I have been diagnosed as having a medical disability in 2019, when my fibromyalgia was diagnosed. For those who aren't familiar, it's like having Chronic Fatigue with daily pain. So every day you're exhausted and in pain.
My whole life changed. I went from being a yoga loving, fit, healthy vegan, that socialised and had rich friendship groups ... to spending most weekends horizontal resting to try and gather enough energy for the working week ahead. I stopped being a vegan, I stopped going to yoga, my friendships withered and some broke all together. And internally, who I thought I was and wanted to be was heavily tested. I developed an eating disorder, overeating as a comfort and pain-number. I broke up with the man I was dating and cancelled so many first and second dates that I end up giving up on dating and romance. However, owning that I was a person with a disability or being disabled was a long process. My family hated if I used the terms and would argue with me saying I wasn't disabled. The word lazy was thrown out instead. So, from 2019-2022 I didn't claim publicly I was a person with a disability, I didn't share it in job interviews or put it on my social media accounts. In 2022, I started identifying as a person with a disability and talking more openly about my fibromyalgia with friends and family. But it was listening to a woman with a similar medical disability share her reasons for publicly claiming being disabled as part of her identity, to help normalise it and let go of feelings of shame, that inspired me. One of the excuses was the professional image - what would be the cost of publicly claiming I had a disability. The research shows there are biases, conscious or unconscious, for people identifying as disabled to be discriminated against with receive job offers, promotions and opportunities. I've witnessed it and had some life experiences that mirror the research around this. In the end, I decided any organisation that would discriminate against me for identifying as a person with a disability is NOT an organisation I want to be associated with. And so, in early 2023, I changed my bio on Instagram to identify as a person with a disability. The sensation of honouring this part of myself was empowering. It felt like an important part of being authentically me in this world where being in the margins of 'normal' is the aspiration. Where being outside the normal margins of what is acceptable by society, means you don't belong, and you are punished for your non-conformity. My family still doesn't accept that I'm not the Penelope they grew up with and knew, that I am a person with a disability and have different limitations on what I can and can't do. However, I accept that I am a person with a disability and that feels pretty darn good.
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Everyone’s having different and changing experiences of Covid-19; no one is or will be untouched by it. I’ve been watching the light and the dark play out. For me, the darkness is mostly external – the media, the food fights, the hoarding, the fear, death and worry. My motto has been: be aware, prevent and prepare. This has helped me manage my anxiety and kept it to a low-medium frequency. Internally, I’ve been feeling more positive than I have for a while and it’s nothing to do with Covid-19. I feel like my Fibromyalgia may be going into remission – I have a doctor’s appointment via phone to discuss this week. I can’t tell you how light and happy I’m feeling. I honestly haven’t felt physically this good in years and years. I also ended a job a week ago that was affecting my mental health and contributing to a negative outlook. And even though it was the worst time to finish one job and start a new one, I was so happy to finish my previous role that I wasn’t worried about job security. I was aware that my new might ask me not to start or to terminate my employment given the economic conditions and constraints occurring. So I had formulated my Plan B if my life went down the toilet. Luckily, now I’m working for a wonderful University (I’m in love with it to be quite honest). Within the first hour of starting, my boss was reassuring me, without me asking, that my role was secure with them. The University had committed to all their staff, casuals included, that no one would lose their jobs due to Covid-19 or what happened in Australia post Covid-19. My boss’s boss introduced himself the same day and had a very similar conversation with me. And I have continually reassured that the University has their staff and student’s wellbeing first and foremost with all decisions. So my mental health had improved, my work situation was secure and my actual health was the best that it had been in three years. I suddenly had natural, positive energy – and it was really wonderful but I had forgotten how good that feels. Living with Fibromyalgia for the last three years has sucked as y’all know. Everything idea, desire, action was weighed up and mostly discarded due to a lack of energy or the real consequences of pain from doing the thing. I felt like I was minus energy and all I was trying to do was get back to the baseline. So you can imagine my surprise when a creative idea popped in my head. The beginning of Write With You. I weighed the idea and realised – I could actually do it. I had the energy, the time (on weekends or before and after work) and the financial resources to make it happen. The seed was actually planted a year ago, after a day at the zoo with my niece and two nephews when a discussion about whether fairies existed