Tag Archives: Life

Invisible Illness – or how to multiply by three

People who see you in a café or on the street, who talk with you at work or in the shops see a normal young woman. Fairly decent looking, soft around the curves, blue eyes and a quick smile. They see a person whom they probably forget moments later as that’s what we do with
strangers – passersby who don’t occupy a permanent space in our continuum of daily routines.

Quite unremarkably, our daily lives evolve around our own needs, wants, routines – our very own do’s and don’ts. Those passersby wouldn’t “sense” the churn in your gut, the ping-pong match inside your head, the tremor in your hands which you keep deliberately constantly busy or in your pockets; you don’t mean to wave so much when you talk – it’s a means to an end. They wouldn’t notice the wobble in your legs or tightness in your chest, or mourn with you the sudden shorter haircut you just had (as you try to hide the drastic hair loss). FB_IMG_1447633471140

Even those closest to you whom you see or speak to nearly on a daily basis miss the signs – not due to any fault of their own, but rather because you have become a master of guises as varied as your symptoms. One for each day, person and definitely each situation, warranted or not. You know whom you can be weak with and whom not, though given the choice you wouldn’t anyway. So you put on an act.

With no outward, visible, tangible symptoms who would believe you anyway? You don’t ail the same way as they do, bounce back the way they do, snap out of it like they would, spend your times of remission they way the expect, or deal with your relapses as they have advised. So you must be okay.

It is an invisible illness as when you see me you see no scars, you see no bodily fluids oozing out of me in dramatic gushes and you don’t hear  me moan as I hold my forehead, a lady about to faint, softly and delicately. As one ought. But I don’t

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It can’t be that bad if you’re out and about, right? It  can’t be that – you ate that burger! It can’t be that bad when you can come to work.

They don’t know that going out is a form of self-medication; they don’t know how walking helps with pain or how socialising helps your mood despite being so doped on the meds they bump into you that you can barely follow a conversation.
Or you just needed a distraction, a feel for normalcy.

They don’t know that the day before that burger you ate nothing because even a sip of water would create cramps so violent you threw up pile and today you are feeling better – and ravenous. You got to take those moments because you don’t know when the next one comes around.

They don’t see how despair each morning when you discovery yet another piece of clothing you don’t fit in anymore as the medication that is helping you also comes with an anthology of side effects and makes your body distort. You win some you lose some.

They don’t see that the smile, quick wit and talent for banter you spout and the non-stop go-go-go you are at work is letting you try to be one of them, not the weak link, show yourself and them you can do it, you are valuable, you can be productive member of society – and that makes a difference for them and you. You are not alone.

Every invisible illness is as different as is every survivor. The coping mechanisms suit our needs, not your wants. Some want, yearn and demand their illness to be recognised, understood and seen so they don’t struggle alone. They want awareness. Some just want to plod along, un-judged and unnoticed. Move on and forget that today it took me an hour to convince myself to get out of bed and get dressed and go out just for a cup of tea so I feel like me, not like a piece of furniture. Some are (admittedly like the writer) stubborn and proud and hate nothing more than to be continuously seen as a patient, as someone who is sick, to be felt sorry for. The attention, pity, disbelief, worry, and resentment, the desperate want to help and want to make it better for you – it all piles up. And many in recovery tend to end up caring more for those wanting to help than helping themselves.

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“Pick yourself up, dust yourself off, puck up buttercup.
So much to look forward to, you can do it.
Try this, you’ll see, you’ll feel different.
It’s a new day, keep your head up.
It’ll pass, just take your meds.
You’re over-thinking it.
You don’t look sick.

It could be worse.
Snap out of it.”

See, that gig I went to? Did you see how I spent half of it crouched behind peoples’ legs as I couldn’t stand upright from pain? Or did you know I took the first sick leave in more than a year just so I could have time start the recovery my way – not yours. If it makes you feel better to scrutinize my way of weaving through this rotten hand I’ve been dealt with, telling everyone she must not be sick because she is walking, talking, socialising, or eating this and drinking that, that is your prerogative. But don’t do it behind my back, don’t analyze me without having a day in a body that is attacking you, or a mind that paints a picture you don’t quite grasp see or a brain that disconnects and connects at lightning speed from one thing to another. Talk to me. Look at me. See me.

If you don’t see me, don’t judge me – I might not do what you expected from me, but I am doing my best to do what is right for me. I am not you – I am a rainbow; and I quite like me.

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Remembering the Genius in Genie, and in Life.

“You – you alone will have the stars as no-one else has them…In one of the stars I shall be living. In one of them I shall be laughing. And so it will be as if all the stars were laughing when you look at the sky at night.

