Tuesday, June 15, 2010

Before I take it back to the start...

I'm 32 years old. Not old, not young; nicely in between. I know what I like and I'm comfortable in my skin - finally after years of feeling prickly and out of place. And I've managed to do that while carrying a huge weight on my shoulders, which I'm pretty proud of.

Multiple Sclerosis isn't simple to explain. It's oh-so-complicated and insidious. No two people are affected the same way. No one is 100% sure what causes it and no one can tell you what your prognosis will be. And on top of that, no one truly knows why or how the drugs prescribed to treat it actually work - if they work at all. I've tried them all. And only one has worked - if you consider working telling someone,"shhh."

I requested copies of 8 years worth of charts from the neurologist I've seen since one year after my diagnosis. I just finished pouring over them - fascinating and depressing at the same time. How many people have documents of their own physical decline? I went from being totally able-bodied to needing a cane in one year. Then after about 3 years it was on to a wheeled walker. Sometimes a wheelchair. Three years ago I got a scooter. So, that's that. I don't have much to say about it. It just is what it is and I am willing to do what it takes to maintain status quo as a functioning member of society. I outgrew the blush on my cheeks when people stared as I hobbled by. Now, as un-confrontational as I am, it's a win if I manage a dirty look. Because ultimately, it's really none of your business.

I was (and still am, to an extent) of the opinion that blogs are for the self-involved and attention starved. More than anything else I want this to serve as a document for me. Because let's face it: I have messy handwriting.

Where to start? Do I just talk about MS? How does anyone get the swing of this? That's enough for now. G'night.


  1. i too have terrible handwriting and have also thought of starting a blog...only problem is, my writing is about as bad as my handwriting..just can't seem to get the words out of my head and onto paper (or laptop) in a way that i think people will understand..too many drugs as a kid? lack of self confidence? who knows..
    i think you're a pretty swell lady and i am happy about this blog endeavor of yours, i will be reading with pleasure and interest. i tend to find other peoples lives pretty fascinating and have always been someone who likes to peek into peoples windows from the street while walking my dog,just to see how they've decorated or how they're spending their time.
    reading blogs ( i have really only read one other than yours ) kind of fills that same urge. is that creepy? i promise to never come peep in your windows...

  2. Love you Susie! You are an inspiration my dear friend!

  3. I never gave it a thought that blogs are self serving BUT yes it is!! Oh well :) Great stuff here Susie. Gives me motivation on straightening out mine. Been slacking so off :( Here I go and I hopefully can accomplish a bit anyway!!