In every walk and encounter with nature.. we receive far more than we seek...

It's been awhile since my last blog.. although I have had many learning curves since. I have not had as much time as I used to, to sit down and document it. Although I write in my journals to help me heal and reflect . writing I have found over the years, is good for my soul and in turn if it might help one other then it's worth documenting it. 

I was reading something this morning, that told me about the view from the top. if we're climbing a steep mountain and when we get to the top, we soon forget the pebbles and rough path we walked across to get there?... we soon forget the tiredness, the stones that hurt our feet or the little holes and sharp edges that may have derailed our path or misled us ... the view from the top makes you forget everything! but simply asks of you to enjoy the beauty and take it all in.

This blog is a little story about that... making it to that view, creating a safe space up there. and focusing upwards, and the mountains we carry, might just be what we are meant to climb instead. 

The month of May, as always has, has taught me many a lessons. A few days ago when we journeyed up a spectacular walk around Uluru and Kata Tjuta (one of the oldest rock formations in Australia said to be 600 million years old and home to a civilization dating back about 40,000 years on ) Note* we did not climb the rock as not climbing this is strongly recommended and considered sacred ground for the Anangu and all Aboriginal people.

image captured on first day at Uluru and the first time I saw the rock

On the way up that journey,  a few things occurred to me. 

How similar this can be to our journey in life, the walk up there and around it was steep at times wobbly and rough. The surface had stones, rocks that would often get in the way and you would have to move and veer from the path but you set your eyes on the horizon while only looking down to check what to avoid.

This is similar to what has been going on in my own life. From the time I learnt that my life changed and that I may have not made it or may not have had the chance  to experience or see many things. My whole perspective on life, people, situations and circumstances changed. Not over night but gradually it gave me a whole new meaning to what I will tolerate and what I choose to let go into wherever it is meant to go! What I find happiness in and the art of gratitude. The views I must enjoy while I can regardless... How much happiness I choose for myself everyday and that situations are powerless without my permission. 

I can only do my part to get there, I can't expect someone to carry me along the way, although if I did fall I would be assured of my angels to help me but I can only move forward through God's guidance, grace and blessing for me and my own desire to do so... Along the way if I am derailed or I fall I can only get back up and keep walking to make it to that view. Much like this month and since my last blog post, I have fallen a few times but each time I fall I can rest assured I gave it a better shot, I put in some genuine sweat and tears and I gave it a go, and I must stress less for it.. Sometimes it might take a few go's before I can get to that view and stumbling is a part of that journey. 

Stressing less about it, is a trait I endeavor to have and surely is the next step on this journey.

One morning we woke early to see the sunrise over this beautiful rock and my eyes just failed to function, it was such a blur that all I could see was white film over my eyes ! It took me back. a good reminder of how far I had come . Almost three years ago this was the eye sight I did have and how far it has come how many wonders I have seen, how many places I have experienced and the love and light that I have felt. I am enriched for it. The good far outweighs the bad and for that I am forever grateful

As the sun made its way up I could gradually see the light shine so bright bringing with it warmth and hope, as the struggle still continued I was able to still appreciate that beauty and find my safe place. 

sun making its way up over Uluru and Kata Tjuta 

On another day finishing one of our walks up to the Gorge, tired and out of breath I took a seat on a little rock, to admire the skies, the mountains and the valleys, the little holes which collected water, and to find a safe place where nothing in the world could touch me. In one of my readings again I came across this 'safe space'. It's a space in your mind and heart where nothing and no one, no situation can touch you. where anything anyone does or says about you will not hurt you. and you will let it pass over you

This space is something I am finding more day by day and reaching that view made me realise to find my safe space in my daily life. ensure to do my part. Give and continue to give but guard that safe space. 

the Walpa Gorge after a long walk we reached the mountains and the Gorge. A  little safe haven from the sunshine

One night we also walked in the darkness, paving our own path to find the stars, we walked among sounds of nature, and came to a point where we looked up and all we could see was the sky in all its grandeur. The sparkling stars, the milky way, I just could not believe my eyes! another reminder to me, to focus upwards always... look to the skies the stars, your maker and you will find your peace, all else will seem rather immaterial. My fear of the darkness had also soon gone away when I just focused on the million shinning sparkles that I could see. 

