Heart of glass #1

This morning, I gave in to fear. I got out of bed, and felt like the gyroscope in my head was seriously out of alignment – I was dizzy, and the vertigo I’d felt a year ago seemed to have come back. We were planning a day trip to Boston to watch the Marathon (my daughter Robin runs the last mile with her friend Julie, and this year invited her friend Anna to run with her), and I took Alison aside and told her I was a little concerned about my ability to get around, feeling so unsteady. She convinced me that we could work around it, and it would all be fine.

We went out to breakfast, and when we got back, just getting from the car to the house I felt really shaky and ill, and I told Alison I didn’t think I would join them. All I wanted to do was lie down and sleep, and I thought it was important to listen to my body.

I slept for two hours, then dozed off and on, got up for a little nosh, and lay back down with a book, again dozing off and on. I definitely felt better, though there was still a little vertigo. I sat in a lawn chair out in the sun, and it came to me that I’d given in to fear – fear that I would fall down, fear that I would hold others back for having to accommodate my disability, fear, I guess, of acting like a person with MS. Fear that is, by the way, completely in my own head.

John Wayne said something to the effect that courage was being scared to death, but saddling up anyway. Just as I resolved to take better care of myself, and to do whatever I can to regain the mobility and endurance I have temporarily lost, so too I now resolve not to let fear in again. I am a person with MS, which brings certain disabilities. I will not apologize for them. Others can choose to walk a little slower to be with me, or they can choose not to. But I will not remove myself from life out of the fear of inconveniencing them. I’ll do what I want – you can come along or not.


Asleep on the stones

Took some time this morning on Mackworth Island, a place I used to go quite often in a former life.

My family is going down to Boston tomorrow to watch the Marathon, and to cheer on the team from Children’s Hospital, our friend Julie, and my daughter Robin and her track team mate Anna as they run the last mile. It is always a thrill to see her go – it was a little more than five years ago that she underwent a heart transplant at age 8.

But that’s another story.


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.

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.