An honest account of the day I almost hit rock bottom. .and how I found my anchor

The sun was shinning, just like I admire it to be, the beauty of nature was at its best, spent a lovely Sunday afternoon with friends that made me laugh so much, and made me feel so alive..it was a perfect day! or so you would think?

 

 I came back home and hit rock bottom..it hit me and it hit me hard.. that am not the same person anymore, I look different, I see differently, I feel different and am not my old self..

 

It hit me all of a sudden, it was like a huge wave came over me and I was drowning... I cried uncontrollably.... it also hit me that I had no more tears rolling down my face.. and every bit of crying and sadness just kept getting deeper.... I felt my hair and felt nothing there, I looked at my skin and felt so different...I placed blame on myself, the situations that led to all of this condition, and even felt like I wished I had never made it out alive!.. in those critical few days..

 

But hold off! I thought to myself I've had my moment, but I will fall down deeper and deeper if I make myself the victim of this situation, and felt sorry for myself, one of the worst emotions you can harvest in your body "self-pity" ..... I need to get back on track.. I need to stand up. my legs seemed weary, my heart heavy my mind sad but I pictured myself standing up, amongst being drowned.. finding my anchor... this is the time I felt the presence of people that had passed..! especially the love and warmth of my two grandfather's who gave me much to think about... and live by...

 I felt the presence of a cat Ollie l, we lost recently (some might think this to be quite immature) a cat!? but if you're an animal lover you would connect with what I am saying, and know exactly what I mean.. it was his presence his company.. 

......and it's strange how on certain days I feel the people that have passed from this journey shinning down on me... It was like a boost to my spirit...

 

Initially I felt myself falling into that deep dark hole, the hole I have visited before and is not a nice place to be.. I felt so much anger again within. anger towards many things.. and most of all anger for this happening to me.. I see people 'normal' laughing smiling and looking normal..but then again what is normal?

 

 I am beginning to learn that the word 'normal' has a new sense of meaning. normalcy could be anything or any place that is the root cause of your happiness and inner peace.. you have to create it and you have to find it. we are not to judge what another's sense of normal is...or looks like outwardly. .

 

a lesson well learnt yesterday.. That if we feel sad and down about something, allow yourself to feel it, it's human to feel sad and down, but immediately pick yourself up.. don't feel sorry for yourself.. and make yourself the victim of a situation... just when this thought kept playing in my mind I turned the television on, to a see a man with no limbs who is an inspirational dad, and not a word of complaint from this amazing person...

 

He suffered and was told he would never make it...and he was the 1% that did make it. Hearing that story of how he's family was given the bad news that he may not make it. brought back emotions and memories of what my family would have gone through when they were told the same news... I was talking to someone else that had survived a near death situation.. and people like us have a new found appreciation for life... we learn that self pity will only dig us a hole maybe even our own grave and take us to the deepest darkest depths, where finding a glimpse of light can be an uphill battle..

But seeing this amazing man that had no limbs and was surviving, I thought to myself what am I complaining about...

 

My life is perfect, I am blessed each day beyond measure... I have eyes that can see and is improving and a heart that has found the need to understand the finer simpler things in life...I have family that will give anything to see me well, a partner that has proved he will be there for me for the beauty I can nurture within, nothing outward or superficial, and friends that have given me so much love...

 

Once, years ago when I was about to get my first tattoo done I asked my brother what I should get  done, and he gave it a little thought and said get four stars on your back, to represent each member of your family and to always serve as a reminder that we always have your back! how true to this, just like the tattoo never faded away that promise didn't either..

 

Through the burns the hurt and the self transformation, and more so yesterday I felt the presence of my family, those who are still on this journey, and who have passed... I went out this morning as my heart still carried a little sense of sadness for how I reacted, I stepped out in the garden I felt my world transform there, I was in touch with nature... in touch with the plants my mum had laid down there for us to enjoy...

 

The wind that sent chills through me, and washed away my sense of sadness and with it brought me love and a new way of looking at a situation.. the warmth and sense of a God that is so faithful and renews his blessings each morning...with brand new mercies for us...

 

If you are reading this and are going through a situation that is dragging you down, weighing your heart, feel for it and move on don't stay there feeling sorry for yourself or worse yet making yourself the victim of the situation..... it's not worth digging your own hole to depression, I did it once... it led me to a lot of pain..

