the way he made me feel

anon.

I don’t think I’m anti social. Infact, the happiest times have been exuberant conversations over food and drink. I am anti pain though, and since socialising brings pain, I feel a nasty cocktail of emotions before events. A melange of excitement and dread. Dread.

The event was a Hens, and being a bridesmaid, I was going to be there. I trained up to Melbourne at 12pm, and one minute at a time, I experienced joy and pain until 8.30 pm. I prayed, and drank water, and pined for champagne, and took breaks, and enjoyed, and ached and ached.

But it was Sunday which was cruel, just as anticipated. Overnight I was crushed by a semi trailer; so heavy did my bones and muscles become I thought they would fall out of me. So nauseous, so dizzy, so exhausted to the point of being unable to talk, so utterly hungover without a drop of alcohol. When I was awake, I thought: how can I endure this again after the wedding, but more severe? I can’t. I can’t endure this again, not in two weeks.

But two things broke through. You don’t have to endure the hangover from the wedding now. You only have to endure that hangover one second at a time, when it comes. You never have to live more than one second at a time, and if you can survive one second, you can survive two. Just live this second, don’t anticipate the next and compound the pain.

The second thing that I experienced was love, to such a degree that the memory of pain is wiped over by the memory of being cherished.

Ben got up the morning of my event, and baked Red Velvet Cupcakes for me to take along, with the nuts he had activated for me, and the quinoa porridge. Then he dropped me at the train station. At 8 pm I got a message saying that he had arrived in Melbourne, to save me, to carry me home. He drove me home, and carried me to the bedroom – the bedroom had been dark, dank, bedraggled in masses of my clothes, with dirty sheets on the bed. While I was away he had folded all my clothes, stripped the bed, vacuumed, and I saw white, and clean and clear.

I slept like a submerged log, and the next day he was at church when I awoke feeling poisoned. But my breakfast had been prepared for me, and soon he had chicken soup for my lunch. Later he came to the bed to show me pictures of our bombsite study completely arranged, with all my sewing things ready for me. More soup, more hugs, and then he read my book aloud to me, joining the story ¾ the way through and barely understanding the musical terminology. I laughed till I was hysterical about ‘fugue’ being pronounced ‘foo-goo’. Before I knew it he’d put my pajamas on, and my first day of hangover was over. When he said ‘I love you’, I thought what an action word love was. Yes, he loved me. And that is what I will remember.

The pain couldn’t go, but it could be over powered. So the excitement and dread before were replaced with pain and bliss. The light countered the dark, and I will remember the way he made me feel. I love that love wins over. 

words for wednesday {page 11, stability}

“But feelings are flickering flames that fade after every fitful stimulus.”

Lewis Smedes

We are not our feelings. And our feelings won’t last. I am an "I’ll never be happy again!" or, "I am so happy I’m going to explode" kind of person. I love this quote because it speaks reason to me when I’m submerged in volatile intense feelings. Intense feelings use up litres and litres of energy and I feel gushing loss of control. It’s a comfort to know they won’t linger forever and equilibrium will return. A truth for the blue days, and for the high days.

Ben and I have been reading a book on marriage and this chapter was fabulous on how passionate and electric new-love inevitably fades but is met (with the investment of time and will) with the satisfaction of being known and loved for the long term. Sometimes we get thoroughly freaked out by looking at all the marriages that started out just happily as we did, but didn’t last. So much of our family. We wonder, are we just thoroughly naive about how bad it’s going to get? 

But eventually we have to stop wondering and worrying that one day we’ll wake up and not want to be together. We return to making that daily decision to love again. Something stable, something tangible, something a tiny bit like our Maker’s commitment to us. 

“For it is in giving that we receive”

Francis of Assisi

“And in the end,

we were all just

humans,

drunk on the idea

that love,

only love,

could heal

our brokenness.”

Christopher Pointdexter

elation

Sometimes you have to go down before you can go up.

Sometimes you have to take two step forwards, one back, and then repeat. 

Sometimes you have to just be, just remain where you are for a long time. 

Always, you have to be patient and kind to yourself about where you are. 

