How the Mask Can Hinder

Back before I had an ‘Access Plan’ (called a Disability Plan, in other countries perhaps? Oh wait, is it only Victoria University (VU) who’re up to speed on this?) created for me by VU In 2012, I began to get sicker; I thought that was as sick as I could get. I didn’t know that it can much worse than that. When I had to wear a mask to school, and found even that didn’t help with the fragrance in the class, I became frustrated and wrote this to my Disability Liaison Officer (DLO):

“If it’s [the classroom] not a fragrance chemical free, aromatic solvent (aerosol) free area, then it is only fair if the students or teachers tell me, so that I can leave and not get affected. It’s not the smell; it’s the chemicals in the products, specifically hydrocarbons, solvents and fragrances that affect me. It’s not fair that I have to wear a mask to protect myself from products that the other students are wearing, especially when the mask actually stops me from being able to tell if there are sprays in the air, therefore making it impossible to protect myself by taking avoidance action! The only way to tell is to remove the mask, breathe the air, and see if I can smell it, sometimes I can, but other times I can’t because ‘smell’ is something a person acclimatises to; however, once I get symptoms, then I can tell. (Wearing the mask is akin to putting my head in the sand as far as knowing what is in the room.)

Also the mask hinders me in that, when I move to the left of the right, open my mouth to speak, laugh, cough, or yawn, the products enter, and are held in that small airspace where I breathe them in. And I can taste them.

I would be better off just leaving if there are sprays in the room, rather than staying until I get sick. Ideally, the teacher could tell me so I have the choice. I appreciate it when someone warns me that it is there, because that saves me from having to breath it in to find out. (This year, 2012, many times I’ve come to class, keeping my mask tight to my face, so that I can stay as long as I can before getting sick—I know I will get sick and have to leave anyway as that has been the pattern this year—but on a few occasions there has been a high concentration of aromatic solvents in the room, which have made me extremely ill once I have left, removed my mask and gone home. I know they were actually in the room because the next day, the clothes that I wore reek of them. (I shower and wash my hair as soon as I get home but many times I haven’t been able to do this quick enough; and sometimes it’s impossible to leave my mask on until I can get home to shower because I need to remove it to drink, eat, and even more importantly, breathe fresh air once leaving the building, or on a break. If I do this, I get sick.

On these occasions, if I knew there were fragrances, deodorants in the room, I’d leave my mask on until I could get in the shower at home.)) In the true sense of being disabled, having this contradictive action: having to smell the air to find out if something is there, and then getting sick from breathing it in, is something I wish someone else could do for me.”

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I didn’t get a Teacher’s Assistant to sniff the air for me to see if class was safe for me; however, I did get something better than that….

More

Next I’ll be blogging about how I got to be in a Fragrance Free classroom.

And parts of My Access Plan

Michellina Van Loder is a Professional Writer, Journalist and Blogger. This is where she shares her tales about trail blazing her way out of the Labyrinth of Chemical Sensitivities and Mould. This is also where you will find the latest Research on related topics.

When is the Right Time to Retreat? (Part II)

Reality is a cliche from which we escape by metaphor ~ Wallace Stevens 

(This is part II in a VII part post about what it’s like studying at University while sensitive to chemicals. It could be used as a ‘How To’ template for people sensitive to fragrance chemicals—or other types of chemicals—who need to become the creators of change in a school, workplace or their local church or hospital enviroment. That’s where we, us fragrance crusaders (warriors, if you borrow from that mythology) come in. We are the pioneers, whose job it is to be the ones who stand up alone, in a crowd and speak up, not only for ourselves but also for all who will come after us. What we do today, will serve our fellow sisters and brothers tomorrow! (Disclaimer: I’m not that good at standing up and speaking in front of a group of people; but I’m learning. And here,  just for you, is what I’ve learnt so far… )

In part I of this post, I was a devastated mess. When I wrote it, I’d been considering quitting my course, even though, it was my everything: my rock in a world of chemical onslaughts. Last year, in my melancholy mess, where thoughts of ending more than just my education subsisted along with this innate desire for fighting for my rights (my right to go to class; my right to breathe; my right to clean air; my right to hang out with other humans who have similar interests.), I had no real intention of quitting. Anything. (There were other challenges beating me down, gut issues, low vitamin D, and, I was sad, mourning a life that I’d struggled to get back; and had, then, it slipped through my hand-cream-scented fingers.) So, in answer to my question, when fragrance chemicals are beating you down, ‘When is the Right Time to Retreat?‘ The time for me to do this was during August to December 2012 (that year being my Annus horribilis); so, let’s ‘retreat’ back to that time period, shall we?:

