Just over 1 year ago, the cornea in my right ruptured (twice), was glued back together (twice) and I was eventually diagnosed with severe Neurotrophic Keratitis, a degenerative eye disease.
Many of you may remember, I had been trying to access an ophthalmologic assessment without success for many months prior to this dramatic event but even still, I had absolutely no idea I was at risk of my eyeball bursting and the contents gushing out into the palm of my hand.
In the 12 months that followed the initial ruptures and repairs, I endured increasing levels of pain, worsening of my vision and extreme light sensitivity -the windows of my house were covered in black plastic, I could no longer sit outside in the sun or look at digital screens and I wore dark sunglasses all the time, even at night.
I consulted with many Ophthalmologists during this time, as well as two integrative eye physicians and a Naturopath in the US and I diligently followed their suggestions. But because of the severe light sensitivity, pain and vision loss I was experiencing, it was extremely difficult and mostly impossible to do the necessary reading and online research I needed to do in order to try and help myself. In all my years of chronic illness, including the long periods of time spent isolated in a ‘safe room ‘ without furniture and everyday comforts like warm bedding and electricity, I had never felt my world shrink into hopelessness as rapidly as this. Not only did my ability to access help, find solutions and take care of myself rely on my ability to see, but the quality of my life depended on it too. After losing so much to chronic illness already … basic freedoms, treasured friendships and the dreams I had for my future along with the unforeseen passing of my beloved mum (and primary career), just 3 months after my cornea first ruptured. Now, due to my eye condition, I could no longer write or meditate either – 2 things which were my last refuge and the only activities which brought me joy, strengthened my soul, enabled me to express myself and made me feel what all humans really long for, a sense of purpose and a reason to be alive.
WHEN I THOUGHT THINGS COULDN’T GET ANY WORSE
This past August, almost 1 year to the day of my first corneal ruptures, my right cornea unexpectedly ruptured a further 3 times over a period of 10 days. I underwent multiple procedures (i.e scraping of my eye ball and gluing it back together under high intensity theatre lights without sedation or adequate pain relief). The third procedure included injecting hyaluronic acid gel into my eye ball in an attempt to keep it formed (my eye kept losing the liquid inside the anterior chamber and collapsing). Post procedure pain was unprecedented – the absolute worst I’ve ever known.
Unfortunately, because the procedures continued to fail and I kept losing the liquid inside of my eye, larger and larger amounts of glue were used each time which made the surface of my eye extremely rough. Sharp edges of hard glue dug into my already highly inflamed eye ball and corneal nerves impacted by Neurotrophic Keratitis. My eye wept constantly and I experienced referred pain in my whole head, scalp, neck, back and jaw – like a searing hot kitchen knife slicing into my flesh. Every blink and every tiny move I made was excruciating. I would literally scream. FYI the cornea is the most sensitive tissue in the human body. Who knew? Well I do now.
I’m at a loss to describe just how astonishingly taxing and traumatic this time was. Rest of any kind, let alone sleep, was near futile. My days and nights were spent sitting alone on the floor in a dark room, my head propped against the side of my bed. I couldn’t sit up straight or hold my head upright so I had to lean forward at all times. I would dig my knuckles into the spasming cranial nerves at the back of my neck. I rocked myself for comfort. I groaned with each long grueling exhale. I pleaded to the heavens for a few minutes of respite. My self talk ricocheted perilously between … “I don’t know how much more of this I can take” and “Somehow I’m gonna get through this.”
OUT OF OPTIONS AND DOWN TO THE WIRE
When my condition continued to deteriorate, I was referred for an emergency appointment with a specialist surgeon.
As my step dad and I waited in the consultation room that late Wednesday afternoon, I tied to stay positive. But when the surgeon told me that my only option was a corneal graft with donor tissue, a surgery which could also fail … the verdict was in. I could lose my eye either way.
Knowing that general anesthetic was a very risky decision for my body, I asked the doctor whether she was willing to perform the surgery without it. I pleaded my case, told her how I’d undergone two tooth extractions in my kitchen without anesthetic. But it was no use.
On the drive home, I couldn’t speak.
Cradling my head with my hands in an attempt to stabilise my eyes against the motions of the car, my sunglasses still on to shield myself from the head lights of the other cars on the night road, I wanted to cry, but I felt numb. I wanted yell “why is this happening to me?” but what good would that do? I wanted to run far, far away from all of the suffering and the pain and the decisions I was being forced to make because I didn’t want to face any of it.