Photo source

Those are the things I have been learning the past few months. The only way to describe my health at the moment is by a graph, where the overall shape is an upward slope....but where there are jagged downward jerks along the way. 

There are days where I feel characteristically ill, and others where I am so well I taste and delight in what it is to be in full health. One excellent week leads into a week of tears, migraines and couch rest – and then as suddenly as my bad health appeared, it departs again, like a fleeting bad dream. The main challenge in this new stage of illness is to be incredibly flexible mentally: to accept and embrace whatever my body throws at me, and to remember the upward slope even when I’ve taken a temporary plummet.

Perhaps that sounds simple, when written in a sentence – but we’re dealing with a heart which is longing and working towards healing. I agonise in those down times that I’ve taken a fall to my former state that will last for months. I deliberate carefully about how much to do: less to preserve my health, or more to utilise my new found well-being? I try to celebrate the progress without clinging to the health which may not remain. I pray and thank.

Each time I achieve something, I want to throw a party and rejoice for feeling alive. I cannot express how wildly well and free I feel as I do the shopping alongside Ben who has done it alone our entire marriage. How incredible it feels to put my arm around his waist on our walks, when I didn’t have the strength to lift it up that high for the first few years. How elated I am to be able to do the dishes, and help make dinner....go on long car trips, play my flute standing up, hold up my hair straightener long enough to straighten  my hair, and get ready for bed at night without any help. Tears of happiness trickle down my cheeks as I feel gratitude for this lavish gift, and dare to hope that the graph of my health is going to keep winding its way slowly, slowly to the top. 

being incredible

From time to time I have a day of insanity and decide that I am going to be superwoman A+ wife. Let’s make that, housewife. I model myself on a 1950’s wife, and decide to feed my man, wash for him, keep the house impeccably clean, and basically be incredibly industrious. Oh, and look good too.

 1955,  The Good Wife's Guide

Yesterday I was in this ridiculous frame of mind due to having slightly more energy than usual, combined with delusional thoughts that I am a failure of a wife for rarely cooking or cleaning. 

The day started well. I was enthused, and confident that yes I could tidy the house, clean the rabbit cage, do the washing, go to the gym and make dinner. Despite my illness. 

It got to 2 pm and I started to feel very worn out, and just plain ill. The house was tidy, I was exercised, I had some shopping, but oh how was I to make dinner? I granted myself the luxury of an hour’s nap feeling guilty for such a deviation from domestic goddess-ing. This nap was far from relaxing because I knew that I needed to get up shortly and keep ploughing on. My nap ended before I’d even began to unwind. But I decided that I was not going to fail, not this time, I just wanted to be a ‘proper housewife’ for one measly day. Partially because people pity Ben for having to work AND look after himself and his sick wife...and I take those comments as a judgement on me and my limitations. I resolutely dragged my ill body from the enticing couch and walked myself into the kitchen where I proceeded to cook my first meal in months. 

It was 5.30 and Ben arrived home. 

I felt deflated, ill and irritable. Exhausted from my efforts, I had nothing left to give, not even a laugh. I didn’t enjoy our time together because I was spent and ruined. By 8.30 pm I had the early onset of a migraine. By 10.00pm I had a head splitting migraine, which was not about to allow me any rest. I lay in bed holding my head for dear life, while moaning that I wouldn’t be able to make it to my appointment the next morning and what a disaster this would be. We didn’t get off to sleep till the early hours of the morning – and here ended my day of being a super housewife. Super.

A gorgeous friend (find her here) who is also chronically sick put it just perfectly after I told her my feelings:

But you can love him, laugh with him, cuddle him, be there, talk to him, smile, hug him, comfort him, care for him, and make him excited to come home for dinner. Aren’t those things more important and more precious than cleaning and cooking?

How many times has Ben said he doesn’t want me to waste energy on the house, because it’s not important, because it’s not what counts...

And I continually fall into the trap of wanting to be society’s ideal partner– the girl who earns an income, or the girl who is the classic capable housewife...instead of being his best friend and most loyal supporter. When I said my vows, I didn’t promise to cook dinner, I promised to love him and cherish him and respect him and that is all he ever wanted from me. 

