A Crazy Little Thing Called Hope

When my mother was dying, she thought God was going to heal her.  It was a crazy little thing called hope. She thought it because He’d promised her that in the scriptures that she’d religiously memorised and spoke aloud every day.  She was a woman of faith, and that meant that even though it didn’t seem like she was being healed, she believed it with every fibre of her being.  Her faith was so strong that on the day she was admitted to hospice, she asked me to take a ‘before’ shot.

“What do you mean?”  I asked, already concerned.
“A picture of me with this tumour, before God heals me and it is gone.  It will be important evidence for when I am telling people all about it”, she asserted.  Then she stood for the photograph, beside her last bed, her tiny frame almost overwhelmed by a giant tumour in her abdomen.  She maintained this kind of denial (it was the only way I could understand it, to call it that) for as long as she could.  She held on to it valiantly.  I was so horrified by it, and by the visitors who came in and prayed healing prayers. I was afraid that she would miss the opportunity to say the things she might want to say, and to hear the things we wanted to tell her, about how much we loved her, about our need for her.  In growing desperation, I spoke to the hospice counsellor.

“We’re not built for mortality,” she explained.  “Everything about the human condition is built around the need to survive.  It is our strongest instinct, our greatest drive.  How can one face one’s own death?  There isn’t a right way.  There is only the way that works for each individual.”
I went back into my Mum’s room and sat quietly beside her.  Memorising her hands, her fingernails,  the colouration of her skin.  She seemed to be asleep. I listened to each breath, each one painfully bought.  Something broke inside me.  I think it was my heart. I thought about her beautiful self, struggling against a reality she didn’t want.  I thought about how tired she must be, fighting for air, clinging to hope.  I didn’t want to wake her, so I cried my silent screams into the sheets of her bed and drowned my despair in tears that ran all the way to the sea. My Mummy was leaving me.

And where was her God? When she needed comfort, of all the times that her faithfulness should have been repaid with peace, where was hers? My heart welled up with compassion for her, as she gripped on to her last vestiges of hope. So I stopped trying to have the conversations of dying.  I let Mum say what she needed to say, when she could; so she said what she felt to say, not what I thought she should.  I read her Psalms when she cried out.  I held her hand and I slept beside her. I did all the things a good girl should, and then: she was just gone from my world.  Her hand no longer soft in mine.  Her heart no longer loving mine.  Just gone.

And now, my friend Kellie; also, gone.  So recently that our hearts and heads can’t take it in.  She wrote to me about hope many times in the months before her treatment.  She considered calling her blog about stem cell therapy “A Crazy Little Thing called Hope”.   These are her words about hope:
“…the whole hope thing is pretty integral to me as I was seriously losing hope. Maybe I’d even lost hope – don’t tell anyone!! But just having an inkling of hope made such a difference and it was so surprising how quickly the hope gathered momentum and how it then sort of manifested its own good luck”.
Then I found this little meme and sent it to her, but now I look at it and I wonder again, where was her God?   Kellie has gone too.  And she had so much hope.  But it didn’t keep her alive.

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And then, in this dark place of loss, deep in my remembrances of these two extraordinary women, I wonder, where has my own hope gone?  Has it evaporated?  I don’t feel hopeful. Will it return? What tricks of my mind will I find to keep me pushing forward, seeking help, searching for answers?  Is there something I can do to find it, or do I have to look for it, like a tiny dandelion seed floating on the breeze, passing by right in front of me at the perfect time.  Is hope that ephemeral?  My tired brain is weary of the measured and sane approach.

Kellie was right, it is a crazy little thing, hope.
But maybe it is all we can do.
Maybe it is all we really have.

Do you have hope?


She’ll Make Her Way


One of my favourite music artists is Natalie Merchant.  I love her lyrics, her voice.  She writes songs that seem to come straight from the heart …of me.  My brother, Brett introduced me to her when he was clearing out his collection of CD singles one day, way back in the nineties(!)  That day, he gave me a few CDs that today are still my favourites.  “You’d like this” he said, handing her over.  And I have loved her ever since.  Thanks bro.

Natalie sings:  she’ll make her way.  And that is what I am endeavouring to do.
I am over waiting for a certain doctor to care about my case enough to be proactive.  I am taking action myself.  Tomorrow I’m off to see a private specialist in the hope that I can raise a few questions with him and in particular, in the hope that I can get a referral to a particular Neurologist in Australia. He is on the eastern seaboard, treats other patients with Dysautonomia and is less likely to say “Nobody here knows anything about it” and consider those words to be a full stop to my concerns.

I am cautiously optimistic.  I don’t know if tomorrow’s specialist will say “That’s not how we do things” or “I can’t refer you to overseas doctors”… both of which have been told to me before.  I hope, because I can’t help it.  Yet I am cautious because my experiences have taught me that some doctors egos (or arrogance/ignorance) are bigger than my needs.  I keep saying to myself: Brace yourself, Rach.  Don’t get your hopes up too high

Until now, all my medical appointments have been within the public system.  It has crossed my mind that maybe, being a private patient this time, therefore, a ‘customer’ I might get better ‘service’.    But in a nation not known for it’s customer relations; I’m wrapping myself up in some wait-and-see mentality. It will be interesting, I’ll let you know how it goes.

Part of my preparation tomorrow is to get my medical files into better order.  The picture below is how my documents are filed at the moment.  I’ve already filed each bit of paperwork under it’s category, now I need to date order the papers in each section.  The new doc already has a brief medical history and a powerpoint presentation from the Grand Round that was done on my case.  I hope he has managed to look at them.  The rest of the info I will comb through today and pull out anything else that might be useful.   Who knew being sick meant being good at admin?!


My cautious optimism is being meted out quite a bit lately! Blogging is such a powerful tool.  Since I started my blog six weeks ago, I’ve had more than 30,000 page views.

Screen Shot 2014-07-02 at 6.45.13 pmI did hope when I began my blog, that maybe someone with some medical knowledge would read it and have an idea occur to them.  And last week, a beautiful and hopeful email landed in my inbox.  A doctor in Christchurch emailed me, wondering if perhaps a certain aetiology had been overlooked that might explain some things about my muscle weakness, occasional gait issues, achiness and episodes of paralysis.  I am busy researching and exploring the possibility of her ideas holding some answers for me.  See why there is so much optimism around the place? 🙂

I love the song “Wonder” because the story is about a girl, like me, who is different.  Of course, not exactly like me; there are no doctors coming from distant cities just to see me… I wish! Guess that is why I am planning to take me to them! This song resonated strongly for me. Have a look at these lyrics:

Doctors that come 
distant cities

Just to see me
Stand over my bed
what they’re seeing

They say I must be
one of the wonders

Of god’s own creation
And as far as they see
they can offer

No explanation

Oh, oh, I believe
Fate smiled and Destiny
as she came to my cradle

“Know this child will be able…”
laughed, as my body she lifted
“…know this child will be gifted,
With love,
with patience, and with

She’ll make her way…”

I like to think I’m like that girl. Making my way, with love, with patience and with faith.  Some days there is more of any one of those than the others, patience is a bit sparse in my arsenal. Overall though,  I’d say I’m making it.

Sometimes I do wonder.  Why?
Other days, I think I might just be

one of the wonders
of god’s own creation!