“How strange that the nature of life is change, yet the nature of human beings is to resist change. And how ironic that the difficult times we fear might ruin us are the very ones that can break us open and help us blossom into who we were meant to be.”
~ Elizabeth Lesser, Broken Open: How Difficult Times Can Help Us Grow
Would you be surprised if I told you of the bittersweet joy that is my healing journey?
I have experienced deteriorating health since 1984, when I was bitten by a tick during a picnic in Brisbane. For thirty years I have fought to obtain a diagnosis and effective treatment for this invisible illness which has slowly but surely stolen my life.
In January, 2013, I was finally diagnosed with Lyme Disease.
Yesterday I went back to my Lyme doctor to investigate my progress, one year into our aggressive treatment plan which uses antibiotics, herbs and diet. One year on, both my doctor and I needed some kind of tangible evidence that this treatment plan was working.
Since my late teens, when I first became ill, I have tried so many things in my efforts to regain my health. Until last year I’d actually tried EVERYTHING I could think of except antibiotics.
EVERYTHING.
Natural therapies, complimentary therapies, medical specialists, psychology, hypnotherapy, past life regressions, chelation, ozone therapy, detoxing programs, every kind of diet, nutritional supplements, all kinds of machines and energy work, every network marketing product, spiritual healing, positive thinking, meditation, prayer…
Everything.
Three decades of my life, and hundreds of thousands of dollars worth of ‘everything’.
Some of that ‘everything’ kept me alive.
Some of that ‘everything’ even gave me limited improvement for a time. But still, I ended up with lesions in my brain, cardiomyopathy, and on a fast track to my own imminent demise.
A year ago I was dying.
I had my affairs in order. I’d made my will.
At the end of 2012, life, as I knew it and lived it, had diminished to such an extent that I knew there was nothing left to sacrifice. Piece by piece, year by year, I have given up on things. On dreams. On hopes. On normal things. Simple wishes. I kept making choices based on a smaller and smaller view of the world.
I found clever ways to keep existing, and to be grateful for being alive, despite those limitations. I made choices, not based upon the wishes of my heart, but simply based upon what I might cope with, while still managing to shape this small world of mine with meaning. And I told myself that was okay.
I kept up a running commentary in my head, in my meditations, even in my dreams. I would be okay. I would get through this somehow. All of this misery must be for some higher purpose. One day, I’d tell myself, as I desperately tried to cling to the tattered shreds of my life. One day I would make sure that my life truly did count for something. One day, I would find a way to heal. I hung on and would not let myself face the possibility that it might turn out otherwise. One day I would be well again, I told myself.
No matter how hard it was some days to believe that this could possibly be true…
And then I did find a way. Through a set of divinely synchronistic circumstances, a brave and clever doctor diagnosed me with Lyme. Another brave and clever doctor was prepared to take me on as a patient and treat me. I was prescribed truckloads of antibiotics. Ridiculous amounts that made me more horribly ill, even as they were supposed to be making me better. If I wasn’t herxing, I wasn’t healing, I was told.
It took all I had to hang in there with the treatment. I’m glad I did. Under the care of this kind and compassionate doctor I have made incredible progress.
I still have a long way to go. But the lesions in my brain? Gone. The cardiomyopathy? Resolving. In fact, my heart is on its way to being normal. Do you have any kind of idea how big of a deal that is?
My bloodwork has improved.
I can feel strength returning to my body.
My mind works again. I mean REALLY works. Works so that I can write. Works so that I can function.
I’m not independent yet. I have another two years of drugs ahead of me. I still can’t drive. I’m still in pain. I am still fatigued.
But I am healing. I am alive. And finally my horizons are expanding rather than contracting, after just one year of intensive antibiotic therapy on top of all the other good things I was already doing.
I should be overjoyed.
Please, don’t get me wrong. I am overjoyed. My husband is. My family are.This is the best of news.
It’s just that I am also so very achingly sad right now.
As I stood in the shower on Sunday, Mother’s Day, I cried. Because of Lyme I have miscarried five times. I shall never be a mother. Lyme took that from me, and so much more.
My husband gave up his career to care for me, and it is too late for him to get that career back. The career that was his passion, his pride, his life.
We have both missed out on family time, and time with friends. Our finances and future security have been impacted, and our resources dwindled in my pursuit of health. Over the years we have watched genuine caring doctors, willing to think outside the box for patients like me who had fallen through the cracks, be persecuted and closed down.
