Around the world, we’ve all had a taste of what life is like in lockdown. In Spain, children were not allowed outside for 45 days. Melbourne has gone back into lockdown for the second time. But what would it be like being locked down, confined to one bare room for several years, with minimal human contact?
Australian Amelia Hill suffers from Environmental Illness/Multiple Chemical Sensitivity (EI/MCS), which is essentially an allergy to modern life. Sufferers have hypersensitivity to chemicals in everyday objects as well as the electromagnetic fields from appliances, wiring and wireless internet. Symptoms can include headaches, rashes, asthma, muscle and joint aches, fatigue, memory loss and confusion. It has meant Amelia has had to put her life on hold, and up until her passing, be cared for by her mother. Her positive perspective on life is a lesson to us all.
Here, she shares her incredible story with The Grace Tales.
Talk us through the beginning of your journey when you were 15 years old – being diagnosed with severe Multiple Chemical Sensitivity, Chronic Fatigue Syndrome and Electro Hyper Sensitivity?
When I first became unwell at 15 years of age, I consulted with many doctors. I was told I “probably” had some kind of “post-viral fatigue syndrome” … even though it wasn’t clear if I’d had a viral infection or not. When all my friends were busy at school or having fun on the weekend, I was home in bed too physically weak to do anything. When doctors told me there was nothing they could do for me, my family took me to a homoeopath and I started researching many alternative healing modalities including mind/body medicine, meditation and nutritional therapies. I remember ordering special, gluten-free bread and green powder from the local health food shop … after all, this was 1990 and those things although commonly available these days weren’t around back then!
After 12 months or so of implementing all the practices I was learning, I was strong enough to go back at school part-time. I was so happy and I honestly thought the worst was behind me. But when my health deteriorated again in my early thirties, a US doctor finally diagnosed me with MCS/Multiple Chemical Sensitivity, most likely caused by exposure to insecticides. The house we had moved into a few months prior to me getting sick in my teens, had been treated extensively for termites. This included spray applied directly under and around my bedroom.
Pesticides and insecticides are neurotoxic chemicals which can cause a whole host of complex and wide-reaching health problems (even death) for humans. I have since met many people all over the world who have also developed CFS/Chronic Fatigue Syndrome, MCS and other complex chronic illnesses following exposure.
In 2008, what happened just before your 33rd birthday?
At the time, I was working as a freelance stylist and writer for interior magazines. My health wasn’t great, I was struggling with a lot of fatigue, but I didn’t tell anyone. I wanted more than anything to get on with my life and pursue my career goals. I was in a new relationship too and I had grown tired of being the one who was always managing chronic health problems.
In preparation for a photoshoot, I selected an armful of dried native flowers from the local market, which I sat in a bucket of water in my kitchen. That night I woke up finding it difficult to breathe. I felt horrible and was understandably scared. I pushed myself to get through the photoshoot but I continued to get worse over the next few days and weeks. Later on, it was discovered these flowers had been preserved with chemicals and contained mould spores, most likely engulfing my already sensitive system and tipping my fragile health over the edge.
Your mum became your full-time carer – tell us about your relationship with your mother…
I was incredibly fortunate to grow up knowing my mum loved me unconditionally. But it wasn’t until my health deteriorated so dramatically that my GP suggested I consider a nursing home, and my mum made the decision to sacrifice the final years of her career as a brilliant teacher in order to look after me, did I truly appreciate the depth of her love.
She showed up for me in ways that are nothing short of inspirational. Not only did she wash, dress and feed me when I was at my most frail and sit with me through countless nights, hold my hand and pray over me, her unwavering belief in me and my potential gave me the physical and emotional strength to keep fighting for my future. She was my fiercest advocate and closet friend and the only person who knew my deepest fears and all my biggest dreams. Words alone cannot encapsulate how much I miss her and how grateful I am to have been her daughter and I only hope I can show up in my life with the same strength, dedication, loyalty, wisdom and grace.
Talk us through how you survived living confined to one bare room for several years with minimal human contact?
It’s difficult to describe exactly what it’s like living in a sealed room without human contact or everyday comforts like proper bedding, heating/cooling, books or television etc for years on end. I imagine a prisoner in solitary confinement might understand.
Alone, I could feel my soul ache for life and comfort, hugs and faces… oh how I missed faces! When everything is physically stripped away from the environment, along with the usual routines and everyday distractions, you become acutely aware of every thought you have and every belief you have ever held. What’s most valuable to you becomes crystal clear and who you thought you were crashes to the ground.
