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!

Challenge Day 11: Wikipedia Revised

I had a little bit too much fun with today's WEGO HAWMC prompt. The plan was to check out the Wikipedia page for your respective health issue and consider how it could or should be revised to best reflect reality. The current Wikipedia MS page is pretty thorough and consistent with what I know about the disease. I even learned a few little things. The prompt suggests changing things you find to be vague, stigmatizing or just plain wrong as well as adding anything that you think is missing and should be included. I've never actually submitted a Wikipedia revision, but I think this prompt is a great idea because Wikipedia pages are at the front end of search results for just about everything these days and are a primary source of information for many people.

However, I decided to take a different direction and completely revise the page in an ideal, fantasy, fun kind of way. Click to see a larger, more readable version:

Challenge Day 10: Post Secret

I missed a few days, but I'm back for Day 10 of the WEGO Health Activist Writer's Month Challenge. Today's prompt is to post a health-related PostSecret-style secret. I'm sure at some point I'll blog more about what this "secret" really means:

Challenge Day 7: a text for my MS

I'm away from my computer today, so this is my first experience with the blogger app on my phone. Today's prompt is to leave my health a voicemail or send it a text. Clever idea.
Here's a text to my MS: I'm not that into u and don't think we shld c each other anymore. It wld b gr8 if u cld give me back the stuff u took from me and then just stay away.
I recently read that it's becoming really common to break up via text, so I went with it. Ahh, if only it were really that easy!

Challenge Day 6: Why I Write

Today's prompt in the WEGO Health Activist Writer's Month Challenge: "I write about my health because..."

...the basic idea behind my blog is that MS often serves as a muse for me. It can make me think about things in a different way than I would otherwise and it also just makes me think about different things than I used to think about. I write about these thoughts as a form of quasi-artistic release.

...my health can make me feel lonely and writing is a way of connection to others. Even those who are the closest and try the hardest can't really "get" what it is to be chronically ill unless they know it firsthand. I have no real-life friends with MS or other chronic illness, and being part of this health blogging world gives me a bit of connection with others who really do get it.

...I want those people in my life who care to have a glimpse into my health-affected world and I generally express myself best in writing.

...I love the written word and believe it has great power. I write to take the power away from my MS and to turn the ugly of the disease into something better.

Challenge Day 5: a Haiku for you & some witty wordplay

Today's prompt in the WEGO Health Activist Writer's Month Challenge: write a health haiku. I chose to emulate MS haiku-ist extraordinaire Judy of Peace Be With You and do it in triptych:

staying in my head

my MS tries to pull me

darkly down and out

catching up on blogs

I see joy, humor and peace

that MS can't take

and then a surprise

the MS muse takes over

and there is much hope

on a hike. oooo, so pretty! (I crack myself up.)

Challenge Day 4: Crazy Cures

I heard about the WEGO Health Activist Writer's Month Challenge from Brass & Ivory and signed up on a whim. I figured it might be the kick I need to blog more regularly. I'm starting on Day 4, which you should all see as me entering the party in a fashionably late kind of way. Today's challenge prompt: Do a search for a crazy headline or "cure" for your disease and talk about it.

The Only Cure to Multiple Sclerosis is Revealed Again
My quick, perhaps irreverent, summary of this fine piece of scholarship: a doctor discovers the cure (the ONLY cure!) for MS in 1940 and helps tons of patients. Other docs get mad, call him a quack and take him to court. But don't worry, he eventually gets his license back and helps more patients. All the docs are still mad at him, though, and do all they can to suppress what he does because they really like prescribing drugs. This doc knows there is no need for drugs, because the ONLY cure for MS is simply a change in diet. The article says the cure has finally been revealed again (meaning the specifics of this wonder diet, I suppose) but there is no mention of what it consists of or even where to find this information.

Anyone whose response to reading this article is joy and hope and optimism and relief is probably less than mentally sound. However, there is some at-least-verging-on-legit literature out there about CAM nutrition-based treatments, and while I certainly don't think the word cure is appropriate, I also don't easily dismiss all of these claims. That being said, I've long had one of the healthiest diets amongst people I know and I know that plenty of other MS patients have even healthier diets. Yet here we are, still patients. Good nutrition is obviously a vital component of overall health. It may even have a positive effect on the disease process (like avoiding foods that cause, and enjoying foods that fight inflammation, for example) and can be an important component of an overall treatment plan. But a cure? Come on. And don't even get me started on the shakes and teas and herbs and their curative magic. Again, I'm not saying these things can't possibly be beneficial, but come on now. Do at least a cursory glance at some of the basic concepts of science and some of the basic things we know about the disease. I hope researchers continue to study nutrition in relation to this and other diseases and I will listen carefully to what they have to say. I will also listen to (certain) holistic medicine folks on the subject. I will not, however, listen to all the crazy scammy nonsense floating around.

See you tomorrow for a haiku or two! I'll be channeling Peace Be With You.