This Dawning Day

“Veil after veil of thin dusky gauze is lifted, and by degrees the forms and colours of things are restored to them, and we watch the dawn remaking the world in its antique pattern.”
~ Oscar Wilde

 

I woke earlier than usual today. 3am. The night air was cold, the comforter pulled right up to my chin, warm and snug around me. Outside it was raining. Cities are so different to farms. I could hear the occasional faint slick of tyres on wet roads, the sounding of a train’s horn and then the click and clatter of the rails, the muffled roar of a jet engine as another plane lifted off and headed for far away.

In the dark beside me was Ben’s rhythmic breathing. My ankles were pinned by the weight of Nurse Bert’s heavy head. Harry Dog stirred, crept up from the foot of the bed, and then nestled in behind my back. Too early by far to get up yet, but not to meditate. I eased myself up into a sitting position, reached for my mala and began.

An hour later it was still dark. Still raining. Around me everyone slumbered peacefully in the pre-dawn quiet.

I would have liked to creep down beneath the covers and go back to sleep, but my mind filled with busy-ness. I knew there would be no more sleep today. Instead I slid out of bed as quietly as possible and shuffled for the door.

I’m always so stiff in the morning.

As my feet made tiny halting movements in the dark, more sliding than stepping, I suddenly knew my grandmother’s body as my own. This is the way she would walk, old and frail but stubbornly independent. There are not many mornings I haven’t shuffled in the past twenty years. Most times I move freely once I warm up. But sometimes I hobble all day.

On the way to the bathroom I do my daily check. Glands up. Morning fever. Throat not sore this morning. Good. Pain? I note all the places. I rate them on a scale of one to ten. I rank my fatigue. My level of alertness. Can I form thoughts? Is my memory there or gone?

When I hit the light switch I wait to see if my vision stays blurry or whether the world around me becomes clear.

Not clear.

I still have limited vision from my left eye. It’s been three weeks now, this latest stretch. A lyme thing. To be one-eyed means that the world around me softens and shifts to two-dimensional. I have no accurate way to judge depth or distance. You’ll know if I have an eye thing. I’m always covered in bruises from where I misjudged the edges of my world. Thank goodness Ben drives me where I need to go, and helps me cross the road or navigate obstacles.

I have a host of coping strategies, and once I get out of my mind and my body and into my plans and dreams I am just fine. Life rolls on. I have found so many ways to thrive and keep going despite current circumstances. Overall, my health has been steadily trending in the right direction. I remind myself of this. Much, much better. I am much, much better.

It’s still raining. Still cold.

Harry Dog has snuck downstairs now to keep me company at my computer. I cradle a mug of ginger tea to warm my hands and my insides, and he curls around my feet and goes back to sleep, one ear cocked for any possible sign that it might be Cafe Time.

I’m on edge today, as much as I am trying not to be. I am off to the hospital this morning for scans. An old problem. One that sat in the back seat with a band-aid solution as my doctors and I worked on more serious issues – like heart failure and multi-organ failure, all of which are now sorted. Health problems are always triaged. I understand that. But this one has caused me no grief for a few years. I’d almost forgotten it was there.

I admit it. I’ve had a crisis of faith these past few days. To enjoy an overseas vacation, to feel health and energy and strength in your body, to feel almost normal, and then…

…and then to have increasing pain, increasing fatigue, a sudden recurrence of old problems. For these problems to escalate and then keep escalating. For your doctors to be suddenly concerned and taking urgent action – more scans, more bloods, more tests, more scans.

Well, it’s taken me a while to get myself back on solid ground again. For me to drag myself off the floor and be ready for whatever comes next.

I’m up now. I’m ready. Or I tell myself that anyway as I sip my ginger tea.

It is ironic, I think, that at the moment when it all goes to shit for me (again!) the pipe in our city house bursts, the rooms flood, things become a soggy stinking mess requiring immediate action. And it has been a glorious distraction. Thank goodness. Maybe that was perfect timing after all. Symbolic too, of everything needing a major clean-up, re-install and renovation.

I’m okay, and I’ll be okay.

That’s a well-used mantra in my house. It works. Trust me.

I’d better dress now. Fasting bloods for me at 6.30am, and then Cafe Time for me, Harry and Ben, while Bert gets a little more shut-eye, all snuggled up on our bed.

