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.
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.
The ice is melting here in Maine, so I’ll have to turn my attention to whatever is revealed as the glacier receeds.
I’m reading Climbing Higher, Montel William’s book, and have so far been struck by how much he is dependent upon other people’s perception of him. It seems to be the motivating force in his life, and seems also to have been a major concern when he was first diagnosed. He also writes (along with his co-author) about the insanity of keeping medical marijuana out of the hands of people who need it, and writes very eloquently about depression in multiple sclerosis. It’s a slim book, and although it would be nice to read a similar story told by someone without the resources someone like Montel has – flying to Sweeden for an evaluation by the top researcher in the world, top doctors from Harvard Medical School, etc. – I am enjoying it, and do see my experience reflected in his to some degree. Highly recommended reading (along with this site- Multiple Sclerosis Sucks) for anyone who wants to know more about what it is like to live with MS.
I was invited to go to Augusta on Wednesday to be on hand when the Governor signs a proclimation declaring April “MS Awareness Month.” That’ll be pretty cool, although I’m sure every MS patient in the state was invited. Hopefully there will be a good crowd, and hopefully it will get some notice in the press.
I was also asked to participate in the ribbon cutting at the MS Walk on Saturday (I’m still taking donations, if you’re interested in sponsoring me!), whatever that means. I’ll let you know.
And then there are days where I can’t get beyond the fact that multiple sclerosis sucks. Sometimes it seems that my day is filled with little defeats – my legs don’t work very well, my back aches after standing for two minutes, I go for a walk and have to turn back after five minutes, I’m tired all the time – a whole string of little defeats.I got a handicapped tag for my car, and I wonder if I should get myself a cane. Defeats.
And there are remedies, things I can do to ameliorate each symptom. Neurontin for leg cramps, Tylenol for back ache, steroids for the stiffness and dropped foot, Welbutrin if the depression gets overwhelming. But those are defeats as well, admissions that I can’t do this, can’t get through my day without help. I know it’s just pride, but I have a lot of respect for independance, and it is very hard for me to get my head around the fact that I am no longer as independant as I’d like to be. I’m not OK with it. I know that someday I will be, and some days I am more OK with it than others. I know there is a silver lining, and someday, I’ll find it. I’m just not there yet.
But there are days where it just fucking sucks, from the time I get up in the morning to the time I go to bed at night.
Maybe I should stop with the ice already. Is it getting monotonous?
Today is a bright and sunny day, truly (dare I say it) spring. Now that the sidewalks are melted, I went out for a walk, and while walking and contemplating my multiple sclerosis-related mobility issues, I realized why I seem drawn to taking these close-up, detail images. I think it has to do with shrinking horizons – I’m not able to walk as far or for as long as I used to, so going out with my camera doesn’t mean what it used to. I can take pictures without having to walk far, or spend an afternoon out on the streets shooting, simply by focusing down into very detailed explorations of what is right at my feet.
Anyway, it was a lightbulb-over-the-head thought, made sense to me.
I also realized that, if I’m going to ask him to come to Portland to speak, I really should read Montel‘s book, Climbing Higher. My sister in law gave me a copy for Christmas, and it is now in my car, where I seem to do most of my reading (waiting to pick up my daughter from track practice, not while driving). I’ll let you know how it goes.
I realize I failed to make any comment in the last entry about the title of the image, Ice 9. Not just a chronological matter, but also a reference to a Kurt Vonnegut creation.
Some of these ice images look decidedly lunar or un-photographic. I promise that except for some color correcting, they are un-messed with, just as nature made them.
I have been thinking more about the Men Living with MS idea, and about Montel and Squiggy, and about seeing if I can make contact with either of them, and see if either of them would consider coming to Portland to speak. Why not?
There is a definite healing power in music. I know this will come as no great revelation to most people, but every now and then it really smacks me in the face. Like just now, listening to Red House by Jimi Hendrix, I lean back in my chair and laugh, and shake my head, and just groove. I tink I’ll listen to it again. Maybe all night long…
As my wife heads off to go skiing today (another thing MS has taken from me), I prepare for a day of house cleaning. Whoo hoo! What used to take an hour, vacuuming the downstairs, now takes all morning, as I have to take frequent breaks to rest. And I try to get it done as early in the day as I can so I can rest in the afternoon. I’d much rather go skiing. I have seen quite a bit about these ski-bikes, which I am very interested in, which might be a way to get me back onto the slopes.
I saw a mention of Women Against Multiple Sclerosis, and thought that there should be a Men Against Multiple Sclerosis. (Although I’d prefer Men Living with MS, less negative, and more reflective of the reality.) I have not really searched for it, so maybe there is something out there. Hey, they get Terri Garr, we get Squiggy. And Montel. Maybe that’s something I need to look into more deeply.
But I have to get started on my vacuuming.