say nice things

found

Some people say unhelpful things, lots of people say nothing at all, and a few say the perfect thing – something empathetic, real, comforting. Here’s a list of five comments which have warmed my heart, and would probably do the same for others.

1. “Wow. That sucks!! That must really suck for her. ”

At first Ben told his colleagues that his wife had ‘health problems.’  But as his relationships strengthened, he started letting off the ‘chronic fatigue syndrome’ bomb. The other night he told me that his friend reacted in this refreshingly warm manner.

Yes, it does suck! That simple heartfelt comment seems to sum up the frustration at having reached a nasty stand still at such a young age. This response is perfect, because I can join in and sit for a moment in the reality that this illness is not even close to fun. His work friend got that this was bad, real, and sad.

2. “Please feel free to call it off at late notice if you need to.”

My younger brother wrote this to me. It is possibly the most comforting statement I have ever heard. He said late notice. How nice can you get? Just to know that if my body chucks a hissy and I can’t fulfil our plans, he won’t be surprised or annoyed. The pressure if off, and I thrive on no pressure.

 3. “I have a cousin with that.”

Yippeeee! Not glad that your acquaintance is sick...but, if you have a relative or friend with this illness you probably have a faint idea of what I’m talking about. I love to know that this illness isn’t so unheard of or invisible.  

4. “When I had a cold/flu recently, I thought of you and can’t imagine how you live with that all the time.”

This makes me want to sob. You get it, you have tasted my never-ending sickness, and the fact that you realised what I am going through makes me feel so understood and loved. You know that ‘tired’ is the wrong word for it entirely and I want to hug you right now.

5. “I’m sorry you can’t come. That must be so frustrating for you.”

Usually when I cancel, I get the standard, “Alright, that’s ok.” But what I really long for is them to realise that it’s not just them who is put out. I am put out, probably even more than them, because I really wanted to come and I’m not well enough. And because I repeatedly can’t attend things, I am starting to get really over it.

I feel so privileged to have heard these things{and many more}, and to have such beautiful people in my life. When the pain can’t be taken away, love is a balm.

"Be kind, for everyone you meet is fighting a hard battle." 

Plato

"Rejoice with those who rejoice. Weep with those who weep." 

Romans 12;15

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 14, being a Somebody}

“Like city dwellers who no longer notice the polluted air, we breathe in the atmosphere of ungrace unawares. As early as pre-school, and kindergarten we are tested and evaluated before being slotted into advanced, normal or slow track. Test papers come back with errors, not correct answers, highlighted. Ford Motor Company grades employees on a scale of 1 (clerks and secretaries) to 27 (chairman of the board). You must be at least Grade 9 to qualify for a parking space: Grade 13 brings with it such perks as a window, plants and an intercom system: Grade 16 offices come equipped with private bathrooms. Justice departments and mortgage companies cannot operate by grace. A sports franchise rewards those who complete passes, throw strikes, or make baskets, and has no place for those who fail. Fortune Magazine annually lists the five hundred richest: no one knows the names of the five hundred poorest.”

Philip Yancey, Grace

It’s not really surprising that I question my existence now that I am fully dependant, and meritless. I feel like a Nobody because every Somebody in our world has to earn their way to Somebodiness and I can’t anymore. I can't, and it doesn't feel good. I’ve always defined myself by my achievements, and now that I can’t achieve, I wonder where on earth I fit in?

But then there’s this bizarre and wonderful grace thing, where things aren’t earned or strictly fair. I have a meagre grasp of it. I just know that grace doesn’t care about what I can do, and that we need more grace in our world because there’s enough ungrace. Grace seems to me a lot like unconditional love.

I was looking through HONY and a wizened face appeared, a man playing a wooden flute. The music drew me in, but then I read what the man had said and it seemed to sum up every confused thought I have had regarding me and how I fit into the world now that I am ill.

“Don’t look to other people for validation. Your birth was your validation.”

Human of New York

I was born a little red squishy 7 lbs of girl. I was loved for just being a human being, even when Mum first discovered that I was in her womb, barely formed, barely functional. I didn’t acquire my validity to exist once I’d done something impressive, or sacrificial, or beautiful. I am not valid because of what I do - but because I was born and I make up one of the millions of souls who exist because they were created.

