Sunday, April 29, 2012

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.

Tuesday, April 17, 2012

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.

Friday, April 13, 2012

HAWMC 2012: My Ten Things!

10 Things I Couldn't Live Without
in no particular order







the internet

art & everything from paintings to poems to movies to human kindness

free time


Tuesday, April 10, 2012

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.

Monday, April 9, 2012

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.

Sunday, April 8, 2012

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.

Thursday, April 5, 2012

HAWMC 2012 Day 5: Ekphrasis!

Today's HAWMC prompt is to go to 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
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.

Wednesday, April 4, 2012

HAWMC 2012 Day 4: I Write About My Health Because...

I just reread the post I wrote last year for today's prompt, and that pretty much says it all. (Plus, it's late and I don't have the energy to say anything worth reading at the moment!) Check it out:

I write about my health because...

Tuesday, April 3, 2012

HAWMC 2012 Challenge Day 3: Superpower!

Today's writing prompt: If you had a superpower – what would it be? How would you use it?

Hmmm, let me think.


SNAP! You're welcome. Enjoy your good health.

Monday, April 2, 2012

HAWMC 2012 Day 2: a quote that shouldn't be quoted

Today's HAWMC prompt is to write about a quote that inspires you either positively or negatively. I have tons and tons of quotes that inspire me positively, but I choose today to explore a quote that had a negative effect on me. Perhaps fortunately, I can't find the exact quote that I find to be so upsetting despite my best Google efforts.

I was in graduate school when I got the MS diagnosis. I was experiencing many physical problems and I was very open with my peers and colleagues and teachers as I went through this crazy new set of experiences. I am extremely grateful for the way everyone in the department responded and for the genuine care and concern they showed me. One teacher, in particular, really touched me with the concern he showed, probably because he was a generally stern and stoic character and I wouldn't have expected such tenderness. This teacher sometimes forwarded me things he had heard about or read that somehow related to health issues in general or MS in particular, a gesture I appreciated. One article, though, left a deep scar.

The article was about complementary and alternative treatments for various autoimmune diseases. I am very much in favor of holistic care, and so the premise of this article didn't upset me at all. What upset me was when at a certain point in the article it described the "MS personality" and discussed how these personality traits essentially caused the disease. I could have brushed this off as absurd - and part of me certainly did - but unfortunately the description seemed to describe me perfectly. Again, I don't have the exact text, but to paraphrase, the main points were being quiet/shy/introverted and being someone who suppresses their emotions and opinions. This certainly doesn't describe in full and doesn't describe me in every single context and at all times, but it does very much describe me.

The rational, logical me could instantly recognize the ridiculousness of this argument. But a part of me felt those words like a dagger, felt this was the truth. I brought this all upon myself. There was something inherently wrong with me, so wrong that my body was self-destructing!

Now, I hold no malice towards the man who forwarded me this article, as he may not have even read it in detail, and ultimately had good intentions. But I do wish the author of the article and others who espouse this kind of nonsense would realize the cruelty of their words.

I believe that your personality didn't cause your disease. And I usually believe that my personality didn't cause mine. But that quote still haunts me. And its scar is just as real as those that show up on the MRI scans. Words are powerful.

Sunday, April 1, 2012

HAWMC 2012 Challenge Day 1: Time Capsule

Greetings from the year 2012! Life as you know it today was very different one hundred years ago. As you examine history, you probably shake your head with wonder at how simple our lives were and how limited our technology seems. That's how we feel when we look back one hundred years from today, and with the rapid rate of technological advances we are seeing currently, I can't even imagine how far you've gone by 2112!

One area that you might find particularly astonishing is related to health and disease. In 2012, disease was a very serious reality for many of us. One such disease, multiple sclerosis or MS, was quite the beast. It tended to strike people in the prime of life and could present with a range of devastating symptoms. The disease ravaged the brain and spinal cord of its victims and tended to get worse over time. Patients had a few lines of defense - self-injected shots or monthly infusions or pills - that slowed down the disease's wrath, but there was no cure. 

As a patient of this awful malady, I write to you in the future with perfect confidence that MS is no longer something you must suffer with. There is certainly a cure, perhaps even a preventative vaccine.

You might be interested to know that in my day, we took part in annual walks and bike rides to raise money to fight MS. We wore orange. We wrote blogs and books, sharing our stories and raising awareness. And we hoped. With every new lesion found on our MRI scans, with every injection, every doctor's appointment, each fundraising event, every new symptom, each and every moment living with this cruel disease, we hoped. We believed.

You surely have many problems in 2112, but MS is not one of them. Our children, grandchildren, and nieces and nephews among you will not have to wear orange for any reason other than a fashion choice. And for that, we rejoice.

This post inspired by the 2012 HAWMC prompt of the day: 
Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112.