Bits & Pieces: My Life Lessons with Multiple Sclerosis


I have this irrational fear of saying too much.  I'm probably the most chatty introvert you'll ever meet.  I was once introduced at a social occasion like this:

This is Joy.  Wait...Before I introduce you, do you want to talk to someone all evening?  If I don't introduce you, she won't say a word.  If she knows you, she'll keep you chatting the rest of the night.

Seriously.  That happened.  

So perhaps my irrational fear of saying too much is rational.  

As a child, once I started talking, I didn't stop talking.  Ever.

Seriously.  That happened, too.  I don't make this stuff up.

I talk, but much like a scrappy quilt, it is only in bits and pieces.  I leave out details.  I don't share everything.  I don't let people see all of me.  Perhaps another irrational fear?  Probably more self-preservation.  But since the people closest to me don't read this, I'll let you in on a few things I'd never tell them.

I don't tell anyone how scary it is to think about being alone, just me and my MS, when my son goes to college.  I pretend if I convince myself I'd like a hermit life and isolate myself on purpose, I  can falsely believe it was an intentional choice of my own making.  I can temper my doubts by the fact that I never want to have my child feel like they have to put their life on hold and care for me someday.

I might tell people around me that I hurt, or I'm aching, but I don't tell people how it feels to live in constant pain or how debilitating fatigue can really be.  When someone says they're tired from staying up late, I nod my head.  I can appreciate that.  But I don't think anyone wants to trade places with me, so I don't bother explaining "my tired."  I figure some people, lots of people, feel worse than me.  Most days I try to take it in stride.  If I do say I hurt, or I'm exhausted, you can bet it is well more than my baseline.  If I just pretend I don't hurt, and pretend that I like insomnia when I can't sleep through nerve pain, well, I'll just claim that those are my "uninterrupted hours" and tell you I get a lot done.

I don't tell most people the insecurity that I feel that comes from having a chronic illness.  The attempts at investing in relationships only to be reminded of things you have no control over.  A few years back I heard someone say: "...I just don't know that I can handle anything long-term with someone whose health is so uncertain."  

Seriously?  Yeah that really happened, too.  Although a few choice words and the woe-is-me tears were removed for brevity.    

I'd love to tell MS, "Hey, I just don't see my needs getting met.  How about we part ways?"

Yeah. That isn't going to happen.  Must be nice to have that choice.  I'm just kinda stuck with it.  

So I settle back into that "I could be a hermit" mentality, despite knowing that I have a heart that longs to give, love, and serve.

MS sneaks in and lays claim to a life in bits and pieces.  Maybe before it's noticed.  It isn't blatant about it all the time.  Sure wobbly walking, wonky stitches, and trouble finding words are easy to spot.  But the stealth attack that it ravages on the psyche, that's harder to manage.  There's an impulse to control anything and everything, because there's no control over the uncertainty of a disease process.  There's the insecurity that leaks out a little at a time in conversation that were not intended to be shared.  There's the false tales you tell yourself (and others) to pretend you are making the life you want.  Those bits and pieces are a trade off of sorts.  They are the details left out in conversation, as to keep up the strong, calm, capable, and confident appearance.  

Most of the time, I think, "This is the life I'm given.  Give me the grace to make the best of it.  What can I do for someone else today?

Silently, I might be thinking, "Don't say anything.  Don't let anyone see me phased by a never-ending battle that's out of my control."

Somehow, I think there's just a fine line to walk between the two.  A little space I can tiptoe (wait, thanks to MS, I can't tiptoe, either) between finding that much-needed grace and ducking for cover, hiding out having pity parties for one.  

Seriously though, that's just me and my MS.