With hope dwindling and what appeared as no options left, I felt backed into the corner of a very small room with no windows and no way out.
Trying to negotiate all those feelings while simultaneously enduring the worst pain I’ve ever felt and the most challenging year I’ve ever experienced was beyond comprehension and in that moment, beyond my capabilities I thought. But one thing I’ve definitely learned is this … we’re always way more capable than we realise.
THE BEST DECISION I EVER MADE
A few weeks before the second round of corneal ruptures, I heard a voice. But it wasn’t a voice that I could hear with my ears. This voice, emerged from deep within me and this voice, just wouldn’t quit.
“Meditate.” It would say.
“You MUST get back into your meditation practice.” The voice continued.
A great idea in theory, but I had tried so many times over the past few months to get back into my daily practice but physically, it was just too hard. I couldn’t sit up straight or even lie down without screaming pain. Sitting still often made the pain 10 x worse. I had to keep flexing my feet or twisting by neck – some kind moment to release the pressure value to the overwhelming agony wailing within me. If I listened to soft music too close to my head, the vibration often triggered shooting neuralgic pain, one tilt of my head in the ‘wrong angle’ could send me reeling for hours.
My meditation practice had served me well over the years, I knew that. But this time, I couldn’t see a way.
“Meditate.” The voice persisted.
“Meditate … meditate.”
Worn down by its directive … eventually I cut a deal.
I agreed to commit to 5 minutes every day, a slither of my 1 to 2 hours per day effort in the past which included meditation, visualisation, affirmation and self directed neuroplasticity. But a commitment nonetheless. No matter how much pain I was in. No matter how badly I was suffering. Even if I couldn’t focus or relax or breathe or connect I would show up anyway, however it was and make that ok.
Then a week or so later, I was talking to my sister on the phone and I realized I had been managing to fall asleep for about 2 uninterrupted hours in the evening, something which hadn’t happened for the longest time.
“I think the the meditation I’m doing is actually starting to help my nervous system ” I aired hesitantly.
“You know what?” she added. “I’ve been thinking how your voice sounds different too.”
This accidental realization and observation became my fuel to keep moving forward as best as I could. On the days I could stretch my practice to 20-30 mins I did. I started a morning session as well.
The decision I made to listen to that inner voice, might just be the best decision I have ever made. Because when the multiple corneal ruptures happened a few weeks later in mid August, I had a small foundation of strength and fortitude beneath me. And thank God for that, because I was about to be hit full force by a wall of high stress, uncompromising pain, fear and uncertainty.
A NEW DOOR
Once I got home from that late Wednesday afternoon appointment with the surgeon, I thought about my 2 options. Leave my eye the way it was or operate. Neither option had a hopeful outcome and both were fraught with danger. When I imagined both scenarios, I felt so afraid, paralyzed and small.
Then, my mind drifted to my meditation practice and when it did, I felt my energy shift and expand. “What is that feeling?” I thought. I knew what it was … it was hope and it was beckoning me toward it. Stuck in that small dark room without any windows or any way out, a new idea emerged … “Maybe there was another way? Maybe I could build my own door?”
With time running out and everything on the line, I ramped up my practice – 3 times per day for an hour each time – new found devotion mixed with serious desperation is a powerful amalgamation I discovered. When I wasn’t meditating, I was fortifying my self belief by listening to podcasts and testimonials of healing … over and over again. I enlisted the help of other meditators and they agreed to include me in 3 remote healings as well. I was immersed in the process of building my door and I was unequivocally all in.
THEN THIS HAPPENED
Thursday–
I secured an appointment with a different surgeon for the following Tuesday morning. I needed another opinion and I was determined to find a doctor who would be willing to perform the surgery without anesthetic.
Friday –
The bandage contact lens on my right eye unexpectedly came lose, folded over and jammed into my eyeball. The contact lens wouldn’t stay flat due to the rough glue on the corneal surface. Upon examination in the hospital clinic, I was told the interior chamber of my eye was barely holding at 20-50% liquid capacity and it did not look good.
Saturday –
I received my first remote meditation healing.
