I’ve been too unwell to blog for some time. A lot has changed since then. This blog has been inspired by the song ‘Love love love’ by Of Monsters and Men. I urge you to listen as you read. I … Continue reading
The nights are long and lonely when disease takes its place in your bed. All lyrics in centred italics are from Meg Myers ‘The Morning After’. I encourage you to listen as you read, it is beautiful.
With love and light,
I couldn’t sleep last night
There were lions and bears tearing you from my side
I couldn’t sleep last night
How you look like my daughter
It’s burnt in my mind
It’s two am. I cannot sleep tonight. I did not sleep last night. Nor the nine calendars before that. As my fingers grope at keys under the light of cheap globes and a lazy moon, the world sleeps. How I envy them, wrapped in the sheets of the genetic lottery, perhaps a gentle fuck before their lashes went to bed. I’ve not a lion. Rather, a bull headed golden retriever snores contentedly upon my twisted, blanched, ten little piggies. She does not blink, for she doesn’t know any better. She’s only one year old after all. If ignorance was bliss, than she inhales continuity, a familiar sob from above. This is good. This is familiar. This is home.
And she sleeps.
The lions pace, taunting, tracing their claws across my skin. This is no Lion King. There will be no songs, no crazed baboon speaking in tongues of Yoda and Buddhism. Pick a piece, any piece. They’ve a favourite of course, like any good butcher does. Hips. Spine. Knees. The pack takes their turn. It is a merciless and longing death. They relish in my gasps, their skin puckers. My pain is their pleasure, and my pleasure is never to be without pain. There will be no gentle fucks tonight.
Sometimes my belly swells. Paralysis, or so they tell me. If I am indulging in a particular depth of sadness, I will picture my daughter within, and stroke my burgeoning belly. It’s never to be of course. The truth still stings, just a little.
And I can’t feel anything the morning after you
And I can’t tell anyone the morning after you
Of course, I can feel the morning after. I feel everything. The burning lungs as I strategically free parachutes of bloodied clots above the plug hole. Last time I stained the sink. As dictated by the seven stages of grief, they choke on shock and denial. No matter how much one readies, the burn of copper remains a shock to the tastebuds, a smack of dirty serum across the tongue. Next comes anger, concaves of calcium screaming in protest. What the fuck do you think you are doing? It would be easier to stay in bed. I’ve never been one for conflict after all. But I must eat. I must bathe. I must study, I must make love, and I must try to just do life. Some days it is a bigger ask than others. My joints threaten, cursing, insults of detriment hurled towards me with every jagged movement, every partial dislocation. I was only trying to butter some toast, I counter.
I bargain, like usual, typically with a God whom I no longer believe in, let alone rely on. ‘Just get me through the day without feeling an overwhelming need to shit my pants, and I’ll be a really, really good person. Not Mother Theresa level good. I like sex too much. But a really good person none the less. Just don’t let me dislocate/haemorrhage/vomit/shit/faint, and I’m all yours Homie G’.
The TV flickers in silence and I flit into stage five with all the ease of a stretch.
Then comes depression and detachment. I detach in the most literal sense, bones slipping from their beds with a gag inducing clunk. I am rumoured to have killed boners with a mere hip dislocation. Sometimes it can be funny. But not today. I need to drive today.
Two scoops of caffeine, four scoops of sugar. This is my permitted daily allowance. Anymore and I am tachycardic. Any less and I am without the hallmark signs of being a fully fledged adult. I curl in my nest, Golden Retriever Mom mug curled in my finger tips. I have even forgiven the Americanisation. I could cry. But I don’t know how to anymore, not unless it’s really bad. So instead I wish to be sad, hunched over a sofa that is freckled with golden retriever hair, with the realisation that yes, this is my life.
I couldn’t sleep last night
You were chasing the birds till the beast caught your eye
I couldn’t sleep last night
How you look like an angel
It’s burnt in my mind
I can’t feel anything the morning after you
I can’t tell anyone the morning after you
And I hope you sleep with a merry gold
I hope you win it this time
And I pray you don’t fear the animals
I’ll save you, I promise this time
If you do not live in my world, understand this; There are no Marigolds. There are no bursts of afternoon, and there are no capes. There will be promises, but they will not be kept. Most of all, there will be no miracles. Marigolds and Miracles are not so different after all. You can plant as many as you want in your Etsy mason jar planters. But you will grow no miracles nonetheless.
What is acceptance? Is it resignation? A celebration? Or a total and utter cluster fuck? Here I am, here’s my shitty life. Make of it what you want. Just don’t shove lemon detox diets down my throat with offers of fairy tale endings and pretty dreams. I suspect that my acceptance is a combination of all quadrants, paint mixed and poured on top of one another until you can no longer recognise what you began with.
Sometimes I fear the animals. Sometimes I am scared, and sometimes I am vulnerable, and sometimes I just want to cry. Sometimes I just don’t want to have them tear my hips apart, necrotic teeth digging into the depths of my resolve. The pain scares me. The vomit scares me. The shit scares me, and most of all, the nights scare me.
I did not sleep last night. I will not sleep tonight. Nor will I tomorrow. You will never know the depths of my contractures beneath the sheets, unless of course you do, because you already live it. And in that case, I do not hope you sleep with a Marigold, and I do not hope that you will win. I will not pray that you fear not the animals, and most of all I will not promise to save you.
Because just quietly, we both know it’s bullshit.
