Friday, March 07, 2008

So why the Monster Story, anyway?

It occurred to me that people might think it a wee bit odd that the URL to this blog is TheMonsterStory. What's that about?

Giving credit where it's due, it was a friend in California who used to call the disease The MonSter (get it?) and hoo boy, was she right. This really is a monster of a disease, especially for those of us who want to believe we have even minimal control over our lives. For years, my life was ruled by my calendars. I shlepped a blue leather binder that sported a little brass place with my name etched on it everywhere -- at work, at home. It was ubiquitous. The more appointments and dates I could cram onto each page, the better I felt about myself. I was doing stuff. I was accomplishing stuff. I was competent! I was worth something. That binder represented so much to me, now that I think back on it (and I have no idea where it is these days - I might have tossed it when we moved to Portland). It carried more than physical weight - it represented my success, as surely as my job title or the number of people who clamored for appointments on my crammed schedule at work.

Of course, that was all illusion, sure as I'm sitting here in an old t-shirt and fuzzy slippers. I'm not saying that my efforts at work weren't valuable, or that I wasn't effective. It's just that those jam-packed pages listing meetings and assignments had just about nothing to do with my worth as a human being, even though that was the value I ascribed to them. Unfortunately, at least as far as the rest of the world knows, whatever contributions I was able to make in the past, or those I make today, really can't be represented with numbers or entries on a calendar. If I made a difference, it was with the people with whom I worked, and it's almost impossible to quantify those experiences and interactions.

The MonSter continues to try and teach me that Life Lesson. The first thing I think about every morning as I wake is a 'to-do' list. What do I need to accomplish today? There's the usual morning routine (focused mainly on cat-related tasks). I can add a few more chores like cleaning and re-filling the hummingbird feeders or trying to run the Dyson vacuum without tripping over the cord or losing my balance and tumbling into a chair. Maybe I can manage a half hour on my trusty Theracycle, getting my arms and legs moving and my heart rate up a wee bit. It's pretty certain that I can't add a visit to the supermarket if I've already done the stuff I listed above. That will need to wait 'til tomorrow or the day after - or maybe even the day after that. So I've gone from being a much-sought-after, high-paid corporate manager, one who traveled extensively and worked 24/7 to - what? A sixty-year-old woman with a not-very-interesting life who can barely fit one outside event on her calendar, much less a long list of appointments. Does that mean I'm worth less (or worthless, either will work, I guess)? That I'm a walking waste of oxygen?

Intellectually, I know that's not true. But damn, there are days when the MonSter's impact on my life makes me feel that way.

So it's not all about MS, is it? Isn't it also about the way we - our society - values people?

Whew. This is way too heavy all of a sudden. I think I need to climb on the old Theracycle and watch a light-hearted DVD...

8 comments:

Revalani said...

"Walking waste of oxygen" makes me feel really, really sad, Lib. Shit, you've contributed more to the world than most people do in their lifetimes. You're still doing so, only on a different scale and in a different range of venues. You're also at the point in your life where, disease or not, you're entitled to rest on your laurels and focus on yourself and your family and your lovely home and garden.

I know you know all this, sweetie. I just wish it were easier for you to feel it.

druid said...

What Reva said. And not to put too fine a point on it ...

> those jam-packed pages listing
> meetings and assignments had just
> about nothing to do with my worth
> as a human being, even though
> that was the value I ascribed to
> them

Lib, sweetie, everybody we both know agrees wholeheartedly with that -- except you. Believe it, honey. That world is lessened by your absence. But you are not lessened.

You've done your time and paid your dues, and now you're retired. Everybody retires sooner or later, and has to deal with it. Some of us are dying (not literally, I hope) to retire. You had it thrust on you, which deprived you of the chance to appreciate it. I'd switch places with you in a second -- if the damned MonSter didn't go with the swap. That sucks enough -- don't beat yourself up for not mattering. You do. To a lot of people.

Libbi said...

Thanks to both of you guys for your kind and loving words. PLEASE know that I wasn't fishing for compliments here? Remember that I'm an extrovert, and do a lot of 'thinking out loud', even when I'm writing. Since I tend to drift into hyperbole a lot (!), these musings can sound a lot worse than they really are, especially on a day when the darker thoughts have retreated into what I call my 'Fear Closet'.

I love you both, dear friends o' mine, and appreciate your support more than you can possibly imagine.

[smooch]

squiffy said...

Carnival of MS Bloggers and the launch of a unique and inclusive Global Multiple Sclerosis Community


Hi,

I came across your blog via the Carnival Of MS Bloggers, I am Squiffy of Squiffy's House of Fun, on the list ;O)

You may be interested to hear about a new, unique and inclusive Global Multiple Sclerosis Community providing not only up to date MS News and Stories, but a place where those affected by Multiple Sclerosis can communicate with others affected by the disease, and the wider public, by means of Online Blogs, Discussion Forums and Net-based social interaction, which the Multiple Sclerosis Resource Centre launched onth March 6th in collaboration with cre8Buzz.

Why not come and have a look, there are already some established MS bloggers signed up, and maybe join in, it is a great way to promote your blogs etc.


http://www.cre8buzz.com/multiple_sclerosis


squiffs ;O)

LISA EMRICH said...

Hi, I apologize for the 'form' letter but it is the easiest way to pass word most quickly.

I am thrilled with the response to the MS Blogger project started at my blog, Brass and Ivory. I appreciate all those who took time to post about it on their blogs. I have discovered even more bloggers who have MS, whether they blog about the MS or not. A new listing is available at MS Blogger Community Project Revised.

Secondly, I'm looking for submissions for next week's Carnival of MS Bloggers. Information can be found at the end of each issue archived at Carnival of MS Bloggers. What I'm looking for this week are posts related to creativity. I discovered so many new bloggers who quilt, or knit, or crochet, or write, or photograph, etc. Basically, what do you do to express yourself?

Thank you so much for participating.

Lisa Emrich

P.S. I also apologize for any increased 'spamming' of blog comments due to my growing linklist of bloggers with MS. For that I am sincerely sorry.

Mikey said...
This comment has been removed by the author.
Mikey said...

Can I please share something with you that I think you will really appreciate? I can, OHH BOY!

Check this small clip from someone's autobiography who also faces MonSters.

http://survivingms.com/index.php?option
=com_content&task=view&id=27&Itemid=29

The best way is to copy and paste each one line at a time. It is really all worth it. :-)
God Bless,

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