MS is Like a Bowl of Jelly Beans???

September had a few moments that caught me by surprise and admittedly knocked the wind out of me.  I had to look at things a little differently than I had for a long while.

Not really too fun for someone who HATES change.

Really, I HATE change.

As much as I am not a fan of making adjustments to my routine, I also can accept that, inevitably in life, it will always happen.

Lord knows, change always happens.

Living with multiple sclerosis (MS) is a bit like that.  I compare it to a bowl of jelly beans that you reach your hand in and you don't know what you're going to get.  MS is a challenge and some days my body cooperates with my plans and my to-do list more than it does on other days.  

Quite unpredictable.

If I'd paid more attention in statistics, and if my brain operated on a more analytical level, I'd have at least an idea of what jelly bean I might get when I reached in the bowl, or how often MS would interrupt my days or my nights.  ( I didn't have a math brain even before MS grabbed hold.)

When you live with daily uncertainty about your own physical capabilities, it is easy to want to hang onto things that are consistent and routine.  

At least that's what I think. 

I like to have a false sense of control over something in life.

But there's as much certainty in Control, as there is in getting Change to hang its hat on the coat rack and take a break for a day or two.

It doesn't happen.  

Control. Nope, just false hope.

I doubt.

I ponder.

I ruminate.

I let the world see my Eeyore-side for a few days, and then I try really hard to let go to shake off that heavy weight of pervasive uncertainty, sadness, and loneliness.

That's a challenge in and of itself but it always happens with time.  After getting this far in life, that's a lesson I've learned well.


My goal for transitioning over to a new site, and focusing on a project bigger than me and my MS, was to not share so much of who I am with the world.  

To go quiet.

To isolate.

To keep ruminating.

To hide behind something easier.

What do they say?  Write what you know?

I know about quilting...

...and about living with MS.  It's something I'm unfortunately all too familiar with.  It’s a challenge and a burden.  It’s also an opportunity to connect with others, let my guard down, and really consider what matters to me in life.

So as I'm getting started here and working on new things, I think it helps you get a little idea of where I come from and why some things are very important to me.  Don't think I'll be rambling on and on, and on and on, about myself forever!  That'd put me to sleep, too!  I've got so much I want to share with you about quilting.  

And if you really don't care to know where I'm coming from, that's why there are other navigation tabs at the top of the page and the blog is just a little side project this time, instead of center stage.  

I won't be offended if you just click on a tutorial or the gallery and skip this section.  

I'll even give you a nudge if you need it.  Click on the button below, and it will take you right to a gallery of quilts!


Now if you stuck around…

I'm just laying down a little foundation about who I am so you'll understand WHY my heart leans towards making quilts to comfort others.  So that you just might know why I'm focused on sowing seeds and sewing scraps.  The often tiny, insignificant things that get cast away and overlooked.

I know a thing or two about how maddening it is to live in physical pain.  I wish I could take that away.

I know what it's like to feel insecure and uncertain worrying about fears and my future.  If I could help erase fear and worry, I would-in a heartbeat.

I know what it's like to feel alone in the midst of life's hardest moments and not know where to turn, or even what I'd say if I did.  I almost didn't make it through a point like that at all.  If all I ever could be was someone who'd listen and empathize with a hurting heart, it'd be enough.

I know it’s daunting to struggle with challenges that feel insurmountable and exhausting.  Mine are not the same as anyone else's, but I know it's hard to welcome each day when the stresses from yesterday compound on today’s.  I'd love to be able to make life peaceful and comfortable for everyone.

Except I don't have a magic wand. Only empathy.  Well, empathy and a HUGE heart that celebrates when others do, and hurts when others hurt.  

Life is big, messy, and overwhelming at times, but when you look really closely, you just might see something of value in something you may have otherwise cast off.  

That doesn't mean you have to save and use every scrap you'd rather toss, but those unwanted scraps, strings, and even little fabric crumbs, can turn into a beautiful quilt when they're sewn together with a bit of thread.  It just takes a little bit of time and patience and a heart that wants the best for others.  You end up making something that wraps another in comfort and love.

So whether you've got fabric scraps and crumbs, or you're just sitting in front of a bowl of jelly beans and you don't know what's next, just know that sometimes the little bits make a BIG difference when you share yourself with others.

WHAT I MAKE OF MY HANDS,

I GIVE OF MY HEART.

PS. I promise tomorrow will be more scrappy, less sappy, and we’re going to start chatting about quilting. Thanks for taking time to get to know me a little better! I’d love to hear more about you. Leave a comment below.
— Joy
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