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.

Gratitude and Friendships without Fragrance

Yellow Symbolises Friendship

Yellow, the Colour of Friendship

I can’t believe the first semester of the Victoria University (VU), Professional Writing and Editing (PWE), Diploma Course is definitively and definitely over… It’s been a long wild brain squeeze. Probably, because I only missed one class and I was forced to actually use my brain, while writing, and focusing intently on my work; instead of trying to create and maintain a chemical free environment. My ‘Advanced Non’Fiction’ teacher had me enraptured. Can you believe that I’m learning how to write short pieces? Choosing my words judiciously? A blog post that’s just 300 words? A feature piece of only 1200 (mine was 1337) words? Yeh, well you wouldn’t know by the verbosity of my blog postings would you? Patience please. I will get there. But hey, I had to do all this in class.

I’ve blogged about the perfume free room, the safe place where I can go air quality in the classroom has been adulterated with fragrance chemicals. And, how these impact on my health… This year, the staff at Victoria University have put a system in place so I don’t have to ‘assess’ the air and find out for myself. Both of these implementations enable me respite (if needed) and stress relief (now, gone), but more importantly, these mean that I can work at becoming a Professional Writer in an inclusive environment the same as everyone else.

So I’m pleased to share with you this: I only had to go there once! When I say “had”, it’s not like the teacher’s make me go there. It happens based on my assessment of how I feel physically on that day, and whether there are chemicals in the room that are making me ill. Just because I can smell something scented in there does not mean I should go. No. I always hang about and monitor my body for symptoms. Hell, I’ve even been known to shove a pair of carbon nasal filters up my nostrils so that I can’t smell anything. That way I can focus on my work without having the apprehensive feeling of ‘Gee, does that scent contain chemical components that are going to make me sick?’ And, afterwards, if I do get sick, I either leave (going home or to the library) or I push on. (Having said that, if someone actually sprayed on a heap of fragrance before class, the top of my eyelids swell, the mucous function within my eyes and nasal linings dry up, leaving the parts that have contact with air (my eyeballs and nasal linings), to sting and burn; my chest tightens–all within a few minutes. And I taste it. It’s horrid. If that happens—because I now attend class sans mask—I’d be out of there quicker than you can say, “I need a carbon filter mask.” And this year, a fragrance exposure like that hasn’t happened once. Not. Once.

:)

That one time when I did have to leave, there was something in the room, not sure what it was but it had a floral scent to it, bringing on the beginning of a headache. It just so happened we had a writing exercise, and it was the type where they assess us (being worth 10% of our overall mark) and the general consensus is, that students who have a disability or are ‘access challenged’ can sit elsewhere to do it. So I left, going to the Perfume Free room, which is in the library (and has an air filter running in it). While there, it was obvious by the way my headache ebbed pains into my temples pulsating out throbbing beats up through the veins protruding out from my forehead, and the way my lower back throbbed, aching, expanding discomfort across my hips (a chemical based symptom caused by the inhalation of airborne solvents or/and petrochemicals (and sometimes woodsmoke)), I knew that I’d just made an agonising yet serendipitous escape.

One of the six Blue Air Purifiers provided by VU. This one's in the Perfume Free Library Room

One of the six Blue Air Purifiers provided by VU. There is one in the Perfume Free Library Room and a couple in my classrooms (the others are used for other students presumably). (The sign on it says: Property of Student Engagement. DO not touch or remove.)

By the time I finished the exercise, and had drank every available liquid that I had with me (a large flask of rose hip tea and raw organic honey; 600 ml of water; and one coconut water), along with a teaspoon of tri-salts, my bladder was about to burst. As I slapped on my mask, and took off to the nearest fragrance free toilet (a 2.5 minute walk away) and took a pee, the pains eased off. I emailed the teacher as to why I didn’t want to come back afterwards. It turned out, that the class was finished and I’d gone over time but the teacher said that was okay. Whoever wore that product didn’t wear it again. (It’s like the staff at VU have turned into magic fairies who just effortfully manage this situation, thus saving me the stress of confronting a room full of people and asking for them to help me. Again. And again. I no longer have to do this. (Immense Gratitude for this.) It’s not good Public Relations (P.R) apparently. And that’s okay. (Having said that, I think I need to do a course in P.R.)

