Saturday, March 28, 2009


I had to hold the pistol a lot further away than was physically comfortable, partly because the hot gas coming out of the cylinder kept fogging up my safety glasses but also because I was having a really difficult time getting my eyes focused. The sights had no defined, crisp edges at all, due to vision issues I'll explain later. I'm actually shocked that I did as well as I did.

I also learned that getting excited about good things makes my left leg act up. Apparently, having MS means that you can't get happy, angry or generally emotional without having some sort of physical effect that has the potential to screw up your day.

"Of all the preposterous assumptions of humanity, nothing exceeds the criticisms made of the habits of the poor by the well-housed, well-warmed, and well-fed." - Herman Melville

I heard this last night at the end of the syndicated episode of Criminal Minds on A&E, and it got me thinking about how I judge people by their experience of the world and how I have been judged by my experience of the world. I have a difficult time taking people seriously who haven't lived outside their comfort zone. I have a difficult time trusting people who've never done something illegal. I can't be close to someone who's never fucked their life up for a period of time.

I have also found the criticisms by people in the MS world to be less than helpful or constructive. When I say that I am really not sure that a life with MS is worth living, I get told that I'm miserable and negative and I'll never appreciate the joy that is found by getting outside in a scooter. When I say that I can't read, people automatically start telling me to get prism glasses to stop the double vision, without even considering that I don't have double vision.

I have cognitive impairments that prevent me from remembering the first paragraph I read. When I start the second paragraph, I can't make sense of it because I don't remember the first one. So I have to go back and re-read the first, etc. etc. I took me a week to read a single chapter of The God Delusion so I gave up. I've cut my Google Reader subscriptions back because I can't read 97 news/politics/commentary sites every day. Even with only 30 I find myself skimming, because my brain is just not geared for retention.

I obsessively go over these blog entries and still miss typos and errors I never would've missed before. I used to be really smart, but thanks to MS, I've caught "the dumb". I really can't decide what I am more terrified of; losing the ability to walk, to see or to think.

My second issue with reading has to do with my eyes themselves. I can't keep them focused without actually *thinking* about it. Even as I type this I have to keep forcing my eyes to stay in focus. The eye doctor at the MS clinic says that it's not anything they can really fix with glasses, I just have to keep exercising my lazy eye focusing muscles. When you spend a great deal of time just trying to keep edges on the world it makes your eyes tired and you get headaches. I have headaches almost every day. I eat 6 Tylenol every day just to deal with it.

People with MS who want to give peer support seem to be more than happy to jump at you with a solution to a problem, even if you don't have that problem. Whether its my vision or my mental state (which wasn't exactly great *before* I got MS) everyone has got an opinion on how I should behave or speak as a sick person. I'm trying to live up to my own expectations these days, so forgive me if I fail to live up to yours.

But going out shooting yesterday was good for me. I was out and standing for more than an hour, I wasn't completely exhausted (or even all that tired) when I got home, and I enjoyed myself and the hour of almost normal I was able to have.

I have until bedtime Monday night to complete my music project. If you are a friend of mine, interested in helping and have 10 or 15 minutes to spare, please comment, send me a message, an @reply or email.

That's a lot of different communication mediums, don't you think?


  1. Lori, people with MS can be really self-centered and stupid. I know I am sometimes, especially when I don't mean to be. If I've ever made you feel less than, I apologize.

    Not really understanding what your music project is, I'd like to share a piece of music which always makes my soul feel better. It allows me to cry when I need to cry and smile with joy when I need that.

    I don't know how to transfer a mp3 file, so here is rendition I found on U-tube. It is the 4th movement, Adagietto, of Mahler's 5th Symphony.

    Hope you enjoy.

  2. Hey Lori,

    As you read this, picture me standing, one hand on hip, wagging my finger at you with my other hand:

    I really think the so-called MS 'support' groups are the worst places to be right after your diagnosis. Until you've lived with it and learned how it is impacting YOU and YOUR life, I don't think those sites are going to do a damned thing for your emotional well-being. Sometimes a headache is just a headache. And if you sit on your leg, it will go numb. And if you stay up too late on a weeknight, work is going to suck the next day.

    Don't ask another MS-er who you've never met or spoken to in person for advice when something aches or gets spazzy or goes numb. That's what your doctor is for, IMO.