The Art is a Science

Yesterday, I stumbled upon this article featuring “Neurocomic;” a graphic novel that uses whimsical black and white drawings to explain the inner workings of the brain. Delving deep into the anatomical nitty gritty can be a bit overwhelming for this naturally right-brained gal, so I found this innovative partnership between a scientist and an artist very exciting. Multi-disciplinary work like Neurocomic paves the way for a general re-imagination of how health-related information is given to the public. There is a disconnect between the knowledge of physicians and the public’s ability to process and utilize that knowledge in their daily lives. By working together, the creative sector can be the translator, the link that connects patients to the information, or the art itself can be an outlet for processing the emotional ramifications of illness or caregiving. Perhaps more importantly, it creates an opening for a sense of lightness and play; two things that are seldom found in the dark corridors of failing health, but so sorely needed.

I’ll leave you with Neurocomic’s lovely trailer and a quote I found on the blog, “Creativity in Healthcare:”

“When I come to the hospital for an appointment, I leave the doctor’s office with nothing. I have no idea what the diagnosis will be, or when I know, if I will live. I’m not me, I’m nobody, I am my illness. I’m nothing. Then I see the artwork and I walk down the gallery. I start to feel again…I am back. I am myself again. I have an identity, I have a life. That’s what your galleries do for me. I want you to know what they have meant for me.” (oncology patient at U. of Michigan)

Fear and Other F-Bombs

I dropped the “F Bomb” at my dance class tonight.  Eyebrows went up in surprise as I bobbed up and down, taking terrified, tentative steps across the studio floor. My reflection wavered before me as I teetered on the edge of complete meltdown.  A surge of tears threatened to surface – horrified, I held it in, forcing a small, tight smile upon my lips.  All class, I struggled.  I couldn’t do it.  Every instinct was telling me to leave, to stop, to admit defeat, and in that moment, I couldn’t for the life of me, comprehend why I would ever put myself through feeling this shitty on purpose. Tonight was awful.  It was so hard to keep going, to keep trying despite how embarrassed I was.  I know that’s the point.  I know that’s why I’m doing it.  It’s about not being controlled by fear.

Speaking of “f words,” I have been discovering a new freedom.  My art class has allowed me to discover a deeper enjoyment of drawing, that it is meditative and calming.  I was drawing till 4 a.m. the other night and I didn’t even notice.   In those hours, I was drawing, nothing else.  I wasn’t reflecting or worrying or feeling anything other than the pencil in my hand.  It’s a great change from feeling inundated by my thoughts and emotions.

On the cooking front, two of my keepers came over last week and we cooked dinner together.  It was impromptu and instigated by my keepers, so I’m not sure if it really counts towards my cooking project.  I am hoping to get started on my cooking project plan/schedule in the next couple weeks.  Not quite ready to update you on the writing project, but I promise it’s still part of the plan!

Despite tonight’s difficulties, this week has a lightness to it.  I feel better. There’s more room to breathe.  When I was a little girl, I asked my dad what happened to a friend of his who had recently died.  “He forgot to breathe,” my dad replied. Makes sense, I had thought, feeling completely satisfied with his explanation.  I, of course, figured out later that he was trying to make light of the situation by making a joke, but these days, his words have more truth than he intended.  I think I forget to breathe all the time; physically, emotionally and spiritually (which, according to dad, is probably why I’ve almost died a few times). Yes, I know, it’s a convenient metaphor with all it’s zen, meditative blah blah blah connotations, but it helps me put things into perspective.  There is a feeling of  “inbetween” to my life right now, of a never ending sense of transition, of trying to get beyond this point to something else, but this is it.  I’m there.  I’m here. I need to get that through my head.  It all goes back to making things simple, that when you think about it, living your life starts with remembering to breathe.

Simplicity for Dummies

I am in search of my simple answer.  This is what I know: It’s not in pamphlets, books, websites, case studies or articles about Lupus by people who don’t have it.  It’s important knowledge, yes, but that’s only part of the answer.  I’m done asking why I have this disease.  I get it.  I’m supposed to have it. It’s part of my story.  I’m done with thinking about all the things I can’t do because I have Lupus.  My understanding of that is deeper than it has ever been.  Last Winter, I gave up the full-time working life I had always known.  The identity I had created for myself suddenly didn’t hold up anymore. Everything was stripped away.  As I said in my last post:

I was a clean slate.