And the last writing exercise we had, just a few weeks ago? One that was just a classroom exercise where we weren’t going to be graded on, but still required studious concentration, (We had to write an anonymous pretend blog post and then we all got to read them later on, wondering who wrote what.(I’ll post mine later. It’s about coffee!) I didn’t have to leave because, just like all of the other classes, there weren’t any chemicals in the room causing me to feel ill. The teacher asked me if I’d like to go elsewhere, and I replied, “No thank you. I’m find here.” We smiled at each other. We were both pleased. (I must tell you that I have the most awesome teacher. If I could write like her, and speak like her, I’d be as high (with happiness and self-satisfaction)  as that Gonzo Journalist in Fear and Loathing! But besides that, she has created the most inclusive fragrance free culture within the class. And minimised my exposure to petrochemical based inks. It’s magic. I’m in a place of peace and gratitude and it’s the one thing in my life that’s working out! I love VU.)

So it was just that one time, which was three weeks into the first semester (or there abouts). Isn’t that amazing? I know that my readers in Canada may think: ‘Yeh, this is normal in a school situation. We often go scent free.’ But this is Australia. And let me tell you, thanks to your leading exemplary examples, we are catching up! (Kisses and thanks to all my Canadian darlings xx.)

Anyway, people get it, they really do: the staff at (VU), the students there (in my classes) understand about the fragrance issue. This, I’m so grateful for. My heart swells with gratitude and I want to make the most of what I’ve learnt, so they can say: “We are so happy we helped, Michellina van Loder, emerge. She has made us so proud!” (Or something to that affect.)

Which brings me to the point of this post (finally). Early on, when I started this blog, The Labyrinth ~ and finding my way out, I posted: Choose Friendship over Fragrances. This idea resonated deeply because I was in the mist of losing a friend. (Oh, I’ve lost a few over this illness. But in the losing is the dark gift of realisation that they weren’t true friends at all). Apparently, this happened because (after 18 months of an intimate-sisterly-share-all-your-dreams-and-desires type of friendship) she absolutely had to go back to wearing her beautiful designer fragrances. At first she said it jokingly. (She’d just returned from overseas and had bought so many duty-free perfumes, she was flaunting the unopened, and unwrapped boxes, in front of me. On that same day, she also showered me with gifts, so I was feeling rightfully confused by this highly excited contradictory behaviour.) Additionally, she complained about how she wanted her house to smell “nice” again. This baffled me. But the look in her eye as she said it cut deeper than that because I realised that, perhaps, she was serious…

You see, we were never meant to be: *Dimka and I met way back when, before I became chemically sensitive—hell, it was fifteen years ago—and we never became close because our worlds were just too far apart. She was a homemaker; and I was—Anyway, five years later, I became chronically ill from a series of chemical exposures, so, on my treating doctor’s advice, my daughter and I moved away to Portsea, to live out near the ocean’s fresh air. Apart from a few understanding souls who befriended us, my daughter went to school, but I lived in virtual isolation for five years. I made progress with my recovery, then moved to an organic farm, where I near fully recovered, then, cocky with the joy of re-joining and rejoicing with the human race, we moved back to the city. My house was near Dimka’s house and we started hanging out. Just coffee, going to the shops, catching up once a week. Her attending my daughter’s dance concerts. Me visiting her dog while she was overseas. That type of thing. And, occasionally, we smoked cigarettes and painted our toenails together!? Stupid, I know. But I was *cured*, yeh? Besides, we did it outside in the fresh air and I thought I’d be okay. Duh!

So in the beginning of our friendship, Dimka new I couldn’t be around fragrances for long without getting ill; and she knew I couldn’t be around aerosol sprays without getting chronically ill. This woman was deeply respectful of that, and she changed everything. Just for me. And for that I am grateful. That was such a sweet thing to do. And it blew me away! Dimka set about removing every fragrance device from her house. Still, when I visited, mostly I stayed outside in her beautiful tropical cum Mediterranean garden. I am a difficult friend to have. I can’t just sit anywhere; and if I do sit somewhere, I often have to get up and move to somewhere else where I can breathe easier. Like the time her husband had painted the back gate a few weeks earlier. It was an oil based paint so I end up sitting far out back near the vegetable garden.

Once, she supported me by accompanying me to a funeral, making sure I wasn’t standing next to another mourner drenched in the socially, culturally and fashionably accepted ‘accessory’ expected to be worn with a suit or other mourning attire: designer fragrances.

She set an example to others in our immediate family and friendship group; and others emulated her lead. (Cause that’s how this ‘not wearing fragrance around people who get sick by it’ thing works: People follow!)

