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.

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...

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.

I WOULD BE ABLE TO CURE DISEASE WITH A SNAP OF MY FINGERS!!

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

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.

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. 

Challenge Day 30: a vocab lesson

A bookworm from birth, I've always loved words. I even love all of those long awkward medical words those of us with chronic illness inevitably learn. But the final prompt in the challenge I've sometimes been participating in this month is pretty tough. I'm tasked with creating a new word to describe something in MS life that the current lexicon doesn't cover. One of my primary coping mechanisms has always been humor, so it should be no surprise that this little vocab lesson leans in that direction.

muffins?

muffinitis, noun: a condition causing an individual to misspeak due to mental fogginess from MS or medication, best treated with kindness and giggles

"Please forgive me if I say something unusual. I'm not a moron - it's just my muffinitis acting up."

And the story: I often experience some brain fog and/or fuzziness from medication. Sometimes, this brings on some aphasia. I have a great deal of trouble recalling the simplest of words, or worse, I will replace one word with a totally unrelated word without even noticing. Although on occasion I find this to be quite upsetting, it usually is cause for much mirth. My family and I had quite a laugh on the day I asked, "Where are my muffins??" I first received puzzled looks in return, as no one was aware that I had any muffins or that any muffins were anywhere on the premises that day. I was upset, because I needed those muffins! I explained that I knew that my niece had taken them from me earlier in the day and I hadn't seen them since. Eventually, we figured out that I was, in fact, looking for my slippers.

muffins!

Do you ever experience muffinitis?

Challenge Day 27: Light a Candle

widely attributed to Eleanor Roosevelt
adapted from a Chinese proverb

I think the above quote is inspiring and very applicable to life with a chronic illness. I believe that feeling upset about the darkness and expressing those feelings can be important, but whenever it's possible it's always better to find a way to light that candle. This has tons of meanings and applications - from finding ways (perhaps new ways) to be as physically healthy as possible to finding new ways to be emotionally and spiritually healthy and engaged with the world to taking education and turning it into empowerment and advocacy. I hate MS and bemoan much of what it means for me and so many others, but I also celebrate the insights and truths that my MS muse has illuminated for me that I otherwise might not have understood.  I could go on and on, because light and fire are such rich metaphorical playgrounds, but with quotes like this, I think the words speak for themselves. It is my hope that this blog can serve as a lit candle.

brought to you by HAWMC Day 27 prompt

Challenge Day 21: My Amazing Mother!

Today's HAWMC prompt is an easy one: write about someone you admire.There are tons of people I admire in this world from friends and mentors to famous musicians, writers, artists, athletes, and maybe even a politician or two. And as I've gotten more into this MS blogosphere, I've added plenty of bloggers to my list. The way some of you - many with significantly more health woes than I currently have - approach life with such hope and vigor amazes me. But on the long list of people I admire, no one else comes even close to my mom.

me and mom and mountains!

Beyond the fact that she gave birth to me and has put up with me all these years, my mom's admiration-worthy qualities are many. She has all the usual suspects, of course: kind, compassionate, smart, funny, and so forth. This woman has experienced more than her fair share of adversity and heartache in her life, but this is also a woman with more love and integrity and strength than anyone I've ever known - a woman who shows me by example how to come out stronger on the other side.

She never missed a concert or important event in my life, from fifth grade band all the way through four years as a music major in college...and that's a lot of concerts!! She made many sacrifices to ensure that I could pursue my dreams, but she never once let on that she may have been tired or struggling. I've never gone a second in my life without knowing that somebody thought I was pretty special, even when I didn't believe it myself.

When I started having some funny symptoms during grad school, she drove across the country to make sure I was okay. She drove me to my first MRI appointment (at 2 a.m.!!) and supported me as I struggled to walk down that long hallway. She was a sad but solid support when I was diagnosed with MS and she sat with me for my first steroid infusions. When things kept getting worse and worse but I was determined to finish the year and earn my Master's degree, she uprooted her life and basically moved in to help me out. When I could barely walk and certainly couldn't handle stairs but needed/wanted to get to school to teach or attend class, she provided curbside service - and with this building, that was no easy feat! She took care of many of the little things I had no energy to even consider tackling so that I could focus on getting through each day.