This journey to the rock, to see the stars to feel the earth was exactly what my soul needed to reiterate a few lessons in life. To rekindle and connect my soul back to the simple things in life, back to find my connection, and to awaken me to all the beauty around me. To focus upwards, inwards and find my safe space. To guard that and never let anything get through without my permission. Someone or something can only make you feel as small as you let them, the words of my father when I used to to feel disappointed about something. 
You have control over how you feel each and every moment. Just make it to those little milestones in your life where the view is amazing, you feel the warmth of kindness and genuineness and yet the freedom to just be.  

Of course I endeavor always to do my part ; in giving, in helping and in restoring but beyond that I can't ask for more but to simply take all the beauty in each situation gives me. the angels that might fly over  every now and then, the stars that may sparkle to remind us not to be afraid of the darkness, the stones and pebbles that might derail us but stay focused upwards and let that light shine bright with no intention of dimming another's. There will be days where it's only darkness no doubt- but that's when the reserve light you have stored within may help ...

Fields of Light to remember to keep shining while others shine their light too

Stars above me, to focus upwards, red earth below to ground me, safe space within me

Who knew that the mountains that I try to carry are sometimes what I am supposed to climb.. rather than carrying them heavy on my shoulders I should choose to climb them instead with faith and hope, and enjoy the journey wherever that may lead - I am sure the views must be spectacular! It's priceless.. 
if I reflect back on the past three years gone I feel like I have experienced a whole lot more than I ever would have if life didn't wake me up to this reality. It's not the riches, silver or gold but the little journey's my soul takes, the magnificent scenes these eyes have seen, the faith of others in me to help them, the answered prayers, the grace of an unchanging God and the precious souls I have met as a result . No doubt some have much more steep & rougher paths to walk, nonetheless well equipped for the journey it can make the walk a lot less burdensome. 

Thanks for prompting me to write again, and also hope this helps you in some way... These are lessons I have encountered, experiences i have grasped once I started to learn to live in my new skin
Feel free to get in touch if I can help in some small way
Love, light, blessings and healing

DV 

Celebrate your scars sweet soul.. they are a proof you have made it through.. - #SCLourie

What can darkness teach us about ourselves... A whole lot!

Eye infections, never thought much of them at all, until I caught one myself. I used to fear them even as a child, but as my condition has worsened I have dreaded it even more.
It brought fear,  uncertainty. The pain and re-living of a feeling I knew all too well. Not having my eye-sight. I was warned that eye infections will be common for me as soon as I wear these sceleral lenses. I had been lucky to not have it for the past 6 months. 

A few weeks ago, as a result of Stevens Johnson syndrome, the eye infection I caught was much more severe than usual. It required almost daily check ups . Those that go through this would know how much of  a difference it makes to your daily eye care routine. It meant just not being able to face the light. it meant straining my eyes and facing pain at work and pushing through even while it was very challenging.The light blinded me, and my eyes felt heavy and tired. Having a hard lens in there, meant I felt every corner of that lens rub on my already infected, inflamed eye.  It taught me to  readjust my ways similar to someone that was visually impaired 

There was one instance that I had to drive and it came to the point where I simply relied on faith alone to get me through a set of traffic lights as I could not keep my eyes open. it was too painful to look into the light. I honestly had little faith that i would make it through  

Sometimes, in our lives we go through patches of darkness. I learnt that even more- during the two weeks in that darkness I found myself through a little more soul searching..I literally had to shut my eyes, the brightness was way too much to handle. I am a person that loves to bask in the sunshine enjoy warmth. but this experience taught me that it's ok to sit in the darkness sometimes, especially until we are ready to come out. Until we're ready again . 

healing takes many forms. I suppose it takes sadness to appreciate happiness, brightness to appreciate the darkness, heartbreak to appreciate a good soul when you find it and chaos to appreciate peace.

I used to think darkness was actually never a place to visit or we shouldn't spend too long there. A stigma in some sense.  but you can find yourself in it sometimes. we shouldn't wallow in feeling sorry for ourselves for too long as that can take you to the victim mentality and lead to a whole different path during the darkness.  But instead, embrace the moment that you are going through, acknowledging that healing is still very much happening within your body and mind and learning to search through the darkness.


This eye infection took me back to when I first came out of hospital. required me to close my eyes by about 7pm each night stay in the darkness and look within.
I used this as a time to pray, a time to be so grateful for all that I did have in my life and a time to just listen to the sounds of my inner being.

here are a few things I found:
- Darkness can teach me a lot about the stars .. think about it at times like these we can either choose to say it's too dark I can't see anything therefore I choose to be sad, or we can choose to see the little sparks of light that help us find our way. 
- Faith! complete and sheer faith in my maker, belief to get me through the struggle
- Surrender : some situations you have to surrender and it's not always a bad thing. if it's a rough patch accept it is one and grasp the learning from the situation. Surrender does not mean a sign of weakness, but it could mean surrendering to learn what the circumstance is trying to teach me 
- if you lose one particular sense , your other senses are heightened. much like in the darkness, when you can't see you touch and feel your way around and you end up finding you way. Just like if you lose the willingness to keep going, or feel depressed and down; do some soul searching you will find within you hope, strength and resilience you never knew you had 

- Support how much it means and how very valuable it can be to have that in your life, and it can come in the form of a smile, a nod or just a simple I am here for you.