How I survived, was to turn to the only place I had left – within. I made a decision to grow through what I was going through as best as I could. I dug deep and discovered more about myself than in all the days that had gone before. I wrote (a lot) and I mediated (even more). I also shared my story in the media to help raise awareness for the illnesses I and many others were suffering with. That was not easy. But I felt a strong responsibility to try and be a voice for those who did not have one. I can say with absolute certainty, we are always stronger and more courageous than we realise. It wasn’t until I was alone in a room fighting for my own life, did I fully understand this firsthand.
What is in your room?
Two years ago I moved into my new home – a low tox ‘eco-cottage’ which I designed featuring chemical-free building materials and is EMF safe too. The interior is pretty bare and minimal because I still react to many things, making it difficult to source furniture and furnishings I tolerate. Also, many healthier choices can be cost-prohibitive for me.
Last year my online friends rallied together and raised funds for an organic mattress, my first proper bed in almost a decade. I’m having trouble tolerating it right now but with more airing time, I hope that I will be able to sleep on it in the near future. I also look forward to the day I can enjoy a warm rug on the tiled floor and sit and eat dinner at an actual dining table. Maybe one day, share a meal with some friends.
I have a desk and chair which overlooks the green trees in the garden… a view I treasure so much and is never wasted on me or taken for granted following my two years sleeping on the bathroom floor with no window I could see out of
What does a typical day look like for you?
My ‘typical’ day has changed dramatically in the last six months. My Mum passed away last year and shortly before, the cornea in my right eye ruptured unexpectedly and I was diagnosed with a rare and extremely painful degenerative eye disease. One of my favourite daily practices for physical and mental health was to sit out in the sunshine every day but now because of the severe light sensitivity I’m experiencing, I’m not able to do that anymore.
I’m unable to read books now either or watch movies because digital screens make my eye symptoms much worse. As a writer, this has been indescribably devastating for me. My ability to express myself in words, process my experiences and work towards my ultimate dream of becoming a published author has been swooshed into smithereens.
My mum was my primary carer, so now the majority of my energy reserves are funnelled into basic self-care tasks like food prep, showering and medical care activities. If I have any leftover resources, I try and do something creative… like filming a short video for my Facebook friends or writing something via voice to text software on my iPhone. Meditation, listening to podcasts in the evening and talking to friends via audio messages are my saving grace.
What do you eat in a day?
Many years ago, I used to cater for weekend yoga retreats and prepare mountains of delicious, healthy meals! I even grew my own wheatgrass and made my own sprouted breads and sugar free treats! But 10 years ago, I began reacting to almost all foods… even the seemingly ‘healthy’ and in an effort to stabilise this, I’ve followed a strict rotation diet for many years.
My daily meals consist of a few different meats and vegetables, fats/oils which are all organic. Much like a modified ‘Keto’ or ‘Gaps’ type diet. Breakfast might be slow-cooked beef, carrots and dripping or turkey, bone broth and three avocados! I love avocados. I have come a long way – once upon a time, I could only eat five foods. The foods I miss the most, are simple things like fresh peaches, a handful of crunchy cashews and a freshly pressed Green juice. I stay hopeful that one day I will enjoy these things again … and wow, what an amazing day that will be.
What are some of the environmental triggers for you or people with your condition? What can’t you do that so many people take for granted?
Environmental triggers that make people with MCS sick include but are not limited to, fragrances and fragranced personal care products like deodorant, shampoo, hairspray, washing powders, air fresheners as well as cleaning chemicals, disinfectants, adhesives, pesticides, printing ink, air pollution, chemicals found in new clothing, bedding and furnishings. Some people will also react to foods, mould and electromagnetic frequencies.
Many of these environmental triggers are potentially harmful to everyone in the community not just those with MCS (1 in 3 Australians report adverse health effects from fragrances like respiratory symptoms, asthma, migraines and fatigue and many common fragrance ingredients are proven carcinogens and hormone disrupters too. 26 fragrance ingredients restricted or banned in the EU are still available here in Australia).
Safe housing can often be very challenging to locate for people with MCS because of the many harmful chemicals found in certain building materials, wall paint, carpet, wrinkle or stain-resistant fabrics, MDF furniture and mould caused by water damage in the home. I know many people who have to sleep outside or in a tent or end up homeless living in their car because living in a house makes them so sick.
