“There’s lots of people in this world who spend so much time watching their health that they haven’t
the time to enjoy it.”~Josh Billings
Today I read an excerpt from Gina Liano, who features in the Real Housewives of Melbourne. Whilst I typically wouldn’t grant much merit to a woman featuring in such a show, Gina is a successful and established Barrister, is financially independent, a mother of four, and has recovered from Cancer. In an interview promoting her autobiography ‘Fearless’ to the Herald Sun, she was quoted as saying;
“Despite having everything, it didn’t matter because I didn’t have my health,” Liano said. “If you don’t have your health, you don’t have anything. The true measure of success is being healthy and alive.” (www.heraldsun.com.au).
If I were to live by the words of Gina, I would be to living a life of little significance, defined by all that I do not have. I do not have my health. I was born with a chronic, incurable, and life threatening genetic disorder. As I read the piece I remember saying to my Mum “What a load of shit that is. Am I not successful? Do I truly have nothing?”. Of course, it would be easy to blame Gina. But she is merely echoing the sentiments of a society which is placing an increased and fervent importance on health and wellness. And if you don’t make the cut?
The Wellness Industry is a relatively new one, and one which is incredibly pervasive. Once upon a time, the concept of wellness was absent entirely. The biomedical model, society, even alternative health practices focused on disease. You either had it, or you didn’t. There were no shades of grey splayed upon the counter. You sought help when you awoke to discover that your bones ached. Outside of this, you did not see a doctor, a chiropractor or a psychologist.
You just did life.
Now, as a society, we are not content to just do life. This is not a bad thing. Finally we are appreciating the value in grey, in all it’s infinite shades. You may not have a disease, but your body may be slow, your bones tired. We are encouraged to take supplements and vitamins, practice tai chi, see a psychologist to achieve our full potential and meditate. But at some point, we lost the way between practicing wellness, and being defined by the mere fact of whether we had it or not.
“Wellness; The quality or state of being healthy in body and mind, especially as the result of deliberate effort” (dictionary.com) These days, to be a wellness expert, all you need is an iPhone, Instagram, a wordpress account and to write with positive language, accompanied by a perfectly lighted photograph of a smoothie in a mason jar. One can no longer just be a blogger. You must be a wellness coach, a life style coach, a wellness warrior, fitspo or a raw vegan.
I am a blogger, I am a writer. It is what I do. Naturally, I follow other bloggers on Instagram. It is one of the easiest and most engaging way to discover new writers. But it can also be one of the most successful ways in helping me to realise that I, and many other young women living with Chronic Illness, just don’t measure up.
On my Facebook before writing this piece, I asked my female friend’s with Chronic Illness about where they seek information about their health. One friend wrote “…I try to stay clear of Pinterest and Instagram because of condition related self esteem issues”. Finally someone was giving words to all that I could not, or would not say.
Here is the truth of the matter; Most of the time, when you have a Chronic Illness, wellness posts tend to make us feel like shit. Before you slap my hands away from my words, and spit that I do not understand, grant me the gift of viewing the world in a moment as me.
Instagram. There is a perfectly photographed juice consisting of kale, spinach, berries. The caption boasts that it will detox your liver. That it’s the only way to start the day. And then you sit and begin your day with a feed bag pumped through a feeding tube, or a Fortisip choked down, full of calories that the juice proudly remarks that it does not have.
Pinterest. There is the perfectly toned, bronzed belly of a blonde with bleached teeth, a hint of Nike poking from underneath. For, a run is the only way to start the day. Meanwhile, you race to the bathroom and vomit and shit yourself at the same time.
Blog. Drugs are bad for you. Vaccinations are bad for you. Chemo is bad for you. You can recover, and live with wellness, by juicing, detoxing, meditating. There are salt houses, herbs, chakra cleansing and supplements. And with every drug you swallow, every drop of poison that is pumped into your veins, every gasp of oxygen you need, you know that you failed.
I will be judged harshly for this piece, this much I know. Many wellness bloggers and writers claim to be helping people just like me. That they are passionate about health, wellbeing, improving people’s lives. This much I do not doubt. But many also claim to have the ability to cure me, to rewrite my genome, and kiss my Fibrillin better. Belle Gibson, creator of the Whole Pantry, claimed to cure herself of Brain Cancer by eating whole foods. It now appears that her Cancer never was. Jess Ainscough, creator of ‘Wellness Warrior’, just died of Cancer, aged just 30. She had been using the highly controversial ‘Gerson Therapy’ to treat her Cancer. Her partner Tallon Parmenter recently said;
“In true wellness warrior style, we integrated our natural healing regime with the recommended radiation.
“Finally the walls were broken down between conventional and unconventional medicine — I don’t know why as a society we must choose one or the other.
“This was something Jess was looking forward with sharing (with her followers). It was an exciting evolution from her earlier days of feeling that she had to be part of one extreme world or the other.” (www.news.com.au).
Jess was not the first to die from the consequences of alternative treatments, and she will sadly not be the last. And like so many others, she deserved better.
I hate this disease. It is exactly that; A lack of ease. The past week I have ended up in the resuscitation bay in Emergency, and had morphine pumped into me by the minute, rather than the hour. I have had a severe allergic reaction to the ECG pads that I was connected to, resulting in lips to rival Angelina Jolie, and my torso scarred, bleeding and weeping. I have spent the past two days vomiting until even water was a recognised threat, my swollen belly beguiling my infertility. The pain in my rotting joints wakes me by the hour, and I cannot tell night from day. And so it goes.
I am not opposed to wellness. I meditate for an hour every single day. I take four supplements a day, approved by my medical team and pharmacists. I use TENS machines to manage my pain, and go to the Osteopath on a fortnightly basis so that the pain does not steal me away entirely. I practice pilates. Sometimes it helps me to dislocate less. Sometimes it helps me to dislocate more. But I continue it all the same.
But quality of state, quality of body, is a quality that I will never attain. All the deliberate effort, all the intention in my flesh, could not undo the April Fool’s of my DNA. I could listen to some of the Wellness bloggers. I could stop taking medications. I could breathe away the disease. I could forego all traditional treatment. And in doing so, I could measure myself for an oak coffin, having signed my death warrant.
Ultimately, the Wellness Industry for me is not about wellness at all. For me, it is a place of blame. If only I tried harder. If only I juiced more. If only.
I live with if only’s every single day. I would not wish this disease upon the bones of any other, least of all myself. If I could free myself of this, I would. Ironically, following the guidance of Wellness bloggers truly would free me of this disease. Just not in the way that I want.
I will continue to meditate everyday. I will continue to visit the Osteopath, to practice Pilates, to eat a low FODMAP diet, to take supplements and to use essential oils. I will also continue to coat my tongue in the powders of the drugs which were designed to keep me alive, I will continue to allow the doctors to pump my veins filled with all that will prolong my life, and I will continue to allow my flesh to be cut apart by countless scans and radiation.
I have deliberate effort. But that is not enough. I will never be the bronzed, toned beauty sipping from a Mason jar while running along the beach. Tonight I sit in front of the fireplace with my Golden Retriever, talking to a friend. A few hours ago I broke up with my boyfriend. I have vomited all day, and soon I will attempt to stomach enough water to swallow more powdered capsules. I will listen to music and finally my body will allow me to rest, at least for an hour or so.
I don’t have my health. According to many, this would ensure that I don’t have anything. I may not have ‘anything’. But I have enough. And I think that is more than most people can say.