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.
I went today to Popham Beach out in Phippsburg, and while it was a beautiful day, and the waves were very dramatic, and I was very glad to be there, and I would have loved to stay there all morning, I quickly became very tired, and had to pee, and it was all I could do to get to the outhouse and then back to the car. All I wanted to do was lie in bed and sleep. I kept thinking how much I hate MS.
Driving home, I thought that perhaps the worst thing about multiple sclerosis for me is all of the negativity it leaves me with. It is very hard to talk to people about how hard it is, when taking a walk on the beach becomes a big ordeal that I have to cut short and ruins me for the rest of the day. When people ask how I’m doing, even if they really do want to know, I don’t like to start in on how angry it makes me, or how hard it is not to get completely discouraged, or how it feels to enter into something as simple as walk on the beach knowing that it will end with complete exhaustion. I don’t know how to deal with all the negative emotion. I came home, lay down in bed, and slept for an hour. I could easily have slept all afternoon. I know that rest is very important, but I always feel like I’m wasting the weekend if I spend too much time in bed resting.
Have I mentioned lately how much I hate MS?
You know, I’m really not a negative person. It is hard, tho, to write about multiple sclerosis and not sound like a realy downer. And I don’t dwell on it, I think i’m doing pretty well- still working full-time, walking and talking.
I don’t dwell on it, but there are instances thru my day that remind me – when I get up out of my chair and have to reach out for the wall to steady myself before I walk down the hall, or how sometimes it takes me a few minutes to get going at the urinal, or when I can’t remember something I was just about to write down so I wouldn’t forget it – that everything is not right in Brain-land.
There is suspicion about several MS drugs, and now I read about people in England taking serum from goat blood and showing remarkable results. I think the drug companies should release the results of all of their studies, fully inform doctors and patients, and let them make their own decisions.
A little scattered today.