 

Enjoy and revel in nature, sometimes walking bear foot in a garden gets you in touch with nature, the sights and sounds soothe your soul and awaken your senses to get in touch with simple things in life... Money can buy a lot of things, but definitely not your inner happiness or peace or great friendships.... and sometime people that are so greedy tend to forget that their greed makes them lose sight of the things money can't buy.... go to nature where it's free, calm and rejuvenating and sense how you find solace in the darkest hours and find the fighter in you to fight it, when you fall...

 

Thank you to all my inspirations, you know how each and everyone one of you have helped me, and yesterday when I fell down and hard, I realized the many people that have carried me, and how sad they would be , if I remained a fallen soldier... Be the inspiration you are to people daily, for those of you who have helped me a long this journey, that once was a battlefield, but now slowly becoming my fields of gold..

 

 

Keep following this blog to find out how I am learning that taking rest is not a sign of weakness but a sign of strength to listen to your body... 'rest and relaxation' something I never indulged in because I felt bad....a story about an amazing 'angel' that is helping me out in this daily battle...only because she has been through something life changing, and is stretching out to help.

..and I thank you to those that write to me about my blog and how it's helped you.  Your definitely my inspiration to keep writing as I learn. .my blog is a true and real account of how I feel and my experiences on this journey.  With one aim to help and restore things we already knew existed within us

 

 

 

 

 

Facing what challenges our inner being, with bravery is the best way forward

Sometimes.. we need to face our challenges head on...and that's the best way to overcome it...

Seeing my mum walk out our front door with tears filled in her eyes, emptiness in our hearts and the thought of not knowing when I will see her again....was such a battle from within...I have been doing this for 10 years where I say good bye to them and it doesn't get easier each time... but this time in particular, was very different and  much harder because I know the journey we walked together...

She took me from a person that was dying (inside and out) to a fighting soldier who has come out much stronger and braver... she really saw me through that whole journey. Without a word of complaint or blame, it was never a chore to her, but she did it with all her energy and kept saying she wouldn't have it any other way..

All of that unconditional love and care I had to let go, in a matter of minutes.. but let me share with you how I found dealing with this parting much less disheartening and painful..

The bond we created in these two months is so strong, it's a bond like sisters or that of best friends... we cried together and she made me laugh, she showered Cameron and I with so much love and looked after us both with so much of concern... Even for Cameron to see her go proved quite hard as we had some great times.. cooking, gardening, dining, laughing , sharing fond and sad stories and strengthening our bonds, daily...it was a great chance for Cameron to also get to know my family on another level.. and I could see the joy and laughter beaming from his face...

Today when I look back sitting in this empty house I am so grateful for our time together..

When she walked out that door, I honestly felt like I was torn, my pillar that was holing me together was leaving and she definitely took a part of me with her, and she left a good part of her with me too..

Normally when I say my goodbye's to family I would run away from the house, shut the door to the room they occupied and stay away from the house so I don't have to face or feel the emptiness and loneliness...

This time around, I did the complete opposite... When she left for the airport, I stayed home... went into her room felt her presence and that she was gone, felt her every touch and love, and know the house was still filled with such warmth and genuine concern...I cried ... and cried and cried some more... walked into each room and the memories came flooding back, even the garden and the plants she put in there for us, the flowers she left in each room for us and her special cooking she left behind I immersed myself in all those memories...and it helped 'deal' with the pain...

This morning was the worst of them all. I missed her cuddles every morning, and the warm cup of milk and head massage I used to get, along with her daily prayers and strength.. but the beautiful care she left with me, I carried it on this morning, and it reminded me of her sitting right next to me... Facing the fact that she was not here, helped me face one of my worst fears... the fear of 'loss' and of 'sadness'..and emptiness. .

I am sure we all face so many fears in life, but facing it head on accepting that this is how you feel at the moment and letting yourself feel it helps deal with the emotion then and there, rather than build up and explode, any other way..

Even if you have lost a loved one, sometimes we tend to hide away from it and not accept it, or run away from it..

The old me, would have run away from a problem or an emotion..without dealing with it I would have run away in fear .. but through this am shedding the old and making way for the new, and would like to share what I learnt just in these few days, that sometimes in life we should dare to face our fears head on, fight it, battle with it, feel it and move on..