Today will pass by in the blink of an eye and tonight I’ll be meditating again, waking in my own warm bed again tomorrow and reaching for my mala beads. I’m okay and I’ll be okay.

Much love to you all.

Nicole xx

Dancing Out Of the Lymelight

Green Dancer by Adriane Pirro

Green Dancer by Adriane Pirro

“Stubbornly persist, and you will find that the limits of your stubbornness go well beyond the stubbornness of your limits.” ~ Robert Brault

 

I’m off to see my Lyme Doctor today, and I’m hoping for a good report.

In the last few months I’ve noticed real and sustained change. I have more energy. People tell me I look better. My brain works and I can access words I’d thought long forgotten. I can read maps again. I can recognise and add numbers after more than twenty years of being terrified of anything to do with maths. Music on the page looks like notes and rests rather than spaghetti with splotches. My reflexes and balance have improved. I have less pain. More mobility. Fewer fevers and other symptoms. Finally I feel that my future is opening out in front of me, when for so long all I have known is the end of the rope and my fingers in a vice-like grip at that knotted end, stubbornly holding on.

I had a moment recently when I knew. Knew for sure that I had turned the corner.

I wa sitting on the edge of my bed, on the evening of the first day of my channelling retreat. It had been a big day, after many big days. It was late. The world was quiet. And I held my meditation mala in my hand, ready to pray and meditate for my students before I turned in for the night.

Suddenly my cheeks were wet with tears.

Here I was, sitting in this familiar room. I’ve held many retreats at this place now. It feels like home, in a way.

But something was changed.

I was changed.

Some years ago, when I ran my first retreat at this place, I had just been given a prognosis of perhaps six months to live. I was in congestive heart failure with dilated cardiomyopathy. My organs were failing. Every breath was a struggle. One side of my face was completely numb from Bells Palsy. Back then I didn’t know I had Lyme. I just knew that I was dying. Every footstep was a struggle. I fought so hard for every conscious moment. I was worried that I would never be able to do my work in the world. Never share my stories. Never reach out and help more than just this handful of people. Never have time to be well enough to enjoy life, or to make up to my husband the many years of our life we had lost already to this wretched illness.

I hummed with a brittle hope mixed with equal parts of despair.

Now, here I was, a few years post-diagnosis, with strength in my bones. No chest pain. No struggle for breath as I walked up an incline or a few steps. Inside me I could feel grace and power and energy. I could feel life force. I could feel possibility.

Somehow I’ve moved from dying back to living. It’s like someone flicked the headlights to high beam and instead of fumbling along the road in the dark I have a clear run, and a well illuminated path opening out in front of me.

All because some brave doctor was prepared to go out on a limb and diagnose me with Lyme. (But they wouldn’t treat me. It was too controversial, they said. A risk to their career.)

Another brave doctor treated me. When they got closed down there was another doctor there. And then another. So much secrecy. So much clandestine medicine. All to give me my life back without ruining theirs.

It saddens me that this disease is still so poorly recognised, that the effective treatment protocols for Lyme and co-infections are questioned, that people like me go undiagnosed for miserable decades, and even after diagnosis Lymies struggle to find anyone willing to actually treat them. It breaks my heart to know that Lyme doctors are persecuted for doing their best to help their patients find a path back to wellness.

The Lyme community is an awesome one. We share information with each other, and provide support when there is little to be had within our own networks or families.

Image from boxyblogs.com

Image from boxyblogs.com

I’m one of the lucky ones. I have been able to find a way forward. I could afford treatment. I had the ability to research and educate myself about health and healing. I’ve had a roof over my head, some income still, and a husband who has stood by me through the worst of times.

Finally, I’ve turned this corner.

I can’t quite find the words to tell you how that feels after more than thirty years of being prisoner to this thing.

My legs are shaking as I stand at the unlocked door of the cage that has held me trapped for so long. My hands are trembling as I push against those bars so that I might step towards freedom. I need this to be true for me. If it’s a dirty trick I don’t know how I’ll cope.

I’ll confess too, that there is a part of me holding back, waiting. Just in case… I need for this to be a lasting change, rather than the calm eye at the centre of a storm.

I’m still so full of dreams and plans. I’m humbled and hopeful that this might truly be my second chance.

I pray it goes well for me today. Here’s hoping.

Much love, Nicole <3 xoxo

No Blog Due to Dinosaur

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I am unable to blog this morning, owing to the fact that I am still in bed, trapped under a blue triceratops. Also, Lyme…

Sorry, I’ve had a rotten night. And I have one eye that refuses to cooperate.