What would you do, if you may run the risk of losing your eye-sight or it deteriorating the next time you fell ill or it's closer than you know!?  I would live my life to the fullest , embrace all the beauty I see, form friendships and relationships that are based on genuineness and good faith. Walk away from situations that no longer make me grow it is a big part of my healing and well-being. And firm faith and belief to carry you through the storm . But mostly I won't settle for anything less than beautiful. And when I say 'beautiful' I don't mean surface beautiful, materialistic things, money , possessions or status. We aren't taking them anywhere on our journey 

I mean beauty my soul can learn from, positivity you can grow from, moments that take my breath away, new smells that make me want to explore, the touch of someone I  have much to learn from, the sound of genuine laughter; and the sparks of light during the darkness and the ability to learn from it.

I hope that this post may help if you are in the darkness, not in the literal sense so much, but in a situation that you may not see an end to, or illness and can't see or dont know where you're heading. it's not all that bad you know?  it can teach you so much more than you know. it can teach you so much about you, about your healing process.
May this week and month ahead of you be filled with experiences, good and bad ! they pave paths to our strength, a renewed faith and moments that may even take our breath away!

She was always looking for the magic & the miracles because it reminded her that living was a beautiful thing indeed #sclourie...

Healing.. it comes in many forms.... in the form of finding happiness, in the form of things falling into place, through things changing or through things existing, exactly how they are meant to be ....

Mine has come in many forms too.. Timing is definitely one of them... 
 

Growth, because of pain is another..

During a few days I had off, I reflected much on the beauty that surrounded me... walking out into the sunshine, not having to shut my eyes in an instant due to pain or discomfort, my skin feeling the warmth so much and actually not having a strong burning sensation,or having to cover up & avoid the sun as much.... sounds, colour and merely breathing, all felt so special to me...

almost 20 months on... from a great turn in my life... I can see that change has worked out, for nothing but the best...

It has given me the ability to not give up, the capacity to renew my faith and the urge to yearn for my happiness... The willingness to take measures & boundaries for inner peace ..

Happiness is not a thing, but a state of mind you learn to achieve..

Timing has played an integral part in my life in the past few months and how my faith has guided me...

A few months ago, I was preparing to leave to Boston in the U.S in search of a contact lens that could help with my eye condition. It is a contact lens that is much more longer term, permanent, bigger in size and also a whole lot more expensive.. when I was given this option.. I explored the avenue and for some reason or another something kept halting it... either the person I was corresponding with at the hospital didn't get back in time.. or the information I got was not sufficient that I had to keep asking questions..... many people offered up help, got me in touch with their friends and family over in Boston and my trip was almost about to be finalised.. when I had to visit the doctor yet again, for one of the many check ups.. and he advised me about an option available in Australia... that sounded very similar...

I was meant to head to the U.S mid may to find some relief for my eyes....

These words from the doctor kept nagging me, to explore this option, so off I went to look this up and in search of an optometrist that may provide this lens . which is essentially called a scleral lens. a dome shaped lens that sits over your eye, ideally not obstructing your cornea, but sits more like a shield over the entire part of your eye...

I encountered a few misguided avenues to find this, but that has definitely also been how I have been learning so far...

this also was something that kept delaying me from finalising my trip to the U.S as well..

Eventually called up the hospital I was admitted to in the first place and after being transferred many times, spoke to a fairly unfriendly person on the other end, after she had told me she can't help me, I managed to get a name of a specialist from her and she hung up..

I called them up and made an appointment within a few days to see the recommended doctor...In the meantime my ever encouraging parents & a helpful friend of my mother's who happens to specialise also in eye care, in Sri Lanka, doing their own research also came up with an option in new Zealand, I got in touch via their website; mentioned this condition & asked if they had what I was looking for...
 I also mentioned to them that I will be visiting this doctor in Melbourne...

The next week I arrived at the eye surgery in Melbourne and to my surprise he already knew who I was.. The doctor said that the specialist in New Zealand had already been in touch, letting them know that I was coming...Ever since they have treated me with so much of extra care and concern.. and been very supportive...

