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?’”

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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.)

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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.

About Michellina van Loder

Comments

  1. twoteacups says:

    I can really relate to this. I’ve felt the same things at my workplace, I thought the same thoughts and it can really get overwhelming (when people don’t co-operate) Furthering my education is something I really want to do but I’ve thought about it over and over about all the struggles I would have to face – asking whole classes of people to switch all their products? Having to deal with people’s selfishness and their control over MY health when I have a right to an education like everyone else…. it sounds like a scary and extremely stressful situation to be in.

    • Michellina Van Loder says:

      Thanks, two teacups :) It helps to know that someone else can relate to this. And I know it can get overwhelming (boy do I know); sometimes it can help to think about the next person who is going to be facing these same people one day, and then it’s not so daunting. If you are in a situation where someone else’s personal care products are making you ill, and then you tell the appropriate person, say your boss, it’s then a matter of OH&S. That’s the law – in theory anyway. In practice, facing a group of people who might get all freaky thinking we don’t like the way they smell (rather than actually suffering health symptoms from the chemicals in their scents) can be really daunting… even more so when ill.

      There are people who will understand. You need to know that, because things are changing for us. There are too many people who get effected by chemicals now, and we can’t just go away, cause we need to live our lives too.

      PS: if you are in Australia, Victoria University have a great reputation for taking this issue seriously. (I wish you could come and join my class!)

    • Michellina Van Loder says:

      I just thought to share how it is I found Victoria University (VU). I knew I wanted to do a Diploma of Professional Writing and Editing (PWE). I’ve always wanted to learn to be a professional writer – as apposed to writing on my own at home – and I know of other people who have this condition, or similar ones, who work from home. I asked someone who works at the Disability Discrimination Legal Service (DDLS), here in Melbourne, Australia, and I was told that VU have an excellent reputation for treating all their students fairly, but more importantly, I was told (without the details of who exactly) that they’d had experience with this, and staff who were understanding of chemical sensitivities (It wasn’t in PWE, but it was within VU). That understanding is like gold. It doesn’t mean that everyone there will be helpful, or even care, but people often follow others. And that’s what you want. You want to be able to run with the pack; and that will only happen if some of the pack are willing to accept you. So rather than just guess, and hope for the best, you could ask your local DDLS, or the equivalent of that type of organisation for your region/area. At least that way, you will feel supported from the start. (Will post more soon. My life as a student at VU is going exceedingly well.)

  2. This is one of the best pieces of writing I’ve seen on this blog. It truly captures what self-advocacy is like, and how difficult a formal education can be for an ill person. You are so brave and strong, and I can’t wait to read more.

    • Michellina Van Loder says:

      Thank you, Rachel. Coming from someone whose self-advocacy AND pro-activism in raising awareness about invisible illness, and someone I so admire, it means a lot to me.

  3. Fragrance chemicals stick and saturate and keep releasing so much more than 2nd or 3rd hand smoke.
    The “gift” that doesn’t want to stop giving…
    Thanks phthalates, but these are gifts I’d rather not bestow upon anyone.
    Power to your plan!
    May it be powerful, beneficial, and successful!

    • Michellina Van Loder says:

      Ah, ha, you have a bit of a slogan going on there Linda. The gift that doesn’t want to stop giving! Thank you, your words mean a lot to me.

  4. Miche

    I can’t wait to hear your plan. I understand your frustration.

  5. Hear you hear you hear you. Ditto ditto ditto.

    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…

Trackbacks

  1. […] of studying, I have my Diploma in Professional Writing and Editing. It’s been a slog that I’ve been documenting along the way, and will post more on later (in the interest of helping others) (and as a reference […]

  2. […] to mine being the human made ones). Her story is deeply saddening, and if I’d read this mid 2012 while going through the anxiety of wondering if I’d still be able to study and continue going […]

  3. […] I was awfully sick, so I had to get myself something for sticking it out (I did not make it through my second semester (at school; I did it at home), and, a whole forest of bonsais couldn’t have got me through […]

  4. […] This time as Chemical Sensitivity (oops, I mean Multiple Chemical Sensitivity) Week rolled around, unlike last year, where my head was hidden deep in the scented kitty litter tray of the fragrance embroilment, this time I’m holding my head up as I feel like a valued member of VU. Because I am. I feel the same as any other student; and I feel like most of the other students (and staff) understand, and if they don’t, well, these signs and the ‘fragrance free culture’ surrounding them, support me and the staff who are supporting me, in every way, everyday. You know? It’s like, this is just what we do. It’s normal. And you know what, I keep meeting people, around VU, who tell me that they too have sensitivities to chemicals. A few of these people report that it’s fragrance that they have problems with but they don’t want to complain about it because they don’t want to offend people. They don’t want to complain. I guess that’s what I’m for; to do it for them! (I have a series of posts coming up about this experience in the next week or so. It’s quite long, as are most posts that run deep with emotion, so it will be in seven parts. It’s a continuation of the post, When is is Time to Retreat? Part 1.) […]

  5. […] time around: I’m better at it. I’m like a soldier: I know when to go into battle, and I know when to retreat. I’m less tolerant of people I love, passing over my needs. And I’ve noticed: most […]

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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