I just hope you get a little rest tonight. We just need a little rest, that’s all. Then we can get up, and do it all over again tomorrow.
It’s worth it, after all.
This is the second blog in a series which I am writing on my experiences with different types of meditation and mindfulness. I will weigh up my experienced pros and cons of each, and explore the potential benefits of them for a person living with serious, chronic, or terminal illness. You can read the first piece in the series, on mindfulness, here.
With love and light xxx
I have a disorder which means, among other things, that I am the human Gumby. I am a near 6 foot vision of elastic limbs and a chronic lack of co-ordination that borders on being classed as a pathology in its own right. I can partially dislocate my sacroiliac joint from sneezing. I once partially dislocated my hip so loudly during sex that the guy lost his boner.
But I digress.
I am too bendy. This means that I cannot practice yoga. Yes, I know. It is an oxymoron to profess to be a blogger, and not practice yoga. More importantly, it is inconceivable that I can have a blog and instagram account, and not blog photos of me contorting myself at days break. Reality is, if I do practice yoga/sneeze/pour a glass of orange juice, a whole lot of people are going to lose their boners. But there is one thing I am really good at (kinda).
My condition causes, amongst other thing (and boner killing properties), excessive and chronic fatigue. During one particularly unwell period of my life, I successfully slept for 22 hours, and I didn’t so much as wet the bed. My family however did think that I had died. I will note that they did not panic or send a rescue party to save me.
Yoga Nidra is defined by the incredibly reliable source that is Wikipedia as “a sleep like state which yogis report to experience during their meditations. Yoga nidra is among the deepest possible states of relaxation while still maintaining full consciousness”. In short? It is a way of meditating in which if you get it right, you fall asleep and have a great sleep. And if you get it right in another way, you feel intense and profound relaxation. Ergo; you cannot fuck it up.
Admittedly, I had to google what a ‘Yogi’ was. Perhaps it is a sign of my age that I thought it was Yogi Bear stretched out on a yoga mat in the smiling bear position. However you wish to label yourself, yoga nidra is something which is possible for anyone of any physical ability. Whether you are an athlete, paralysed, or somewhere in the middle like me, you are able to practice yoga nidra. This means that it is one of the more accessible forms of relaxation, particularly for the disability and illness community.
Yoga Nidra stems from an Indian yoga tradition, and is simply whole body focused relaxation. The underlying theories of Yoga Nidra is that it permits you to become aware of your inner energy forces, or “prana”. This is a little too Yogi Bear for me, and instead I prefer to focus on the scientific properties of the practice.
To practice yoga nidra, you do need to have the ability to hear. This does mean that it is not accessible for people with hearing impairment or deafness. In future pieces I will explore more accessible relaxation practices for people who are hearing impaired. To prepare for Yoga Nidra, you are encouraged to turn your phone off or on silent, and be in a space which is quiet, and where you will not be interrupted. You are instructed to take care of anything which has the potential to be distracting; remembering that you have not set an alarm, or have not closed the window. You will require an audio recording of Yoga Nidra. I will post some of my preferred resources at the end of this post.
There is a specific physical position which is encouraged for Yoga Nidra. If you wish to, and are able to, you are instructed to lie on your back, with your arms away from your body, palms facing upwards. Feet are encouraged to be in line with your hips or shoulders, and your toes falling outwards. Whilst this is the encouraged position for Yoga Nidra, with a physical condition it is not always possible. In my personal circumstances, I am often not able to maintain this position. In my experience, not being able to do so does not reduce the effects of the practice. The overwhelming message of the practice is to be comfortable, whatever that may mean for you.
You are encouraged to close your eyes and listen to the recording. Initially you will focus on your breath, being instructed on taking deep, deliberate breaths. Again, this is not always possible if you have a chronic condition. I have restrictive lung disease and reduced contractility of my heart, so this is again something which I struggle with. But it is more important to be aware of your breath than to control it.
You are then typically guided through a ‘rotation of awareness’. A typical script will go something like ‘Left thumb. Left pointer. Left middle finger. Left ring finger. Left little finger. Left wrist’ and so forth. Your rotation will continue throughout the body, focusing on the hands more often than other parts of the body. You may be encouraged to experience the sensation of lightness, then heaviness, length and then width.
Ultimately, the experience of Yoga Nidra is to be aware of your experience, and to have the ability to feel more pleasurable parts of your body, as opposed to your mind being focused on your pain or discomfort.
More importantly to the science student in me (despite my brother saying that Psychology isn’t a real science), research is demonstrating the positive effects of Yoga Nidra on physiological and mental health. Research into the benefits of mindfulness upon health is an emerging area of focus for science, however early results are highly encouraging.
A 2012 review of Yoga Nidra and it’s therapeutic benefits published in the Journal of Pharmaceutical and Scientific Innovation found that Yoga Nidra benefited many physiological and psychological conditions (Yogitha, 2012). Through systematic review of studies which have investigated the effects of Yoga Nidra, this particular journal article has been able to summarise the benefits found in various conditions. The list and some key points can be found at the end of this piece, as well as the reference.
As always, it is incredibly important to note that Yoga Nidra is not a cure. I practice Yoga Nidra up to four times a week. But no matter how often I practice, I will not cure myself of Marfan Syndrome. It has not significantly improved my quality of life, and it has not meant that I can stop my traditional treatments. I have however been able to reduce how much analgesia I require at night time.