It turns out the specialist in New Zealand was a mentor/teacher to the specialist in Boston.. and I had found the source (in a way) and was delivered to a handful of good specialists to look after my eyes and the option that they could custom make this lens for me...

This is what my eye looks like with one trial lens in at the moment.. so far I would recommend this option (if I may) obviously with much consultation to those suffering from what I have - severe dryness, sensitivity, ingrown eye lashes, and scarring as this serves in my opinion similar to a glass covering your eye...

At first I was disappointed about not being able to go to the U.S...

took a few days to reflect upon it and as my mum pointed out, I had to separate my medical treatment from a holiday... and when I did, everything turned...things made sense... I slowly pursued this option... many, many doctors visits for fittings and trials... and all of this would have not been possible if I was in Boston for just two weeks...

This option enabled me to get the lens modified, fitted and even trial it for almost half a day before buying it...

As I write this I have given it back for adjustment of prescription, which is again, an option I would have not had access to...I am yet to benefit fully from this lens, due to changes... but I can testify that this option is available to me - that in itself is a blessing...

at the same time. I also decided to leave a work place I called my second home and a bunch of people that were like family to me.. I made this decision as I felt it was my time to move, learn and grow...

It was  tough decision, but I am about to start a job with another organisation I admire greatly and looking forward to a new adventure...

 

but when I was in a hospital bed let alone going back to work, I never thought that I would be able to see again... not having my eye sight for almost two weeks... 

These bunch of people saw me at my best & then saw me at my worst & supported me none the lesser. ...These friends I have made have been for life, and will carry that on...  This image below shows what I looked like few months into going back to work ..

I still recall how I felt when I woke up that day in a ICU bed, fear engulfed me, I felt like I was being strangled, I felt like I was having a nightmare and I may wake up.. but I could not open my eyes.. Only heard the sound of machines and the touch of people...

The distance travelled since, is purely a miracle .. 

here I am embarking upon a new start... having learnt so much from the past and grateful for it all....

If I had left to the U.S. , I would have also not had the opportunity of taking the next step in my career and work I loved doing...

in hindsight when I reminisced on how timing has played a key role in my life... how the timing of our maker & our guidance, it is never too late, or too early for us...Always perfectly on time ..

Whatever your faith might be, know that the higher power you believe in, will not give you more than you can bear...& the grace to get through it too.

Change has been ever present in my life, but more so after I fell ill almost two years ago... change in appearance...change in perspective and change in outlook .

there are times when we all experience some type of uncertainty, anxiety and general worry about where things may lead.. but I prayed so much about it and I know many more were doing the same for me... and as a result I feel that supernatural power work through the situation...- a heartfelt thank you...

Timing plays an integral part in our lives and how we respond to situations .. It moulds us .. We need to be open & receptive, I've found, to what we are about to receive .. 

I still recall the days when I got on a train or anywhere public & I used to look down  too shy to look up because of what this condition had done to my body burnt, scarred & little to no hair on my head .. I used to hide in the car if we had to go grocery shopping .. & have Cameron or my mum do it ..
slowly but surely realised beauty is skin deep .. And that sentence has a whole lot of emotion & experience behind it - now ...
as the blog is named the art of "learning to live in my new skin" is a lesson I take on each and every day with its challenges and triumphs..

Change & time; what it has done - a whole new lease on things ..

There are days I still question why I wasn't taken when God had the chance then I realise that my creator must have greatness to unfold ...

Am grateful for all that has been my blessings so far .. Sight, breath, the strength through family & friends & mostly the ability to dance during the storms ..! because of the supernatural strength I get...

I don't for one moment put all that glory and triumph on me alone, but am thankful to all those that guided me, advised me and God that guided me to take the necessary steps..

Timing can be everything in life, if only we stop to ponder, listen and reflect... the answers will start coming..

I have no doubt there are good days, & the not so good ahead, like for everyone.. but knowing that the pain has made me grow and the grace will be sufficient, makes me think onwards and upwards...

Thanks as always for asking me to write, these are thoughts I have had for awhile that I have wanted to share... in the hope it may help uplift or help at least one person reading this or going through it.. Fondest love ...

 

The lasting gift of lasting pain ... - strength

Challenging few months gone passed but this new year has taught me what to accept in my life and what to say no to,firmly & stand by the courage of my convictions 

My skin is healing well & has gone back to its almost normal self apart from sudden rushes of heat & feeling the hot days, but no complaints there 

My eyes on the other hand seem to be stuck at the same point making slow progress but still in need of constant attention .. 