Today I took my wifeing to a whole new level. I spent time with my friend, took my dog to the park and lay in the sunshine, lay on the couch, ate food and left the dishes untouched....and I am so ready to hang out with my man tonight. 

Dear Self,

I know you're a slow learner, but why do you keep getting side tracked from life by living up to unimportant expectations?

Seriously, D 

in his shoes

What is it like to marry a sick girl?

This is the journey that Ben has undertaken with me, every battle I’ve been fighting has been fought with him, and so in some ways we are both ‘sick’ because we both share in it absolutely. We vowed to love each other on the bad days, and that promise has been tested every week! He sacrifices so much in his love for me – he gives to me even though he won’t receive as much back. He could have waited for a girl who had a job, could cook him an evening meal, and always had energy for exploring life. 

It’s beautiful when love is less about self and more about giving. That’s the kind of love that lasts beyond the first giddying weeks into the decades of life, the kind of love that has sustained those amazing wrinkled couples holding hands as they hobble along at eighty. Ben inspires me. Real love is gritty, tough, and sacrificial – but it’s also lasting and deep.

What were your fears about committing to someone chronically ill, and what made you go ahead anyway?

Yes, my fears where exactly that. Could I commit to Dee for the rest of my life even if that meant I was committing to caring for someone very sick for the rest of my life? I knew enough about chronic fatigue at that point to know that Dee may never get better. She may get worse. Could I be there for her and care for her every day? Could I accept a very different life to what I had imagined my adult life to look like? I knew if the answer to those questions was “No,” then I could not in good conscience marry Dee. But I love her. I can’t tell you exactly how it happened but about three or four months before we got engaged those fears fell away and the answer to all my questions was a relieved “Yes”. I knew it might not be easy but I loved Dee and I wanted to spend the rest of my life with her, regardless of what that meant. A lot of people might face struggles like this later on in life and marriage. I think we were blessed to face them before. It was a proving ground. We knew what we were in for and we wanted to commit to each other all the same. There is an amazing amount of security and comfort in that fact.

What has been the hardest/most frustrating aspect to cope with?

When we’re both down. That is definitely the hardest time. It’s very hard to care for or cheer someone up when life has got you pretty down as well.

What have you learnt through this journey?

Lots – lots about myself, about priorities, and learning to love others. One of the big things though, one that has helped us manage through this difficult time is this: You have options. You can make changes. Your life doesn’t have to look like everyone else’s. You just have to have the courage to live a life that actually works for you rather than struggle to meet some ideal that society places on you.

How can your friends best support you as a carer and partner?

I think by accommodating us. Our life does look very different out of necessity. Things that everyone else considers normal or routine are a stretch for us or downright impossible. For someone to ask how they could make coming over or catching up easier means a lot. When people get the message that we can’t come over regularly or be somewhere every week it is very encouraging and a bit of a relief to be honest.

Are there any positives?

Absolutely. Like I’ve said I’ve learnt lots and we’ve learnt lots about each other too through this. We’ve seen the whole spectrum and I know what makes Dee tick, what helps, what doesn’t. We’ve grown both individually and closer together. I can say with absolute certainty that our marriage would not be as strong were it not for this.

We have also been able of laugh and have fun even when times are hard.

How does the unknown future of her health make you feel?

Honestly I don’t think about it. In one way everything is unknown so Dee's health is no more unknown than anything else. I could get hit by a bus, become a paraplegic, lose my job, or lose my sight and Dee would stick by me, I know. Life is unknown but God is sovereign.

Would you do it again, knowing how challenging it is?

 Several times over.

Ben is nearly finished his Radiography degree – he looks forward to working in a hospital next year and saying goodbye to lectures and essays. When he’s not studying or working, he likes relax with his wife and dog, curl up with some Tolkien, or cook up a storm in the kitchen. 

mrs. non-conformity

I don’t think I’ve ever ‘fit in’ – whatever that means anyway. My life has been a collection of counter cultural decisions, some of them my own and others not. My mum and dad didn’t just go for the usual two or three offspring... they took it to the giddy heights of five. Contrary to common belief, it was not because they were Catholic and scorned the use of contraception – they just liked us, and liked raising kids. My intelligent mum was so committed to us, that she became our teacher after we had tried out school. They wanted to be more involved in our lives, rather than send us off to other adults all day...and fair enough, I salute them for it. Then they dragged us from New Zealand to Australia, where we were regularly reminded that we didn’t speak normally. At sixteen, I finally donned a backpack and trooped off to school – finally something ‘normal’, except that it wasn’t. I was attending a performing arts school in Melbourne, and travelling 1.5 hours on the train from Geelong to do so. Next, I developed an illness which no one could really comprehend because it wasn’t cancer or a broken arm.

