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.
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.
“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.
🙂
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.
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:
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 says
Hi ya, you are so right. However, I truly believe girls and women would not end up here if we, as a society, had the proper safeguards in place: you know the guy who raped then killed Jill Meagher had been to court over the rape of four street sex-workers? Luckily, in Victoria, women who are working as S/Ws can go to the police if they are attacked; and because of that, that murderer had an active map portraying recidivism (sorry, learnt a new word in class the other day! 🙂 and therefore had the form proving he was not fit to be out in society. Alas, he was out, and many women had to suffer, including Jill. My point: these women are at the mercy of societies’ failings every way, everyday. I think the aim of the Gatehouse is to help women who are in that situation, and thankfully, many do go there to get assistance so they can make changes to their lives. Others just go there to get assistance, or a hand out: if we keep giving it to them; if they keep seeing the ‘good’ in strangers, instead of just the bad, then they may learn to trust enough to allow the people at the gatehouse (or anyone) to help them. No-one should have to do that just so they can eat, pay rent, feed children… buy drugs–or worse, because they think that’s all they are capable of…
♥
MCS Gal says
It must feel liberating to attend school and know you won’t go home feeling sick because you have options. There are chemically sensitive people who will be able to get an education because of your diligence in educating the people at the university.
Michellina Van Loder says
Yes, yes it is. And then I laugh in irony when I get ill from other activities: driving the car, visiting a relative or them visiting me. This year I have around 3-4 days a week where I’m not ill. Or I may have an exposure that takes a couple of hours to recover from but I’m not constantly being bombarded with illness on top of illness. I pray this keeps up… Ha, ha, I just wish there were CS people in my class (not that I wish my class members to get sick, just a bit more normalisation to the condition itself). 🙂
twoteacups says
Wow, Michellina what a great post. I have so many feelings after reading it! You have no idea how immensely helpful it is for you to be sharing your MCS experiences with us. Every time I read your posts I feel less overwhelmed by my sensitivities because I know that it is possible to work through them and there are people out there who are willing to co-operate. Very uplifting 🙂
It’s great to hear that the school is monitoring the situation for you so that you can concentrate on being a student. I can relate 100% to the feeling of having to figure out a smell before I get a reaction. Is it chemical? Is it natural? Is it causing an allergic/physical reaction? Sometimes I’d rather just exit the situation because dealing with the reaction sucks, and it also means I have to confront someone if the smell is a problem. I hate hate hate confrontation. So it’s really good the school is intervening. Less stress for you!
The story of your (ex) best friend is heart breaking. I can relate. My experience was with family members and it is truly the worst. It’s frustrating, painful, it shakes you.
I think friendships for those of us with MCS is a longer journey. I couldn’t just go up to someone and strike up a conversation because once I approach them they might be saturated in perfume. How do you make them aware of your illness? If they do know, and don’t change, that’s one less person to get to know. If they do change products for you and you end up not “clicking” then you have to convince another person to change? On and on it goes…
Your friend Pat sounds like a gem. The story you told of them made me a little teary-eyed. Really. After losing many friendships it must have felt so great to find someone who really cares. The fake flowers are just so perfect. What a lovely idea.
Lindy says
Thank you Michellina for all the news, and I am so glad that all is going so well at VU for you.
Your surely have been lucky to meet and be able to mingle with these angels.
I know how bad it feels to lose friendships as well. And it’s all due to MCS and the friend not being able to cope. I think we become an embarrassment, or the threat that something may happen to cause them embarrassment. It is sad,but some people just don’t want to be helpful,and they do not realize what a massive chain of painful events they can put into action.We have to again rise, ill and somewhat heartbroken to face an uncertain future.
The ignorants you speak of in this blog may one day rue the day that they went back to overloading themselves with such noxious chemical fragances. Some of us never used very much/many of these toxic products to begin with, but still became MCS.
I keep my money in a ziplock bag too, after a new facebook friend suggested it.
The battle for me continues. I hope you are having a lovely day, and I wish you continued success with your writing. 🙂