There’s a massive undercurrent of inaccessibility and discrimination in regards to the MCS community. There have been some developments in public policy in other parts of the world when it comes to fragrance-free policies for hospitals and workplaces, but Australia is lagging behind. Because of this, it can be very challenging, even completely impossible at times to access public spaces or buildings like hospitals, medical clinics, workplaces, schools, banks, supermarkets, shopping centres even places of worship. Careers end, friendships disappear and some sufferers become incredibly isolated and ostracized. Sometimes for months or years. This is by far one of the most devastating parts of MCS.
What milestones have been significant for you?
Serious illness is a game-changer when it comes to perspective. Nothing else comes close. I vividly remember how I felt sitting outside with the blue sky above my head for the first time after spending over 1000 days inside. Also, how the warm stream of water soothed my sore back muscles the moment I sat in the shower after seven long months of being washed from a bucket of hot water by my bed.
And the time my Mum drove me to the end of the street and I saw other people going about their lives walking the dog and driving to work. I wept uncontrollably because, for a brief moment, I felt connected to the outside world after years of lonely isolation.
It’s so important to look forward in order to move forward, but I have found it’s equally important to never forget how far you’ve come. The deep gratitude you experience in those profound milestone moments changes everything… including what next step you take.
What has your experience taught you about material possessions?
As a one-time magazine stylist and fashion designer, my world used to be filled with beautiful clothes and colourful collectables. I was so inspired by the creativity and aesthetics of the industry I was a part of and my living space was a reflection of this, containing design books and unique mementoes I’d collected during my career meanderings. But when I became ill and reactive to so many things in my environment and had to live 24/7 in a bare room with none of my possessions and no real furniture or furnishings, the contrast to my previous existence was obvious and jarring.
Suddenly, I was alone in a room without any visual reminders of who I once was. I didn’t recognise myself or my life anymore. What I learned about material possessions during that time, was we that fill our homes and our lives with items that not only make us FEEL something eg happiness, inspiration or nostalgia, but items which remind us about who we think we are or who want to become in the future.
Clothes that make us feel confident, a certificate on the wall that makes us feel worthy, cosy soft furnishings that make us feel safe or a car in the driveway to make us feel successful. There’s a desire behind every acquisition and a need we’re looking to have met by every item.
Eventually, all of these material possessions fit together to form an identity. Either real or imagined. But when all those things were suddenly gone for me, and I had no choice but to sit in the void, immersed in the discomfort, emptiness and unfamiliarity of my new world, what I discovered for the very first time … was me. My true identity. The real me. An identity not dependent on external trappings. Not influenced by the opinions of others, by nostalgia for the past or hopes for the future or by the desire for comfort, confidence or prestige.
Even though I’ve had the experience of living without everyday material things, I still love and appreciate beautiful objects and covet the creations out there in the marketplace. Now though, I try not to get distracted or lose sight of what’s most important… who I am deep within me and the relationship with my true identity.
You write that you had “big plans for my life” – how have your plans changed to suit your condition – what are your dreams and plans now?
Creating a strong and defiant vision for my future self is one of the reasons why I’m still alive today. On all the many days I’ve been faced with incredibly difficult situations or have felt like giving up, that vision has provided pure oxygen for my depleted soul and kept me moving forward as best as I can. I don’t know if I will ever achieve those big plans… like having a family of my own, becoming a published author, speaking on stages around the world or walking every inch of Central Park in NYC, but I know I refuse to let go of those precious plans because of my present-day circumstances or because someone else tells me I probably should.
When our lives feel defined by challenges like chronic illness, sometimes the only freedom we have left is the freedom to believe in something that’s bigger than what we see around us. And when we chose to believe in the possibility of a greater future, we are ultimately saying to ourselves “I choose to believe in me”.
What are some of the biggest life-altering lessons you can share?
I have learned so many life-altering lessons on this journey. Lessons about unbelievable bravery and of heartbreaking loss. Lessons about when to surrender and when to fight with everything you have. Lessons about how we are not the circumstances of our life and that we are always so much stronger and more capable than we could ever imagine. One very powerful lesson for me has been … ‘You must do the thing you think you cannot do’.
This lesson can only be fully understood firsthand… by walking through THAT fire, climbing THAT mountain, attempting THAT seemingly impossible thing. Our experiences in life shape what we think is possible for us and our future. So when we decide to reach beyond that boundary, we acquire a level of courage, conviction and indestructible self-belief that not only transforms the way we see the world but our outcomes too.