It requires care, that is always on my mind and now slowly becoming second nature to me . It may require me to travel overseas for some special treatement that could be available for this condition. Meeting a doctor by chance that was able to give me this information & encouragement itself was a great miracle for me. 

Pain teaches us so much, especially when it's chronic. When it's a constant sensation of glass or an object in your eye just cutting at the edges, it's severely dry what do you do? Try to find temporary relief to eliviate the pain . I use drops every 10-15 minutes use hot and cold compression to help with weather changes and always conscious of infections as, if I get one I have a high risk of losing my sight as I have no tears or the means to fight them ..

using my own blood that was also turned into serum tears is another great miracle and medical marvel in itself .

It's about being constantly aware of this sensation and fighting it to get some comfort ..

Just like fighting the hurt and painful situations that occur in your life just to find some comfort & your inner balance .it's not easy but you have to in order to keep moving

As a member of the sjs group I also hear what others are going through and it gets very disheartened and sad. Most often we can be surrounded by this .. People going through illnesses and tough times in our lives . it hits me like it has affected one of my own as this is my SJS family now ..As much as i would like to help them & be thier strength ..it's most often what I am here for I feel..and why I went through this as one of the better reasons..

when external issues and challenges are thrown in the way, people misunderstand intentions or would add negativity to the journey, or i may have added negativity to someone else's journey .. I am learning to wish well & take that space to breathe easy. Not letting it affect the recovery process and living out the rest of what's given to me .. I often pray if I have done something wrong send the kindest thoughts to those that send negative energy,  pray & divert my attention, care and love to the many that need it from me. I choose to remove myself from the situation .. All I can do is give from the depths and goodness in my heart, without holding back and hope it is received well. if not then, that is my lesson to transfer the attention , elsewhere .. Taking deep breaths is highly recommended I hear and I have used it myself, as this helps you take in some good energy & remain aware of your breathing. 

Techniques to learn to control your thoughts and feelings is key I've learnt in this new year. Also praying about all the things that bother you and offering it to the God and faith you believe in .. 

It's about learning what you can deal with at any given point in your life & you learn what you can take and let everything else that doesn't sit right with you , doesn't agree with your soul let drift pass you without a moment hesitation not letting it affect your place in this world.. It's a difficult practice to do but it's worthwhile to try .

When I visited back home this year the number of people I met that felt happy to see me in good health really took me by surprise . I knew all these amazing people had prayed and thought of me but I didn't realise the extent or depth to thier words and emotions.. Being with them and around them felt so beautiful ....it helped me forget the rest of my worries for awhile and stay in that embrace .

We all have a sense of care and love around us, somedays are harder to see them than others but don't doubt your wholeness and how important your journey is to the people that care about you . 

Thanks for prompting me to write again, my family and friends , I had let my experiences slip and let the bad get the better of me on some days .. 

Also very grateful for the opportunities of the story of sjs being featured in a magazine and a major online news source, the quest to create awareness was alive & am very appreciative for it 

Learning to take in the good around you and block out the negativity is a process, and I am learning, always am...But well and soon enough I hope .. It's like the eyes that constantly bother us ( those with sjs would know or for that matter any chronic condition) you learn to live with a certain amount of pain and discomfort it becomes part and parcel of your life, you get stronger, & far more tolerant to pain but no more weaker or any less wiser for it..

you become a survivor ..not a victim of any of the situations you have been through ..it helps you learn your boundaries,  what you can tolerate, what energy you give out to the rest of your circle and learning to say no to the things that don't serve to bring you happiness or peace. 

Also another thing that a very beautiful lady I have had the pleasure of meeting as a result of all of this,  said to me :she is an organ donor but now understands the importance of opting her eyes for donation 

It's something I signed up for ages ago & have not hesitated or looked back on and depending on your beliefs on it, opt to donate too  if you can, it can keep a life going... 

I hope to keep writing as I learn . My fondest love, prayer and wishes 

Take me back, I often think...but when life forces you to accept 'Change' ... the take me backs disappear, to find your courage & resilience

There are definitely times I question my existence, times I wonder why God didn't take me when he had the chance? Times I say Why me? Times my sight is so weary and blurry that I can't even cry anymore with frustration, but keep pushing through..