Normal blogging should resume tomorrow.

Breathing Through The Pain #LymeWarrior

A Breath of Freedom by Iladya Portakaloglu

A Breath of Freedom by Iladya Portakaloglu

“Your breathing should flow gracefully, like a river, like a watersnake crossing the water, and not like a chain of rugged mountains or the gallop of a horse. To master our breath is to be in control of our bodies and minds. Each time we find ourselves dispersed and find it difficult to gain control of ourselves by different means, the method of watching the breath should always be used.”
~ Thích Nhất Hạnh, The Miracle of Mindfulness: An Introduction to the Practice of Meditation

 

Pain and I enjoyed a pretty intense relationship when I began my treatment for late stage Lyme disease at the beginning of 2013. My regime, which will last a minimum of three years, involves intense rotational use of various combinations of antibiotics, as well as diet, herbs and a myriad of other support tools. It’s a long road I’m walking, in order to regain wellness.

Recently, things have settled down a little. I’ve had more energy. I’ve been sleeping better. Pain has become an occasional thing rather than a stealer of breath and life-force. I’ve finally begun to feel good on my current meds combo.

That is, of course, until I brought in Drug Number Four.

I’ve slowly built up the intensity of three other kinds of antibiotic, anti-malarial and anti-bacterial that are the drugs on my current rotation. This combination was brutal to begin with, but I’ve reached the stage where I am now handling them well. Part of my treatment plan is to then bring in this fourth drug. It’s one I took earlier this year. It gave me fabulous longer term results, but it created a firestorm within my body while I was on it.

I’d been dreading bringing it back in. But of course I kept up this optimistic patter with myself, “You’ll be right, Nic. It will be heaps easier this time. It’ll be nothing like the last round.” I delayed taking the drugs too, because I wanted to be my best self for my recent retreat. So I took my first tablets on Sunday, seemingly without incident. I worked Monday, took all my drugs and didn’t skip a beat.

Then it hit me. About six pm on Monday night.

Oh God, I’d forgotten how intense the pain could be. That I would feel like I was dying all over again. That it would take all I had to bring my ragged breath back to some semblance of calm. Over, and over, and over again. All day. All night. Without cessation.

Quote from BullyVille

Quote from BullyVille

The good news? I’ll only need to take these drugs two days out of seven. It will get easier. It always does. Eventually. So, I’m breathing, and counting hours and minutes and moments.

I know, from previous experience, that the pain won’t kill me. That knowledge is my secret strength. I can endure this. One day, the pain will end, and I will be stronger, closer to healed, and I’ll have learned more about myself and the world.

It’s Friday today. I managed a few hours sleep last night. Today I’m a little better. Stronger. More determined. Sunday I’ll go Round Two with these drugs. Hopefully next week will be better than this week has been.

But it doesn’t matter. I’ll breathe my way through it. I’m in the killing zone. The bacteria that have made my life a misery are dying, so they can kick and scream all they want on their way out – just as long as they go.

I have things to do. Places to be. Trails to walk. Books to write. A husband who has his whole life on hold while I heal. So I’ll keep staring these squirmy little suckers in the eye until they back down.

Just watch me!

Image from Quoteko.com

Image from Quoteko.com

 

Requiem For A Lost Poet – #Lyme

Photo of Heather Askeland

Photo of Heather Askeland

“I don’t need a cloak to become invisible.”
~J.K. Rowling, Harry Potter and the Sorcerer’s Stone

 

I found out earlier this week that a fellow Lyme sufferer in the USA took her own life. I never met Heather, but I know her journey. All late-stage Lymies know, and understand, because so easily, that could have been us. The news of Heather’s death made me sad. So very sad. And angry. But anger won’t bring her back.

The news of Heather’s death made me feel helpless too. I never knew of her struggle until it was too late. This wretched disease that has wreaked havoc and destruction in the lives of so many, including mine, became too much for this young woman to cope with on her own. People need to know. It isn’t right.

Sadly, Lyme disease, like most ‘invisible’ illnesses has a very high suicide rate. Sufferers get worn down by their illness, by the cost of treatment, by the contempt of friends, family and many in the medical fraternity who don’t believe that they are sick. When you are desperately ill, and you can’t work, and you have no money and no safety net of family or friends (or you wore out your welcome, or spent your family’s last dollar) and you can no longer take care of the most basic survival tasks in your life, you run out options pretty fast.