began. The two older ones said fairies didn’t exist and the youngest, Toby, defending fairies and magic passionately. He turned to me and asked me if fairies existed. I didn’t want to lie … but I couldn’t take magic, imagination and fairies away from him. “Of course.” I answered. “Your granny had a fairy as a friend once.” I said. “Mary the Fairy.” So the stories of Naughty Nancy, their Granny, and her friend Mary the Fairy began. It was always a collaborative story-telling method. I’d ask kids for ideas or what they thought happened next or what did they want to hear about and then between Granny and myself we’d co-tell a story about it. Seeing all the posts about my friends home-schooling their children, their challenges, fears and worry - my heart wanted to help in someway. And the idea of Write With You was born. The project idea is to work with a family every fortnight to collaborate with them on a Naughty Nancy Story, which would then become a free eBook for anyone to read. Secondly, it would be a place promoting fun resources and activities for children at home. I first thought I could super-woman it and do it all myself, which is always my first modus operandi. I started researching how to e-publish a Children’s book and downloaded two different options. There was no way to illustrate the two main characters though. And Google said I needed to hire a freelance graphic artist, illustrator or cartoonist. I was happy to pay for an artist, to support the arts in this time, but had a small budget that I could afford. As a love project, I knew I needed to be careful with financial resourcing as it was going to be an ongoing project possibly from 1-6 months. So I needed to able to afford illustrations for multiple books and an author who would work with me on a budget. So trusting in Google, I posted ads about the project on Air-tasker, Upworthy, Fiverr, and then freelance.com. I chatted with many artists and most weren’t interested in the project only the money. I started to become despondent and feel like it was going to another abandoned project or idea of mine. My history of a writer is to fail before publication occurs and so when it started getting difficult it triggered these feelings and memories of failure. The last person I talked to was Laura and I was engaged but not enthusiastic only because I’d been so enthusiastic with other artists and only been let down. We chatted for a while and in light strokes about the book not the project. And she said she wanted to take some time and draw Naughty Nancy. We said goodnight and said we’d chat the next day. I stopped to meditate on the project. The buzz of potentiality had me wired all day and I hadn’t stopped to check in. I asked that if this project was coming out of self-interest or ego for me to let it go. I asked if it was coming from the collective unconscious, if children out there wanted this project to come to life to help make it so. I woke up and had the first image of Naughty Nancy waiting for me. And she was perfect! My heart started racing. I felt like it was a sign that this project was actually meant to happen. My enthusiasm doubled down. I gushed about how much I loved the Naughty Nancy image and then got real. I sent a long message about the project, why, my nieces and nephews, and I wrote from my heart. Being vulnerable led to Laura speaking openly in return. She was a mother of a gorgeous five-year-old girl and had the mindset that Covid-19 and staying home with their parents could be the best part of their childhood. “All they want is their parents to be present. To be with us.” She wrote. We knew we had an opportunity to be apart of it. To help lighten the load that parents would be carrying. And to be right here with them. Laura had always wanted to illustrate a Children’s book and I had always wanted to be a published author and so this project had a possibility of achieving both our individual dreams. And doing some good in the world. We agreed on timeframes, payment and committed to the project. Next, I called one of my favourite humans in the world – marketing guru Jenny for help. She quickly volunteered her expertise and energy to help launch the project. So now we’re full steam ahead and I’m so happy about all the possibilities for supporting families during this time. My heart is overflowing. Watch this space to watch this project come alive J "...staying home with their parents could be the best part of their childhood" Laura M. The lead up to the New Year has been an outbreak of resolutions, intentions and gratitude juxtaposed against the bushfires devastating Australia. The dichotomy between the two has been jarring and I have been left in a liminal space of contemplation of the connection between the two. We all grieve as we watch the bushfires decimate homes, towns and land. Some have linked it to climate change but very few to a personal response to climate change. Denial of the need to change our carbon emissions comes from the very top, from our Prime Minister Scott Morrison. Morrison has argued that at just 1.3% of global emissions that Australia couldn’t have done anything to change the outcome of bushfires this season. He doesn’t say that it’s not only the current drought and bushfire season that we should be thinking of but the future of Australia and the world when making decisions around our contribution to global emissions. Morrison also ignores that Australia’s population is 0.3% of the global total, making Australia per capita a serious offender of emissions. This denial isn’t just Scott Morrison’s. It is ingrained