I wake invisible.
I make a needle
from a porcupine quill,
sew feet to legs,
lift spine onto my thighs.
I put on my rib and collarbone.
I pin an ear to my head,
hear the waxwing’s yellow cry.
I open my mouth for purple berries,
stick on periwinkle eyes.
I almost know what it is to be seen.
My throat enlarges from anger.
I make a hand to hold my pain.
My heart a hole the size of the sun’s eclipse.
I push through the dark circle’s
tattered edge of light.
All day I struggle with one hair after another
until the moon moves from the face of the sun
and there is a strange light
as though from a kerosene lamp in a cabin.
I pun on a dress,
a shawl over my shoulders.
My threads knotted and scissors gleaming.
Now I know I am seen.
I have a shadow.
I extend my arms,
dance and chant in the sun’s new light.
I put a hat and coat on my shadow,
another larger dress.
I put on more shawls and blouses and underskirts
until even the shadow has substance”
~ Diane Glancy
It’s been easy, in recent weeks, to forget for hours at a time, or even days, that beneath my skin lurk a host of bacteria. Lyme, bartonella, babesia and some other nameless beasts. They drill through the flesh and fluids of my interior. Many have been killed over these past two years as I have flooded my body with antibiotics, herbs and essential oils. But not all.
It’s the ones that remain which are so bothersome. Some have not been well targeted by any protocols I’ve yet undertaken. Others have cleverly changed form. They deconstruct parts of me and then rebuild themselves with pieces of my DNA, rendering themselves invisible to my immune system. They slough their cell walls and then slip into my own cells soundlessly, hidden from view. Hidden from drugs. Hidden from so many kinds of treatment.
These past weeks I haven’t thought much about all of these pesky invaders. Instead, I’ve tasted normal. I’ve known delights lost to me for so long I’d feared I’d never know a time for them again.
My body is stronger. My mind is working better. My immune function is the best it has been in years. So my docs asked if I felt ready for a round or two of more aggressive drug treatment before I went back to gentler, more natural methods of healing. Intuitively for me it was a yes – before I even got my bloods back. Yes. Ready. So, we began last week.
I’m lucky – I had the luxury of some free time before I need to be functioning well again for work. Weeks I had slated for writing time and a holiday before I gear up for my next retreats became the perfect opportunity for embarking on new treatment adventures. I knew this was right timing. It all seemed to fall so easily into place for me.
Except that I’d conveniently forgotten just how horrible such treatment adventures can be.
It started with vomiting and pain. My body did not like the drugs. Or what they were doing to me.
The misery ramped up as the bacteria within me began to die. Glands the size of golf balls. Night sweats. Fevers. Chills. Seizures. A tongue that rolled around in my head unable to grasp at words, or to make much more sense than a drunk. A brain on holiday. Night and day merged, hours merged. It got messy. Really messy.
Then there was the pain.
I’d forgotten about the pain, and how bad it can be. Body pain. Nerve pain. Brain pain. How did I ever live with this pain before? This loss of function? This rendering of myself into a million screaming and incoherent fragments?
There have been other delights too. Loss of vision. Confusion. Immense fatigue. The kind of fatigue where it takes all you have to lift your head from the bed, or to track your eyes across a room. Indignities such as loss of bladder control. Streaming eyes and nose. Rashes and shakes and parts of me misbehaving, no matter what my brain was bidding that body part to do.
Everything that had become easy was suddenly hard again.
But I know it’s not for long.
I know it’s just for this short window of time, after which this current treatment will end and I’ll step back, regroup and allow my body time for healing and rehabilitation.
There’s not one pill that will fix this. Not one magic bullet. I have thirty years of complex bacterial infection. On top of that, all of the chaos and damage those infections have caused to my brain, my organs, my central nervous system and hormonal systems.
What I’m doing to heal my lyme and co-infections is working. My results prove that. My daily life proves that. But it has taken a lot of gritted jaw to get through this last round of drugs and I have a few more weeks to go. Although I pray I am through the worst of it now.
I’ll tell myself that anyway. Just like I always do…
This is what life is. It’s what I’ve learned over time. Life is ups and downs. Mysteries. Breakthroughs. Dead ends. Wrong turns. Wrong turns that lead to the right places. Breathe in, breathe out. Place one foot in front of the other. Rest. Keep going. Keep growing.
In the ten days I have been on this new treatment three lymies (people with late stage lyme disease) I know have taken their lives. Too much pain, too much damage, not enough support, no access to adequate doctors or treatment, no light at the end of the tunnel, and they each reached the end of their respective ropes.
I understand that space. There have been times over the years – even the last two – when I have sat on that same bench, and had that same conversation with myself and those closest to me.
It puts my own illness into perspective, my treatment into perspective, my recovery into perspective.
I won’t do myself or this illness the disrespect of rendering the lyme journey down into a handful of trite new age slogans. Loving my disease, making peace with myself, loving myself – they’re all noble and worthwhile sentiments, and I honestly do my best. But how many people who got hit by a bus or a dose of MRSA from a hospital stay, or a life-threatening bout of meningococcal disease get those flags waved at them? Who of them would be expected to be healed by the simple waving of a crystal, the chanting of an affirmation or a thorough investigation of their past lives?
For me, a wholistic approach to healing means using intelligent diagnosis and solutions – a range of traditional and alternative treatments. Science. Ancient and modern. Spiritual practice. Drugs. Energy medicine. Herbs. Oils. Intuition. Food as medicine. Doctors and practitioners who use their brains in an investigative manner, allowing space for curiosity and open-mindedness, and a synergy of puzzle pieces. I expect that to be my own practice too. Of course there is room for magic and miracles, of course there is learning to be had. I’m open to it all.
Thanks for all your well wishes, and I’m sorry if my silence had you concerned. But you know me by now. Whenever I’m quiet so long there is always something going on.
I’m busy getting well. That’s what’s going on. Messy business, but I’m making progress, and things will be back to some semblance of normal here just as soon as I have the energy for it all.
Sending so much love your way, Nicole xx