But still, between her shampoo and her hairdresser appointments, there were many times where we had to ‘do coffee’ outside and I had to keep a few paces back from her. She felt bad. I felt bad. So she tried harder. I enjoyed her company; and, seemingly, she mine. She was funny. And we got to laugh about the misogynistic values, held high amongst some of the men folk in and around our immediate social group. And, from a feminist perspective, together we compared cultural differences between her culture and mine. Even though English was her second language, and she couldn’t write very well, she was a highly intelligent woman. And a wickedly fast learner.

However, when I decided to enrol in my course at VU, I couldn’t make her understand my reasons. Her first concern was: “Why would a forty-year-old woman want to waste her time going back to school?” Mmm… Why indeed? (That is a whole other blog post.)

:)

Ergo, my writing life leapt on at a furious pace: it was my first year at University and, giddy with the taste of becoming a real writer, I was ambitiously busy making an idiot of myself writing essays that didn’t cut the publishing grade.

Although, later on, mid-year in my second year, I revelled in the discovery that by reading poetry out loud, I could charm her. Appearing delighted, she exclaimed how, in candlelight cafes back home, poets read their works, people sang, and how the atmosphere was so romantic.  She missed her country so much. And by the pride reflected in her eyes, I thought she finally understood why I ‘wasted time’ going to classes. Hurtfully though, another time, I read her an extract of my novel, with the working title: Chaos and Adversity, (which, purely for the protection of her chaste values, I explained that it was only a fictitious story). She liked my homeless character, Jack and his dog, but was concerned for his cleanliness. However, when she met Nicky, my main protagonist who, while pregnant and addicted to heroin, worked on the street as as sex-worker, Dimka kind of lost it: Her lips pursed in disapproval, while giving me a motherly stern lecture about how writing this type of filth could reflect on my character as a person.

(I wasn’t hurt in the way the fragrance issue between us cut me up. No, it was a slight on my novel as a whole. But you know? She’s not a writer, so her opinion was only of value to me as a reader; and with her choice of reading fodder being that of romance novels (in her language), what was I to expect?)

Later, when I asked her to donate some clothing to a charity organisation that I was collecting for, not only did she refuse but she said that I had to keep my distance from people like that or our family and friends will think poorly of me. Her lip curled in disgust as she said that. Something within me changed that day because sometimes my heart bleeds for those girls who are out on the street.

Then, three months into my third year at Uni, I began to get ill. It started during the holidays, after a trip to Thailand. The gist of it is here. One day, over coffee outside in my kitchen garden, while suffering physical symptoms bought on by Dimka’s hair products. She had just been overseas, I had sworn off the cigarettes because just breathing in second-hand smoke made me dizzy. And this coffee catch-up was no different. My face began to get hot, increasing to a boiling stinging over my whole face. Alarmed, Dimka exclaimed that my face was glowing red. Amused at her distress, I agreed.

Kind of like this. Same shit; different day...

Kind of like this. Same shit; different day…

“Yeh, I Know. It’s a histamine reaction to fragrance chemicals in the shampoo you use,” I said placing my cup onto a coaster with a picture of a frangipani on it.

“No, you’re going through menopause,” she said knowingly as she gave head to her frustrations by sucking on her menthol slim cigarette.

Then a few weeks later, during a visit, my eyes started smarting from her washing powder and fabric softener (as they had been doing with everyone else’s). I explained what was happening and she got it. Or so I thought. I gave her some of my products to try. She didn’t like my conditioner, which was fair enough. And she refused my offer of a box of fragrance free washing powder.  (It’s futile, trying to control people who you have no control over.) We began to see less and less of each other.

To cut to the chase: when she found out some truths about me via gossip from someone else, even though I didn’t admit to them, I didn’t deny them either. (I’m not ashamed but I’m not about to disclose my open heart for the crows to pick at.) And for all of these she judged me. So, I suppose that when she said:

“I need to tell you, I’m going back to wearing my expensive perfumes,” she said as her forty-five year old face crumpled into that of a petulant child. “I miss them so much.” And then she said she was going to go back to using scented plug-ins too. [think ‘Ambi-Pur’ or ‘Glade’ contraptions that plug into power points spewing out truly-potent-fragrance chemicals into the air and onto everything and everyone in their vicinity] “I miss my home smelling nice,” she said.

Obviously, it was just an excuse for her to break off the friendship. I could sense that. And I cried because this had happened before with extended family members (mostly teenagers, which is easier to understand) but never, ever had this happened with a close friend. So in Dimka’s case, I was grieving the loss of an ally, a confident of sorts but I was reassured in the knowledge that I hadn’t shared my truest of hearts. For that I save for my writing… and my blog!

