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
In the past few months a few people have requested for me to write a blog on what it’s like to love someone who has a Serious, Chronic or Terminal Illness (of any nature), from the partner’s perspective. The woman that this blog explores is not myself, or any one particular person. Rather it is a collection of my journey, and the journey’s of others who I have been blessed enough to share with them. One day I hope to be able to write from the perspective of someone loving a man who is unwell, however for now this is a good place to begin, in more familiar territory.
All lyrics are from ‘Bloodsport’ by Rayleigh Ritchie.
Love and light,
Nothing is perfect but your imperfections are quaint
And your love is worth it and for that I will wait
And though you hate me, when you have a turn
I drive you crazy but you always return
Just as sure as she could appreciate that I was never going to be the type to pick my towels up from the bathroom floor, I understood the betrayal of her own flesh. She could never hide it, nor would she have. She was defensive. ‘Love me, love my disease’. She expected me to lurch for the handle and never pause to look back, and deep down I think part of her wish I had. That way I could never leave her later, she would have too much to lose. It would destroy her. No, she couldn’t live through that again. But now? It would be a clean shed, requiring nothing more than an indifferent shrug.
She was curled on a mattress on the lawn that she made me drag outside. ‘What’s the point in having a lawn if you can’t make it a bedroom?’ she argued. If I really concentrated, I could make out the puckered scars peeking from the gap between shirt and short. But I couldn’t concentrate, not when she looked like that. She grinned at me from beneath a hat of Audrey, and in that moment I made my decision. Love you, love your disease. It added nothing but an extra flair, and made her vivaciousness all the more exciting. Besides, how bad could it get?
If I fall short
If I break rank
It’s a bloodsport
But I understand
I am all yours
I am a man
I’m on all fours
I was full of promises, and I promise you that I believed them. They were not yet tinged with regret, and I’m still unsure as to who would live to regret them more. God knows it sounded great. Never let the truth get in the way of a good story, isn’t that what they say? Truth be known it was firmly cemented in my own personal mantras. But I really did sound great, that’s the thing.
‘No matter how bad
‘You don’t know how bad it will be.’
‘Even if you can’t’
‘You will have to carry the weight of a pair’
‘I will go to the end of the earth’
‘You still won’t find the cure’
‘No matter what’
‘But what if’
I shut her up. And I kissed her.
I felt her hand slap me cold. Her eyes were wild. Don’t do this to me. Don’t do this to me. Don’t let me love you.
And I carried her to our bed, where we stayed until the stars seasoned the sky once more.
No matter what.
Loving you is a bloodsport
Fighting in a love war
Although you love me, sometimes we meet
Things can get ugly but we’re still a team
We are an army, the brakes are within
But that’s why we’re stronger, and that’s how we’ll win
It’s not what I’m in love for, I know
But I don’t know if you can’t help it
Baby, I’m just being selfish
I creak open the door and now I don’t know how to breathe anymore. There’s so much blood. She screams at me. Get out, just fucking get out. I gather her into my arms and feel her chest break in two. I swallow hard and hope that it is enough to drown both of our cries. Don’t look at me, don’t look at me. So instead we lay on the bathroom floor together and I listen to her howls. And it is then that I break my promise. Love your disease. She is too sick to care that I have just taken all from her that I ever gave.
Not all the days and nights are quite so piercing, it’s the days in between that hold a quiet heart break; Too well for admission, but too sick for life. She smiles weakly from beneath the sheets. Ironic isn’t it? Sleep steals her from me more than the daylight hands her back into my arms, and I see her eyelids fight it, more for my benefit than hers. I would be lying if I said I wasn’t disappointed each time the former wins. When she awakes, she snaps at me. Why don’t you just leave me already? It’s not like we ever get to spend time together anyway. She woke each hour on the hour, and I am too tired to side step the net. It seems to be what you fucking want, why can’t you just accept that I want to be with you? We don’t speak to one another for the rest of the night. Later I find her angrily blinking back tears as she wrestles with a lone button on her bottoms. With only our hands speaking we find our way into the shower, and all is forgotten once more.