Yoga Nidra does however mean that for an hour a night, a few times a week, I get to experience my body in a way that is impossible for the other 23 hours of the day. I can feel light when my body has left me in chains all day. I can feel the creases in my finger tips rather than the aching deep within my bones. I can feel grounded when all I want to do is faint, my head light and stuffed with cotton wool. For sixty minutes, I get to experience my body in a way which is exciting, pleasurable, confronting, and deeply peaceful.
Yoga Nidra has its faults. It is sadly not accessible for people who are hearing impaired, it can be boring at times, and it can be frightening to try and control your breath if you have lung or heart disease (I have experienced this panic). I now understand that I need to do what works for me and my body. That means no Yoga Nidra pose. It means breathing in a way that my heart and lungs deem fit.
And most of all? I don’t kill any boners.
At all times, consult with your treating healthcare professional about any alternative practices you intend to try. These are only proven correlations, or links, between yoga nidra and benefits to your health. Mostly, yoga nidra is used in conjunction with traditional treatment. There is no proof of causation. You may see your benefits, you may not. But there is no proof to say that yoga nidra will be the reason you saw benefits; just that it could be. I cannot stress this enough. We have seen the danger of enough health bloggers recently. Be safe, always x
Source: Yogitha, 2012.
- Psychiatric Diseases- particularly neurotic and anxiety disorders, in conjunction with traditional treatment
- Psychosomatic Diseases- physical diseases in which mental health plays a significant role
- Problems of children- Maladaptive conditions and hyperactivity
- Drug Addiction- Used in Psychiatric units to reduce tranquilliser dependency. Additionally, suicide preventive technique under strict monitoring.
- Insomnia-Definite results witnessed
- Tobacco, Alcohol Addiction- Reducing tension to reduce reliance on tobacco and alcohol to cope with stressors
- Degenerative Diseases- A very accessible technique for people with severe disabilities
- Pain- Reduces migraine pain through stimulation of the pituitary gland. 81% of participants found pain relief through use of Yoga Nidra.
- Arthritis- Management of chronic arthritis pain
- Pregnancy and Menstrual Problems- To assist ‘natural’ childbirth. Also found to be a successful alternative to drug treatment for chronic period pain.
- Geriatrics- Succesfully used in increasing confidence in elderly people, and assisting their transition to old age psychologically.
- Asthma- Reduction in severity and frequency of attacks, and dependency on medications. Absolutely crucial you continue with your biomedical management of the disease. Yoga Nidra cannot stop an asthma attack. Witnessed improvement in spirometry results.
- Colon Diseases- Some participants cured of Ulcerative Colitis following traditional treatment and yoga nidra. This is a correlation, NOT causation. What does this mean? There is a link. There is no proof it’s the reason for improvement.
- Cancer- Improvement in survival rates of patients using Yoga Nidra in conjunction with Radiotherapy. The relaxation is linked to white blood cells attacking cancer cells. Again, this is a LINK and NOT a proven CAUSE.
- Cardiovascular Disease- Preventetive and management technique in degenerative and ischaemic heart disease. Appears to reduce cardiac strain. Excellent preventative technique for Cardiac Disease in conjunction with other means, by promoting a relaxed lifestyle.
- Hypertension- Numerous clinical trials demonstrating that Yoga Nidra alone, or in addition to traditional treatment, can successfully treat mild to moderate hypertension. Systolic readings reduced by 15-20mmHg and 10mmHG diastolic readings after just three weeks of practice.
- Stress- Symptomatic reduction in first three stages of stress related illness (Alarm stage, Resistance Stage, Exhaustion Stage).
Audio Yoga Nidra I recommend; It can take time to find the style which works for you. I prefer to listen to women, as I find it more calming. You may prefer a male voice, or a different approach. Youtube and Spotify are a gold mine of Yoga Nidra guided audio clips. Have fun, explore, and always, be safe.
Reference: Yogitha, B. (2012). Yoga Nidra and its Therapeutic Applications. Journal of Pharmaceutical and Scientific Innovation, 1(4), 21-25. Retrieved from: jpisonline.com/admin/php/uploads/111_pdf.pdf
All lyrics are from Sia’s song ‘Elastic Heart’. It is covered here by Ale Aguiire. Her voice is beautiful. This is not what living with Marfan Syndrome is like everyday. This is just what it is like for me, in this moment, to live with it. With diagnosis and regular monitoring and treatment, people with Marfan Syndrome can now live up to 70 years of age. You can learn more about Marfan Syndrome here.
With love and light xx
And another one bites the dust
Oh why can I not conquer love?
And I might have thought that we were one
Wanted to fight this war without weapons
Elastic communities are virtual graveyards, tufts of grass clutching at my ankles. The cost of connection is to hold the knowledge that I walk upon the graves of my own alikeness. There is always another tragedy, another anecdote. The story always begins with the knowledge that they were okay, and finishes with the reminder that you now step upon their bones.
‘And they died’.
I want to shove your wartime metaphors down your trachea, and watch you choke. Defence a response to the offence. I am not fighting. If I do not fight, I cannot win, and I cannot lose. It is simpler this way. Kinder, perhaps. I don’t ask for much. I just want to be loved, fucked-up-fibrillin and all.
And I wanted it, I wanted it bad
But there were so many red flags
Now another one bites the dust
Yeah, let’s be clear, I’ll trust no one
I beam, my laughter is raucous. I am Happy Jess. So successful my portrayal, it was been capitalised, and capitalised upon. If I act okay with it, then I am okay with it. And if I am okay with it, you are okay with it.