(There are an abundance of slights and hurts in this life that have cut deeply into my heart because of my physical sensitivities to chemicals, and I know that’s just how it is: it’s like once you are sick there’s a line drawn between you and the rest of the world. If you are well enough and others are thoughtful enough to help you, you can walk along that line but if, for some reason (like the example above) you can’t walk it, then most commonly, you are excluded from life and most social activities. But, if others are compassionate enough to change their use of chemicals in your (*and other chemically sensitive individuals) favour, then you get to either cross it and partake in the world where everyone else is, or… not. Because if you don’t have that ‘group mentality’ on your side, then you are stuck on the other side of the line. Isolated. Alone. Excluded from the pack.)

(True friends are like angels. They go out of their way so they can cross that line and come into our world. Chemical free.)

Then, in 2012, as most of you, my dear readers know, I became so ill I had to live in isolation for a few months. So the wound Dimka dug into my heart, her human failing, blew away into the past, covered over by the crackling thunder of chronic pain.

Luckily, this year, I’m on the mend.

:)

Chinese mythology suggests five colours of the rainbow symbolises harmony on Earth

Chinese mythology suggests five colours of the rainbow symbolises harmony on Earth

And, surprisingly, I’ve made some new friends. Friends who used to wear fragrances too. Friends who have become educated about the harmful effects of fragrance chemicals. Friends who now feel better themselves for not using it. Friends who feel good about themselves because they wouldn’t want to wear something that could and would cause harm to others. Friends who have read, or heard about the content of my writing and they’ve withheld their judgement. Either that or that they just can’t care because they are so absorbed in their own writing.  Some care enough to edit, comment or share the joys and failures of the publishing grind but that’s as far as it goes. Ethics prevail:

We are writers after all. We are poets. We are journalists. These ‘elements’ of life are just ingredients for whatever pot is on to boil. Whether we came by them via research or life experience is of no consequence. It’s the emotive content of our writing that matters. The impact. The punch… And [as I cower down, frightened] getting published.

So when I met these new friends, friends like *Pat. ‘They’ are a student who has there own labyrinth to walk through. But they are amazing. Pat is an angel of immense light. When they found out about my condition, they inundated me with questions about fragrance free products, and how to actually go fragrance free. And they changed their whole personal care regime. And this time not just to accommodate me. No. They changed because they are smart enough to understand that this could happen to them. Or worse, as they told me from their perspective, they could seriously injure someone else and not even know it, and that horrified them. (How compassionate is that?) And another day, they even rallied in my defence with some other students when a minor issue popped up early in the semester. It was—well I’d love to say, but for privacy reasons… Just imagine it as ‘office politics’ but the sort that surround fragrance issues in the same way that ‘office politcs’ surrounded the smoking issue in days long gone past… (Progress for us all is in sight!)

Outstandingly, they offered to go to the supermarket and conduct research on my behalf about exactly what fragrance free, and unscented products were available in the leading supermarkets of Australia. I was astounded!  Pleased too: I could add them to my growing list of ‘Fragrance Free and Unscented Products’ that I, and the staff members of VU were distributing around the classes and the main office. (I’m also creating an eBook, which I will give away for free right here. (After I finish a couple of reviews, and interview and a Vlog.) Pat blew me away. (As did around 59 other students.) Such compassion. Such empathy. Pat healed the wounded part of me that Dimka had crushed. And for that I’m truly grateful.

Angels do walk amongst us…

Words cannot express enough gratitude for the belief, now restored in the existence of grace and goodwill in others. My perspective of humanities’ capability for compassion is restored also; but I hope with all my heart that my words have at least touched on expressing this. In regards to friendships and my schooling, I’m truly amazed at how this year has gone so far. It’s almost like a dream.

These are the flowers that *Pat gave me a few weeks ago!

These are the flowers that *Pat gave me a few weeks ago!

Oh, the flowers? Pat asked me if I could have fake flowers around the house. They new that if I had real ones (even though I collect and love plants and scented flowers, I can’t have them inside), when I’ve had to many chemical exposures, and I’m sick, exhausted, and my sinuses are inflamed and throbbing, inhaling any scent can be painful. Thoughtful much? I’ll say!