But that’s not why I’m writing this post.

I’m writing to honour Heather Askeland as a poet, and an artist. I wanted to share her work with you. I wanted her to be remembered with the fullness of who she was.

This is a poem she wrote about selling her beloved violin to help pay for treatment:

the sold violin by Heather Askeland

the A string keens, a notch flat, lost
songbird carrying morning.

the sun is a steak knife slicing dust.
you crouch, release the zipper’s

low whine. case like a toothless mouth.
there is no music here.

no wooden neck to cradle
like a newborn’s head,

no thin steel creasing prayer
into fingertips. no satisfied tendons,

no sweat
other than the nightly fever.

you used to play Tchaikovsky.
your fingers were silverfish,

the audience thunderclap your
favorite drug. now bright lights spin

you like a top. snap you in two,
a severed dandelion.

you are lucky. illness is expensive.
you trade horsehair and childhood

recitals for antibiotics.
how many centimeters of soundpost

for homeopathic injections? for the
metronome of an IV drip?

how much varnish for hair loss?
for the skipping stone

pulse, for each battle between gut
and bread? which Bach sonata

for the skeleton memory?
your neurons are sunken ships,

the dead fish sing you lullabies, let meat
rot in cupboards and crackers grow freezer crystals.

for a moment you panic. wonder why
the case is empty. check the windows. the cats

are two otters in their sun pools.
you remember: the violin is gone.

the violin is everywhere.
it is white cells, methylation pathways

morning yoga sessions. medication three times
a day and herbs that taste like molding twigs.

the 1812 Overture blasts its cannons
with each push of blood from chest to toes.

no one can hear it but you.
your arms are warm.

the music never left, is waiting for you
to turn it up.

Image from wall alpha coders

Image from wall alpha coders

And this is the final video Heather made, her one last shot at trying to find help. As you already know, it never came.

 

Spare a thought for Heather today. Say a prayer, send a blessing, wish her peace. Honour her short life for the artist she was – not as her disease, not as a lyme warrior – honour her for her poetry and her caring heart.

Heather Askeland

Heather Askeland

A Short Walk

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“Many people nowadays live in a series of interiors…disconnected from each other. On foot everything stays connected, for while walking one occupies the spaces between those interiors in the same way one occupies those interiors. One lives in the whole world rather than in interiors built up against it.”
~ Rebecca Solnit, Wanderlust: A History of Walking

 

I’ve been cooped up for days, and yesterday afternoon I just needed to be outside. I’m not up for walking far right now. One of the meds I’m on for my lyme treatment has a potential side effect of stiffening ligaments and tendons, giving them increased risk of tear or rupture. Getting into bed last week I did my knee. As I lifted it off the floor I heard it go pop, pop, pop like a zipper unzipping, and the next thing I knew my knee hurt A LOT, and then of course it swelled. Off to the awesome physiotherapist (Thanks Simone!) next morning and then my knee had to be iced, elevated, strapped and rested.

On top of everything else…

But isn’t that always the way? 🙂

Yesterday I took a short stroll (hobble actually) around my front yard. Just to breathe the air, fresh from rain. Just to feel the sun on my skin. To put my face against the bark of a tree.

I stood outside and drew some breaths deep into my body. It made me feel better.

Maybe a short stroll might help you too.

Here’s my walk, in pictures…

Lilies in the cattle trough.

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Orchids flourishing in a crevice of the fig tree.

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Gazing up through the branches of the fig tree, my face pressed to its cool bark.

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Blue sky peeking through the clouds.

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The Hoop Pine in our front yard. Just beyond the fence is the eucalypt glade where Mr Grunty, the big male koala hangs out.

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Late afternoon view down to our front gate.2014-03-31 17.26.03Thanks for coming with me on my little stroll.

Much love to you, Nicole xx

 

Coming back to myself

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“There is nothing like returning to a place that remains unchanged to find the ways in which you yourself have altered.” ~ Nelson Mandela

 

I am sitting in a cafe at Byron Bay, and it feels like a small miracle.

After my six-week fever broke last night, and a powerful meditation shifted me past most of my pain, things have me believing that somewhere in the quiet dark hours of early morning I turned a significant corner.

Expect a return to normal blogging tomorrow. 🙂

Hooray!!! I have missed you. xoxo

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