There has been many a day, running into weeks, where I have sat on my bed, laptop on my legs (nine pillows surrounding me as if I am Cleopatra, herself, awaiting Mark Antony!), lost in my writing or the research of my novel ‘Chaos and Adversity‘ (the working title). I’ve got this amazing desk but, frustratingly so, cannot sit at it: a chemical irritant—that hurts my head like aerosol-solvent-based hairspray does—is embedded in the wood. Mostly, it’s inside the draws; but if I sit there long enough, the sharp pain in my temples, and ensuing agony breathing through my nose, will distract me out from my writing zone. So, even though writing while sitting on my bed is a health and safety concern (as I learnt in Victoria University’s TAFE Professional Writing and Editing online module: Industry Overview I), I have always been comfortable—especially when my dog Bella, jumps up to warm my feet (and my heart)!

Here it is my beautiful writing desk:

My writing desk. It's a copy of a Louis IV, circa 1890, or so I was told

It’s a copy of a Louis IV, circa 1890. When I recovered, end of 09′ – 10′, I could actually sit at it and write! So, of the 6.3 years that I’ve owned it, I’ve only been able to use it for two of those—ergo, I still adore it, and cannot bare to part with it!

My writing is everything to me: it’s how I sort out the world: my past, my present, my future. It grounds me. Going to Victoria University has been the most phenomenal experience: it has enriched my being, made me a better, much more empathetic person. I understand the world differently: its many shades: when I look at a problem I see it from so many different perspectives. (I know longer think that I’m right about everything.) This is a gift.

For a long time, right from when I was born and put up for adoption, I felt as if I’d been misplaced—cast adrift with no compass. Because of my experience at VU, I feel that I know who I am. This has grounded me: instead of feeling lost with no sense of belonging, now I feel free, connected to all the writers—dead and alive—whose work I devour; whose work I feel connected to. This connection to all the budding and established writers that I’ve met at school (and online) is something that has sustained me through turbulent times. This connection. I want to be a writer; I am a writer; I want to interview other writers; I want recognition; I want to live in a writerly world; I want to help others; I want to be part of change. And I’ve touched on many of these qualities, qualifying them to this part of me that desires to belong; and I have achieved all of these things, to some degree.

But, here are two questions that were posed to me last year… The first question, thrown inadvertently at me by life: How much do I want this education that can give me a writer’s life? (I’ll get to that answer last, because that’s where the challenge, the point of this post, lays.) And, the second, posed verbally to a class of students, including myself: Do I want money for all my boiling and toiling with words, or, do I want recognition? (Because, apparently, unless you’re really, really lucky, rarely can a writer have both.) Well, I was hoping… I imagined that money would come with the territory. (If you too are a writer, then perhaps, I hear you laugh.) It appears that non-fiction is the path that I must walk for this.

A discovery was made this year: as soon as words, sentences and paragraphs worthy of even trying to pitch to an editor or publisher, need to be elegantly crafted (or hastily spewed up and onto the page (depending on my feelings on the day)), my internal pressure, my drive changes and it doesn’t feel like fun anymore. Looking for this pathway paved with gold has me straying from the direction of my newfound internal compass. It’s not like writing my blog entries, or daily rambles in my personal diaries, or the creative chunks of time spent crafting my novel. No, and it’s not like working on poetry either. With poetry, there’s imaginative freedom, pools of thought, flowing words trickling into a beautiful pond of deep satisfaction from my efforts. Every time. It’s a sure thing. Another teacher said to us, as a class, this year: If you can find something to do for work that you love, you will never work another day in your life. So that there, my darlings, is the answer to second question: Write about things that I love, things that can make the world a better place. My novel may not bring me money but it will make the world a better place. And for money? Write about things that I know to be true, and then pitch them at my targets. And if they miss? Try, try again. Elsewhere. Not at Mamamia. Somewhere where they pay actual money.