And, this is how much this friend gets it:

Money in a zip-lock bag

Money in a zip-lock bag

When Pat gave me change for some fragrance free products that they were kind enough to buy for me at the supermarket (I got to try new hand soaps, liquid hand soaps, and a washing powder (amazingly they were all fine!), they put it into a zip-lock bag so that I wouldn’t have to touch it just in case it had fragrance on it. (I hadn’t even mentioned that problem; they worked it out for themselves!) Now, my dear friends out there who have chronic chemical sensitivities will know how much of a problem money can be. New money is usually okay. But most money is covered in fragrance (or the smell of the chemicals in cocaine). Weird, I know…

*Names have been changed to protect the angels and ignorants that walk amongst us…

How have you had your faith in humanity restored by friends who understand how difficult it can be to socialise when you suffer physical symptoms to chemicals and/or fragrance?

What are some of the kind acts that friends have done for you?

If you’ve had a friend who shut you off because of fragrance, you’re welcome to share?

Or, if you are not sensitive to chemicals, how far would you go for a friend who has this problem?

My Soapbox is your Soapbox!

Is someone missing from your life?

Source: usodep.blogs.govdelivery.com via The-Labyrinth on Pinterest

 

For Your Perusal, There’s So Much More on This Topic

Ichigo Ichie: Human Canaries and Friendship

Allergictolifemybattle: Cookie Baking and Friendship

SondaMCSchatter: The Secret to Friendship is Being a Good Listener

Linda Sepp: Friendship and Fragrance

Invisible Illness Week: Let’s Choose Friendships Over Fragrances

Disability Blog: Friendships Over Fragrances (The Disney Holiday)

Cleaner Indoor Air Campaign: Choose Friendship Over Fragrance

The Labyrinth ~ and finding my way out: Choose Friendship Over Fragrances

Sherri Connell: Going Fragrance Free When Visiting a Loved One

David Lawrence Dewey: Are Perfumes and Pesticides Slowly Killing You?

Letter for Churches. The Cleaner Indoor Air Campaign

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 I)

{This post is dated 22 August 2012}

As I sit in the auditorium at Victoria University (VU), butterflies in stomach, pencil in hand scrambling to jot down information essential to easing this mind-blowing transition into the unknown… I listen intently. (This is it; I can’t believe I’m here. Me, here among the scholars, authors and… Who knows? The energy is thrilling through me; for here, I know I can make something good.)

“The walls are talking to me. I am the most important person here. Here, I will find my voice, to shock, to soothe. For I am a part of this thing called the love of language. Teach me something to do with this language…” The lecturer continued.

I can do this; this is easy. I say to myself.

“Keep your sense of wonderment. Listen to strangers and be enthralled; bottle it up and ask yourself, ‘What is it about this that enthrals me?’”

freeimages.co.uk home images

This was the start of my journey to become a writer; a real writer, not some hack who, having left school at fourteen, sat at home writing heartfelt yet awful poetry, trying her hand at imitating great writers, but never getting more than a few agitated washing machine thoughts scrawled down onto the page.

Almost three years later, as I reflect on how far I’ve come, and how way back when—before I even considered doing the Professional Writing and Editing (PWE) course, I used to tell people I was a writer; I even bluffed my way into scoring a gig as a columnist, writing a column for a magazine: Sensitivity Matters, where naturally—but luckily for them, and me—there was an editor to mop up after my contributions. These days though, my third year in—and a Diploma year at that—I feel like a real writer, no longer an imposter! (That was 2005, and I’d just been diagnosed as sensitive to chemicals. I soon found that writing and social isolation compliment each other like a pair of thick warm wooly socks in winter!)

The first year at VU, bordered on painful. No not on a chemically sensitive level, on a raw emotional level. Beginning from scratch, hiding the fact that I knew not an iota about grammar, or the correct use of English—my first language. Showing others my writing, my ‘Aussie vernacular’ and my ‘eccentric style’: (all comments scrawled by teachers onto my submitted work) was a form of self-torture, feeling as though I’d ripped out the inner workings of my soul, arranging them out on the page for all to see: an immense form of torment, for I knew they’d all eventually see how dumb (or crazy) I actually was. Surely? Yet, I was soon to find out that many emerging writers feel this exact same way too… And I became less shy.