Robin

I have loved the living picture, the spoken word and all performing arts as long as I can remember.
Both of my parents love literature, music and enjoy the arts, both in their own unique way, and that love has been passed on to me, my brother and my younger sisters.
And as much as I hate to admit it, there was a person in my life once who had a profound impact on me when it came to film. I liked watching films prior to this person, but with this person (who was with film, like in everything in his life, fanatic) my appreciation and notions of entertainment grew into a full-blown love and passion that I can barely keep up with recently.
After high-school (A-levels, lukio or whatever else you might call it) I went to Ireland for the Dublin Business School – School of Arts, where I started to study Film, Literature and Drama . The teachers I had were probably some of the most dedicated group of individuals I’ve met as they were teaching what they loved, though maybe not always what they knew. But it was enough to fuel the already ignited passion within.
Life has swept me away to duty and command – but every now and again I get to return to this once so strong passion. Watching film after film, show after show and I always return to those I’ve learned to love or lived with for years (Polanski, Allen, Gilliam, Coen’s and single films from more obscure directors – well, maybe not obscure to you, but obscure enough for me). Perhaps that’s why when I learned the news of Robin Williams, and mere day later of Lauren Bacall, I was genuinely upset. I cried in the bus on my way to work after I saw the breaking news on Robin Williams (silly people around me asked me if I needed help – how could they not understand we were beyond help; the Genie had died?!). But Williams was THE talent for me for very long time. Him and Billy Crystal. They hold no comparison. But also, it reminded me how little we know of those we admire, and of the fragility of life as we know it. Robin Williams, for me, has always been there. Always.
Suicide, eh. Shaming, blame placing – seriously? Body’s not even properly cold yet. I don’t think the guilt and shame put upon his previous wives is fair (financial issues, divorce bladibla); depression is real depression is suffocating and depression – most of all – is beyond words, and when it comes to that stage, even the legend himself said, in the role of Lance in World’s Greatest Dad:”If you are that depressed, reach out to someone. And remember, suicide is a permanent solution to a temporary problem.” Did he? We will never know.
I admire the spirit. I admire the strength. And I do, despite it all, admire the facade. I admire the man who despite his own demons found the time to give to those deserving (the troops, the sick, and other).
In an interview with Ellen, from 4:05 there’s a bit where Williams mentions his heart surgery, getting a second chance in life, refuting possible depression and “feeling alive”… Haunting. And not to remember, the man was out to spread joy despite his own demons, so make sure you watch till the end to see the Janet Jackson impression. Priceless.
All this. All the media hype. All the talk of what his life was like. And the actual act of William ending it all… Goes to show, we really know anything about the people we see in the public eye.
The fact whether or no I knew him doesn’t change the fact that I will miss him. He was one of the first actors I was aware of as an actor, as a person whose job it is to create what we see for entertainment.
His films were a part of my growing up. Mrs. Doubtfire was probably one of the first films that had me laughing that genuine “I know what’s happening” here laughter, as my parents were breaking up. Jumanji was a film our dad showed us, and I remember being utterly terrified for weeks on end that I’ll be sucked into my board games and monster will take me (over-vivid imagination, perchance?) and to this day, Dead Poets Society, Aladdin, Jack, The Birdcage, The Fisher King, Hook and Mork & Mindy top my favorite’s list. There are so many of his films I haven’t seen yet, or should see again. I still haven’t comprehended the fact that this amazing man isn’t there. And I haven’t comprehended the fact that though I know first-hand what depression can do, that it can still break someone so … Williams.
In the Genie’s own words; “You don’t know about real loss, because it only occurs when you love something more than you love yourself.”
Rest in peace, o Captain, my captain. I will look at the stars for you, the stars where you are free

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A film night causes worry for the future of the written word.

IMG_20140727_104524I watched a film tonight. I wanted my mind off my dissertation so I can read it again with a fresh mind (we’ll see…) but I’m not too sure my choice of billing for the night were the best. Considering, I initially spent the day reading Keith Richard‘s Life while listening to the Rolling Stones, I was already in a “mood”, if you catch my drift. You mix that with some red wine and months of isolation and selective insulation in order to get the dissertation done, watching Kill Your Darlings was just the kind of “it” that was bound to work its way right in my head.

What initially caught my attention was how Lucien Carr (Dane DeHaan in the film) asked Allen Ginsberg (Daniel Radcliffe who, no matter what, is for me still odd to see be someone else than Harry who I grew up with, sort of, although I personally thought he did a brilliant performance in this particular film – in The Woman In Black on the other hand… not so much) how many people started the Renaissance (p.21), and after receiving an answer asks how many started the Romanticism (p.22)?

Two and five, respectively, apparently – according to the script and film-version-Allen Ginsberg, if you were wondering.

But see here, this is where I stumbled. 2 and 5? Who? How? What about the others? Maybe I’m still in my research mood – and unused to sleeping what else do I have to do at 10:45 at night on a Sunday, I began researching…

The Renaissance, at least in Italy, can be considered to have begun around the years 1350 to 1400  But to the questions of WHOM started it. Well, there are options. Which are more than two, as Ginsberg in the film suggests. How about IMG_20140727_120552The Medici family? Or then the bundle of individuals such as Dante Alighieri (“the greatest literary work ever written in the Italian language”, ref. 1), Francesco Petrarch (“Father of Humanism”, ref. 1) and Leonardo da Vinci (“THE quintessential Renaissance man, not only in his artwork, but in his outlook on life. Driven by imagination and curiosity, Leonardo was not just an artist, but a scientist, a mathematician, a musician, an engineer and a writer to name but five”, ref. 1). But this again depends on which city you would consider as the “birth place”; Florence? Rome? (ref. 1-2)

And what about the Romantics? Where “no other intellectual/artistic movement has had comparable variety, reach, and staying power since the end of the Middle Ages”. How about attributing the origins to Jakob and Wilhelm Grimm who began to collect the popular fairy tales, till then passed through generations as oral tradition. What about Shakespeare who almost single-handedly reformed English language? Or maybe Wordsworth? Or Shelley? Or later on Blake or Keats? (ref. 3-5)

Then what Kill Your Darlings shows, the Beat Nation. The New America – The Jazz era had everyone in fever.