While driving one day, reversing, to get my car into a parking spot,  one of my eyes got the better of me, I wear contact lenses to protect them (mainly). I backed into another car; all within the space of a few seconds as I lost my concentration trying to put back in place a contact lens that was merely falling out of place .. It was early hours of the morning in mid-winter too (dark and foggy) I was so angry and frustrated… just wanted to stop and cry! But I couldn't as I had to run to catch a train… I did inspect the car, no damage, but slightly to mine… (but that’s ok)

I learnt a valuable lesson that day, and the days to follow… my life has changed so much!.. Things, people, circumstances and my body will let me down…

This winter hasn't been too kind to me, from falling ill, to being identified with a few other complications, and long term effects or illnesses I have never had in my life before…. So this is what Stevens Johnson Syndrome does to you, well after it’s gone and you’re out of the hospital. It changes your life forever… it changes your life to become weaker, more susceptible to illness & more open to change…

A year and a half back I still recall my life, more so my eyes and go, wow that was what it was like to have good health...and I didn’t value it.. Today my eyes are a gift from God and I value them a thousand fold.

The lesson it has taught me is that change in our lives is inevitable, we can either accept it wholeheartedly or complain about it. Either way it will happen….

We must make the most of it…  Walk away from things that no longer serve us or make us whole, or bring out the best in us & live amongst what nourishes our soul

It could be illness, a change in a job, a difficult move we have to make, a change in relationships, a number of different things that has changed your life….

From that day I felt life saying ‘slow down’…what you can do has changed dramatically…
plans change, nothing is certain anymore and the next day could be a challenge or run smoothly..

As the doctors told my parents, my recovery was dramatic, so are the changes it has made to me now…

So to continue the story, I felt like I had been a bad person running into the back of someone’s car (and they were not there) but there was no damage another passer by inspected it too as I asked him to, and he said “I wouldn't worry about it”. I still felt so bad in my heart for not leaving a note saying I rammed into your car, please contact me so, least so I can tell you the truth just so you are aware & apologize… 
...I hurriedly ran to the train and there was this lady stumbling with her clothes, a bag, one shoe in hand the other on the floor trying to validate her ticket and to get on the train that was waiting there (ready to go).. I said can I give you a hand picked up her belongings and rushed with her to the train. She turned around, and said ‘Thank you, you saved my day’… I am not trying to emphasize about the helping hand, not in any way, but just saying, the world offers us the bad and the good… after hearing that I could have helped someone in some small way, then therein lies a complete day , it felt like a sliding doors moment (if anyone has seen the movie, you will get the reference ) ..

Change is scary especially when it’s a decline, or so we think.. Something’s happen in reverse, or for the worst, right?

So we think… but I am starting to think all change is good.. Since then there have been big and small changes in my life…mostly taking a turn that I don’t understand..

But that’s ok, we don’t need to understand everything, so long as we can be happy… Happiness lies within yourself..

If you haven’t read it, you should try to read the book 'Who Moved My Cheese?".. 

Bring back my old life, often said in my mind.. Not so much anymore..  Enjoy the now, that’s what I think of… take the opportunities while they are there… thank and appreciate those that have been a loyal source of strength to you, pray for all those that cross paths with you good or bad, they brought about change too, and bless everyone that comes your way… not to say there still aren't days I go back on this... but it is more inbuilt now.. 

Life has a way of making you accept change… Some forced and some changes are optional, or it gives you many options, whichever one you choose have the courage of your convictions & take each day as it’s meaningful … I learnt the hard way, that your health is as important as the sun is to the plants, as food is for our body and as happiness is for our soul.. It can be pivotal… but if it takes a turn let it… you never know what adventures, lessons, people and glimmer of hope lies there..  Through this I have been the lucky one to cross paths with some wonderful people out there, known & unknown to me.. and that's the plot twist about change... if it starts in decline, or for the better, it's always good ---  

Thank you one and all for those who have been in touch about this blog and have asked me to keep writing, I sincerely write what I learn and what I would like to share... just in case you may be having a day or an experience similar to mine.. 

I also promised pictures of my progress throughout my blog. which was why I initially started this blog. as a means of keeping those who were in touch and prayed for me about my progress.. talking about change and what it does.. these sayings below are worth a read and also a photo of change in my eyes, a day that it would just not stay open & was painful, and a good day (that they lasted) I wake up and never know how they are going to behave.. but I tend to take 'change' as my challenge for the day...

Change; own it.. 

One year ago....My sincere thanks....

One year ago...life took me by surprise.. usually surprises can be a good thing.. when I think of a surprise, I think of people hiding in a little room yelling out 'Surprise' when its your birthday or your celebrating something! or been taken somewhere you weren't told about, or having a surprise gift on your doorstep..