The Editing class was like drowning, panicking, gulping water, sinking—then learning to swim. Passing that class put me on top of the world: I could do anything. Almost. The thing is: I would never—nowhere under a solstice, or any other moon—have pondered enrolling in this course if I I’d had the foresight to see I’d one day be as chemically sensitive as this! It just wouldn’t be worth it. Asking whole classes full of students to not wear perfume, or spray deodorants—to please, please only use roll-ons—is nerve wrecking at the best of times, but with a few deep breaths, a brave face and twenty or so copies of a well thought-out, sincere letter, asking my fellow students for their help in accommodating my need to breathe the air without getting sick, is (or was) an achievable task! And with the support of empathetic teachers, an understanding Coordinator (who suggested the idea of writing the letter in the first place, and then guiding me in penning it), and most essentially, the support and resources of VU Disability Services (VUDS), a Disability Liaison Officer (DLO), and the Disability Liaison Unit (DLU), I’ve had an amazing run. And for when times got rough, I’ve had my mask. (*And—of late—a damn funky air purifier (Blue Air) in the classroom.)

But this damn mould exposure in my home, compounded with whatever else is going on with my body, and upper respiratory tract (eyes, sinus, nose and breathing) has left me with pain and inflammation with the inhalation of all smells—natural or chemical. So the mask has been essential for being able to attend classes. (Where once breathing in air saturated with strong solvents, petro-chemical, or/and artificial fragrances-type volatile organic compounds (VOCs) caused symptoms, nowadays just breathing is painful, because the symptoms—the pain pulsating out from behind my face is my constant companion—and it mocks me with the realisation that I’m just asking for more of this if I continue going into VU: my beloved classes, which have given me this addictively rich internal world, and the audacity to feel like an intelligent being, yet, moronically, they’re just a wrecking ball swinging towards my health!

I’ve worn this mask over my face, protecting my airways, for most of the classes this year. And I can no longer sense or smell if someone is wearing something that may harm me, enabling me to move away, or assert myself and ask them to **please not to wear it in the future (like I have in other classes). This has left me with two options: assume everyone is wearing ‘sprays containing solvents, fragrances and petrochemicals’ and steer clear of them (which means sit by myself, on the other side of the room), or visualise everyone being ‘fragrance free’, which, in some ways is a stupid-head-in-the-sand-approach, but it actually works for me. That is of course, until I get sick from the actual fragrance, have to leave class and go home… You see, visualising them being fragrance free works on a mental level because I can’t actually control if they are wearing it or not; I can ask; I can remind; and I can leave if I find out, eventually, that they are wearing it, but I can’t control them, nor can I spend my valuable class time thinking, wondering if they are wearing it or not. So my best chance, I figured, was to go in and act is if they were all FF, hope for the best, and get on with the reason for being there. And this worked for a time, and I still got high grades. Sometimes, if it’s just a mild headache, some sinus pain, I can switch of to it. Continue with my work. But just that act has been detrimental to my health… In this case, positive thinking has been an idiotic attitude to take! Look where it has got me?

Yes, passive and unassertive was me.

You see, the first year, 2010, it was a rare day where I had to take my mask out from under my scarf (or out my bag) and put it on. I felt like such a weirdo wearing it, that I’d do anything to avoid it, even if it meant confronting another student or complaining to the coordinator about a student’s fragrance! One time someone forgot to not wear it, and when I asked them not to, we got into the discussion of it being their right. I’m not good at this type of discussion–yet. (I guess I need more practice/I guess I’m going to get more practice.) And I find it hard to be diplomatic and calm and full of hard-hitting truthful facts about health and safety and disability rights and human rights; and iI find it hard to not get upset because I’m having a painful time breathing through my nose, and I’d rather just go somewhere where there is fresh air. Our teacher for that class took us all outside for it. And later, that student and I became friends; and thankfully, they understood. There were other times too where other students forgot to ‘not’ wear fragrance—and when it turned out to be one of those heady-synthetic-musky-designer types of perfume, or Lynx or Rexona spray deodorant, I told them it was making me ill and that it’s a **health and safety issue to continue wearing it if it’s affecting my health; I’d then put my mask on, and then, to my surprise, every single student remembered and helped me! (I also had a teacher say to the students many times: “We don’t wear perfumes here. It effects Miche’s health!) GRATITUDE is the only way I can describe my feelings towards those students (and teachers). Sometimes, in Novel B, I’d tear up, realising a group of fifteen or so students had gone to the trouble to be fragrance free. I put my everything into those classes, my workshopping, my contributions to the other students work.I spoke up. I said what was on my mind, even though I was sure it might be of no value. I surpassed my own expectations; I earned high distinctions, me, the woman who grew up believing she was dumb, stupid… listening to my elders.

The second year, 2011, half way through and hit by exposure to mould spores—and the dampness in my house—sometimes I needed my mask. And, after explaining my worsening symptoms, the students in those classes took extra care also. (I’m was so grateful for this too.)