Monday –
My bandage contact lens came loose and jammed into my eyeball once more. I had to hold my eyelids open with my fingers as my step dad drove me to hospital again. While in the waiting room, I overheard one of my ophthalmologists discuss my situation, relaying that surgery was the only option but there was little hope for me now.
Upon examination my eye was still 20-50% capacity, weeping constantly, highly inflamed and swollen with hard jagged glue everywhere. But instead of feeling stressed, it was strange … because I felt so grateful. Grateful for the 20-50%, I mean … my anterior chamber wasn’t empty! It was holding at 20-50% and that felt like a victory! As I sat in the car waiting for my step dad to load the wheelchair in the car boot, I literally wrapped my arms around my body and hugged myself.
By that afternoon all I could think was “there has to be another way”. I just kept repeating that statement over and over out loud. I then approached my local doctor for a referral to another ophthalmologist interstate who was researching alternative glues and treatments for corneal perforations.
Tuesday –
I got up at 5:30am for the second remote healing meditation. When finished, I began getting ready for my appointment with the new surgeon at 8:45am.
Standing at the bathroom basin going through my self talk and affirmation exercises, I suddenly felt a very deep connection to the words and sentiment. As I chanted my mantas and allowed the images of total health and vitality to form in my mind, I felt moved in a way I hadn’t before. I held onto the side of the basin and consciously dialed up the intensity of the feelings and imagery. I felt an incredible wave of gratitude wash over me which I could not control. I wept and I wept. In that moment I felt healed. Realizing it was time to leave for my appointment I calmed myself down and carefully wiped away my tears.
An hour later I was sitting in the hospital examination room, with the head of the ophthalmology department staring at my right eye through the slit lamp.
“Your anterior chamber is formed. “ the doctor announced.
Knowing that on the previous day, my chamber was barely 20-50% I replied “Formed? by what percentage?”
“100%” he replied.
“The bandage contact lens is still there but I can’t see any glue. It appears to have all come away. Maybe the hole in your cornea has healed – I can’t tell for sure but there’s no need for urgent surgery right now -everything looks pretty good.”
“What?”I stuttered. I was shocked and I was confused.
Just 24 hours before, I was in the very same hospital and my interior chamber was barely holding, my cornea was leaking and I had a large quantity of thick rough glue smeared over my eyeball.
Another ophthalmologist in the room who had actually performed one of my 5 gluing procedures interjected and addressed the senior physician. “Do you mind if I have a look because I saw Amelia’s eye 4 days ago?”
She looked through the slit lamp at my eye and then looked at me with amazement “Amelia it’s true” she said.
For a split second I felt like I had been dropped into some kind of parallel universe. I looked at the doctor and then at my step dad and then I thought about the hours and hours of intensive healing meditations, visualisations, affirmations and self directed neuroplasticity along with the remote healing that I had received that very morning just before my moment of profound gratitude at the bathroom basin.
“Oh my God” I uttered. “Could this really be happening?”
A COMPLETELY DIFFERENT PERSON
The next morning I opened my eyes without effort, something that would normally take 15 excruciatingly painful minutes. I then stood in the kitchen with the fridge door open and realised I didn’t have my sunglasses on – something I always had to do because the light inside the fridge caused my eyes so much searing pain. I started to cry as I stared at the bundles of broccoli.
Later that day I was sitting up straight, imagine that? Straight! Not leaning forward, not supporting the weight of my head against the wall or in my hands. In the afternoon I was looking out of the window and the black plastic was gone and I could see the hills in the distance – it had been over a year since I’d seen that. That night, I laid on my left side for the first time in maybe 6 months, something I hadn’t been able to do for more than 15 seconds due to stabbing pain. I also slept the whole night through. When my sister phoned to see how I was, I answered the call “Hello house of miracles’” she laughed out loud and so did I and then I cried and I cried.
Was this really happening? I had a lot of questions … Was I the recipient of a real life miracle? Did the remote healing change my physiology? Did my hours and hours of meditation rewire my brain, heal my body and transform my reality? On one hand I believed all of that had occurred but on the other hand, I was afraid it wasn’t real and any second my eye would fail.
The next morning, I went to my regular Ophthalmologist who had already received a phone call informing him about what had happened.
He examined me and said “ It’s true Amelia there’s no glue.” he continued “I don’t know what to tell you … I just can’t explain it”.
