I’m quickly learning through the Parfait Party that is the unexpected surprises that make life so sweet. The quirky, the thoughtful and even the downright confronting 🙂
So todays blog follows on from When life give you lemons part 1 to a little more unexpected tang in my Parfait. The Quirky, the Random and the Downright Confronting.
The Quirky and the Random…
One of my biggest sources of joy and giggles this week has come from a 3D logo created by Sam at Blue Crab Studio. Nowhere in my Parfait Party planning did I factor in a set of over sized novelty parfait glasses wrapped in a wood and perspex box. I walked down the hall way the other day to find a BIG quirky 3D Parfait Party logo staring back at me.
Not only is it a piece of art, but a piece of functional inspiration: Sam has built in a removable lid and little note card giver. Each day I can add a thought or a piece of inspiration to the great parfait of life! What a wonderful crazy, unexpected idea.
This and many other wonderful big and little and random things that my friends and family have been working on sometimes without my knowledge, remind me that much like the lemons in my letter box last week, there are many more people at work for the Parfait Party in many more creative and interesting ways that I will ever be able to imagine.
Lemons: two large over sized parfait glasses.
Lemonade: A beautiful, inspiring functional diary / artwork
Here are just a few examples of how people in my life have been busily making lemonade:
A Kiwi ( New Zealander) is planning a make your own Parfait Party at her home.
Kombi’s against Kancer concept stage
Parfait Party mentioned in blogs
A gift of glass rainbows to travel with.
SL friends – a giant marathon.
Friends and family sending letters to the media.
Family contacting potential sponsors.
A local group is planning a gold coin donation afternoon tea.
A fun name / numberplate competition.
An almost 5 year old telling me to not worry to just think about the fun I will have in my van.
Sometimes, as stated in an earlier blog I can get really hung up on the big things and trying control things. But I know firsthand that the surprises and little gestures mean the world to us and really do have the power to change attitudes, outcomes – and heck – probably even the world.
So I’ll be looking for opportunities to pass the lemonade forward wherever possible. Sometimes it’s easy to think that I have too much on my plate or that I no longer have anything to give – but we all do have something to give. A smile, an hours help, a loan of something fun, friendship, or a crazy 3D artwork and glass rainbows!
Everything – no matter how small, quirky or unexpected – influences the end goal.
And the Downright Confronting
So we’ve talked about good things begetting good things. But what about proper lemons. You know those downright crappy things that just darken the day? I’m going to bust out the silver lining cliche soon. Twice in recent weeks I have had rather “dark cloud” conversations with professionals about the exit plan for palliative care. Umm … that’s awkward.
The professionals (both involved with people in various states of health) were so busy ticking boxes and being inconvenienced by my ongoing palliative care status – not even 6 months yet, that they were perfectly oblivious to the fact that getting out of palliative care generally involves a six foot box. I guess this may not have arisen if I had moved through the system in an expected and efficient way …
Admittedly I made some assumptions that employees from a health transport service and a superannuation fund would have been exposed to the terms ‘terminal’ and ‘palliative’. Surely I wouldn’t have to spell it out for them would I?
To be fair I know that most people (myself included) don’t really understand ‘palliative’ until it touches our lives, so for the sake of clarity…
…palliative care is essentially end of life care. You may not die for several years, but palliative care is the term given when your treatment is no longer focused on a cure, but instead on quality of life and comfort for you and your family. It is care for those who have a condition from which they will not recover.
The community health transport service is an amazing service for people on the Yorke Peninsula to access treatment and specialists in other towns (e.g. Wallaroo, Adelaide) at minimal cost. It is an absolute godsend, and I don’t wish to detract from its immense value in retelling this little dark moment after all we all have our off days.
Anyway back to the story, I have been accessing the transport service for months, using the health bus when I am physically able but changing to a health car when the pain is too much for extended bus travel. Upon booking a health car recently it appeared that my expiry date had passed, at least for car travel.
Transport Coordinator: “I’ve got you down for the bus.”
Vanessa: “No, I have been taking the car while I getting my leg tumour treated”
Coordinator: “Well, you have been using the car for a while now and it’s only a short term thing it’s really for the frail-aged or disabled.”
Vanessa: “Or in palliative care” I added
Coordinator: “Yes but that is only supposed to be SHORT TERM. (Sigh) It can’t be a long term thing. How much longer will you be in palliative care?”
Vanessa: “Umm until I die … I suppose?”
It’s quite lucky that I have an odd personality. I can imagine that telling people that they have overstayed their palliative care timeframe could be very distressing. I am fairly open about the subject but even I found this somewhat confronting. I raised a brow, grinned and said to Mel that I felt like apologising for living too long.
Even worse was the interrogation from one of my superannuation funds. Earlier in the year I turned 55 and given my big adventure and having no guarantees on old age, I decided to draw down my super and use it for the Parfait Party. After a long and non-productive discussion with HostPlus, my patience was wearing thin. The super rep seemed determined to hold on to my superannuation. We ended up here…
Super Rep: “So you are retired?”
Vanessa: “Yes, not by choice, as I said before I have a terminal illness and am in palliative care, I will not live long enough to retire.”
Super Rep: “Ok. So you will be returning to the workforce at some stage then?”
Vanessa: “No, (eyes roll to the ceiling) I’ll be dying instead.”
Give me strength! I had to nearly grunt the facts ape style at him before he would loosen his grip on a simple form. “ME NO WORK – ME SICK – ME NEED SUPER NOW – NO LATER – ME DIE SOON.”
Again, I was thankful to be a fairly resilient person with certain tolerance about such things, people and systems. I know end-stage disease is a very difficult position to accept and I was mortified (not for myself) but for all the people in my position, especially those who are less resilient who have to justify their requests to bureaucrats in such demoralising terms: “Please sir, I need this because I am dying. Yes Sir, I promise I won’t go back to work”.
And so at long last we reach the silver lining:)
Lemons: A crappy disease with no cure, and a world that finds it difficult to deal with these conditions. Hanging around in palliative care seems to be a bit on the nose.
Lemonade: Sharing my story and helping people understand what is means to be in palliative care.
I am in Palliative Care
I am alive; please don’t write me off or treat me as if I was already dead.
I am ill and I will probably die from my condition, that is if the proverbial bus doesn’t get me; so please understand I might have new physical, mental or emotional limitations.
I am ill and I am going to die far sooner that I imagined, there are uncomfortable things we will need to deal with.
I am still the same person, sister, friend, son or parent I have always been; Please treat me the same. Our relationship doesn’t need to change.
I may have things I wish to do or I may change my priorities. Please try to understand. My decisions might not make sense to you, but they are decisions I choose to make, and, sometimes they are ones I have to make.
I am interested in what you are doing, feeling and thinking, let me wipe your tears and hold your hand too – protecting me from unpleasantness doesn’t help – it makes me feel alienated.
I do want to hear what you think or dream of, we don’t always have to talk about me 🙂
I do want your honest feedback and ideas – just because I am ill you do not have to let me have my own way all the time.