But 2012 has worn my health down. I can’t believe it: it’s just three classes, equalling twelve-fifteen hours each week. How can I possibly struggle with that? It’s not the same. I don’t have the energy to take on a whole group of people. I feel that I’m on my own. (I have support from VUDS, but it’s like no-one is on the same page.) Yes, I gave the students the letter. But each week when I get up half way through or before the class finishes, and I say I’m going home, and that there is something strong effecting me, and that I feel sick from it, I’m met with a wall of silence. Or worse, someone will say: “I can’t smell anything.” (When I’m ill from a chemical that has an odour, whether I can smell it or not, and I complain about it, those are not the words I want to hear. I think over the years they now equate to: “It’s not my responsibly.” Or, “I don’t care.” Or worse,”I can’t smell it, I don’t think that’s what’s effecting you. Or I can’t smell it, which means it’s not there [said with a blank look on their face].

In theory: If I could just suck it up, get sick, go home, recover, and then go back to classes, then I’d be closer to owning this Diploma. Next year would be the last year. And me—the kid who flunked out at fourteen, lived on the streets, fucked up, and then went on to earn a masters degree, majoring in fucking up within immense proportions—I would have an actual Diploma in PWE! I’ve come so far, am I going to let my dreams just go?

My dreams or my health? I ask myself…

In practice: It’s like this:

Mondays: 9 am – 1 pm, Myths and Symbols (loving this class’s content—not hacking the air quality in the building, or the room. A cornucopia of hair products (shampoos, hopefully not hairsprays), washing powders, and I’m not sure what else is in the class (hopefully, not deodorants), these all float about ready to be filtered by the BlueAir purifier, supplied by Victoria University Disability Service (VUDS). This helped the air quality—at first.

I can’t believe how much everything affects me lately; the deodorants out in the hall zap the tears from my eyes, leaving my lids to scape my eyeballs as I blink; my mouth goes dry, leading my throat to follow while, in my chest, congestion settles in its frog-like way; and an aching tightness sprouting from my temples across my forehead, warns me that it won’t be long before a fog descends across my thoughts, making me a vague shell of myself: all of this before I even enter the classroom. I know I’m about to be rendered mute. It always happens. This. Whole. Year. 2012.

In class, I am the door police, I ask (perhaps too abruptly), for people to keep the door shut after they arrive in the mornings, and during our break, because what’s the point of letting all that outside air of uncontrolled, sprayed on fragrance, solvents, petrochemicals and hydrocarbons into this filtered airspace already containing 16 – 20 people? (Whom I’ve asked to go fragrance free.) Lately, I wonder if it’s coming from the students in my class, I can’t tell anymore because to be able to do this, I must lift my mask and breath it in: it’s impossible to smell/detect it without breathing it in—bringing on symptoms. Once, I told the teacher I was going home because something was making me ill. All she said were those words I hate so much: “I can’t smell anything.” I felt like… like… I have no words for it. Not that I can express now, because I need to stay strong.

At other times, I’m so sick, my thoughts are hijacked by being ill, and the idea or the possibility on what made me sick. I become paranoid and think: are people wearing fragrances and spray deodorants? Because this year, for the first time, there is an air purifier in the class, and, perhaps, they think it will clean the air and then it’s okay for them to wear it? Or maybe they see me in my mask, and think that protects me from their sprays?

(This year, Poetry class was much better, except for this one class where I could smell fragrance on a student, and I didn’t say anything because I was sure it was residue fragrance (worn by that person at another time, while wearing the same clothes). Then there was the time with the cleaners at the school, this was one of the deciding factors in me wanting to retreat. Or quit even. (I won’t blog about this at this time, but I may later.))