Because of Lyme I have given up career paths, education, business opportunities, dreams, relationships. I have said no to so many things. I have been unreliable in my life, and with those I love. I have endured the criticism, judgement and contempt of many, including health professionals, family and friends. I have been in bed, in a quiet dark room, or living small, while life moved on without me.
I will never get those years back. My husband will never get those years back.
I held my Lyme drugs in my hand this morning. A few tiny pills. Pills that are making me well. Pills that could also have given me a whole other life, if I had only taken them earlier. I have recently learned that my government was advised back in 1990 that Lyme disease existed in Australia, and that doctors needed to be educated to better deal with this new threat, which was expected to become more common.
Imagine, if I had been diagnosed back then, at a time when I was already so ill, when my family and I had already suffered so much.
I’m grateful for all that this disease has taught me. I’ve learned humility and compassion. I can honestly say that living with Lyme has grown and shaped me in positive ways. It has forced me to walk a spiritual path, and to explore that path with a dogged determination as I looked for answers.
But in the end, my answer came largely from modern medicine. Alternative medicine and my spiritual practices kept me alive, against all hope. Modern medicine is what is giving me my life back. Antibiotics, anti-microbials, anti-malarials. Tiny little pills.
All that misery, all that pain which my family and I might have been avoided if only I’d been diagnosed earlier and been given those tiny little pills.
For all of you dealing with Lyme and its co-infections, I urge you not to give up. Healing is possible. I am healing. You can too. Something in the mix will work for you, as it has for me.
This bittersweet symphony that is life is still beautiful to me, and I am grateful beyond words to be given a way back to health.
I am also grateful with everything that I am for all of you who have encouraged and supported me, who have sent me messages and cards and gifts that were often the ONLY bright moment in the darkest of my days. You deserve credit too, for keeping me alive and helping me to hang in there. Thank you.
Yesterday as much as I celebrated this glorious victory, this incredible come-back in the fight to become well, I mourned my losses, and grieved the life I gave up on the way to becoming who I am. I know that there is more loss there yet to be acknowledged. I know that grief can tap me on the shoulder, and cut me off at the knees when I least expect it. That’s okay. It’s part of my healing process too.
Today I am stepping forward with optimism, and renewed purpose. My life matters. I am here for a reason. In stripping so much of my life away I have come to know my core, my essence, and I know this next part of my journey is to embrace that fully.
I love that I am healing. I love that there is still time for me, and that I will be well enough to use that time to a greater purpose.
My progress is heartbreakingly wonderful news.
Some useful links:
Lyme Disease Association of Australia
Karl McManus Foundation Australia
Lyme Disease Association, Inc United States
The Canadian Lyme Disease Foundation
Dear Nicole, I am a little late in responding to this post but I shed a tear of both happiness and sadness when I first read it. You shared so much of yourself in it and although heartbreaking in parts, I rejoiced when I read that your health has made so many gains since the commencement of your treatment. You are being carried on a wave of love by your blog followers who celebrate your journey, in all its entirety, with relief. I thank you for your generous heart and the reading you gave me in late 2012 which continues to unfold wondrously with Divine timing. xox Mitch
So happy to have found your blog on this day. Thank you for posting this… so very helpful.
Nicole, I’m new to your blog, and enjoying it very much. My thoughts in response to your post were a bit long, so I posted them on my blog instead–hope you don’t mind. http://aboutwhatmatters.wordpress.com/2014/05/18/what-might-have-been/
What wonderful news!! I knew it was working. I could feel it in my bones. I’ll continue to pray for massive healing in your body and your spirit. Keep fighting the good fight, my friend. xo
Sometimes, love keeps us alive even when all the physical stuff means we shouldn’t still be here. I’m so glad you are loved so well, and are still here with us x
Hi Nicole
Wishing you a very speedy and joyful recovery from here. Thank you for your posts and wisdom. Lorelei
hi Nicole, such an incredible & again, generous share. I’m SO grateful for each of your blog posts, they continue to blow me away with their depth, honesty, insight…etc etc, & general awesomeness. THANK YOU! YAY that things are on the up, bye-bye nasty lyme things! xxx (f’d up that the health authorities here squashed that information back in the 90’s, extremely rude & selfish & inconsiderate !…ignorance is bliss for some huh)
I’m so happy that you are healing precious Nicole. That is really wonderful news! Love and Light, xoxox Jetske
Good news Nicole xx
♥♥♥ WON-DER-FUL NEWS!
i have a poem for you:
I asked God for strength that I might achieve.