Just a few days prior, I was in acute medical crisis, facing surgery, the potential loss of my eye ball and was crippled by pain. He himself told me the best I could hope for was some kind of stability of my condition but I’d never be free from pain for the rest of my life.
But as I sat there looking at him without sunglasses and hat or crouched in my wheel chair (which had been my usual appearance for many months)
“Look at me” I said to him. “It’s a miracle”.
“Amelia” he replied. “It’s like you’re a completely different person”.
And you know what? He was right.
MILESTONES UPON MILESTONES
In the weeks that followed my life transformed dramatically. I made a conscious decision to take full advantage of the paradigm shift which had occurred. I implemented as many changes in my daily life and in my environment as I could, signaling to my brain and body that my circumstances had altered and I was now headed in a completely different direction. I dug deeper into my intensive meditation practice and introduced further techniques as well.
More progress and milestones followed every day.
- A dramatic reduction in pain and light sensitivity (from a 15/10 to 2/10)
- Able to open both eyes fully.
- Able to sit outside daily in the sun.
- Able to sit up to meditate for long periods.
- Able to hold my head/ neck up straight.
- Black plastic off windows to let sun/light in.
- Able to tolerate lamp/ lights on indoors.
- Able to sit at my desk and write.
- Able to sleep through the night.
- Able to lie on my back and left side.
- Able to look at digital screens for short periods (it took me a very long time to compose this big post!)
- Able to video chat with friends and family.
- Able to be a passenger in the car without pain/dizziness/nausea and being able to look out the window at the scenery.
- Energy to bake some sweet treats, do my washing, sweep the floor and make my bed.
- Able to do daily yoga stretches and breath work.
- Able to sit in front of my red light sauna.
- Able to walk to the mailbox and back.
- Went into a clothing store and walked around. (I posted about this milestone moment on Facebook and Instagram and how I’d wished my Mum was there to see it happen)
ABOVE LEFT -AUGUST ABOVE RIGHT -SEPTEMBER
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4 WEEK UPDATE (not the news I was hoping for, but still)
4 weeks after my dramatic healing experience, we discovered that there’s still a leak in my right cornea – although it’s smaller and slower leaking than before. This news was unexpected (and a little disappointing) for both my Ophthalmologist and I considering the dramatic improvement of my symptoms. However, because the glue came away by itself and the anterior chamber of my right eye refilled on its own (and is currently holding steady at capacity despite the leak) the decision was made to leave my eye alone and not attempt to reglue it again … hoping my body will repair it given some more time.
I’m traveling in uncharted waters everyday now. The doctors are saying my cornea may heal, it may not heal or it might rupture again. No one knows for sure or what kind of timeline that entails. Because the eye is not fully sealed, infection is a risk too.
I’m still wearing a bandage contact lens on my right cornea 24/7 which acts as a small barrier. This lens is changed every 4 -6 weeks. The lens change is a delicate procedure in itself.
In regards to my sight. Technically, I’m considered legally blind in my right eye now. An unfortunate development considering this was one of my greatest fears 18 months ago when I was first seeking an Ophthalmologist assessment and no one seemed to take my concerns seriously.
I may not be able to read anything with my right eye but I can see light, shapes and outlines of objects – sort of like looking through a layer of very thick opaque, plastic. This is actually a big improvement on what my vision has been for some time so I am grateful for that.
The appearance of my right eye has changed too. The location of the perforation has acquired a lot of scare tissue, which makes the area appear white and cloudy. When my eye collapsed, the iris was pressed up against the cornea causing some colour pigment from my iris to become embedded into my cornea so there’s a colored patch present there too.
The vision in my left eye is not great either, it has degraded significantly. It’s unsure if this is progressive and related to the Neurotrophic Keratitis or it’s because of the whole experience. I can thankfully read for short periods with prescription lenses but I’m experiencing eye strain headaches and referred neck pain whenever I use my eyes to focus on words or things. As things stand now, I couldn’t read a book or watch a movie etc I’m currently investigating ways to improve my vision but as I still have Neurotrophic Keratitis in both eyes, which is a degenerative eye disease, the priority is to protect the vision and health of my left eye moving forward.
A SCAR TO REMEMBER
When I saw a photo of myself recently, it was obvious that my right eye looked different. At first, I felt self conscious but that was soon replaced with awe. That ‘disfigurement’ is and always will be unmistakable evidence of a miracle. Proof of what my body is capable of. A reminder of what is possible even when all hope is gone, the odds are against you and you’re all out of options.
