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

29 thoughts on “Dancing Out Of the Lymelight

  1. I attended an art retreat in Mexico two years ago with a woman from Canada who had Lyme disease. She encountered the same brick wall, almost death and then a doctor who was about to retire decided to help her (so what if they took his license, he was about to quit!). As she explained all of this, I couldn’t understand why doctors were (are) so unwilling to go out on a limb to help “Lymies”. Didn’t they take an oath! Don’t they go out on a limb with other diseases?!
    You are indeed a wonder woman in many ways!!!!

  2. Please help, my uncle who lives in NZ has Lyme he just lives with it, drs have given him no treatment. Is there anyone he can contact or a website etc you could suggest? ⛅️Thanks

  3. You are doing better Nicole – you have discovered a new base line, but it has been very hard earned. I hope your results today give you more promise.
    Your stories of the worst nausea and nights of searing pain has left me astounded at your tenacity.
    No matter what – be proud of yourself for hanging in there and doing your life purpose at the same time. You have real courage, that is worth celebrating.

  4. Praying that all goes well today, it is so heart warming to read how much stronger you have become and that such an insidious illness is finally leaving your body and you are regaining strength and life again. Sending love and healing prayers today and always xxoxx

  5. It is good when one finds a brave doctor to take care of them, it is hard since most doctors think there is no Lyme Disease in Australia, I always think of you when I see things on the telly about Lyme Disease in Australia

  6. You have done an amazing ‘job’ of this wretched Lyme…may today, give you bright and welcoming news…thinking of you. Love Love xxx

  7. Ive had CFS for 16 years; possibly Lyme plays into the equation’but I haven’t been diagnosed. When I read here, you’ve always *felt* well, if you know what I mean. I’ve always felt lile a well person trying to burst out of this prison, except for the tomes I’ve felt like I was dying. So happy that you have turned a corner – may it be a ‘permanently turned corner for you. I feel a certain kinship with you in that we both have a large amount of creative energy bubbling away, sometimes without an outlet, which is a bad form of hell. I’ve improved somewhat over recent months, enough that I can get back to a semi regular writing practice and messing about with pencils and paints and things. It’s the worst torture to fall below those levels, as art and play are so conducive to improving health. Here’s to your continued. *clink*

  8. I am sitting in a warm sunny spot in my kitchen. The dog is asleep on her bed and the clock ticking . An oasis of peace away from the windy and cold weather .sending warmth and peace from my heart to yours.x

  9. My heart goes out to you dear Nicole…. With pride actually … At the courage that you have shown to brave your storms. Your resilience gives us all hope too. Sincere prayers that you have a lasting positive effect in your life…Loads of hugs and love.

  10. I have not met you and was introduced to this site, but I thank you dearly for your work and wonders and I will only see you as being truly happy, healthy and wealthy. Thank you for your messages, your insights and continual care. Thank you for the love you send out. Thank you for your loving kindness.

  11. Nicole, you express your incredible journey to us so eloquently, I feel like I’ve been with you through every step and stumble. I live in New England (on the Northeastern coast of the US) and since we have so many deer, Lyme disease is quite prevalent in this area. It’s usually quickly diagnosed and treated with a round or two of antibiotics. I had no idea how devastating this disease could be. God has truly blessed you with the task of teaching people how to persevere through the darkest of times. I continue to pray for your massive healing and for the Lord to continue working miracles in your life. Amen to that! Lucinda xo

  12. I have just about everything I can crossed , crossed for you Nicole . I just know you are going to get through this 30 year nightmare . How have you coped ? You just give so much to us out here …we want you to have the very best of luck .
    Cherryx

  13. And from Berlin also a prayer for you that all goes well. You are such a brave woman and such a great example.

  14. Dear Nicole. All the way from Australia to Denmark, somehow I found your website. I don’t read it every day, I have no disease myself and I am not at all as spiritual as you (only part of me believes in crystals and healing), but your courage and warm care transcends both the oceans and the cynic inside me :). I truly hope that the message from the doctor is the one you wished for. Very best, Hanne

  15. So glad you’re on the road to recovery, you’re so strong and brave and an example to us all. I’d no idea Lyme disease was so controversial and doctors risked their careers to treat it, which is ridiculous. I pray for more education on this debilitating illness. Sending lots of love and light. The cage door has been unlocked and you are stepping out of it, you wonderful woman xxxxx

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