I was made weak that I might learn humbly to obey.
I asked for health that I might do greater things.
I was given infirmity that I might do better things.
I asked for riches that I might be happy.
I was given poverty that I might be wise.
I asked for power that I might have the praise of men.
I was given weakness that I might feel the need of God.
I asked for all things that I might enjoy life.
I was given life that I might enjoy all things.
I got nothing that I asked for, but everything I hoped for.
Almost despite myself, my unspoken prayers were answered.
I am, among all men, most richly blessed.
love you Nick.
I am sobbing here Nicole . I knew that you were going through hel,l but this post is so honest ,and completely wonderful . I am so… so …so… happy for you that you are on the right path .
I truly believe you learn so much through an illness that is thrown at you …I do not have what you have, but I can relate to a life sentence through illness. and all it teaches you .
love , best wishes and may all your dreams come true .
Cherryx
Wow, Nicole. Such wow. My heart truly swelled with happiness and relief on reading your fantastic news of healing and hope. And then it broke a little to hear of how much you and Ben have sacrificed and had to let go. I’ve read your Lyme-related blogs for a while now, and every time I’m floored by your experience and how you have faced it. What a humbling, heart-breaking, inspiring journey you share, with such honesty and heart. Thank you for your words, courage and beauty.
Much love and support.
A beautifully honest post Nicole. I celebrate with you for what your treatment has helped you regain and mourn with you for what you have lost. Sending you love and prayers for your continued recovery.
Thank you Nicole for your continuing sharing, we travel with you, also learning empathy and compassion and learning on survival of the spirit and your physical self. God Bless you for your kindness’ Teresa
Dear Nicole
Wonderful news indeed.
Such sad news in some of your sharing.
My heart is with you.
Love Oliver
I have followed you for the last year – I also have been suffering with ill health for sometime. I am sat at my desk supposed to be finishing some design work and I can’t stop crying. All the blogs you have written have given be hope and also showed me the magic that is to be found in this world even when life is difficult…. so please that you are finally healing you are a very brave person and thank you for sharing all your wisdom and thoughts, it has helped me so much x sarah (hindhead UK)
It really is wonderful to hear that you are now finally receiving the physical healing. Finally. Your pain and sadness and grief I felt clearly. I also feel your underlying joy that looking towards a new future brings.
I sent you love and energy. XXXX
I’m so glad to hear it’s working Nicole. God bless you! Frank
Sad and Wonderful news! Your journey is an inspiration. Love and light
I have been waiting for 24 hours for your news…and now I have shed a tear of happiness for you, but also for your losses.
I hope this time is now the start of the next wonderful chapter for you.
Much love, light, and happiness your way xx
You’ve gone through so much Nicole – pain, confusion, loss, anguish. All that read your amazing blog would feel a little of that through you sharing your experience and you would feel the love and compassion we all have for you and for Ben. We are grateful that you have been working your way through the abyss and are inspired by your courage, your strength and your openness. Continued love and blessings to you and your family xo
Oh yes that is great news, so happy to read it today
There are no words … just gratitude for still having you in my life. Love you xoxo
you are an inspiration Nicole, your strength and courage and positivity are enlightening xx
So happy you got good news and totally understand your grief.
You share so much and shine a light for so many.
The pain and heartbreak are great and many you have endured, now to finally have your brain back means you can process and grieve and allow a flame of excitement of what is to come to carry you through the rollercoaster of this crazy life.
Also, brain function FTW. Big bear hug and Snoopy Dancing xo
Dearest Nicole, thank you for sharing your journey to health. I am filled with joy knowing that you have found the way back and am also looking forward to hearing more of your healthful results in the coming years. 🙂
The grieving process will also assist with your healing… so go with it. Release all those bottled up emotions so that you can move on.
Yes, you have lost many things due to Lyme, but I feel we live in an abundant world full of new opportunities… and new doors will open for you and hubby.
Through you I’ve learnt so much about Lyme that I never knew… Well actually, I’d never heard of it before I started reading your blog. Thank you, thank you, thank you.
