(Warning, this post touches on the topics of suicide, family loss and survival.)
Multiple Chemical Sensitivity (MCS) is a condition where the sufferer’s health is impacted on by small doses of chemicals not normally problematic for most people—well, not until some of those people become chemically sensitive themselves, of course. MCS can be bought on by one large preceding exposure, or by a multitude of long-term small exposures. My symptoms—all the upper respiratory ones—began after I accidently inhaled swimming pool chlorine while attending to our pool. I didn’t know what chemical sensitivities even where, let alone what Multiple Chemical Sensitivity (MCS) was.
If someone had tried to explain it to me, I doubt I could have grasped the concept—especially in regards to changing my own behaviour using chemicals: particularly fragrances, cigarettes and solvents used in the application of false nails.
Apart from eggs, I had no allergies. I went to the nail salon fortnightly to have acrylic nails applied with solvent-and-toluene based products; I attended hair salon appointments to have sun-kissed highlights applied with bleach-and-ammonia based products; and lovingly spritzed on my latest adored and prized Nina Ricci fragrance, topping it all off by slathering on matching moisturiser. Scents and fragrances were a part of my identity. As were the Marlboro Reds I defiantly smoked while living my wild crazy life exactly how I wished.
There was no warning sign. Because if I didn’t know this could happen, how could there be a sign this could possibly happen to me?
But two years after that chlorine accident, my life, and that of my family’s had changed drastically: symptoms and health problems aside, major lifestyle changes involved throwing out all my fragrance contaminated possessions including all my clothes, books, soft toys from childhood, furnishings and bedding; I lived in a sparsely furnished rental near the sea, sleeping on an organic cotton mattress on the floor; the sound of an Austin Air purifier 24/7 as the soundtrack to my life; and, replacing my make-up, I wore a 3M filter mask over my face to run errands and do all the things that single parents have to do to partake of life while raising children. It wasn’t easy, and given the circumstances I’d been dealt in life, I’m proud of what I managed to do and achieve.
I know I still have that same strength and tenacity lurking somewhere beneath all this exhaustion, sickness, and symptoms that decrease and intensify at the whim of my immune system.
Fast forward, almost a decade to the year I became sick: It was March, 19, 2014, winter time here in Melbourne, when I lost a a significant someone to MCS, and like the winter before that one, my health had taken me deeper into this labyrinth, enclosing me off from the outside world. But leading up to that day, as exhausted, depressed and invalided as I was, it was okay though. I’d been there before, safe in the knowledge that I’d be my own hero, escaping from the labyrinth just like Theseus after slaying the Minotaur.
When that day came, I guess it was just too much for them. They left me a note saying they couldn’t cope with my illness and that we’d both be better off if they left. [This person] had done so much for me over the last decade since they were just seven-years old, when this wretched illness began. But the last three years before this breaking point were especially difficult. One of the most difficult things, apart from the ill health, days spent in bed recovering from exposures, was the guilt at having to stop extended family visits due to fragrances. Enter isolation for both of us. Awful, I know. I stopped driving them everywhere. I drove my car one day a week to Uni, and that was the only day they could go anywhere without having to catch public transport (I live two hours from the city).
Previous to that, there were long-winding arguments over changing clothes before coming into the house (It’s a rule that everyone has to follow; the state of my health won’t negotiate); the PR skills used with fluctuating degrees of failure/success when asking [this person’s] partner and friends not to wear spray deodorants because the solvents adhere to [this person’s] clothing and hair (the reason they needed to change clothes before coming inside); restrictions on where they could go because the house I’m renting only has the one living area that is accessible to sleep in: we were sleeping in the same air space (oh, how many times I woke up gasping for air because solvents had dried out my eyes and airways to a dry crisp). They couldn’t have people over; and if they did manage to secure fragrance-free friendships, they had to suffer the embarrassment (theirs) of having aluminium foil on the floor of our house.
Doomsday arrives: Enter someone whom I thought was a friend: Debbie Ann Ayton. A god-damned-woo-pushing-pseudo-science author who said to [the family member who left and abandoned me] that they’re too young, and shouldn’t have to waste their life taking care of a disabled person with a chronic illness”; and “You need to get out and live your life… Go to parties…” Followed with the ultimate woo statement: “Everything happens for a reason…” And, “The universe wants it this way…” and other comments that have put me off New Age Hippies and Quantum Physics for life.
So [once dearly cherished person] left me. I guess they’re now free to use whatever fragrance chemicals they like? I guess there’s a begrudging feeling of gladness that I don’t have to suffer that type of abuse anymore?
