“Solar Eclipse
Each morning
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.
Oh.
My.
Goodness.
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
When you are quiet it means something is amiss … I will hold you in my meditations and prayers as you have held us. Sending you much love and healing light …
Firstly, the poem that you opened with, is the very same poem I shared in my blog this week. Serendipity :). I love how broad you are in your approach to your health and I especially admire your courage and resilience. The symptoms you describe sound beyond unbearable – but you bear it and then share it. It is such important work that you do xo
So sorry to hear about your pain. Love and prayers to you xxxx
I’ll keep you in my thoughts and prayers. You are so eloquent about something so horrendous.
Hugs beautiful lady!
Saying prayers that you and all other “lymies” needs are met. Wishing you all the strength and support that you all so very much deserve! Sending all of you lots and lots of love! <3 <3 <3
So sorry you have to go through such horrors thoughts are with you.
Always know how many lives you have touched and helped. Bless.
Miss you…love you…thinking of you…
Sending you love and healing your way my dear friend
You are doing an amazing job Nicole. Just remember all the good thoughts and love that are coming your way. There are lots of them Xx
As with the above post, I had thought that it was the red cedar keeling over too….. bugger ! So sorry to hear how unwell you have been. Hope you have turned the corner now. It must be tough to make the decision to start more of the antibiotics you know will make you feel so unwell. Sending love to you. Take care xxxx
I was hoping that your silence was a result of the tree falling on the power lines. Granted, that’s not much fun either but I imagine being without power a few days would be easier to bear than what you’re going through. Sorry to hear that you’re enduring yet another round of misery from Lyme. Stay strong and get some rest. I’m sure the pups are taking good care of you.
Having tasted a bit of better health it is always harder when you regress to the pain and awful stages. You know your own body and have good family, friends and healers. I am sorry to read you are going through all this again a,d hope and pray for a speedy recovery without too much suffering. You are an inspiration to many . Please take care. I pray for you to have a speedy recovery. Love. Maryx
Sending you love and prayers and hope you receive support through this time of trial.
Like so many others, learning about your adventures and of your every day activities is inspiring. Sending you healing love and light, and always praying for you, Nicole. xox Reading of your trials over these last number of days triggers concern for what you are enduring, but also allows us to feel gratitude for your strength of spirit and thankfulness for your support network. Thoughts and prayers go out to the family and friends of those whose medical challenge has been extinguished. <3 <3 <3
I ask for Grace from the Universe to give you whatever you need to heal. May all powers that is good hold you, strengthen you, keep you safe, shower you with love, comfort and healing. Thank you for the gift of yourself – you are appreciated around the world. Hang on in there, Nicole – many people are holding you close in their hearts. I will ask prayers of healing and well being for you when i brush my teeth in the mornings, during munchies and food times, and the last thing at the end of the day until you recover. Do whatever it takes to heal yourself Nicole. We missed you much. Sending love and hugs from Johor Bahru, Malaysia (the 5 dragons and my two Rottewilers sends love to you too!) Love, Evelyn
Sending you my heartfelt love and strength Nicole.
Sending mine and Oscar’s love all the way from the U.K . We have missed you so much . You take care and heal.
Cherryx
Keep up your brave work Nicole, sending Love for you to come through this like you have before.
I hear your message about combining the ” New Age”, with conventional medicine, you are a wise woman Nicole. Life is a Mystery sometimes, and we don’t know what lies ahead xxx
Praying for you, sweet soul, & sending you the strength and healing energy that comes through Love and Light! I so miss the thoughts you share when it’s been a few days. I can almost smell the fresh air, feel the dewy earth, and hear the songs of tree frogs in your posts. I love seeing your pictures of Harry and Bert, and the farm and river. You may think it’s a small thing, sharing simple thoughts, simple everyday moments, but it’s everything – because it reminds us of our connectedness to all that is. It offers a moment to pause and reflect. Thank you Nicole for sharing the gift of yourself with all of us through the magic of cyberspace – feel better and be well!
All my love is with you. I can only imagine what you have endured and are enduring. xxx
Love, love, love that final quote, Nicole! Sending love, light, and healing vibes your way! <3
Even with my many years nursing/medical knowledge I cannot begin to imagine what you have been through. Knowing that if there is no ‘word’ you are not well, I was concerned. The surprise for me, was, how attached, how much I look forward to reading your blog, and that I missed you…you the friend I never see but know so well in my heart. I do hope that the rest of this round of drug treatment is less painfully debilitating. You, your man and the boys have such courage. Much love to you. Marguerite xoxo
The challenges you face with terrible Lyme disease and the pain you go through can’t even be imagined Nicole. Sending healing prayers and much love that you are feeling much stronger soon xx
Sending good tough from Kona, Hawaii were I’m in holidays . Never beeen so near of your house ! So much love ! ! Aloha! Xxx
Nicole, you are a light in the darkness. Even when you have been see deathly I’ll you bring forth such life for others. I am so grateful to have found your blog and to have had the blessing to know you. You are loved. Sending thoughts of your wholeness your way. I see it and I do believe it. Love to you and your husband,
Patty
I feel sadness when I read about your pain and how much you have suffered and are still suffering. I could not even imagine how this must be. I’ve been gifted with mostly robust health and vigour all my life with small windows of health and fitness challenges. Wishing much love, healing and health Nicole and I look forward to seeing you when you are well again. xx
Can’t even imagine what you are going through. Hang on. Love Mx.
<3 to your body.
Thank you for inspiring us with your love and courage. Get well asap. xx
Sending you healing vibes Nicole, I hope you get well soon xx
Words fail me…please know that I am holding you close to my heart and in my prayers for strength and support to get through this next bout of treatment…LOVE U…XO
Dear Nicole, as I just finished reading your post running the emotional gauntlet that your words provoke I looked to the sky and before my eyes appeared two perfect rainbows. One for each and everyone of us reflecting our light and beauty even when our skies are grey. The other rainbow which was much larger, embraced us all from above with its warm and loving hug. It reminded me that we are safe & loved. I’m Sending love your way today & every day. Blessings Anita xox
I’ll pray that you are through the worst of it too, much love to you Nicole. <3
Pin an ear to your head, and hear the waxwing’s yellow cry. Listen to the whisper of the sure inner being that accompanies you, that holds you close. Open your mouth for ripe purple berries, and burgundy beets and orange juicy cumquats. . .when you’re able, when you can breathe again. Stick on your periwinkle eyes and witness. . .with don’t-know mind. It’s ok to blink. I send you love. I am curled up at the base of your bed, like a cat, offering simple warmth and partnering of heart–matching my breath to yours.
Sending much love and energy your way, Nicole. You really are an inspiration. Xx
Thinking of you Nicole sending sending you as much healing love as I can muster your way beautiful lady xxx
Oh Sweet Nic. I knew something was up. We’re all thinking of you, precious. Love you Kimmie xxx
It was so nice to see your post this morning, I have missed you! I am so sorry you have been going through such a terrible time. Hopefully the worst is behind you. Sending you lots of love from my little farm from me and the dogs and some big sloppy kisses too, from them !! Take care, stay strong and get well soon xxxxxxxx😘🐶🐶🐶🐶🐶🐶🐶
In all your suffering, you are such an inspiration to others. You truly are an angel. Please keep on keeping on and as always I’m sending you my prayers, love and angel kisses.xxx
So sorry you’ve been through such a hellish time. Sending you courage and sympathy from the northern hemisphere xxxx
Healing thoughts and energy coming your way Nicole…..