I’ve got your back and though it’s stacked against us
I’ve got your hand, it’s us against consensus
And I will burn the people who hurt you the most and I will not learn
‘Cause I am too young and too dumb to consider the terms
One day I wake long before the sun has felt the need to lazily roll out of the sky, and I realise that we have found our normal. Mondays are treatment, and Tuesday’s are tired. I cup the mucous from hher lungs after dinner but before bed time meds, and the dog eats another shoe. Wednesday she may study and Thursday she will do her best impression of the dishes. Thank god it’s Friday and shit did we forget to get her scripts filled? She is lonely during the day, too exhausted to play host to anyone other than the mail man. The weekends are hers, and she grabs at me so intensely that I am sure she will never let go. I’ve missed you, she mumbles. If she is well we will drive to the beach and I will yell at the dog for rolling in all unholy things that are to be found on the stretch of sandy dog haven. Often as I see other pairs walking past hand in hand, I try to imagine what they see. I wonder if they see how beautiful she is.
I’m breaking the law and I’ll curse the day that they return
With a smile on my face as their heads hit the floor
And it’s done, now it’s curtains, the blood lost, it’s the cost, it fucking hurts
But it’s working and even if you ask me to stop it’s too late
Because I’ve already decided that faith is not a distaste, it’s pure hate
And it pulsates and it works its way around my brain
Love me, love my disease. I still remember my promise, and despite my best intentions, I can’t bring myself to love all that destroys her. She is hurt. I stare at her in disbelief. ‘Are you seriously pulling my leg right now? You’re offended I want them to make you better?!’. She spits back. ‘Of course I am; I’m just too much for you. Why can’t you say it. Love me, love my disease! What a load of shit. I should never have believed you’. I motion to the powdered lollies tiling the kitchen bench, the vomit bag clutched in her hand, the blood staining the ensuite bathroom no matter how much grease I bleed from my elbows. ‘This! I can’t love this! This isn’t you. This is killing you. Can’t you fucking see?’.
I took the forbidden fruit and threw it in her face. And to my shame, she apologised. ‘I’m sorry this is killing you too’.
I don’t know what to say. If I tell her it’s not, she will hear my lie. So instead I kiss the top of her head, and tell her she is beautiful hair or no hair.
I work my way to her lips, and tell her that the vomit never mattered.
Her collarbones are next, and no matter how sharp they poke, she will always be woman to me.
Her spine, watermarked by bruises. Her belly, puckered and pale.
I kiss every inch of her, and of her disease.
No more fixing. No more searching.
Love you, love your disease.
And I promise all once more. Each time I mean it a little more.
Neither would have chosen our sad and gentle reality, punctuated with screams in the night and raucous laughter after half a beer and a Saint Bernard. With each day that passes I can appreciate a little better just how much her illness holds the ability to destroy everything I ever loved, and take as much from me as it does from her. Some days her eyes forget how to smile, and she cannot wake for longer than an hour. If sleep does not steal her from me, then the medications takes its place. People look at me and they don’t understand why I would choose this life. But just as sure as she did not choose this illness, I did not either.
I chose her.
And I will forever play this blood sport, if only to hold her for an hour.
This blog is an intensely personal one. All my blogs are, however this reveals the moments that have shaped my year. The pain is still raw. I do not sleep very well anymore. My senses are heightened. I still jump when I hear a siren. I sob into the plughole and try to curl so deep into myself that I may disappear all together. This year has hurt me like few others. I am fragile, and I am afraid. I hope that you understand. I am not avoiding any of those that I love. I am just hurting, that’s all.
But most of all, together as a family, we made it through.
This blog is for my family- My soft spot to land.
produced, introduced, or discovered recently or now for the first time; not existing before.
I was panicking, borderline hysterical. My breaths were ragged, sharp. Mum tried to soothe me. ‘Calm down, it’s only a calendar’. She didn’t understand, she couldn’t. And nor did the lady at the stall. ‘Well, we have lots of lovely calendars’ she offered. It just needs to be new. I didn’t care for flowers or Van Gogh. Do you just have something that is fucking new?