in Australian community as our emissions only continued to rise in 2019 with no end in sight. But if the change we need isn’t coming from our Government then the only way to lower our emissions is to individually change the way we live and embrace climate change lifestyles. It’s easy to say that, to call for everyone to change the way they live, to eat less meat and dairy, to drive less and take fewer flights, and to choose to pay for renewable energy. It’s harder to actually do it. I used to live a low impact climate change lifestyle. It all started around 2014 when I began a Climate change PhD as my form of activism, I joined 350.org and became a vegan and led a nearly zero plastic waste lifestyle to embed my ethics in the way I lived life. And I was a passionate, zealous advocate for a few years until Fibromyalgia. Pain, fatigue and despair that my choices didn’t matter and weren’t having an impact slowly changed everything. I gave up my PhD. I gave up my vegan values. I gave up my climate change novel. And that’s the place I currently sit in. Someone who knows better but makes the quicker, easier choice that doesn’t include climate change in the equation of decision-making. Starting a new year gives us the opportunity to reflect on our choices, values, goals and future. In Australia, we have also been shown climate change in action. After contemplating what’s occurring in the external world around me and my internal world, I commit in this new decade and beyond to lowering my own climate change contribution via eating less dairy, using more public transport and returning to a nearly plastic-free lifestyle. As Barack Obama beautifully stated “Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change that we seek.” In this new decade, let us be the change that our Earth needs. . “Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change that we seek.” Everything is fucked are probably the three truest words for someone living with chronic pain or illness. And that doesn’t changes, just the level of how fucked things are changes. The question is, does chronic pain offer a different philosophical outlook on the subject of pain and happiness?
Chronic pain compromises every area of a person’s life. Decisions are not made in the pursuit of happiness but in the minimization of pain. Pain engulfs identity, to the point that for some they define themselves exclusively in terms of disease, symptoms and treatment. Pain becomes the universal constant. I have a coffee, I’m in pain. I walk to work, I’m in pain. I make love to my boyfriend and I’m in pain. Pain is never normalized, it can be escaped momentarily through sleep, pain killers, and the distraction of TV, meditation or creative pursuits but as soon as you return to your body and consciousness – your old friend Pain shows up waving its hand, saying, “I’m still here.” Pain is the daily-lived experience. When I was first diagnosed with Fibromyalgia, I had a Pollyanna outlook: I’d read Louise Hay’s You can heal your life, I had a friend who’d healed herself of bowel cancer through Reiki and I saw a naturopath who made me promise not to take pain killers or prescription drugs as if they were cocaine and were going to fuck my shit up. So for eighteen months, I didn’t take any pain medication. My mantra was: Pain is my teacher, I will not avoid it or lessen it. I will learn the lesson it’s here to teach me. I admit it, I was a total hippie and I believed that I was responsible for my pain and by changing the way I thought I could change my experience. It was ego and it kept me in locked in a prison of daily pain and suffering. I did less. My yoga practice vanished and with it a dream of doing my yoga teacher training. My vibrant social life and friendship circles diminished as I kept breaking plans due to pain until I was down to one social occasion a weekend. I gave up my PhD in writing and wrote less. Before this, I would have defined myself as a yogi, a good friend, a writer amongst other things and it felt like pain was stealing these elements of who I was away from me. It took awhile, to realize it also offered me a freedom because being able to do less was to choose quality and realize how ‘busy’ I’d unnecessarily made my life. A sense of self-sufficiency and stronger connection to myself without activity emerged however there was still shitloads of pain everyday. It took eighteen months for pain to erode these beliefs and I went to see an integrative GP who gave me a prescription for painkillers. I had it filled, ignoring my hippie inner voice and I had my first pain free sleep in over eighteen months. Some may see this, as the avoidance of pain but it’s more complex that that for people with chronic pain. It’s not avoidance, but acceptance. When every breath causes pain, when yoga makes you take the next day off work sick, when every movement hurts – you need to minimize the pain by any means necessary. It’s not about the pursuit of happiness, pleasure, desire or self-satisfaction – the choices are about decreasing the pain so you can merely function and be able to exist. For someone in great health, who has worked to have a high level of vitality and fitness it can be really easy to judge or blame the person with chronic pain for their poor health. You just need to be a raw vegan, don’t eat gluten, exercise more, you need to be more active – I’ve had all these solutions thrown at me over the years. Some people want to apply the same formula of their good health onto you, so you’re fixed. Everyone wants your disease or disorder to go away – healthy is the norm. To say, “This is me for life – broken and diseased” can make people extremely uncomfortable. They quietly exit your life as if you have leprosy and it’s contagious. People, in general, don’t want to catch pain. In Everything is F*cked, Manson argues against the pursuit of happiness stating it ‘plunges us head-first toward nihilism and frivolity. It leads us toward childishness, an incessant and intolerant desire for something more, a hole that can never be filled, a thirst that can never be quenched. It is at the root of corruption and addiction, of self-pity and self-destruction.’ (p. 191). Instead, Manson urges us to pursue pain. The danger of this pursuit is pain’s ability to engulf a person, to eradicate their identity until they can only define themselves through their pain. There are just as many psychologists, philosophers and educators who argue for the pursuit of happiness, and often want to carve out pain and negativity or the ‘negativity bias’ as Dr. Rick Hanson says. Prescribing the pursuit of pain or happiness creates a binary system discrediting the value in the other but chronic pain sits in a third philosophical space, pain makes it hard to pursue anything. This is the liminal space where chronic illness can ask a different question. What if instead of pursuing pain or happiness, life is meaningful and there is nothing to pursue? Instead, we just need to become aware and conscious. Pain doesn’t make life meaningful and happiness doesn’t make life meaningful. We make life meaningful. How we choose to see it and how we live our lives. Buddhism teaches us not happiness nor pain is the root of all suffering, but attachment. True freedom is not to be attached to what you experience – whether it be pain, happiness or any other emotion or materialistic possession. It’s our attachment to things or emotions that link to our suffering, which is different from pain. Suffering is what prevents us from feeling positive emotions and connections to that something-more in the universe. Pain may limit the way I exercise, the amount of socializing I’m able to do, my romantic life and my career but it does not limit my impact on the world and on others, which is how I make my life meaningful. Chronic pain is teaching me to let go of my desire to be happy and my desire not to be in pain. It teaches me the power of being present, connected and detached. Everything might be fucked and that’s okay because we’re not fucked. We can still be kind, open-hearted, conscious, loving human beings. Who we are, what we do and how we do it is what makes life meaningful, not being happy or being in pain. And we don’t need to pursue a meaningful life; we are already making meaning everyday. We just need to be aware of the meaning we are making. . “Nothing makes a woman more beautiful than the belief that she is beautiful” Recently, I wrote an article for Natural Beauty Expert Magazine about how to build Inner Confidence that spills over to outer beauty. Here's a snippet of the article and the full link is at the bottom :)
I have a beautiful friend who doesn’t see anything to admire about herself, who genuinely complains about her body, her weight, who has terribly low self-esteem and cannot accept a compliment. She sees a photo of herself, and sees only what is wrong, what is fat, what is wrong and sees nothing to celebrate. I see the same photo and argue, pointing out what is beautiful and offering reassurances which she cannot receive. Unfortunately, she isn’t alone in feeling body-loathing, low confidence and not feeling good enough. Never before have we had so much advertising and marketing telling us what and who we need to look like. As Gloria Steinem says ‘Most women’s magazines simply try to mould women into bigger and better consumers.’ Girls and women are told we need to be ‘improved upon’ that we need external products and treatments to be happy, and fit into the jelly mould of female perfection. The rise of the selfie culture and social media externalises merit and worth, creating an obsession around how we are being perceived and if we are being ‘liked’. Millennials are in particular being affected, with the highest levels of anxiety and depression compared to all other generations. Building esteem and confidence is of vital importance, not only for ourselves; but for our families, friendships, workplaces and communities. The question is how to we build our own confidence, and then allow this to ripple out? See the full article at: https://naturalbeautyexpert.co/the-beauty-of-inner-confidence/ THE ART OF CONFLICT I wrote an article for professional beauty, a little while ago, and since then I've had many conversations with my friends about how to resolve conflict from passive aggressive mother in law's, to turbulent romantic relationships, to issues with family. So, based on my memory of Ken Blanchard's book 'The One Minute Manager' that is the basis for all my conflict resolution that I read many, many moons ago (at least ten years), here is the advice I've been sharing with my friends to help give them the skills, confidence and structure to help them face conflict and WIN!!!
It takes 30 days to make a new habit, so for best results monitor this closely for a month. Give praise when you see the other person respecting your new boundary. If they cross it, have another discussion and re-affirm the boundary. And finally, enjoy the more loving, positive and truthful relationship that you’ve co-created! The full article is here http://professionalbeauty.realviewdigital.com/?iid=150848#folio=112 Much love and light, Penelope |