“Your eyes saw my unformed substance;

in your book were written, ever one of them,

the days that were formed for me,

when as yet there was none of them.”

Ps 139

I only discovered Humans of New York a couple of weeks ago, but it was love at first sight and every sight since.

I am overwhelmed by the beauty and uniqueness of every soul captured. When I trawl through the photos and hilarious or sobering quotes I feel less alone because there are thousands of humans going through highs and lows simultaneously. I feel community.

  

never think never - thoughts on getting better, finding love, and whatever else.

Endlessly sick.

I feel it’s endless, but of course it’s not. It hasn’t yet been 5 years. 

But because I can’t see the end, I think there won’t be one.

Last year we bought home our precious dog. He is my fur kid, best friend, blanket and all day entertainment. The novelty is yet to wear off. Of course we wanted a good doggie, so we took him along to puppy school and read books on training.

His extreme excitability meant we moved at snail pace through obedience school – he was the vocal, distracted, bark at the other puppies, dig holes, sit the wrong way, and ignore commands kind of puppy. He was the puppy who had to stay in pre-school while his peers were moved up. If he were human he would certainly have been diagnosed with Attention Deficit Hyperactivity Disorder. 

Ben wanted to quit after two weeks. We walked away with our eyes averted because he was so mortifyingly yappy and squealy. But our trainers said he would get there in the end, he was just a young hyper crossbreed. I kept asking them every week, are you sure? Are you reeeeally sure? Because I see no progress.

We were determined to train him to heel at our side on the left, as is recommended for leadership reasons, rather than let him pull us along tractor style. The romantic evening stroll turned into night time training terrors. No more, ‘How was your day babycakes?’ and a lot more, ‘HEEL Wolfgang!’ He would pull again two seconds after his last correction. I would come home with blisters on my hands from restraining him. The last few months, hope of him ever walking without pulling waned. I was contemplating allowing tractor style and giving in on all training philosophies. Is there anything worse than effort put in with no returns? {Ok, probably. But, it’s fricken annoying.}

And then it happened, seemingly out of nowhere. The first time he walked by my side, no tugging, no blisters, I thought it was a fluke or serious illness. But it happened a second time. And a third. His was not gradual progress over a year; it was as though the light bulb finally went on inside his stubborn fluffy head after 12 months of rebellion and he’d figured out that it was in his best interests to heel. He has occasional silly excitable days where heeling does not happen, but this is now the exception.

Whenever I walk him now I think to myself ‘that might be what happens with me’. I’m going to struggle along and feel like I am going nowhere at all. And then one day, the time will be right. My body will just start to function like it used to. I don’t get the power to decide this; but it happened like that when I made massive progress last summer – swift and magical. I was so shocked by my improvement that I cried often; I thought it would never happen. There’s no warning bell for life events: today you will meet your life partner, today you will conceive your long desired baby, today your health will turn the corner.

It’s illogical to think that because it’s not happening now, it won’t.

Never think never.

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

words for wednesday {page 5, love}

Check out this gorgeous store, all made in Melbourne. I am in love!

“If you cannot do great things, do small things in a great way.”

Napoleon Hill

I want to do great things. It plagues me almost every day, this desire to be doing something far more interesting and world-changing than this. 

The mainly homebound life is the most humbling experience I have ever been through. Staying in this little house achieving nearly nothing is as far from my life plans as you could get. Some days as I sit saving energy, I just feel wasted. Is it vain to think I am being wasted?

I wonder what on earth is being accomplished by this. And I wonder if I could start a business, or study at home, or do something, anything, which even nearly resembles great. This is partially because I feel mentally unstimulated, but also because it would make my life closer to normal, and more ‘respect worthy’.

I think these things even though I know in my head that where-ever I am placed, I can make a difference. Because my worth is so tied up in what I achieve and accomplish, you can imagine how I have to battle to believe that I am still living a worthwhile life. But while these thoughts flicker through my head, I know one thing: I can still love where I am, and that is the greatest thing.

“Let all that you do be done in love.”

1 Corinthians 16;14

“I have learned silence from the talkative, toleration from the intolerant, and kindness from the unkind; yet, strange, I am ungrateful to those teachers.”

Khalil Gibran