Claire

Let’s change it up.

This morning I came across this video, Claire Wineland on How to Live When You’re Dying, from an amazing young woman, and she has a very fresh and inspiring view on living with an illness that is incurable.

I almost feel like I don’t fit in any category with her because her illness is very physical and her life expectancy is so short. Yet here she is talking about the pitfalls of dating, the joys of living overseas and travelling, the experience of going to university, and the fun of going out with friends. Almost as though she wasn’t sick.

How’s that for a radical life? Putting your illness in the corner, and going on regardless.

She embraces a life of living so that when she dies, however soon that may be…and compared to most of us its very soon, she will have lived a full life that she can be proud of. Her fears? That she won’t have lived. That her illness will have been her whole life. That she lived to die.

I tell you, I admire this girl so much! It is hard not to think about your illness all the time: how it affects you, how its changed your life, what you don’t have compared to other people. And I don’t have a life expectancy date hanging over my head! Sure, I’ll always have this illness, and there’ll always be issues to deal with, but death is not a guaranteed part of the package. Not any more than any other person in the world.

Check out this girl.

Whether you have a chronic illness or not, her take on life is so refreshing and I feel like it gives me a kick in the pants to try a new philosophy. This is not about being fake and pretending nothing is wrong. That is never helpful, or useful. Something is wrong; lay that on the table to begin with. But life goes on. This is about finding a way to live around your illness, and still living a fulfilling life.

It will always be something of a struggle to push past illness to life. But it can be done, at least some of the time. So let’s give that a go!

Find a way to glow

 

For an extended version of Claire’s interview video, check out Cystic Fibrosis taught me there’s no “normal life”

I can’t seem to find my balance

I can’t seem to find my balance, by Danika Sanderson, written 28/1/2014

I can’t seem to find my balance.

Between living and dying, between singing and sighing,

I can’t seem to find my balance.

 

I can’t seem to find my balance.

Between coming and going, from keeping to throwing,

I can’t seem to find my balance.

 

I can’t seem to find my balance.

Between laughing and crying, between loving and fighting,

I can’t seem to find my balance.

 

I can’t seem to find my balance.

From grinning to frowning, from swimming to drowning,

I can’t seem to find my balance.

 

I can’t seem to find my balance.

I’m here and I’m there, “have to” be everywhere,

I can’t seem to find my balance.

 

I can’t seem to find my balance.

I’m up and I’m down then I’m flat on the ground,

I’m carrying the weight of the world around,

I can’t seem to find my balance.

 

I can’t seem to find my balance.

From gorging on food to soothe my mood,

From guilting myself about eating that food,

From kicking myself to the curb and back

For eating too much and getting too fat,

I can’t seem to find my balance.

 

I can’t seem to find my balance.

From “too tired to care” and “life is not fair”

To “how lucky am I to have such a great guy”

To “what if I fail?” and “what if they hate me”

To “I am so happy” and “they must all rate me”,

I can’t seem to find my balance.

 

I can’t seem to find my balance.

From being a friend to hiding away

And avoiding the customary “how was your day?”,

I can’t seem to find my balance.

 

I can’t seem to find my balance.

From confident speaker to introvert girl,

From stomach of steel to wanting to hurl,

From conscientious to “that’ll do fine”,

I’m “stressed out I’m late” but still never on time,

From anything for anyone to “sod them all”,

From standing up straight to curled in a ball,

I can’t seem to find my balance.

 

I can’t seem to find my balance.

My logic says go but my heart rate is thunder,

My sane brain agrees but the renting asunder

Of nerves once so stable but now run amuck,

Is leaving me feeling like one sitting duck!

I can’t seem to find my balance.

 

I can’t seem to find my balance.

Can’t walk in the dark, but running’s okay,

“Just push through the barriers and all’s well”, they say,

“Just exercise, eat well, sleep well and drink tea”,

“Avoid caffeine and sugar and alcohol’s three”,

“Just keep a good attitude, you’ll be alright”,

But what if they’re wrong and I lose this huge fight?

I can’t seem to find my balance.

 

I can’t seem to find my balance.