And if it’s okay, it doesn’t hurt.
But I wanted more than this. Some days my wrists etch their way towards their own flesh, aching to scratch free and clamber towards something better. This is not a life that I would have picked for myself, nor for another, despite any salt that may lay in the wounds between us.
I wanted more. I will likely never tell you exactly what it is that my teeth once dared to grip. It is less shameful this way. What I will tell you is that I wanted more, and that I will never get it.
There were too many red flags. Too much pain and too little fat. My disproportionately long limbs flapped in the wind, a sure sign that the wings of disease would soon take flight. If it is a crime to let the flag touch the ground, they dropped the whole sorry mess in its entirety. It took them too long to diagnose, to understand where my lanky pieces fit. Too much time for disease to progress, and too much opportunity for the genes to render me unable to pull on my own pair of jeans.
You did not break me
I’m still fighting for peace
Some of us have thick skin. Others, like myself, nurse stretchy pieces of cellophane, tearing whenever the world deems it fit. Our hearts are elastic, and that’s what leads us to this whole sorry mess. We stretch, we contort. Sometimes we dissect, our aortas a split peach. And then we rest with the tufts of grass, a silent tear shed for the next one. Will this disease be too sharp for me? Maybe. Maybe the annual ECHO’s, six monthly cardiology appointments, and annual CT’s will be enough to save me. In one palm the scalpels offer me the reassurance that my aorta rests contentedly. My mitral valve is thrashing, bulimic, regurgitating it’s contents back into the left palm of my pulse. But my peach fails to split, and for that I am grateful.
And I will stay up through the night
And let’s be clear, won’t close my eyes
And I know that I can survive
I’ll walk through fire to save my life
This is what you don’t see. You do not see me rocking upon our threadbare carpet, sobbing until I retch, folded unto myself. I am an origami of the hurting variety. You do not see the hours upon which I lay silently weeping into the neck of my Golden Retriever, counting, always counting. Two hours until more meds. One hour. Ten more minutes. All the while reminding myself that I am so fucking pathetic. You see as I joke online about the clumps of blood launching from the depths of my lungs, but you do not know how it tastes.
And I want it, I want my life so bad
I’m doing everything I can
Then another one bites the dust
It’s hard to lose a chosen one
I meditate and I consummate, theory meeting practice. I follow the instructions of physiotherapists, stretching myself in such a way that I will not separate another joint from its socket. I swallow their pretty little pills, and I pee into their yellow lidded labelled cups. I want it more than they, or you, will ever know. I want quality of life in place of vomit and shit spilling from my body in equal measure.
But then another system fucks itself over. I find myself on Facebook stepping upon the life of yet another person who once was just like me. And then I have to get up, go to uni, and try and work out why the fuck I am fighting for a peace that I will likely never know.
These days I do not know why. I am not sad, and I am not depressed.
I am just grieving.
I do not know what my peace will be. I know longer know what I wish for it to be.
Right now I just wish that I had warm hands to pull me from the clutches around my ankles, and hold my spine in their hands until I felt strong enough to take it back. All the while, our golden retriever sleeping at our feet.
It is not all bad, nor sad. It just aches in this moment.
So why do I do it?
I don’t know today. I can only surmise. Maybe it is because I have an assignment due. Maybe it is because earlier I slept upon the shoulders of my Golden Retriever as she took the weight of my world upon her own golden shoulders. Maybe it is because the drugs aren’t working, but my bed is soft, my sheets warm. Maybe it is because I am lucky enough to not have yet joined the earth beneath me. Maybe it is because I owe it to the ones who have.
But now, I must rest.
And tomorrow I will do it all over again.
I have not written a piece like this in a while. Sometimes it’s okay to not be okay with Mother Nature’s intended fate. All lyrics by ‘Villagers’ from their original ‘Nothing Arrived’. It is covered here by Jasmine Kennedy and James Howarth. Their talent is raw, and it is beautiful. I encourage you to listen.
With love and light x
Savannah scatters and the seabird sings
So why should we fear what travel brings?
What were we hoping to get out of this?
Some kind of momentary bliss?
I do not wish to travel far. I will not ask my parents to unfold their mortgage to make an origami of two, so that I may travel afar and anew, although Tumblr tells me that I should expect as much. I will not reach for the petrol clasp, and I will not hunch for a backpack that we know I could never carry. I just wish to move an inch to the left, enough stretch so that I may leave my flesh, if only for a moment. Instead, stethoscopes hang limply around their necks as they pump my flesh full so that I may not stretch so far as to crinkle a single fleck of skin. They do it because I demand it, and I demand it because society demands it of me. You do not allow the bones of a twenty-three year old to expire if they do not need to do as such for another fifty years. Another fifty years of bloody spittle and cracked cartilage, empty excuses for not turning up to life.
What did I hope to get out of this?
A lot more than what I am given.
So instead I bed lovers and escape my flesh by surrendering myself to it entirely.
I waited for Something, and Something died
So I waited for Nothing, and Nothing arrived
It’s our dearest ally, it’s our closest friend
It’s our darkest blackout, it’s our final end
My dear sweet Nothing, let’s start anew
From here on in it’s just me and you
Waited, a past dalliance. I did not wait. I am impatient, heels clicking in white corridors. I am waiting. Waiting for something, something more than what I have been given. Something more than what I am owed. Just as the moon demands nothing of the sun, Mother Nature owes nothing to nobody and no body. It was always going to be when. When I finished High School. When I was accepted into Nursing. When I transferred to Psychology. When I fell in love. When I owned a golden sea cow, all paws and dizzy tail. Something was owed, and something would arrived.