And in the end… What do we have now? What has become of us?

What is literature that is permanent? Regardless of time or generation, belief or politics? It is something that we would label now as ‘classic literature’, or in other words it is a work of literature that “has stood the test of time; and it stands the test of time when the artistic quality it expresses – be it an expression of life, truth, beauty, or anything about the universal human condition – continues to be relevant, and continues to inspire emotional responses, no matter the period in which the work was written.” (ref. 9)

I have been brought up to love the written word, to respect the books, the stories, the ideas of others, the imagination. My mother is a collector who instilled in me a love of reading so much so that I was an avid reader and “storyteller” before I went to school. My godmother was more cautious – book spines are not to be bent! I like my book to look worn out, exhausted – read through thoroughly. My father, recently, as well as joined with the latter part of my studies, gave me the spark to start examining and reading (or when not reading, at least watching) Nordic Noir and Scandinavian Crime. My recent chat with Hannu, a Finnish-weird author, got me reading My Struggle from Karl Ove Knausgaard (ummpf is all I can say). And the more I read, and the more I read and more I learn and more I hear – I wonder – what is “it” for this generation? The now? What is to become of us?

Who do we have now that we will remember in example of literary prowess, with such passion, with ever-continuing impact on the way we think or even speak, with such torn opinions as we do remember Shakespeare, Faulkner, Kafka, Marguez, Douglass, Dickinson, Ginsberg, Dylan, Sartre, de Beauvoir, Emerson, Stein, Whitman, Pound, Baldwin, Baraka, Zola, Night with Bookshelves_Article PortfolioAngelou… Too many to mention. Or the books, the books nearly every student will have to read or will one way or another come across that changed history – 1984, The Art of War, Anne Frank, Incidents in a Life of a Slave Girl, The Second Sex, The Prince, Moby Dick, Walden, A Room of One’s Own, or (if you want to go there) how about The Bible?

What is 21st century equivalent of Dadaism,  Naturalism? Realism? Modernism? The Post modernism? Existentialism? The Beat Generation? Is it, dare I say, “YOLO”? And what have that produced in terms of cultural revolution that will taunt and inspire us for generations to come?

Is reading different in the 21st century? If you read the comments under the article, you see most people seem to think that literature hasn’t changed, but people have. The way we read. We prefer (and I use the term “we” very loosely here) shorter, more condensed form of information, whether high literature or a news feed on our social media. We read in fragments, on the go, on our tablets or smart phones, while commuting or sitting in a cafe… Who reads sprawled, long, demanding texts anymore? Is this the reason for the surge of short stories?

There is aplenty of literature worth to read in the 21st century. There is a lot of new wonderful writers and styles to pay attention to. But what have we come across since the 80s that is “norms shattering”, groundbreaking and bending the existence, mind-blowing like we had so much until the earlier part of 21st century. (ref. 8-10)

I have no answers. I’m trying to find some.

For a Salzburg University final exam I once interpreted Stopping by Woods on a Snowy Evening by Robert Frost as to mean we have a long way ahead, life and work, before the solace of sleep that is death (my professor disagreed, though she said it was an interesting interpretation; she rather thought it was about the hardships of daily life). Can we also assume that if there’s a lifetime ahead, there’s hope? I do hope there is more to come that will cause worldwide shudder and raise again the ability to adore, have patience and improve concentration – and for this, we need also world literature, to break out of our comfort zones and be exposed to new and unfamiliar, even uncomfortable, there must be hope, as Work without Hope draws nectar in a sieve, | And Hope without an object cannot live.

 

See more at
1. http://www.italymagazine.com/featured-story/so-how-did-renaissance-begin
2. http://www.ducksters.com/history/how_did_the_renaissance_start.php
3. http://public.wsu.edu/~brians/hum_303/romanticism.html
4. http://classiclit.about.com/od/britishromantics/a/aa_britromantic.htm
5. http://www.historyguide.org/intellect/lecture16a.html
6. http://classiclit.about.com/od/forbeginners/a/aa_whatisclass.htm
7. http://www.gradesaver.com/writing-help/what-makes-classic-literature-classic/
8.http://www.bestcollegesonline.com/blog/2010/06/28/25-writers-who-changed-the-world/
9. http://www.nypl.org/blog/2014/01/28/top-25-books-changed-history
10. http://rodmarsden.hubpages.com/hub/Thirty-Books-That-Changed-the-World

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