It does your inner self a world of good I have found.. I am still dealing with the new found silence in the house and not having my mum around....I miss her so very much... but I dealt and accepted that she was here, when I needed her the most, she did beyond her call as her mother and now she has to return back to her life and me back to mine..and we can chat ever day..just like we always did..

The scariest things in life can be overcome if we have faith... face our challenges with bravery and cloth ourselves with our faith in God, a genuine heart and the ability to feel each emotion good or bad.. and move on from it...feeling the bad emotions is something I suppose we all run away from or avoid feeling. I am guilty of sweeping the bad emotions under the carpet, letting it build up and exploding!

So be it a loss a heartache, a worry, hurt deal with it or deal with the person or emotion causing it.. it helps avoid a whole lot of toxins getting into our body's. When we live in a world that is consumed by being fake about thier looks, or appearances outwardly and back stabbing attitudes.  It takes courage to find within that tool to deal with whatever it is that bothers you. Head on.. 

This is the new me, and am still learning to deal with my sadness and emptiness, and overcoming it with feeling the moment, and then moving on to the good times.. Mum says " life is filled with the mountains and the valley's, we must learn to accept them both and deal with them both the same"..

My reality is slowly but surely sinking in life and everything else is going back to how things were, before I became ill . physically am not quite there yet. .. but I have faith that will also come back...

 the lessons I have learnt from it, is making me see life so differently...in a new light.. with new hope.. Sometimes, people that suffer from life threatening conditions have a whole new perspective and a new lens on life.. the lens of appreciation for every little thing, and situation and a new found faith in themselves, and their God and new found respect for family and friends that surround them

I have received so much concern from people just to see how I am holding up, after mum has gone back.. and if you are reading this , Thank you, so very special for thinking of us and the concern and care all of you have shown us be it if I know you directly or through a friend or family, I am still in awe and have the utmost respect for you...

It's little gestures, like this that make a huge difference in our lives and definitely what saw me and my family through a rough patch..such amazing souls within. .

Keep following this blog, with more lessons of learning to live in my new skin, the battles I still fight from within, the amazing healing stories and more extraordinary people that have made my journey lighter...

 

Trusting the process and living in the moment is challenging .. but it is within reach .

Patience is a virtue, we're told... .indeed. .. another trait my body is teaching me. .

Just only two months ago, nearly. ..was I in a hospital bed laying there literally dying.

While I was brushing and flossing my teeth, just recently. .I recalled the time my entire inside of my mouth was one big wound my throat full of blisters and how sensitive even my teeth were. ... I also recall the non stop bleeding from my lips that felt like it was never going to heal. .and how far its come..

Prior to this experience in life I was a person that wanted everything done instantaneously. .. and had no patience. ..

Now. ...
Am learning that the good things in life can't be rushed but must be savoured every step of the way. ..
Even while I suffered in pain I learnt to look at only the next moment because that is all that is ever within reach. . Savour even the painful experiences to get to where am at today. .to stop complaining about the little aches, pains,  discomfort and accept it with positivity. .

I haven't mastered the art yet I don't think any of us ever fully will... It's a tough one, but giving it my best shot..imagine how disheartening it would be to hear someone complain about an ache or pain first thing in the morning-- rather negative. . My mum always says don't complain. .instead praise God for every breath. .. and trust and have patience in the process.  ... of recovery and healing. ..

God doesn't give you pain or a trial without the strength to fight it
.whatever you may be facing today pain,  illness,  heartaches, worry. . Trust the process. ..

I have healed so fast. .. it still feels so fresh in my mind coming out of hospital but feeling so weak,  weary and depressed. .and helpless. ..

But my skin is healing daily,  my hair growing stronger and my eye sight improving. ..Gradually. .if you see the picture attached the right side of my back is fast filling in with my usual pigmentation. .in the meantime there is nothing I can apply or use for the healing of my skin or eyes to heal.  But have faith. .

Am trusting the process to heal and learn. .
We ask God for patience he gives us trials to strengthen our souls. .