Until something died, and nothing arrived.
It is ironic that the death of something signed my death warrant from nothing sidling into its place. This is not nothing, despite all that I told myself. We knew all along didn’t we? But it’s not nothing.
Nothing is the abandonment of ignorance, and its trysts with bliss. It is the consumption of desperate, gasping breaths as you try to grab tangible, and it’s the quiet kind of sadness that comes with knowing you have an incurable disorder which is going to continue to cripple you, before it finally kills you.
This disease will be my final end, my darkest blackout, my something that will one day arrive and steal me into nothing. Or maybe something, depending on what pretty secrets you like to tell yourself. This disease is not my friend, but its release will be. I beg of you this; do not begrudge me this one last shuddering relief. Judge me if you must, hurl at me demands to be grateful, to ‘fight’, Hallmark card sentiments and bitchy remarks. But allow me the gift of entering nothing unabashed, without the promise of a cure.
I waited for that cure for a long time.
I waited for Something and Something died
So I waited for Nothing, and Nothing arrived
Well I guess it’s over, I guess it’s begun
It’s a losers’ table, but we’ve already won
It’s a funny battle, it’s a constant game
I guess I was busy when Nothing came
This is nothing. This is my life. The fate of my flesh was sealed before I even arrived. It was the usual love story. Boy meets girl. Boy and girl make love (In the shower, as they jokingly remind me whenever I’ve friends slouched in my lounge room). Boy and girl make girl. Girl inherits FBN1 mutation.
And nine months later, nothing arrived. I secured my place at the losers table long before I was forced into its splintered seat, friends whose organs splintered and betrayed not unlike my own. We lost in the game of life long before we understood that we were supposed to win. Maybe it matters, or at least is meant to. Maybe we are fooling ourselves, heads buried alive beneath the grains of sand. You question our sanity, pity our lack of awareness. I cannot speak for the lips of those I love. That is their own choice to make.
I speak only for myself. Some days it’s a battle, and others I cringe at the shame of the semantics, a cheesy placard pinned to my face. A constant game? That has more truth to the matter. Some days I get to class, and a HD arrives. Some days I crumple in an emergency room, and something dies. Sometimes figuratively, sometimes literally. But somewhere along the line, I learnt to keep myself busy. Academia litters my bedroom floor, along with funding applications for not for profits, reply to an email, fall in love with a stranger, and retch blood into the shower drain.
It’s a funny game, living with this disease. The thing about games is one roll is a die. If you have a group? You get to keep playing with the dice.
So I’ll stay at my losers table. You are welcome to join, if you so wish.
But when nothing arrives, I’ll be busy.
On New Years Eve, I was at the beach in Geelong with my best friend, who we shall call Shelby*. Together we watched the fireworks at Midnight, as they echoed around the pier. As the fireworks drew to a close, we began to walk back to the car when PSTTOOOOOHHHH.
Some cock head decided to shoot a flare.
So naturally, I did what any best friend would. I grabbed Shelby and shouted ‘YOU ARE IN THE NAVY. YOU SIGNED UP TO SAVE OUR COUNTRY’ and used her as a human shield.
To say that this has bought about a fundamental change in our friendship is an understatement. Shelby now eyes me with the same level of mistrust as my brother now eyes Pork Sausages, since the Great Food Poisoning Incident of 2014.
This is the usual kind of flare that is well understood and recognised, albeit one should not have to recognise it as it hurtles towards your head (or your best friend’s head). But when you have a Chronic Illness, a flare takes on an entirely different meaning, and one in which you would preferably take a standard flare to the head rather than have the Chronic Illness Flare.
Flares are different for every single person living with a Chronic Illness. No one understands this better than my Dad, who lives with both myself and my Mum, who is Seriously Ill. In one hour he can have me attempting to choke down a sip of water while Mum inhales the contents of the pantry from Prednisolone cravings. This list is relevant only to my own individual experiences. If you take this to be the Chronic Illness Flare Bible, then I am not responsible for anything that happens to you (including someone shooting a flare at your head).
1) Do not bring me food. By food I mean anything that has the potential to be ingested, even incidentally, like toothpaste. Flares for me mean vomit, and lots of it. Alternatively, it can mean that I have as much control over my bowels as I do over the gravitational pull of the moon. Some people during flares cannot stop eating. I just can’t start. This then spirals into Dad trying to coax bits of mashed potato into my lips and sticking straws up his nose intimating the naso gastric tube that will soon be mine if I don’t gain some weight. And all the while I have Mum death staring me in the midst of her Prednisolone binge.
2) I am probably going to be high. Like, all of the time. I am anti drugs. I have never even smoked a cigarette (Although I did once snort some Wicked Fizz if that counts for any street cred). But the Morphine, the Oxycodone, the Mersyndol Forte and whatever else my doctors want to pump into me are going to get me higher than my standards in men. I would like to apologise for anything I have said, and will say, while I am high. P.s I think I’m in love with you.
3) I will also probably be a bitch. Anyone that knows me would describe me as one of the happiest, easy going people they know.
