A 6-sentence Story

For me, 2006 was an eventful year. 

First, a joyous event: my niece was born! 

Then, an unpleasant visitor arrived: multiple sclerosis. 

Six years later, both are still big parts of my life. 

When MS drags me down, she cheers me up!

She makes me want to fight, laugh, and hope in the face of this disease.

Because of her, 2006 will always be a special (rather than awful) year.

This post brought to you by HAWMC prompt of the day:

Tell a story in six sentences.

The Hard Way

Today's HAWMC prompt: Write about a lesson you learned the hard way.

The lesson I learned: Walking is awesome. The carefully coordinated choreography of muscles, tendons, bones, joints. Like magic, step after step, no thought or effort required. It's a joyful, beautiful, soulful act.

As a baby/toddler, the transition to walking was a scary one for me. I just couldn't quite trust it, so I would only walk while pushing around my little green and yellow shopping cart. Eventually, though, I left the cart behind and found my stride. Walking...even running....full speed ahead! It was no longer an issue - just a tool that was there, ready to be called upon at any moment. And a humble tool, never making an issue over the miracle that it was.

So for 24 years, I walked, completely unaware of the awesomeness contained in every step. But then MS stepped in and taught me the lesson the hard way. 

So, now I know. Walking is awesome. I'm lucky in that the gift - the miracle, the magic - that is walking was returned to me after an on-again-off-again year of major walking challenges. Now, most days, I can walk without conscious thought or effort. But I have learned my lesson, and I now acknowledge and treasure my steps through the world.

My dear friends, walking is awesome. If you are able to walk, please join me in celebrating this lesson. As you walk through your life today, please take a moment to really think through the magic that every step is. Pause to acknowledge the blessing it is to be able to walk without having to think through every part of the movement, without straining with effort to move your body from place to place. To think only of wanting to go from here to there and your body following through - it's delicious, isn't it? Try not to take it for granted.

I also recommend reading Kate Wolfe-Jenson's wonderful poem, The Magic of Motion. It captures this "lesson" perfectly.

HAWMC 2012: My Ten Things!

10 Things I Couldn't Live Without

in no particular order

coffee

chocolate

vegetables

books

music

nature

the internet

art & beauty...in everything from paintings to poems to movies to human kindness

free time

HOPE

HAWMC 2012: Dear Me-at-16

Dear Kayla,

I could tell you so many things about the next 15 years of your life. I could tell you about wonderful things, horrible things, mundane things. I could tell you what to do with your life based on what I know. I could prevent you from making certain decisions you will come to regret. I could suggest alternate paths to take based on things that will happen to you.


And part of me really wants to tell you all of these these things. Part of me wishes desperately that I could influence your choices, that I could guide your decisions. But, I know you - I am you. I know that much of this information would leave you feeling paralyzed. It would heighten your anxiety rather than lessen it. And how do I know that any of these changes would ultimately make things better, easier, happier?


So, I will tell you only this: there are bad things in your future, just like everyone. But there are so many truly wonderful things - people you will meet, places you will visit, experiences you will have. Much laughter, much delicious food consumed, wonderful memories made with family and friends. You have so much to look forward to. As for those bad things, I want you to know that you have the strength and the courage to handle anything that comes your way. You'll find ways to make the best of your lot, ways to find the hidden blessings. You'll power on. You'll even inspire others.


With much love,
your future self

This post inspired by HAWMC prompt of the day:

Write a letter to yourself at age 16.

HAWMC 2012: But You Look So Good!

I don't know about you, but MS has apparently done wonders for my looks. I am CONSTANTLY getting told how good I look! Now I can worry even less about my appearance and just keep calm and head out into the world with the confidence of a supermodel, knowing that I am going to look "so good" no matter how much effort I put into it.

This post brought to you by today's HAWMC prompt:

Make your own Keep Calm and Carry On poster related to your health condition.

HAWMC 2012: Good Conversation

Happy Easter! I spent the day feeling quite under the weather, having some sort of cold/flu/ear-infection treat, but I still managed to have a lovely time with my family. I ate lots of good food, did some of my best sidewalk chalk art to date (not saying all that much), and had some good laughs. I also spent half the day arguing with my family over whether or not I should go to the ER, the only option on a holiday when the regular clinics and urgent care and walk-in type places are closed. I won (because the ER is for emergencies only, duh!), but I will concede with a trip to visit a doc tomorrow morning.

A snippet of conversation from my day:

Scene: me in a comfy chair, super-awesome-almost-6-princess-niece Kylie curled up on my lap. 

Kylie: Did you get the text my mommy sent you the other day about what I said to her? 

Me: Yes! (giggle) 

Her: (giggle giggle giggle) The one about the butts?? 

Me: Yes! 

Her: Because I saw you had a picture put onto mommy's computer screen of some butts!! (giggle giggle) And so I said to her, "Kayla owns butts?!?!" And then I told her to text to you that I said that! (gleeful shriek, giggle giggle) 

Me: (giggle giggle) Well, the only butt I OWN is this one (points to rear) but I did put a picture on my blog that showed some girls' butts the other day! 

[conversation dissolves into fit of giggling and tickling and whispers of "you-said-BUTT!" and my sighs of utter contentment and joy]

This post brought to you by today's HAWMC prompt: 

Recap an awesome conversation you had this week.

HAWMC 2012 Day 5: Ekphrasis!

Today's HAWMC prompt is to go to flickr.com/explore and to write about whatever random image shows up. I love the idea of this post and the concept of ekphrasis in general. Writing about art is interesting because we all have very different responses to visual art. My random picture:

Hollister by Debrah Leonard

Hmmm. My first reaction was to be less than thrilled. I had lots of thoughts and directions to go in with last year's picture for the ekprhasis post. But this year, I have trouble relating to or connecting with this picture. Young girls in short shorts having a good time of some kind. Sure, I've had lots of fun times with friends and I occasionally wear (longer) shorts, but this image does not at all connect with me, so it might be a bit of a stretch to connect this to my health.

This makes me think of something my neurologist said to me once: "You can't be like a normal 25 year old. Your peers are building careers and going out and having all kinds of fun every night. You can't sustain that kind of lifestyle." I'm paraphrasing, of course, but that statement really struck me. Not that being "normal" is important to me, but it kind of sucks to not be able to be normal. I have to constantly be assessing and conserving my energy levels and responding appropriately to fatigue. I have to get a lot of sleep. I only have so much time in a day in which I am truly cognitively with it, so I have to choose how to use that time carefully. I can't work a regular, full-time, typical hours job. (Not that I'd necessarily want to, anyway!) If I do go out for a late night of fun with friends, I pay for it for days. I am "borrowing spoons" from the future when I do "normal" things like this, and it makes it very hard. Being normal is definitely overrated in my opinion, but it still stinks that I don't have the option to be normal, that I don't have the option to be like my peers.