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!

 

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

Canberra Day Twenty Eight

[Saturday, 8th October 2016; 10pm]

Another lovely day. Any day now that has sunshine and warm temperatures is a good day. The number of rainy or cold days has outnumbered the sunny lovely days so I’m not wasting any opportunity to get out when I get a good one, just with sunscreen on this time!

It was going to be good day anyway cos hubby’s brother arrived last night from Melbourne for the weekend. He’s only one week back in the country from England where he taught in a select entry girls school for the 9 month teaching year, and then most recently from 3 months backpacking around Europe. SO much to catch up on! And he’s a green thumb so that suits my interests!

First of all brother in law and I hit the National Arboretum because it was their open day. We got the usual talk at the discovery centre, checked out the fascinating bonsai exhibition and then went for the drive through the lower section that was just open today; usually closed to visitors so you’d have to walk all the way through, which is a long way! The whole arboretum is 300 hectares!! Lots of walking, and lots of it steep. A very interesting place, I think there’s plenty of scope to go again, putting in mildly! And the views! Well you can see for yourself. Lastly we checked out the cork trees which are an amazement on their own. It was intriguing to hear how the Burley Griffins planned for all of this a long time before it came to be.

Cork trees brought to Australia by Burley Griffin in 1912, showing evidence of harvesting which can only be done every 10 years, and may take up to 3 crops to get the best quality!

Home for a yummy lunch of nachos, we are being very spoilt here! Then an afternoon trip with EVERYONE to Floriade! Finally got hubby there after the disappointment of their night festival being cancelled for wind and rain. And our hosts came, and brother in law. Always beautiful, but especially in the sunshine and with good company. It was awesome to see that the tiny Purple Swamphen chicks are growing up, feeding themselves and much bigger than the first time I saw them a couple of weeks ago. I’m glad that the crowds haven’t phased them or their parents; it can be very disruptive having people near their nest or young…but these are all just going about their business. It was incredible to see the change in all of the garden beds as older plants have gone and new plants have come up. It really has to be seen to get the full impact.

Another amazing fact is that I took my meds on time last night, and lo and behold I woke up on time! 7am! Other than hubby who was already out riding, I was the first one downstairs this morning! Some kind of record. By 5.30pm when we got home from Floriade though I was feeling pretty feeble! So nap time, then dinner, now bed!

But my camera is upstairs with my sleeping husband so I’ll post this tomorrow when I can get at the photos.