“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.
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