To describe my heart as broken is an understatement. To say my spirit broke and I lost my identity as a loved family member is closer to the point. A break down ensued. As did a suicide attempt. It felt like this damn illness had finally taken everything. Not only have I, over the last ten years, had to change my life and the way I do everything; not only have I had to restrict the things I can do and the places I can go; not only do I have to live a lonely existence in isolation and forgo seeing most people I know because they are coated in chemicals from fragrances and shampoos and conditioners and soaps and car air-freshener vapours and house air-freshener vapours [think Glade, Ambi-Pur!] and washing powders and fabric softeners and the rest—most of which contain unregulated ingredients, many of which are proven to be chemical irritants to human airways—but I also have to place restrictions on those people who I love. I have to place restrictions on every single human being whom I want to spend time with or who wants to spend time with me. How can any relationship flourish under those conditions?
Yes, MCS robbed me of so much but it’s also given me so much more that I’m grateful for (but this post isn’t about that). Never, ever would I choose this life. If I could have a part of my old life (minus the chemical usage), mixed with this life but without the sickness around breathing other people’s chemicals, that!, I would choose!
I’ve found out that there are a handful of people who truly care about me. But the rest? I mean, seriously, who could live under these restrictions unless they cared deeply enough not to use fragrance-based products? And, yes, actually my dog, Bella, doesn’t mind; neither do the boys, my rabbits, Tyrian and Minxie! And my partner, Dan, his mother, and his son, Daniel have turned out to be angels since this happened; but this is it, everyone else has proved to be so bloody uncharitable about it (I’m talking about personal relationships, not school ones, and not professional; but this post isn’t about that either; it’s about the shitty stuff.)
I found out that it’s the one you’d take a bullet for that you wake up one day to find holding the gun.
I’ve found out that just because someone has grown up with your having had MCS, it does not mean that they can cope with the restrictions placed on them as they get older, forming their own identity, especially as they go out into the world with a desire to run with their pack.
I’ve found out that there are a few blessed people who will surprise you and change everything they do (in regards to chemical usage) just so that you can access what you need: friendship, dental appointments, schoolwork. It never fails to surprise me how a little human interaction coupled with compassion and inclusion can feed and lighten the soul! (I cherish these interactions more and more.)
I’ve found out that I need to look at life, the people around me and my own chronic illness with realistic expectations. There’s no room for optimism because, sadly, it’s just a state of self-delusion.
It’s been well over a year now, and I can write about it without my heart tearing in two and bleeding over this page. Anger has receded to be replaced by forgiveness. For why would I want to harbour angry feelings causing me to reflect resentfully on this chronic illness that’s already difficult ? Why would I allow myself to wallow in feelings of despair that MCS has taken away possibly the most precious, meaningful relationship I’ve ever had? Sure, I may have failed at being a successful parent because of my illness; but I won’t fail at rising above that failure.
Before we go, Melissa Kaplan shares with us some thoughts on Coping with Life-Altering Illness:
“You can’t go home when home’s no longer there…
We all go back there, visiting in our minds the life we once had, from time to time, sharing the life we had and the person we used to be with some of the people we now meet. I think sometimes we do it to remind ourselves and try to get others to see that we weren’t always the bumbling idiots we now sometimes feel ourselves to be, whether or not that’s how we appear to others.
It’s like our past life is a building condemned after a disaster – an earthquake, hurricane, tornado, fire, or flood. Instead of tearing the old house down and rebuilding, or taking what can be salvaged and picking up the FEMA check before moving on and starting over again. Instead of making a constructing a new life, we pitch a little tent and camp out in the yard, dreaming about how nice the place used to look, all the great times we had in there. We even drag passersby in to see the shambles and try to describe to them what it used to look like and how happy we were in there in the days before the disaster.
If you are still camped out in your old yard, it’s time to move on. By all means, take what mementos you can find, but it is time to start building new dreams, new memories, new life.
Research has shown that seniors do better when they extend themselves to care about others, doing volunteer work to help people who are in similar or worse straits than they are. So do those who are living with chronic illness.”
Here’s to moving on and upwards!
Find Support: Emerge Australia
The Centre for Creative Healing: Jennifer Lunden: US (Maine) Skype appointments available
Lifeline Australia: Crisis Support
More on Coping with Chronic Illness
Melissa Kaplan’s website: Chronic Neuroimmune Diseases
Linda Sepp: Down is Harder After Up