Until. Until I fall into the Pain Hole. That’s really not as sexual as it sounds, I assure you. When my Mum began treatment induced Menopause, my Dad devised the Menopause Alert Siren. This effectively involves Dad making an air raid siren and diving for cover under a piece of furniture. Having discovered it’s comical value, Dad has now applied this to my Bad Pain Days. I am irritated. My tolerance is at an all time low. I am overtly sensitive to physical stimuli (Can you fucking speak a little fucking quieter?). Lights are too bright, the TV is too loud, and you are guaranteed that you will say or do the wrong thing. P.s Fuck you
4) I am extra bendy. Hormone levels increase dislocations and subluxations in people with connective tissue disorders. Hormone changes also make you a lot sicker. This ends up ensuring that when you are at your sickest, you are also at your stretchiest. At the moment I am in the middle of a nasty flare. Last night I partially dislocated my hip pouring a glass of orange juice. Not only am I vomiting/shitting/swearing/high, I am also probably on crutches and waving my arms around really awkwardly cause my shoulders are popped. I am effectively just an inflatable waving man on Endone.
5) I sleep, excessively. Ask anyone with a Chronic Illness and they will tell you that fatigue is one of the worst symptoms they experience. There are three levels of Flare Fatigue.
1)I cannot shower myself
2) What is life
3) I can see sounds
No matter how much you sleep, you do not awake feeling refreshed. But you cannot do anything else, so you just have to suck it up and know that you are missing out. Which brings me to my next point.
6) You probably won’t hear from me. I am too unwell to meet you for coffee. I am also probably too sick for you to come to me for coffee. I will not call you, and I probably won’t reply to your texts or Facebook messages either. It isn’t that I don’t want to, it’s just that I don’t have the physical capability. Alternatively I am convinced I replied to you and think you are being really rude by not replying…
7) But I still get lonely. Even if I am too sick to reply, to hang out, to speak, message me. Send me a text with a photo of a Golden Retriever, just say ‘thinking of you’, or shoot a flare at my window. Just let me know you are still around, and that when I am feeling a bit better we will catch up.
8) I am behind everything in my life. This means Uni work, paying bills, cleaning, doing washing, showering, medical appointments, socialising, grooming the dog. The sicker I get, the more I stress. The more I stress, the sicker I get. Offer to take notes for me in class, to drive me to a doctor’s appointment or to just visit me for half an hour and play with my dog. I have a cute dog, so you will benefit also.
9) I forget. When you have a flare, it becomes impossible to remember that it will ever get better. I panic, and think that I will never get back on track again. There is no feeling so frightening as believing that you are in an uncontrollable spiral, a flare hurtling towards two women on a jetty, and that things will never be okay. Be there to help me remember. Remind me of all the flares that have come before, and all the ones that I recovered from. Give me perspective, and show me that you remember, even if I can’t.
10) I will be okay. Ultimately, this is the most key point. Sometimes I keep a complication from a flare for the remainder of my journey, other times I don’t. At the moment my vomiting is finally begin to ebb, the lobster allergic reaction rash that covers my torso from ECG dots is fading into a pink, and today I managed to do some pilates. As long as I know that I have you there, flare or not, I will always be okay. Take the hit of the flare with me.
This blog piece was influenced by ‘Red light’ by Baby Queens. They have a beautiful harmony, I encourage you to listen as you read. Chronic Illness can leave many feeling as though you are stuck in the slow lane in life. I know that I am not alone with feeling these sentiments.
With love and light x
‘An optimist is a person who sees a green light everywhere. While a pessimist sees only the red stoplight. The truly wise person is colour blind’.
Intersections aren’t my kind of thing. If you were to ask anyone who has ever had the misfortune of being in the car with me, they would say that driving in general is actually not my thing. One day I was driving my younger brother to school and I asked ‘Am I good to go?’ as I waited for him to give me the all clear from his side to pull out of a carpark.
Fun fact; ‘No’ sounds a lot like ‘Go’.
I used to only see green, to the point where with hindsight, I am able to recognise that it was to my detriment. Of course, had you told me this at the time I would have snapped at you that I would show you wrong. Doctors, family, my lecturers. I was going to be a nurse, and over my dead body would I do anything else.
It took two years, until my clinical placement teacher sat me down and told me that if I continued, it truly would be over my dead body. In the space of an hour I transitioned from indignation to anger, to being downright offended. Finally my face cracked in two and I sobbed into the folds of her shirt as I realised she had made the decision for me that I could not make for myself.
I was too sick to be a nurse. And I had no idea how to be anything else.
Right now, while I purchase second year psychological science textbooks, my friend’s who I initially began Uni with are purchasing their uniforms for the designated hospitals where they will be beginning their grad year. As they begin their careers, as they cannulate, intubate and consummate their knowledge, I will be walking late into class and listening to students raise their hands as they asked ‘So like, referencing is like, compulsory yeah?’.
I am angry. I am angry that my parents decided to fuck one night twenty three years ago. I am angry that my DNA fucked me over. I am angry that most nights, I am too sick to fuck at all.
But anger is like a red light; It kinda stops you from going anywhere.
Go to class. Spit up in the sink on the way. Avert your eyes, pretend that the other girls didn’t see. Pretend that you can’t taste the thick of your lungs upon your tongue. Apologise to your tutor for being late once more, and mumble something about there being too many fucking stairs. Pretend that you can’t feel the heat of the stares as they catch sight of the bruises along your inner arm. Tell them that drugs are a poor choice, and take your seat when they mistake joke for truth.
