Warning: This is long. Grab a cup of tea and sit down when you have the time. I tell this story for you to understand a little more about me, where I’ve come from and why I do what I do.
I emerged from Childhood with a bruised and battered ego, little self confidence and a thickened skin.
A sensitive child, this skin served me well when I voluntarily went off to boarding School during adolescence and had to learn to cope with bullying, communal living and being away from home. For better or worse, this strengthened my feeling of self reliance and independence and taught me not to be dependent on anybody else.
Fast forward a couple of years and this strong sense of self-reliance catapulted me into a student exchange program in Uppsala, Sweden, as part of my University studies. That year changed the course of my life. I was 21, naive, a little wild and ready for anything.
I met and fell in love with a Dutch Student; 24, a little wiser and very grounded and solid and as a mutual friend put it “fire and ice”. He became my rock and for the first time ever I allowed myself to sometimes rely or depend on someone other than myself.
Despite the odds stacked against us, we lasted a total of 17 years together across three different continents and four children (3 of whom have high functioning Autism).
Then things changed. I changed. I left. We officially separated. He started living with one of my best friends. We got divorced. In that order, and life was a mess.
I came out in huge welts all over my calves and grew nodules on my knees overnight.
My ankle and knee were so swollen that I couldn’t walk on them and the pain was horrendous. My jaw also ached and my fingers and toes too.
The Dr. explained that I was obviously having an immunological response of some description and prescribed the steroid ‘prednisone’ to ease the pain and swelling whilst we waited for the specialist.
At the Specialist, a ‘diagnosis’ was swiftly arrived at; Sarcoidosis, and the medication roulette began.
The prednisone took care of the swelling and pain for the most part, but then copious amounts of other medications were added to the mix and were taken orally, via injection and via infusion. Problem was, they didn’t help. Nothing did. In fact, I kept getting weaker and thinner and my hair fell out in huge clumps. Many MRIs revealed lesions on my brain in both the right and left hemisphere and each time they requested new imaging, there would be new lesions. That’s also when I started having gripping headaches, pins and needles in my limbs, paralysis in my arms and legs, double and blurred vision, balance problems and falls and collapses. Eventually I was so weak and depleted that I found it hard to take care of my children and none of the specialists I saw really knew what they were dealing with. During this time I was deep in a bitter custody dispute.
The USA, where all this was taking place was refusing to authorize the medication that the Rheumatologist thought could be a last ditch attempt to save me. I did have insurance but the company wouldn’t honour it and I knew that in Australia (where I am from) that I would be able to get this medication for free. I felt suffocated and like I had to choose between possibly losing my life or possibly losing my kids. I decided to fight to have both.
After 6 months of thorough investigations and psychological testing, the court determined that I could leave for Australia with the children. My relief and joy was short lived however, when I discovered that their Father was choosing not to come to set up residence in Australia to be near the children so that we could co-Parent. Overnight, I became a single Mother. I was heartbroken for the children, and truth be told; also for myself.
In Australia, they wasted no time getting me seen to and after another MRI which showed more progressive changes and lesions on the brain, they decided to do a brain biopsy. By this time I was having memory and speech problems too.
A diagnosis came a week or two later. “Sneddon’s Syndrome”. An extremely rare vasculopathy affecting the small blood vessels, causing infarcts in organs but especially the brain. The Australian doctors also noted another autoimmune component but did not necessarily think the diagnosis of Sarcoidosis was accurate.
Life became a ‘game’ of survival. I felt like I was hanging on to the limb of a tree, dangling above a running river and when that lone tree branch snapped, my back did too, plunging me into the icy water, gasping for breath as the pain ripped through my body. This time, the diagnosis was severe osteoporosis. Caused by long term medication and steroid use, my spine had literally crumbled and the last 9 vertebrae were crushed as they collapsed one on top of each other. What followed was months of intense physical pain as I lay in my hospital bed, attached to a catheter, not knowing if I would walk again. My body involuntarily spasmed in excruciating pain as my broken spine tried to realign itself into its original position. I was prescribed pain relief and a muscle relaxer to help deal with the pain and the spasms.