As for journalism? Perhaps, I’m just nervous and don’t believe I’m good enough; or maybe I don’t want to add to the lies and deception that shape people’s views in this media driven world (You see, I wanted to be a health writer, but I read so much spin. Spin spun for money. And being a person suffering with ill health, I know first hand that desperate feeling of being robbed by charlatans. Why add to that? And if I tell the truth, who would believe me? We wade through so much information, looking for the truth, whose to say my truth is the truth?) Why can’t I be free to just write poetry and gritty realistic fiction? Or memoir. (Or whatever genre my writing gets pooled into next week.) And pour my heart out (occasionally or frequently) into this blog? (And, eventually, get paid for doing what I love?) This pressure to make a living from writing? It’s a let down, but I’ll try not to think about that, even as I have my head down in an assignment that could, if I’m brave enough, be submitted to Weekend Notes, and if accepted, I could actually earn real money. Who knows? The act of getting cashed up for something I love doing could create a monster within‽ Thanks to the Professional Writing and Editing TAFE course at Victoria University and my bombastic thirst to get an education!

In answer to: “How much do I want this education?” Well, that just centres my mind on all these other questions: How much am I prepared to suffer? How far will I go? Does it bother me when people don’t understand about the fragrance situation? Don’t I just feel like I’m this person who is just so annoying; someone who is different from the pack; someone who just will not go away? How can I ask a group of people not to wear fragrance? Who do I think I am? Isn’t it the same as asking someone not to smoke a cigarette in an enclosed space? (Fragrances and cigarettes both contain benzene, formaldehyde, Ammonia, Butyl Acetate, and many other ingredients. That. Are. Exactly. The. Same.) Don’t I have the same rights as everyone else? Am I really that different? Is this even a ‘real’ disability? (As apposed to a person in a wheelchair. Or someone who needs constant care?) What about that person who said to me (in my very first non-fiction class at VU): “I’m so tired of people like you who claim the disability angle, then pretend to study, so they can get more money and don’t have to work.” (Look, the person who said this worked in an unemployment office; so, as a writer (who can gaze at things from many perspectives), I can understand this one. But only just. This comment hurt and shocked me. Then it made me stronger. And what about all the people whom I’ve inadvertently educated on the matter of Fragrance and Health? People who have changed their lives, the products they use? All because they met me, and saw and heard first hand what personal care products have done to me? Those are cases of, me, the educated becoming the educator. Not something I imagined doing when I enrolled in Professional Writing and Editing (PWE)!

So the answer to all these questions regarding my education: it depends on perspective. And as a writer, this will change as do the days I wake up. However, the blood running through my veins making me a writer cannot change:

So, with writing being the essence of my life, how could the option of retreating from my education even be an option?

In my safe room, in my bed, my head stuck in assignments, reworking my 2nd draft of the short story, possibly a Novella, Cinderella and the Happy Hooker Mythology (Something I’ve now mixed with the chapter workshopped in Novel II class, 2011, ‘The Kindness of Strangers’.), trying to ignore my first draft (190,000 words) of Chaos and Adversity (An easy task: Just the thought of looking at it made me cringe.) and floating in and out of the idea of an Anthology of Poems, now almost finished, called Beauty verses Pain. My head was a mess, and I didn’t get much done, apart from reading other people’s writing, and every article in The Age  (even if I wasn’t interested in it) every single day (now I think I must of been pre-preparing for this year’s Advanced Non-Fiction class!), every online Overland Magazine article, and Griffith Review. My problem was, even though the work in the classes was delivered to me electronically at home (thanks to Victoria University Disability Services (VUDS)), the Professional Writing and Editing Course at VU is not designed to be taught that way—via digital recordings of the class. There are some modules that are offered online. And I had done those already. But you know? After almost completing certificate III of Business Administration online (I couldn’t get my head around the finance part, so I left that course, missing out on finishing it because of that one last too-hard module), I’d already realised that I just don’t learn that way. I’m fortunate enough to know that I’m a visual-kinaesthetic learner. Besides, I need human interaction. Don’t we all? Okay, J. D Salinger didn’t, but I’m no Salinger: I’m Michellina van Loder!

Coming up: Part III of When is the Right Time to Retreat?

Michellina Van Loder is a Professional Writer, Journalist and Blogger. This is where she shares her tales about trail blazing her way out of the Labyrinth of Chemical Sensitivities and Mould. This is also where you will find the latest Research on related topics.

Information, products and views presented by guest bloggers @The Labyrinth are not necessarily the same as those held by this blog's author, Michellina van Loder. Reviews are my own personal opinions (unless stated otherwise); and satire is used throughout personal posts. Any health topics discussed are not to be taken as medical advice. Seek out medical attention if needed and do your own research; however, you're welcome to use mine as a start.
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