Watch as they raise their own perfectly unblemished arms and make intelligent comments about attachment theories and Bowlby’s monkeys. Submit yet another request for extension on an assignment and feel the shame creep across your collarbones. Look into the eyes of your lecturers and speak too quickly and too much about how you aren’t stupid, it’s just hospital and vomit and codeine and you’re talking too much and now it’s awkward and oh fuck. Feel as they touch your arm and tell you it’s okay, to look after yourself.
And the truth of the matter is that it’s expected that you know how to look after yourself when even your DNA doesn’t know.
When the stars hang limply in the sky, your friend’s ask you to go clubbing and you mumble excuses about having other plans. It’s less shameful than admitting you will spend the next ten minutes sitting in your car working out how to drive home, let alone rub your breasts against the flesh of another thick by cigarette smoke. Finally you make it home and your Mum spoons chicken and tablets into your mouth, sometimes metaphorically, sometimes literally. A bucket and laptop will rest swaddled in your lap, and you will frantically reference and spit out another sentence.
And you continue to wait.
My eyes are green. Google will tell you that it is the rarest eye colour on the planet. My family will tell you that they change colour in the sunlight. Lovers will tell you that they change colour when I cry. But regardless of how you look at it, they are a spectrum of green. Green is my homebase, my grounding breath.
When all is said and done, green works for me.
I am in my fourth year of Uni, and only my second year of Psych. My HECS debt will be greater than my burden of disease, and when a graduation cap sits upon my skull, my friend’s will already have established their careers. This isn’t what I ever asked for, it isn’t what I signed up for. I thought I was meant to be doing greater things than this. But when you have a Chronic Illness, your flesh has other ideas in mind. You are forced to be colour blind, and time has a sense of it’s own. Someone recently said to me ‘You know, I have always wanted to be a clock. I am always running late for something. But imagine if I was time?’. If I had a choice, I wouldn’t be a clock. I wouldn’t be in a rush, and I wouldn’t be time. I just wouldn’t be sick, that’s all.
Three mornings ago I dragged myself to four hours of class at 8.30 in the morning despite being up sick all night while my Golden retriever moaned in protest at my own moans and retches. I cradled a tea in my palms in a lecture theatre, limbs folded unto themselves. Did you know that women are most likely to be murdered when pregnant or shortly after giving birth? And did you know that psychologists are now beginning to recognise a new stage of development, ‘Emerging Adulthood’? And did you know that there was a guy in my class who got his head stuck in a cake tin until he was freed with tin snips?
I know this now. I know this because I am eager and wanton, begging for more. More books, more essays, more words plaited around my skull. Answer my questions with more questions. After four hours I drove home and fell into my parents bed, too exhausted to walk to my own. Later I drove to hospital and sat in the office of my professor. I listened to him tell me that he wished he could cure me, and that one day maybe a cure will be found. He smiled as he listened to my heart, and I shed a tear as I learnt in the waiting room that another woman living with Marfan’s had died just as I continued to live.
And then I studied some more. Finally, after four years, or perhaps twenty three, depending on how you look at it; I have come home. I am where I am meant to be.
Maybe I need to be colour blind. Maybe it would hurt a little less at every red and orange light, and every slammed brake at intersections (My brother would be inclined to agree). Perhaps it would make my bones wiser if they were merely ossification and not technicolour.
But truth be known, I really like green. It’s a good colour on me.
The lyrics that have inspired this piece are from ‘Undiscovered’ by Laura Welsh, which features in the 50 shades of grey soundtrack. This is an exploration of sexuality and intimacy within Chronic Illness, providing a different insight into one facet of it.
With love and light xx
‘I am interested in the gap between what people say and what people think- The undiscovered world’s of peoples lives’
I am but parted lips, nothing but a nibble between each. One is my thoughts and one is my words. If you know me at all, you would know that what I really mean is one is my truths, and one is my lies. And the bite between? That is the difference between your world, and mine.
You tell me that you want the truth. That you really do want to know; all of it. You always do. The vomit and the fucking and the maybe-I’ll-be-better-tomorrow’s. You claim that you are different, that you aren’t like the others. My lips are tempted to scowl, show you to the door and thank you for trying all the same.
Instead I vomit into your lap and let you show yourself the door.
So here it is. One is my truth, and one is my lie.
I can’t be someone that I’m not. To make it up to you.
You had wanted the truth, of course you had. And I had handed it to you, littering ‘Slippery when wet’ signs around my ankles. Ergo, get out while you still can. But it was an easy truth to swallow when I was perched in front of you, all short shorts and wild laughter. I was sick, that much you understood. But I wasn’t sick yet, not really. It’s always easier to play pretend when my blood isn’t seeping down the drains of your house.
I learnt to barter a long time ago, fluent in trading the fucked up variety. When I have to cancel dinner for the third time that week, I will slide the lace around my ankles and I’ll kiss Thursday better in all the ways that your mates could only dream. When sick and blood are the only words I speak between sunrise and sunset, I will take your fingertip between my teeth and make you forget. And in the evenings that I am too broken to peel off my own bra, I will drag you into the steam with me and try and make us both remember the kind of health that I never really had.
You’re the only one that I’ve got, but I can’t get lost with you.
I want to get lost with you. And I need you to believe that, just as I try to believe you when you tell me that you will teach me how; that you are here to stay. Oh how sweet it would be to believe that somehow I am enough, and not too much, all in the same suckled tryst. You will take the neon signs around my ankles and place them above our heads. And then you would kiss me, together owning my disease and it’s warnings equally beneath our plastic holly.