Every New Years Eve it’s the same story, the same Facebook statuses, the same bold promises and the same affirmations. Next year is going to be better. Next year will be my year. Next year I will lose weight/get healthy/be happy/fall in love.
Next year will be better. I just wonder if any of us understand what better is.
It all started with a mole in January. And the mole turned into a doctor’s appointment. Which soon became a referral to a specialist. And before we could appreciate the reality of what we were dealing with, a scalpel sliced my dad’s abdomen in two to remove the Melanoma. It was stage three. It was almost the worst, but we were lucky. It was a single millimeter off the worst.
February was my second year of Uni and I was so determined. God knows I wanted this; I wanted it more than any of them. I would look around at their mini skirts and drunken Wednesday nights and I understood that I wanted that stethoscope more than they wanted for their next breath. Believe me when I say that I tried. I really, really did. I would be the best nurse that they ever saw.
As the leaves began to fall in March, I was in love. I cringe to type it, but what would my writing be if it were not the truth. I was in love. Promises of barefoot weddings in the sand and a blue home by the sea were made. He kissed my bones and for a moment I could believe that I was enough. He was my best.
It was April, and another admission to emergency. We joked that perhaps my heart could not handle so much love. He held my left and Mum held my right, and together we formed a trinity through the tubes. When I woke we would post my invitations, and it would be wonderful. We made the best.
May and may I begin to weep. Twenty one. I made it. I have never felt so much love in a single room before, friends from far and wide. Car trips, train trips and plane trips. There were speeches and oxygen and vodka. At the end of the night, she stole a quiet moment. She whispered in my ear ‘You saved my life’. And I just squeezed her hand. It was the best twenty-first present in the world.
June is blue. June is panic. June is terror. June is when Mummy stopped breathing after dinner. June is calling 000 and pausing for a moment. June is saying to a man I had never met that my Mum had stopped breathing, and June is expecting a stranger to help me keep her alive. June is telling Daddy how to position her on the floor to begin resuscitation. June is sending baby brother to the mail box with a torch to wait for the ambulance. Later he sobbed and told me he was sorry. I couldn’t find a torch, so I took the garden solar lamp. I’m sorry. June is the paramedics telling me that she wouldn’t have survived another minute without adrenaline.
July and it can’t be happening again please god no not again this can’t be happening please just let her breathe. This time there is ICU and special doctors with special machines who wear special voices to say special things. Daddy cries and I don’t know what to do, so instead I make him a coffee and pretend that I know what the fuck I am doing.
August. We are tired. Big brother almost injects the adrenaline upside down. Baby brother brings out six cans of coke for each paramedic gathered frantically in our driveway. ‘I thought they might be thirsty!’. I choke on a sob. I don’t know how we got here. I don’t know how we found our new worst. I just want it to stop.
September. Wake me up when September ends. We can’t do this anymore. I slump on the floor in the ICU waiting room. Parents are screaming for their dead child and I am sobbing for my dying Mum. We don’t try to comfort one another. You don’t do that in the ICU. Your own tragedy is enough, and you avoid one another for if you meet you will surely break all together.
I watch them attach the defibrillator, and I snap at the head ICU consultant. I thrust a research paper into his hands. ‘Severe catamenial anaphylaxis, with a prodromal phase of upwards of 3 days, resulting in sudden respiratory arrest, VT and requiring on average 15 separate administrations of adrenaline’. He told me he was sorry, he didn’t realise I was a doctor. He explains to me their plans to intubate. I tell him I’m not a doctor. I’m just trying to save my Mum’s life. They listen to me a little bit more after that.
That night I go home to his arms. He tells me that no one else will ever put up with someone like me.
I just want to die.
October. Operate. We are running out of time. I keep telling them ‘You have until the 28th. She can’t survive another attack’. Their hands are tied. We have to wait. Once more I thrust research papers in their hands. I tell them that if they do not also perform a complete oopherectomy, Mummy will die.