So, I’m going to draw on it.  I’m going to paint on it.  I’m going to write on it.  I’m going to dance on it.  I’m going to cook on it.  No big expectations, no high stakes.  I’m just going to do it because Lupus has gifted me the time to do it. It’s time to focus on the things I CAN do because of this disease.  Simple.  Some degree of wellness must come out of that, right?

Drawing/Painting – I am in the midst of a drawing/watercolour class.  My goal with this project is do a small series of drawings or paintings on expressions of my emotions/experiences with Lupus and post them here.

Dance – I am taking a 10-month introductory jazz class.  My body is the most pain-free it has ever been, so I’m going see this class though to it’s mortifying conclusion – a performance at the dance studio’s end-of-year recital.  I will also make it worse for myself by inviting some of my keepers to see it.

Writing – I want to continue to blog more regularly about my Lupus Life, but to also balance that out by focusing on writing something that isn’t “my story.”  Details to follow…

Cooking – The first phase of this project is to approach my keepers to teach me their favourite recipe.  We would grocery shop together, cook together and eat together.  The second phase is to invite my keepers over for meals that I cooked myself.

I know many people would say I would do better by becoming a vegetarian or focusing on more logical tasks like not staying up so late or taking my pills on time, which I am terrible at.  I am, by the way, trying to do better at the latter and perhaps one day I will try a vegetarian diet (I’ve always wanted to), but I figure my right brain deserves a stab at this whole “finding life in lupus” thing.  I don’t know what the heck I’m doing, but my gut is telling me to do it.  It’s as simple as that.

Letters from the Universe

It is true that the Universe intended you to be exactly where you
are.  But, it is absolutely vital to grasp that the intent is not for
you to settle in and live your life in comfort and superficial peace.

This is a modified version of a quote I came across this past weekend, which I will take even further into a very personal translation: “Elena, this is the Universe talking.  Working half-time doesn’t mean you’re not working the other half of the time.  And yes, I will be that vague.  Deal with it.”

…Or something along those lines.

So, I should do stuff.  “Meaningful stuff,” the stuff that I’m supposed to do now that I’ve actually made the decision to modify my lifestyle to make room for health. Since the Universe insists on being vague, I’ll have to wing it, I’ll have to “right-brain it,” because, well, it’s the part I know how to use the most.  I’m hoping that tapping into creative power is the way to lupie warrior power and hopefully, in the middle of all the artsy fartsy, other things might start making sense, too.  Maybe. I’m willing to give it a try.

The problem is, my right brain is rusty.  Very rusty.  In fact, I’ve come to discover that I haven’t used very much of it at all.  My right brain “cred” has disintegrated with time and neglect, with overwork and sickness.  My brain’s trauma last summer has given me the opportunity to feel like a clean slate, to have a clean slate.  I’m right at the starting line of rediscovering the “creative me.”  This is also about keeping my brain agile in order to battle the cognitive shenanigans of “lupus brain” and the possibility of having another episode of psychosis.

Dance.  Draw/Paint.  Write. Cook.

I can’t dance.  My last art class was in junior high.  I’m a lazy blogger & I haven’t written anything substantial since I was 17 years old.  Other people cook for me, mostly my parents (and I live on my own).  ‘Nuff said.

So, that’s alot of stuff, right?  And usually, when someone is stupidly ambitious, it all goes to shit, especially people who have an auto-immune disease and tend to skip their “chill pill.”  Yes, yes, I know, which is why I will take my aforementioned list of artistic tomfoolery (and yes, cooking is artistic) and turn those verbs into what I hope to be convincing, attainable goals in my next post.  And hopefully, I will do it with more grace than I did during last night’s dance choreography. I have sworn to practice this week for my poor little ego’s sake… and for Madonna.  That 30 seconds of her song will never be the same again.