I don’t know how to get lost, or at the very least I do not remember. It’s easier to be seated on the edge of my predictions, heckles raised and waiting, than it is for you to slice me in two, telling me that you never signed up for this kind of life by way of explanation. I hand myself to you, full and open, only to curse myself and flush with regret, a cocktease of the emotional translation. I am the personification of two steps forward, one step hurtling off the concrete pillars, and I’ve got no idea how to be anything else.
When all I want to do is get next to you.
So these are my truths and my lies. Perhaps they are a pair of truths. Perhaps they are a duet of lies. Or maybe it’s a parted lip; 50/50. Here’s my real truth; I will never tell you which is which, and it’s up to you to decide which you will kiss.
I just hope that you do.
Twenty one years, eleven months and two weeks ago my Mum bought me into this world.
Eight years and three months ago, I became seriously unwell with an incurable genetic Connective Tissue Disorder.
Eleven months ago my Mum became critically ill with the only known case of Oestrogen induced anaphylaxis in the world.
Two months ago my Mum was fighting for life on a ventilator.
Today we went shopping.
Tomorrow is Mother’s day.
This blog is for my hero.
This is for my Mum.
“For a star to be born, there is one thing that must happen: a gaseous nebula must collapse.
This is not your destruction.
This is your birth.”
You would have taken the fall for me. This I know to be as true as the sick in my belly and the swell in my heart. A few nights ago you asked me how many chromosomes a child receives from each parent. In your eyes I will always be a nurse, the most profound of gifts you could ever lay in my lap.
It wasn’t your fault Mum.
Your reply was as silent as my own assurance.
But it could have been.
And you went back to drinking wine, and I went back to pretending to drink wine, and we planned my future trysts with the spark that only Irish barmen could convey, and lulled ourselves into the parallel universe in which we had found ourselves at home.
The first day could have been yesterday. Or perhaps it could have been eight years ago. Regardless, what was done was done. I remember crying to you, still a child in every sense of the word. I didn’t know that morning I would be thrust into the land of the adult, and you would be knocked entirely off your own axis.
Mum. I can’t walk.
What do you mean you can’t walk?
And so it was.
I would have taken the fall for you. This you know to be as true as the ventilator gurgling in the recesses of your throat and the ache in your soul. As you headed out the door, proud in the way that only a new coat can bring, I called out. My eyes never left the screen, and my fingers continued to fritter away the hours.
‘How many EpiPens do you have Mum?’
‘It’s okay Jess’
And I returned to invest energy I could never afford in to pretending to write assignments, you told me you loved me, and you returned to pretending to gather wood with Dad using strength that has long been laid to rest.
The first day could have been yesterday. Or perhaps it could have been twelve months ago. History has a funny way of repeating itself. Regardless, what was done was done. I was still a child in every sense of the word. You were the parent, I was the child. And as you reached for the dishwasher I found myself gurgling in the unfamiliar tangle of role reversal.
Jess, I cant breathe.
What do you mean you can’t breathe?
And so it was.
I was angry with you, and you were even angrier with me. Most of all, we were angry with ourselves. You weren’t supposed to get sick, but then again nor was I. This happened to other people, other families in other lands and other stories. It was their pain to hold, their ache to feel, their tears to drain in the recess of the shower. We were good people. Lightning didn’t strike good people. It never struck twice.
Only, it did. And we could weep, we could grab onto our own flesh and scream. It wouldn’t make a difference. But we did it all the same.
I don’t have any friend’s left.
No one even visits.
I’m just so fucking tired.
I just want a break, just for one fucking day.
I don’t think I can have babies.
My ovaries are going to kill me.
I was never a dancer, and you fondly remind me of it when I try to pretend that failure of flesh was the catalyst for change. You were different. You wore a Miss Australia competitor sash after all, one doesn’t play hanger without having some sense of tightrope. But in this new land we each had to match the steps of a new dance. It was unpredictable, chaotic and desperately lonely. I stepped on your toes more than once, though I was loathe to admit it. You didn’t fare much better.
I’m in pain.
Yeah, well so am I.
But when it came down to it, under the lonely cover of darkness, we moved seamlessly. There were the days you found me sobbing into my shirt on the dog bed. You never raised an eyebrow, and instead took me in your arms. There were the days that I found you sobbing into the Tupperware cupboard, and I never said a word. Instead I reached for the kettle and danced around the missing lids, and together we sat in silence.
It wasn’t all hurt. There were the tram trials and the way we held our heads high as we dangled bags over our arms through David Jones, and stopped to admire boots that were worth more than my car, and we feigned interest all the same. The movies downloaded and the wine and the tea and the forbidden Cadbury inhaled inbetween.
I held your hand in the Intensive Care Unit and watched with terror as they prepared the Endotracheal tube, the ambubag, the ventilator. Each time as another Intensivist surrounded your bed side you squeezed my hand a little harder. You winked.
You were dying, and you were setting me up.
As they told me to say goodbye I started sobbing hysterically and with your last pocket of air you gasped to Dad. ‘Look after her. Look after her’. I will never forgive them for dragging me away, sobbing and I will forever be grateful that they did, so that this blog can have the ending that it does.
Lightning isn’t supposed to strike twice. But it does, and it did. And just as sure as I will continue to fight this until the day that I leave this earth, so too will you.
We can’t die yet. We’re too wicked to be allowed in yet!
You will fight for me, and I will fight for you.
Most of all though, you will just be my Mum, and I will just be your daughter.
And now I have proof of what I already knew;
You really are one in seven billion.