“Five! You’re one of five? That’s so many kids!”

“Did you say you’re homeschooled? So you get to wear pajamas all day?”

“ Did you just call them jandals? They're thongs”

“So, do you even do any academics at VCA secondary school?”

 “So, you’re just tired all the time?”

So, you would think that after all that (and many more which I have not the space to recount) I would be prepared for the uber counter-cultural decision: To marry a nineteen year old boy, and become a Mrs. at the age of twenty.

I will never ever forget the day Ben got down on his knee...I was still in the grips of glandular fever, but feeling slightly better than usual. He suggested that we head down to Torquay beach with our thermos and tea bags, and watch the sun set – which if you picture it, is a fairly romantic thing to do, and very fitting for someone who is sick. He was even more smiley than usual, and undeniably excitable. And being a somewhat observant person, I had a very strong inkling that tonight was the night. The tide came up, and we had to move from our cave to a different one because we were about to get stranded. We drank tea and were happy. The sun went down. It was dark – and then Ben said he was just going away from a minute to the other cave, and that I could call out if I got scared....and then he splashed through the water and disappeared. I sat there, and sang a few songs into the darkness to pass the time. Then I got scared and called out because he’d been gone too long, but he didn’t answer or reappear. You can imagine my relief when he eventually came around the corner! He picked me up in his arms, and carried me through the water to the cave.....put his hands over my eyes, and spun me around till I was disorientated. When I opened my eyes, I saw the cave alight with t-candles, laid out in a perfect love heart shape. I won’t repeat his speech to me, but it finished with him kneeling down on one knee and saying that he loved me and wanted to be with me forever – would I be his wife? By now I was crying of course, and too teary to really take note of the beautiful diamond ring he’d chosen for me. There’s wasn’t even a little crevice in my heart which doubted that he was the man I wanted to marry. 

Some candles had blown out by the time I took this photo...

Monday morning came, and after a dizzy weekend of joy, an uncomfortable truth settled on me: I needed to admit my ‘ludicrous’ action to my conventional peers. Engaged, for crying out loud...with a diamond ring on my left hand, unashamedly sparkling the announcement which I was too afraid to speak of. I thought enviously of a couple of generations earlier, where this would have been bang on perfect timing for such an event....I wished that I was 26 years old, as I had always planned to be....

“The opposite of courage in our society is not cowardice, it is conformity.” Rollo May

I did it, and I lived to tell the tale, and even strengthened my ‘courage muscle’ in the process. Some people thought I was mad not to, ‘try before I buy’ and give away my life so soon, one lady thought I was 17, so she was shocked, and others were amazingly supportive. I soon after realised that it is foolish to be afraid of being different from others – do what you believe, and come what may. I decided I only want to conform where society has it right. It’s been said many a time that the people who care don’t matter, and the people who matter don’t care. How true!

While my friends were moving in together until such a time where things were no longer so honky-dory, we were signing a piece of paper saying we were in this life together, till death do us part. We believe the most powerful thing about love is commitment...that’s what makes the strongest relationships: The love of a best friend who doesn’t bitch behind your back, the love of a parent who will pick you up from anywhere at midnight, and the love of my boyfriend who said he wanted to do life with me (even a fatigued, complicated me), and figure it out when it got tough instead of moving on to another girl. So we committed - and I have to say, this non-conformist decision has bought more closeness and joy than I ever imagined possible. Even our fights are more stable due to the lack of the “will we break up over this?” question lingering in the recesses of our minds. While the title 'mrs' is not something I'll ever adjust to, I do love having a husband and being a wife!