They perform the oopherectomy.
My Mum survives. I ended it with him. And now I don’t want to survive.
November. November is placement. I worked for this. I worked so fucking hard. Do you understand how hard I worked? With IV’s in my arms and my hands stroking Mummy’s hair as she hovered in uncertainty. I tried. I tried and my ribs swelled and my heart swelled and I kept trying.
And then they sat me down. And told me that I was too sick to be a nurse.
And I cried so hard that I cracked a rib. I lost my reason, and found my worst.
Baby brother was awarded first place in a world wide engineering competition. He receives a $300,000 scholarship. He found his best, and I have to be happy with him. I am. I just wish I could have some best too.
December. I have applied for psychology. I have already begun to order my books. Sometimes I cry when I think about him, and sometimes I vomit. Always I feel safe. Mummy is alive, and is attack free for three months. Just quietly, I think I helped save her life. Dad still has No Evidence of Disease. My baby brothers are learning to be brothers once more. We are learning to breathe a little easier. We do not jump at every mole and every cough.
Most of all though, we have we. We made it.
This year was my worst. And it was my best. And next year will also be my worst, and my best. I now understand that every single day holds the capacity for a new best, and a new worst. You too will find your new bests and your new worsts, in places you never expected. Your best may be in a gutting decision and your worst may be in the arms of the one that you love. You will love and you will hate, you will fear and you will embrace. You will be happy and you will be sad. You will make mistakes, and you will disappoint. You will achieve and you will succeed.
All I ask is that you don’t cheapen the best and the worsts of this year. Because there will be more and one day you may not even remember them. Just know that they mattered.
I will make only a single resolution for the coming year.
That every day I will appreciate my bests, and respect my worsts. Because at the end of the day, that’s all our days were ever really made up of. And those days wouldn’t be quite as beautiful without them.
This is my first post since reaching 30,000 views on my blog.
This blog is dedicated to my two brothers, Jake and Ben.
Last week I was diagnosed with a genetic, connective tissue disorder. It affects my musculoskeletal system, and most of all my heart.
It is thought that my brothers also have the condition. My youngest brother begins testing tomorrow, and my older brother will be tested after him.
This is a blog about my old journey meeting the new journey we share together.
Lyrics are from ‘The Woods’ by Daughter. It is a beautiful song, and I ask that you listen to it as you read.
Love Jess xxx
I asked Saint Christopher
To find your sister
And she ran out in the woods
And she ran out in the woods
My baby brothers, I know you missed me so.
I know you did, for I missed me too.
He took me in the night, and he never even left a note. Of course, you searched for fingerprints, for broken windows, blood in my bed. But you never found it, for I was already gone. Slung over his shoulder, a bobbing shadow in the night we were all but out of reach.
Mummy and Daddy called everyone listed in the Yellow Pages. But they didn’t know where I was, they didn’t know how to get me back. Some of them pretended, of course. They handed over their life savings, so certain that the white coats would bring me back and we would go on as if nothing had ever happened.
But the days became weeks, and the weeks became months, and before we knew it had been seven years.
Sometimes my ghost would visit you. I would curl my white, spindly fingers around your wrists, and clutch at you sobbing. You would each form a tug of war, and try to pull me back. But we both know you were clutching at thin air. Instead, we would sit together and cry a little while.
And then I would go back to bed in the woods.
Oh it was certain then
And we were trying to stop the winter
Killing all it could
Killing all it could
It’s been seven years, my baby brothers.
We stopped needing a cure a long time ago. We found our happy medium, a delicate see saw between tragedy and triumph. I was a beautiful wreck, and peace wrapped us in it’s tentacles. An acceptance of sorts, our offering to the universe.
We get it now.
We get it now.
Cure, Remission, it was no longer forefront in our minds. Que sera sera, however the leaves may fall. But we never forgot.
Sometimes you would hear me howling from the pines, and you would each howl back, a trio pack lost in cold, gray land. And so we continued to hope, to pray, to wish. If each of us were to command one, surely something would eventuate and the forest would bloom to heaven.