Wearing a mask is like wearing a blindfold over my olfactory senses; it’s a double edged sword, on one side, like I said, I keep a positive frame of mind by visualising all the students being fragrance free; head in the sand, I know, but frankly, I don’t want to spend valuable class time speculating if they are wearing ‘stuff’ or not (Trying to control others, whom I have no control over, is a futile exercise: I’ve asked them; I’ve given them the letter, explaining my condition, and all that’s left is their good will. The other students, in the other classes helped me, and if this lot won’t, it must be my own fault because on the off-chance some of them forgot and wore sprays into the class, and then I didn’t say anything, or complain about it, then right there, by not saying anything, I’ve, in effect, set the boundary that ‘it’s okay’ and ‘it’ mustn’t affect me. And they’re probably thinking: ‘My product doesn’t affect her.’), but on the other side of this sword, this olfactory blindfold is my undoing because when I’m sitting in amongst these chemicals, I don’t know until I either get sick, or, 1 ½ hours later when I go outside for my break, take off my mask, and breath in the aromatic solvent chemicals, coming from my clothes and hair: sickness overwhelms me; and my thoughts are overtaken with analysing the situation once again: Did the  chemical fumes come from the class or from walking in the hall to the class? Did they waft into the class and adhere to my clothes from out in the hall? If I go back in to the class and stand up front and ask the students, will they tell me? Or will there just be that ‘group mentality’ wall of silence that I’ve been listening to all semester? Or, is it that I have become more sensitive, and, perhaps, it’s just the chemicals seeming to be stronger because they’re affecting me more than they used to? Or is someone disregarding my health because they think I’m a pedantic fusspot who doesn’t like smells? I mean, isn’t this ridiculous that this could happen: chemicals sticking to my clothes, making me sick?

Won’t they think I’m just some crazy chemophobe if I say something?

~

As usual, self-doubt swallows my self-advocacy whole. Silence… My silence. Their silence.

The rubber band feeling around my forehead tightens; a fog descends over my ability to string thoughts together coherently. No longer am I able to sit up straight. And I know that if I speak, it won’t be coherantly. That’s it, I have to know because it’s better to go home early, than sit in the class until ‘it’ hits me—disabling me. My brain. My thoughts. I can’t take another few days without coherent thinking; or with disjointed thoughts, unable to catch my thoughts (Or string them together); unable to think even the most basic task through: the foreboding of these worry-ridden seeds plant themselves amongst my concerns. Impediments to my learning. I lift my mask slightly; the smell is so so strong. Can’t identify it. Washing powders sting my dry eyes. Definitely shampoos, or is it hairspray? I can taste the hair products nonetheless. I go out in the hall. Repeat the process of lifting my mask. I’m hit. Solvents rush to my head, making me dizzy, sucking the energy from my body. Now, I can taste the fragrance chemicals too. I feel as if someone has sprayed some Lynx into my mouth. I shake my head, blow air out my nose, trying to expel the smell of artificial musk and spice from my nostrils, feeling it cake up in my throat and under my eyelids.

I’m officially an idiot, standing in the hall, sniffing the very thing I’m trying to avoid. Sniffing it so I can find out ‘where’ it is so that I can avoid it. Sniffing it causes the molecules to sting my eyes. Yes, I am an Idiot. I go back in, stupid in the knowledge that although I can smell it in the class, it’s nowhere as strong in the classroom so therefor, by my stupid reasoning, it may not be coming from the class or the people in it. Or so it seems, how can I be sure anymore?

I sit down back in class, my thoughts wander; I try to focus, fading in and out on what is being said…

It’s time to go. I excuse myself early for our break, and head out to the car. Leaving my mask on until I get there. Safe inside, I take it off, sniff my clothes: they reek of scents, shampoos, washing powders, deodorants and actual perfume. I rest my head back on the seat, check for cars or people before opening the door: cool air soothes my senses; yet the content of the scents irritate them dually. My energy is zapped, I’m tired, and my chest is tight: the winging inside my head won’t stop. I try to drink from my thermos of green tea, inhaling the steam, praying for sinus pain relief. My nostrils are stinging and burning; it’s no bloody use. I put the cup back down into the car’s cup holder. Even the grease and petrol fumes from the car are a potently strong, and adding to the pain…

I go back to class and plan my escape. What’s the point in this? Why am I here? I think about this blog—the Labyrinth of Chemical Sensitivities—and my passion for writing about all things MCS, and EI, and sharing my tales about blazing my way out of the labyrinth. I’m supposed to be writing my novel, tackling homelessness and all things under the umbrella of disadvantage in the Western suburbs, but no, all I can think about is my situation, and how, if I tell the world about it, I can help others, thus helping myself…

It’s time to retreat for a while… But I don’t want to walk away from my dream. I just want to go to class like the other students…

(Stay tuned, it’s now 2013, six months after I wrote that post. The school year is nearly on us: I have a plan. It’s massive. I have support. I feel supported. I can do this; it’s easy. And I will stay strong, and make it through this, cause it’s just another tunnel out of the Labyrinth of Chemical Sensitivities… leading towards my future. Yes, I’m at it with the positive thinking once again.)

(freeimages.co.uk )

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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