“What if…?”, “What then…?”, “What next?” I wonder,

The evils, the outcomes, the dark side I ponder.

I can’t see the good, the pleasant, the happy,

But then all at once, I become happy chappy!

I can’t seem to find my balance.

 

I can’t seem to find my balance.

I’m inspired; I’m keen as mustard to learn,

Then gloom, disappointment, my hopes they burn,

Again motivated; success I now yearn,

But failure still looms at every turn.

I can’t seem to find my balance.

 

I can’t seem to find my balance.

Why cannot I just for ONE day be level?

What would it feel like to sing and to marvel?

Instead of dwelling on doom and gloom

And walking around restless from room to room,

I can’t seem to find my balance.

 

I can’t seem to find my balance.

I remember now often the days gone past,

When balance was normal, expected to last

All day every day and all life through,

I’d never have thought I’d be like this, did you?

I can’t seem to find my balance.

 

And yet there’s still hope at the bottom of the jar,

That “one day”, “ONE day”, maybe not far,

Maybe real close, maybe real soon,

I’ll be singing my song to a different tune.

 

A tune that thrills, and lilts, and strains,

To glorify One who holds the reigns,

Who shows to me His Love and Care

And helps me realise the burden’s to share.

Who shows me that balance is always found,

When God comes first and is followed around,

By everything else, that’s solid ground

For finally gaining my balance.

Copyright Danika Sanderson, 2014 – reproduction only with written permission from the author.

I wrote this poem all in an afternoon on my way home from work one day.

I was getting sick of my mood swings, of depression, of anxiety, and was dearly wanting to go back in time to when life was running on an even keel.

I’d never realised what a privilege it was just to live life with regular emotions, regular response to stress and plenty of serotonin and noradrenaline.

So I started thinking this thought in my mind; I can’t seem to find my balance.

I can’t seem to find my balance. Sometimes I’m full of life and running around, sometimes I’m suffering from suicidal thoughts and wanting to escape life. But I seem to be missing the middle ground where life is straightforward and easier.

I started thinking, I can’t seem to find my balance – I’m up and I’m down…what rhymes with down? Around, ground, mound…what works with I’m up and I’m down? I’m flat on the ground! Boo Yeah! I’ve got myself one verse.

And so it went on. I raced home and grabbed out an old school book and started scribbling. I wrote most of this poem exactly as it appears here; somehow I just got on a roll. Some verses needed some tinkering to make more sense. Some verses got put together, some got taken apart.

I’m really proud of this poem. Not only do I find it a fun rhyming scheme, based partially on limericks and partially on Dr Seuss-type rhyme, but I’m really pleased with how the lines came together to tell the story of where I was at this time. The fun rhyming contrasts with the serious content, and helps me feel better about how I’m feeling.

I’m still kind of in this space now, even though it’s nearly 4 months later. Balance takes a long time to achieve, as it turns out. I have good days, I have bad days. I had a couple of weeks up to last Sunday when I got ahead of myself with how well I was feeling and how much I was achieving and thought I was cured! Then the last week sucker punched me and landed me in bed for most of the week, having 2 naps a day every day!!

So balance, a tricky thing to achieve. Elusive, delicate, difficult, like walking along a fence or tightrope. A fickle wind blowing one way, a strong breeze blowing the other way and off you go smashing down and breaking apart on the ground! Then it takes time and effort and emotion to get back up, brush off the debris, clamber all the way back up onto the fence, gather together your scraps of confidence and faith that there is a happy ending awaiting up ahead, and take the first step again! Nursing your injuries and disappointments, carrying baggage from previous attempts, trying hard to have hope and enthusiasm again.

So today is Day One after that long week of tiredness, total lack of enthusiasm and motivation, crippling lack of energy and a fat lot of blergh!!

We’re putting that behind, pushing on to find a new plan, a new way forward to try to get up on the fence, hands out balancing my weight, eyes fixed forward, trying for hope.

A great friend gave me this awesome print to go with my poem that I now have framed next to my dining table:

just balancing, girl on rocks in heels

A gorgeous print that I have framed in my living room

Onwards and upwards!! Balance, it’s time. I’m here waiting, I’m ready. Let’s go!!