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