Because of her, I now have that Master's degree and I'm still pursuing those dreams. Because of her, I grew up knowing I could do anything. Because of her, I am a lifelong reader and dreamer.  Because of her, I write this blog! And because of her, I won't even worry that this post is an inadequate tribute (which it surely is) because I know that she thinks I'm great, regardless. I love you, mom!!

Challenge Day 20: Where I Write

Missed a few days again, but I'm back for Day 20 of the challenge. Today's prompt is to write about the space where you write. Well, I write in a few different spots, but the following list is always in play:

• It's gotta be comfy. I'm not a sit upright at a desk kind of writer. I prefer to be in a at-least-somewhat-reclined position of repose. Generally, I chill out on the couch or in my big comfy chair with a blanket and my trusty laptop.
• I need the right amount of the right kind of distractions. I can't have too much stimulation, but I can't be completely isolated either. I like to have things to look at, but it can't be so compelling that I can't pull myself away. So, a window with a semi-boring view will do. And certain objects are important. I like being around things that inspire me. I love being around books. I like to have stuff to play with (I tend to need little bursts of distraction in the middle of writing and other creative tasks) like the lime green ukulele I'm teaching myself to play or some bongos to drum away on or some coloring books and crayons. These fun distractions allow me to ruminate consciously or subconsciously on whatever I'm working on and come back to the task at hand refreshed. I should also mention that I'm a card-carrying member of Procrastinator's Anonymous, and I tend to procrastinate even on enjoyable and no-pressure tasks. But it sounds better to talk about it as a boost to the creative juices.
• There's got to be a handy spot nearby to place some coffee, tea or water.

comfiest chair of all time!

That's pretty much it. All of that being said, I have found working in coffee shops and libraries and other public places to be a positive experience on occasion, but I generally find them a little too distracting to do my best work. And, I often fantasize about ideal office/working/reading/creating spaces. I love seeing the different workspaces featured on Lifehacker, for example. This might make me a bit of a nerd, but I'm pretty sure I'm a card-carrying member of that club already, too. What's your ideal writing space look like??

Challenge Day 16, sort of

Todays WEGO HAWMC prompt is to write about a fictional cure for your disease. Since I didn't look ahead, I sort of already did this with my Wikipedia revision on Day 11 of the challenge. The details of Dr. Goodman's cure weren't elaborated on and the whole thing was more playful than in the journalistic vein today's prompt was going for, but I'm considering today's post retroactively completed.

Quality control provided by Gracey the Swan

Instead, I'll tell y'all about the awesome day I had today hanging out with my one-week-shy-of-5-years-old niece, Kylie. There were lots of stories - both in books and ones we made up together. There was coloring while watching movies. There were freshly-baked cookies, mixed up by an expert baker: There was fun with barbies and playing dress up and a tea party and plenty of imaginative pretending. All in all, it was a pretty awesome day and I'm thankful I had the energy to really enjoy it. Time with this precious girl is one of the highlights of my life. Back to the idea of imagining a cure for MS, the idea of Kylie getting the disease one day is heartbreaking and further fuels my intentions to become more of an advocate and activist in the hopes that one day Wikipedia really will read "MS was..."

Challenge Day 15: Breaking News!

What's that? It's APRIL, you say???

On what could have otherwise been a lovely Spring day, an MS blogger happened upon the above gross miscarriage of justice perpetrated by Mother Nature, and had no choice but to turn to chocolate. Said blogger was unable to even muster a chuckle upon reading her therapist's answer to the situation and remains in critical condition.

The above sad-but-true story was brought to you by: WEGO HWAMC's prompt of the day: write a complete story that is only 2 sentences long.

Challenge Day 14: Lies

These are all sadly from real interactions with people in my life. Line one is something I've been told (more or less) and its partner is the mental tag I added to their words:

my sister's neighbor's vet has MS, but you would never know it - she's fine!

so thus, you shouldn't be upset or worry.