'Surprise' this time was of a whole different kind. when it happened it was the worst thing I was going through, it would have to be on my list of worst nightmares!
Life threw me a curve ball! indeed...

But one year to date, when I look back.. Phew! has life made me grow up...life has taught me lessons I would have never learnt.

It has made me deal with the worst kind of anger I have- anger I have for my own self; doing the wrong thing, at the wrong time... it has made me deal with depression, sadness, emptiness, loneliness. But in return it gave me the gift of perception, gratitude, an appreciation for each sense and a brand new lease on life..

It has made me value the moments that make me smile, but also the moments that don't. to realize the hilltops and the valleys in life, and cherish them both, as they both won't last forever...
It has made me see friends in people I would have never known, rekindle old friendships and made me wake up each morning with gratitude..

People have been asking me, recently, does it feel longer than a year ago, or less.. it feels like a hell of a lot longer than a year, when I was standing on a cold night in a bar in Melbourne having a few drinks with old school friends and then everything changed... little did I know I would spend the next almost 3 weeks in ICU and the next few months, having a whole new sense of myself..

I don't know if it is a good or a bad thing, that I feel like it it is longer than a year, but no one can answer that... all I know is it has been very rough seas, constant medical appointments, unpredictable health & a whole lot of sleepless nights, and sore eyes... a change in what I used to know of myself outwardly, and accepting the other challenges that come with it..

if I have bad day, each day at night I try to lay those negative thoughts to rest, I say to myself when I wake up. its a new one who knows what it holds, but I can make it consist of smiles, good memories, positivity and light..

it's like I was cruising along and it hit me with the most unexpected condition I still suffer with to date..and will probably for a long time to come... so be it...

The daily concerns this has thrown me is beyond anything I could have expected ...
This blog is to not re-live the past in any way, but to be thankful for the memories created in this one year... for the angels I have had the pleasure of meeting, the laughs shared, the cries you have heard from me, the concern shown , the understanding given when I have not been reliable, the constant care and love showered and the invaluable bonds formed throughout this year

Steven Johnson Syndrome/ Toxic Epidermal Necrolysis is deadly and is still not heard of widely enough, so here we are in August to help create awareness and I will send you a blue ribbon (for free) if you wish to wear it for at least one week of the month - for us survivors, and ones that lost the battle with it. and spread the knowledge, that you should always Educate before you medicate

It is not in anyway a regrettable experience, but one I will no doubt remember for the rest of my life, and from one year on - for all the good reasons.

Thank you..

"Taking a step backward, after taking a step forward is not a disaster, it's a cha-cha!" - says an Optimist

"Keep going, young lady" were the wise words of an elderly man I once met while I was working as a waitress in Australia, almost 9 years ago. my very first job in Australia, and my first experience integrating and living with other cultures and working here too..

 

This was in response to the boxing day Tsunami and when he found out I was from Sri Lanka, and how devastated he was for us, as our nation lost so much. He was inquiring  about my origin and then went on to encourage me and those other Sri Lankans he thought of that had been affected by this.  some had nothing, absolutely nothing at all.. they were shed to the bear minimum.. just that body and soul...

 

These words of his often kept playing on my mind... Keep going..

 

As most of you know, or those that follow this blog know, now, almost the past 9 months has been an uphill journey for  me...

 

How am I coping? not that great... on some days! and some days are far better than that..

Since my last blog, I have travelled to meet a 10 year old SJS survivor, and been able to spend some time with her and her family, been a bridesmaid for a very dear friend, about to be a God mother again,  participated in a Walk in Her Shoes challenge for CARE Australia, and well exceeded my goal, attended concerts and done things I have always wanted to do before my journey ends.... and looking forward to many more things the daily life offers me...and making the days count...

 

has it been easy? not by a long shot...

 

 

Recently my eyes have been giving me a lot of trouble.. from the constant sensation of something being stuck in there, to ingrown eye lashes rubbing against my eyes, to redness, and being sore.. Having trouble driving, to having trouble even facing the early rising sun. having face to face conversations with people is challenging due to focus issues, and just getting through daily activities, is a task..

  I often feel like my days are numbered..

 

Aren't all of ours you might ask? indeed... but sometimes I wonder why God didn't take me when he clearly had a chance, an opening..

 

I am constantly in and out of the hospital to meet doctors, appointments, scans, tests, to good and bad news...

 

Sometimes wonder if this is any way to keep going, as when I have pain I have to push my pain threshold a little bit each time.. as I can't take pain killers just yet... each time my eye feels like shutting, I have to listen to it and just shut my eyes, wherever I might be at the time...and when my body says enough is enough.. I am learning to submit to it..

