness. Some MS people have it far worse on a daily basis than me. But then, along with whatever the daily issues might be, there is a big black grizzly bear right behind you. You can feel his breath on your neck, so you are always aware that he is there, right on your heels. If you’re lucky, the bear will ignore you most of the time. Occasionally he might reach out and casually swipe at your foot, tripping you, or push you in the back, knocking you over. But you always know, because he is a huge grizzly bear, that at any moment he could rear back and smack you with a huge paw, and you have no way of knowing when it’ll come, or what it’ll do. Break an arm? Rip off a leg? Crush a few vertebrae? The bear might never touch you, even though he’ll always be there, but he might pounce on you and rip your spine out. You just never know. But you can feel his breath on the back of your neck every minute of every day. That’s what it’s like to live with MS.

I’m doing the MS walk in Brunswick tomorrow morning. It’s a five mile course, which is a little daunting, and I feel obigated to do as much of it as I can. I’d like to walk the entire thing, and I know there will be plenty of support along the way. I’m looking forward to meeting some people, and I will be cutting the ribbon to start the whole thing. It will feel good to be making an effort to DO SOMETHING. I will also take it as the start to my own personal goal of more excersize and better diet, to regain some mobility and physical strength. Thank you to those who have supported me in this walk. I’ll let you know how it goes.

Ice #14

This image was taken at Popham Beach a few weeks ago – ice and sand and surf.

Gov. Baldachi signed a proclamation today making April “MS Awareness Month” in Maine. There were about 30 of us MS-ers there, a scooter or two, some on crutches. He came in, made a few remarks, signed the thing, made a few more comments, and was gone. About 15 minutes. He was either very convincing, or he really did beleive in what he was doing.

He said, and I did not know this, that Maine has a rate of MS about 70% higher than the norm – one in every 400 Mainers has MS. I don’t think it will, but maybe this event today will make some difference.