You tried to stop it, I know you did. You each tried so, so fucking hard.
Do you remember when I was dying?
I know you do.
I know that you remember more than what I do. Morphine will do that to you.
Big brother, do you remember the day that Mummy and Daddy told you to hold my hand? We had a special bed, in the loungeroom. It was so that I could be close to you all. I was mere chicken bones laid upon the sheets. My eyes opened every now and again. You didn’t know what to do; you were only thirteen.
So you picked up the Dolly Magazine, the pages which I could no longer turn. And you read to me the ‘A to Z sex alphabet’ out aloud to me. I was dying and you were scared. But you still made us laugh, until I fell asleep once more.
You made me laugh when I had no reason to.
Baby brother, do you remember?
Do you remember when they took me away from you for a few months? You hated the hospital, you wouldn’t visit. Most of all, you hated me for leaving you. And so each night when you called, you would only speak to me in Spanish. I couldn’t speak Spanish, and until then neither could you.
We had found ourselves in a foreign land, and a foreign language was only appropriate. And just as countries have done so for years, we began to build bridges across our fears.
You would scream Burrito, and I would whisper Taco.
And then we would giggle until you forgot that you were mad at me.
You each tried so hard to stop the winter.
But we never saw this one coming.
And I pray a lot for you
And I look out for you
I’m not sure either of you believe in prayer, baby brother you especially. And I know this will make you laugh. I’m not sure if anyone is listening, and I’m not sure if they really care. But I pray for you both all the same.
I pray that you can live the adolescence that I never did.
I pray that you can be healthy, I pray that you can be free.
I pray that you will each be happy.
And most of all I pray that you won’t have to fight like me.
I guess I didn’t pray hard enough.
We are what we are
Don’t need no excuses
For the scars from our Mothers
And we know what we know
Cause we’re made of all the little bones
Of our fathers
Was it Mummy, or was it Daddy? They say that shooting stars are simply made of falling debris. Maybe their love is considered destruction.
I’m not sure we will ever know.
The truth is, I know that not one of us wants to know, because it doesn’t matter. They are us, and we are them. And any faults we were together, a family emblem tattooed across our chests.
I was tested first.
The surgeon, the radiographer, the cardiologist and my professor were the jurors in my trial. They reached a unanimous decision.
I wasn’t just tall, I wasn’t just skinny. I wasn’t just flexible, I wasn’t just unfit and out of breath.
I was positive.
Baby brother, your testing begins tomorrow.
And I know you are scared, and I know you are hurting.
Because you might not just be tall, you might not just be flexible, you might not just be dizzy. And you might not just be dislocating every week ‘just because’.
You will see the surgeon, they will run a camera over your heart, just as they did mine.
And then you will wait.
And I’ll be there when the jury reaches their decision.
Older brother, you are last, but not least although we joke about it often. You are not the golden child, the brains, the wit. You are the tradesman, the forgetful, The Wanderer. And we only love you the more for it.
No, you are last because you really are least. You are taller, but not quite as flexible. You break more readily and dislocate less.
Mummy and Daddy laugh. We complete one another. What one cannot do, the other can. We come a full genetic circle.
You are last, but that does not mean you will be left to bob out at sea. When your time comes for the same camera, the same doctors, the same tests, we will be there. Perhaps we will have paved the way, and will be waiting for you at the forests edge.
I pray a lot for you,
And I look out for you
I pray a lot for you,
And I look out for you
My prayers will be different now, my brothers.
I will pray that you can be free,
And I will pray that you can be happy
But most of all, I will pray that you can live happily being like me
I asked Saint Christopher
To find your sister
She ran out in the woods
Cause she ran out in the woods
My baby brothers, this is where I finish my page and you begin yours.
I once asked Saint Christopher to find me, as I was taken into the woods.
But we needn’t worry, for he is the patron of travels.
And now I will ask Saint Christopher to look after you both
As you begin your journey, and meet me in the woods.