 

The past 3-4 months have been very unpredictable I can't be as reliable as I used to be. I could make plans and it could all fall apart due to my unpredictable health... I am so very lucky and happy I am surrounded with those that understand this. And support it and some amazing people that are my support network..

Anger, frustration, sadness are emotions I deal with on a daily basis. and when I say deal I mean encounter them every day, almost... I used to fight with them, now am learning to use it to my advantage.. to grow my passion about things I feel very deeply about, about things I feel right about society and use it to voice my inner battles as well... I am sure I fall short; almost always.. but I am hoping to learn to convert this negative energy to bring some positive light..
 

I used to come from a very active lifestyle, where I used to pack in a fair amount of things in one day, and all of a sudden to feel restricted and held back... is a big change at the moment...

 

but what am I learning now, to enjoy the little things in life... Now, if I can't open my eyes any longer, I close them and listen.. listen to the sounds, the minor sounds I never paid attention to before, people, laughter and each and every time It makes me come alive even more...

 

I will share a coping technique that I am slowly learning too. I wake up each morning thinking "Thank you".  Thinking I can see and for those days if my eyes have done the unpredictable and want to give me limited sight I still say Thank you.  Then I step out of the house in prayer. . For others and for my health.  As the day progresses and my eyes get tired I keep pushing on

 

Only my very dear mum would know how many times I've called her up saying I can't do this anymore!!.  I give up. .am tired,  am weary. . And her response is.  You can't give up Dinu. .My God spared you for a reason.  Your time isn't up just yet. ..

Then I keep pushing on... fighting with what each moment offers. .and her constant support and love I get from family...

 

SIS survivors reading this would know exactly what I mean. 

You're eyes are so precious and when the use is limited, distorted and painful it can be life altering...

 

One day, I couldn't bear the pain anymore, I went straight back into emergency back in the hospital in bed for almost the whole day... brought back the worst memories, of where I was... the pain, the discomfort.. but it gave me so much of hope too to know where I came from and where I am at now..

 

The images below, one was from the very first time I was taken into hospital in an ambulance looking like a corpse...to where I am at now ( a few months ago, at a wedding) of course my hair and make up were done by professionals.. but I was so touched that friend so dear to me, asked me to be by her side, on her big day! with all that I have been through.. the scars, the impaired vision, the limitations that came with it..

I know most of you so kindly always say I am looking well - Thank you from the depths of my heart.. but getting there from where I was at, is purely a miracle... and guaranteed thanks to the Angels that have helped me...

 

This is why, I can wake up daily, and say Thank you even when things are so rough.. because I truly can see my blessings...

 

They say the best things in life aren't seen or heard, they are felt... I am such a big believer of this statement and a true testament to it too...

 

The power of God that never fails... each and every time I have clung on in faith knowing that this is yet another hurdle I must face...and miraculously he comes through...

 

These past few months... there have been various changes in routine, weather, outlook, perspectives and my health... but the method and practice of gratefulness has helped me so much..

 

If I see flowers bloom, a bud coming up on one of my plants, I look up in gratefulness, green grass, birds chirp, people laughing, or my eye sight slightly better than yesterday.. I am very thankful... I feel like am here for a reason.. maybe revealed further down the line...

Taking a step backwards is all a apart of this path & road we walk... sometimes we can move forward and sometimes it feels like where taking ten steps back... but like they say, if you stumble make it a part of the dance...

 

Thank you one, and all for following these blog posts as writing is one way of my inner healing and to hear back from you that it has helped you as well... is truly another thing I am very thankful and appreciative of

 

Try this technique of being grateful. I am not expert at it, am on a trial basis still. have been at it since I came out of hospital... . Try to find answers for what is interfering with my health....and get on with life to the best of my ability..

If you are going through something that is persistent, as well.. that seems to perseveringly give you pain, trouble, discomfort and something you battle with. I urge you to try the method of being thankful, even for that... I have found it has helped me get through the minutes of the day, that eventually turn to weeks and months...

Surround yourself with this positivity too, and people that bring that out in you and create that safe environment for you... it really lifts your spirits..

My quest to create awareness is still alive and I have been writing articles and hoping it will get published too.. In the meantime please spread the word... the reason I attach these pictures is for one: so you see the progress and miracles working and secondly also because it shows you how badly medication can affect you...

 

May your days seem brighter each morning, and your nights bring you inner peace and renewed strength for the next day...