I have a new found love and respect for my body and for myself that I didn’t have before. Not only did my body accomplish something truly amazing, but I accomplished something truly amazing as well. So many times over the last 12 months I didn’t know how I was going to survive. But what I know for sure, is just because you don’t see a way, doesn’t mean there isn’t one. We are always stronger, more courageous and more capable than we realise and because I kept showing up and showing up no matter what, I believe that I was able to build my door, open it and walk right through.
12 WEEK UPDATE
My right cornea is still about the same. The anterior chamber remains formed (thank goodness). Unfortunately however, the referred pain in my neck and right side of my head has increased again, but it’s manageable and nowhere near as bad as it was 6 months ago. I have also been experiencing some issues with my right ear and hearing and possibly the vestibular nerve. I’ve been seeking opinions about this. It’s unclear whether these symptoms are temporary, permanent or a symptom of something else like an infection, nerve damage or a brain lesion/tumour etc. The neuromuscular pain associated with Spondyloarthrirtis on the right side of my body has also increased so I’ve started some regular body work to support my body and nervous system after all the physical trauma it’s been through.
LOOKING AHEAD
When I think back to the first day of September when the head of the hospital ophthalmology department told me the glue on my right cornea had spontaneously come away and the chamber had refilled, and I no longer needed emergency surgery, I felt like I had experienced a miracle.
3 months later, knowing I still have a leak in my cornea along with other symptoms like increased levels of pain and fatigue, some days I catch myself questioning whether that miracle even happened. It’s interesting how the mind wants to assign meaning to everything that happens to us, often minimizing and discounting what seems unlikely or uncommon, crafting a cautious story about why things are the way they are.
I don’t know what will happen moving forward. Sometimes that really scares the berjeebers out of me and other times, I’m roused and ready to create a future where all my long held dreams are realised.
It’s easy to anticipate circumstances getting worse, especially if you’ve experienced a string of traumatic events, one more devastating than the other. But I also know, when uncertainty abounds and anything is possible- it really means ANY THING is possible. That could be heartache and things we don’t want … like corneas rupturing and losing loved ones but it can also mean that untold joy, freedom, deep fulfillment, healing and miracles are possible too. That goes for me AND for you.
So no matter what you may think about what happened to me or even what my sometimes scared mind thinks about the future too, this is what I believe.
I believe that miraculous things do happen. I believe that uncompromising grit and persistence absolutely have their rewards. I believe in the power of self directed thought, prayer, focused attention and holding onto a clear and inspiring vision for your future that is greater than any pain you may feel in the present. I believe in the unified field which connects us all and that there are so many things we can’t fully explain but that doesn’t mean they aren’t real or true. And finally, I believe more than ever, in the sometimes scared, sometimes brave but always determined force of nature and potential for greatness that resides within me … because that part of me, was the precious voice that told me to meditate.
P.S
I couldn’t pen this update without expressing my heartfelt thanks.
Thank you sincerely to all who have been contributing to my Go Fund Me campaign. Your support has enabled me to access the health care I need. Especially at the most crucial of moments. Multiple procedures, treatments, specialist consultations both here and remotely and ongoing monitoring and care – all of this made possible because of YOU. I can’t tell you how much you have made helped me. Thank you. Thank you. Thank you.
Thank you also to the meditators around the world whom I do not know but who wrapped me in their unconditional love and focused their healing energy upon me … without doubt you have changed the course of my life forever. Also to countless people everywhere including Facebook friends far and wide who held me in their thoughts and prayers … I felt your love and was strengthened by your messages more than you know.
Unending praise and appreciation for my step dad and dad for showing up for me over and over again during this unprecedented experience too … so many hospital waiting rooms, emergency appointments and trips to the hospital, filling in paperwork, phone calls, food prep, washing and more. To my sister for being the best soundboard there ever was, listening to my worries and encouraging me by phone, to a handful of friends who kept in touch with me especially Julie and Jenny, for staying in constant contact via audio messages (because I couldn’t read text messages) proving distance is no barrier to true friendship.
And finally, my deep heartfelt gratitude to Joe Dispenza, for reminding me that anything is possible, even when it seems completely and utterly impossible in every way. Your words on so many occasions were my fuel and your resolute example, my invitation to keep reaching for something only I could see.