MS is easily curable - just take drug x, herb y, or follow diet z!

and if you don't, being sick is your fault.

quiet people who keep their emotions inside bring the disease on themselves.

so why didn't you just vent a bit more?

well, you look really great!

because, after all, grooming standards should be lower for the ill.

I know, of course, that these are all, in various forms and ways, misconceptions and lies. But all of these conversations sometimes still haunt me, despite this knowledge. And there you have it, today's WEGO HAWMC prompted blog: a poem-ish list of lies or misconceptions about your health condition. Stay tuned fo an itty-bitty story tomorrow!

Challenge Day 13: They Who Will Decide

Todays WEGO HAWMC prompt is another great idea that I know from past experience can get the creative juices flowing. Open a book to a random page and choose a phrase or sentence at random - instant title for your blog post! I grabbed Toni Morrison's a mercy from the coffee table next to me. I flipped through to a random spot and counted down to the 13th sentence, in honor of day 13 of this challenge, even though this will only be the 8th post I've participated in.The full line: "Widow who says sssst it is they who will decide." I haven't started this book yet, but that seems about like a typical Morrison line. (I say that with love and adoration for this author, who I studied in some depth in college.) I thought about going with "who says sssst" for the random and absurd quality, but those last four lines instantly got me thinking about a relevant topic for an MS-themed blog.

They who will decide. Who is the they in the future of MS? I know it's almost cruel to suggest that a simple decision is all it will take to ultimately cure this or any disease, and that's not what I'm trying to do. After all, it could be a fluke in a lab somewhere that leads to answers. But maybe it is, at least in part, that simple. Maybe we, as patients and activists, do need to decide to do something. To change the way this disease is studied, treated, talked about. I think most of us in this blogosphere have made just such a decision, and some people are working hard to get the under-utilized resource of the patient recognized. It's no accident that in my imaginative Wikipedia revision, I chose the heroes of the changing of MS is... to MS was... to be patients and bloggers.

They who will decide. There is something almost ominous and powerful in the phrase. Let's all decide to decide in the best ways we each know how, shall we?

Challenge Day 12: Ekphrasis

Today's WEGO HAWMC prompt taught me a new word: ekphrasis. It's a written commentary on a piece of art. I love the concept. The prompt suggests searching for a photograph online that inspires you and then free write about it for 15 minutes. Again, love the concept, but I actually wish I was assigned a photo. Choosing an inspiring image is not an easy task for me. Making decisions is probably one of my least favorite activities. And this is a hugely broad place from which to choose - a photo online! Among the millions of possibilities, there are tons of images that inspire me in various ways...how to choose?! And 15 minutes? I could easily do the stream of consciousness free write thing for 15 minutes, but that would be a long chunk of reading for my readers! So, I'm going to set the clock for 5 minutes. Back to choosing an image...[much time passes. procrastination ensues.] Okay, finally, here is one of many inspiring images I found:

photo by jurvetson, from flickr creative commons

Perspective is everything. I love macro photography like this that illuminates the details that we miss. There are entire complex worlds all around us that we don't even notice. Annoying dandelions spot the yard so we spray them with weed killer and move on. We never take the time to notice the delicacy, the intricacy, the beauty! Children see more than an annoyance - these small human who embody the joy of living, recognize the possibility for magic and fun by blowing on these delicate flowers. They take the time to watch the transformative effect of breath as the seeds scatter in every direction. Perspective can change everything. 

When I lost the ability to walk normally early in my diagnosis, it forced me to change my perspective. I'd never considered the awesome, intricate, complex act that walking is. I'd never felt gratitude for the transformative effect of thought on nerves and muscles and tendons and ligaments. As steroids and time took me from relapse to remittance, I experienced walking as I never had before. A new perspective changed everything and I for the first time appreciated the awesome, intricate, magic dance walking was. No longer an automatic, simple, basic unconscious act to take for granted. Perspective changes everything.

.....and time! Okay, I went about 25 seconds over. I even managed to relate it to MS. Win!