Keep healing…
Namaste Nicole xo
One day this is all going to make sense to you Nicole – so much sense that you will not mourn loss. The world works in wondrous ways, albeit it that us humans cannot understand its ways much of the time. Underneath it all I somehow believe in all the benefits that have arisen as a result of this adversity – however difficult / bizarre that is to digest. Your bravery and courage is remarkable – I am so-o-o happy for yesterday’s results Big hugs X
All I can say is yes…to everything you have written I say yes and many people cannot/willnot/are not informed enough to get over adversity – they will stay in their unhappiness for their lives..living life of regret, melancholic discontent and negativity – a wasted life. You are doing it and will continue to do it..such is your lot in life. I say bravo to you because it is not really possible to know what it is like to be in a situation unless you have been in the situation…bravo again..and thanks for giving to others….
Even when you’ve been through so much, you still find the way, the energy, the words, to offer hope and comfort to others. Your life certainly does matter, Nicole. Our lives are richer for you being in them.
Bless you, beautiful Nicole! I am so grateful for the blessings you have given me. You have made such a difference to so many. May the blessings pour back to you tenfold and more! Have a wonderful gift of a day 💃🌹❤️xxx. Love Sue xxx
Such fantastic news absolutely thrilled for you xxxxxxx
Congratulations! It’s good to know that healing can happen. Have you written a post that outlined your treatment plan? I’m new to this blog and new to Lyme….
That’s great news. Take a deep breath now and celebrate life. I really appreciate the story of your journey back to health and all your other stories too. Sending love
Nicole, I know you mentioned some of what the disease took from you and your husband, and I’m sorry about that, but I’m going to concentrate on the positive now. You’re healing!!!!! WOOOHOOOOO!!!! Yes, I’m shouting! You’re healing! This is awesome — congratulations! 🙂
What you and your husband have been through. May you be filled with joy and healing light (and lots more pills!!)). So glad you have evidence that you really are on the way to full recovery xx
Nicole, words can’t express how I felt as I read your blog. Allow me simply to say, I am so very pleased for your recovery, for the bright future that lays ahead, for the good health and vitality that will increasingly be yours. Much love to you beautiful lady and to your wonderful family. You touch so very many of us, in so many ways.
Oh what wonderful news! Actual tangible results! The strength and courage and the sacrifices you and your husband have made are heartfelt & inspiring. The two of you are truly amazing. Through sharing this difficult journey, you have passed this strength and courage onto many others, of that I’m sure. I know it has for me! For this I am truly grateful, and also for all the other wonderful magical treasures you selflessly share with us! Thank you Nicole! Cheers to brighter and stronger days ahead! Blessed Be Nicole.
Dear Nicole – I am so glad about your good news and so sorry that the disease took so much from you – you are an inspiration and a soul sister to so many. Much love to you and your husband – may your pathway be paved with wonderful memories and many more years of inspiration for us all. xoxo
Gorgeous Nicole, that’s amazing news. I admire you. Sending you lots of love and light <3 xox
My heart is smiling and tearing up at the same time, I love that you have shared your story it helps so many people. It must be wonderful to know you have turned the corner. My heart goes out to you my soul sista, you are a wellness warrior and i look forward to seeing you this year all my love namaste Suzie xxoo
Thank you so much for sharing your story. It is very inspiring for me to read what you have gone through and your ability to find the silver linings in otherwise bad situations. I never knew how much Lyme disease could affect a person until I read your blog. Surely you are raising awareness and hopefully someone suffering similarly will realise what they might have. Your blog is one of the few I try to read regularly as I find your wisdom speaks to me. Thank you so much for being the person you are! I hope you feel improvement in your health a little more each day.
I celebrate your progress with you and I empathize with your heartache. The paradox is not lost to any of us – the strength of spirit and the fragility of living. Keep going Nicole and may you continue to get stronger in body and mind..
Dearest Nicole, what great news!!! But at the same time bittersweet that this healing did not come your way earlier. I admire your strength and love the words you write. You are an inspiration. Wishing you lots of love, light and laughter. X
Lots and Lots of love to you Nicole, in all this pain, grief and growth you have experienced, your love and heart has touched and supported so many people to move forward in their own lives. Your compassion and generosity well noted. People would also be there for you if need be. xo Thank You.
Precious Nic what wonderful news. Thinking of you today and every day. Kimmie xxx