Whilst the muscle relaxer did help with the spasms, it also unfortunately relaxed everything, including my lungs and I lost consciousness to later wake up and discover that I had acute pneumonia as a result of not being able to properly breathe. A caring doctor fashioned a homemade breathing apparatus for me to exercise my lungs and as I recuperated, I made the decision that being confined to a wheelchair was NOT going to be an option for me and that I would do whatever it took to walk again. Not long after, I was out of the wheelchair and on a walker and into a rehabilitation hospital, where I discovered I had lost 8cm in height due to the fractures. It was there that I learnt to dress myself again and slowly shuffle around, gaining strength day by day to be able to be discharged and home with my kids.
During my two months of hospitalisation, my Mother, to her credit, held the fort at home and looked after the children, but the strain was showing and I needed to get back home to them.
I returned home, bald and pale, a shadow of my former self, both physically and mentally. Thin, weak and slow, I was painfully aware of all that I had lost and just how far I had to go. I ended up sleeping in a hired Hospital Bed and using a walker for about 6 months and continued taking my medications (except for steroids) and my pain relief. Things gradually became better. I grew stronger, quicker and my language and memory improved. I stopped having ‘infarcts’ in my brain and my condition was ‘managed’.
As I was so busy ‘surviving’, I never had the time, nor inclination to research any of the medications that the Dr.s or hospital had put me on. It was only when I took my Son to a medical clinic about a year later that I noticed a sign on the door; “No Oxycodone kept on premises”. “What?” I thought, “that’s strange. I wonder why they would say that?”. When I checked my Son in at reception, I asked the Lady there why there was such a strange sign on the door. She told me “it’s to alert addicts, so they don’t break in and try to steal it. They sell it on the street”. Suddenly, my head started spinning, “what??? Addicts? Is Oxycodone addictive?” The poor Lady looked at me pitifully as if I was simple, “It’s a drug, dear”, she said, “it’s derived from Opium.”
I seriously wondered how many more punches the universe could throw at me and I really think our medical professions have a lot to answer for. I wish I could say that I handled this situation with grace and humility, but the truth was that I was angry, bitter and resentful; at this situation, about my illness, about my spine, about my ex-Husband, about my ‘good friend’ and about life in general! I didn’t like the person I had become. I was broken, emotionally, spiritually and physically and now a drug addict to boot!
I choose not to stay in this space. When I was in hospital, in that emergency situation where I stopped breathing and I lost consciousness, there was a period where little snippets of memories of my life danced before my eyes, like in a film. When I woke up they told me I was very lucky to be alive and it was then that I realised I had been given a second chance. I had temporarily forgotten about my heartfelt promises to myself after discharge, as I struggled to cope with the every day, but the sign on the door was my wake-up call and a big reminder about the precious gift of life. I wanted mine to count, and did not want to waste it, so I spent the next four years weaning myself off the opioids, one small dose at a time.
During this time in my physical and emotional recovery I studied subjects which fascinated me. A whole world of interests opened up as I grappled with learning to look at things differently and answer the basic questions of “why am I here”? and “what is my purpose”? I studied Hypnotherapy, Gestalt therapy, Counselling, Past Life Regression, Reiki, EFT (tapping), Astrology, Family Constellations and NLP. I dabbled in Eastern Philosophy, started a meditation practice, read copious self improvement books, listened to hours of inspirational podcasts and tried my hand (or my mind) at manifestation.
It’s been a long, hard road to come back to ‘me’, but I am back and I love it here, because I honestly like the person I am.
I don’t pretend to be enlightened nor have all the answers to life’s questions figured out, but I do know that I have fundamentally changed because of my experiences and that I am a better person because of them. We are all here to learn, expand and grow. It’s part of your soul’s evolution and that in itself helps bring meaning and purpose.
My intention for sharing my story is to remind you that personal growth is never easy. It often involves discomfort or pain, but accepting it’s challenges and learning from them is the ultimate reward. My hope is that you find this thought empowering and that you live your life consciously and with intention.With love and gratitude,