For those of you reading this I hope you find patience in whatever you face and trust the process, without complaints. . Also if you hear me complain about my situation here's your cue to tell me off :-)

We're all learning so much along this journey. . But sometimes feels like am in fast forward mode. .to learning. . Maybe God's way of granting my biggest hearts desire to help another, through life. .and going through the fire. .

My blog will soon explore how I once more have to put the art of letting go to the test. .. More amazing individuals I have come across and more inspiring lessons am learning. .

It might be scary, but be bold and stay strong the world has an amazing way of sending you "care".

An overwhelming sense of fear and excitement dawned upon me this morning. ..
Was my first day easing back to work and back in to the 'real world' ..
....all this time,  yes, I stepped out but not into reality as it were. .. not to all familiar faces and places. I avoided them ... like the local cafe as they know me in there or for that matter any place that may recognize me. But today ... was taking that first step to the top. ... and wasn't the view just amazing. ..it waa worth the battle from within. .

I saw the most beautiful people out there.

So, my journey started off at 6:30 am nice and early. .. I was so nervous getting on a train of all corporate working people. .. With the soul fear of being judged! !.. I could feel a few stares or rather looks as I looked different to a normal person. . From the corner of my eye..I kept feeling  conscious about it. ... about all the head turns  (they may have even been all in my head )...and I turned around and found immense strength and love when I saw my mother sitting right next to me. . I was in my own little world but having her beside me was definitely the wind beneath my wings this morning. ..

Got on the train and my next stop was my daily cafe for my much cherished morning coffee . I was so nervous at thier reactions and what they may end up thinking. .. but to my amazement the lovely lady who makes my coffee said " oh you got a new hair cut,  looks great,  we've missed you".. I was relieved and taken a back by such kind words .. and this was also my opening line to talk to her about what happened and create awareness about SJS, with her..

The thought of wearing a wig crossed my mind,  I won't lie. . But with encouragement from loved ones and strength fron God I decided against it. Due to the fact that. .I won't have an opening line or a conversation starter to tell them about this awful condition and to be make them aware.. of how rareba condition it is.. my loss can be someone else's gain. . And here it was.. and I hope and know I will have more opportunities..

The next step was walking into work. .. While I was walking I hear footsteps of one little guardian Angel ... There she was running behind me a beautiful work mate to carry my bags open the door and from then on I was treated to royalty. .!!

Gifts,  cards, non stop hugs..flowers,  chats, emails and just a whole new level of love I had never experienced. ..

I sometimes still sit in awe for the past two months gone by, at the intensity of love I have received from near and far.  People say they are amazed at how fast I have recovered. .

But how could I have not?  With little angels lifting me up and a force pushing me to keep fighting. . It's not my strength. .

Here I was afraid,  ashamed,  anxious at how the world will receive and accept me...

I should have trusted and believed what I've learnt thus far in 2 months. .I am surrounded by such beauty and unconditional support. .

My message to those who read this blog too is go out be bold and be brave to face your fears and challenges. . If you show the world you're a fighter the respect and love you get back is a thousand fold. .your God will provide for you beyond your understanding. .

Sometimes when bad things happen we tend to question why me or feel sorry for ourselves or make ourselves victim to a situation.  Instead if we stand proud . And accept ourselves .. have faith in the beautiful nature of People around us we will be blessed...

More experiences to follow along with my healing updates.

To those of you who wished me well for my first day back a special thank you.  It's always very touching. ..

Fondest thoughts your way to all of you.  May the beauty in you radiate to lift others. .

Yes, you are strong enough to let go of what doesn't grow your inner strength

The fear, of letting go.. often we are haunted by this ...

Due to the sudden change in my life, I am learning the art of letting go of many things. ..attachments we should do away with. .feelings that are toxic to us and negativity around us

Anger and resentment. ..I had a fair amount of anger towards an individual. it was building up within me..during this I time. .I was on a very short fuse. . The toxicity built up.. it attacked me from within. .......... I am slowly learning that we need to let go off everything that serves us no good. .that is out of our control. .and just causes toxic emotions in our body. .I am learning to deal with how I feel for the moment and let it out of my body. ..what somebody else does is not my business if it affects me to accept,  deal and move on..revenge or for that matter in being resentful about something.  Is not our right.
I was initially angry at myself, for letting some simple day to day medication do this to my body. ..but I came to accept it and the sooner I did that the sooner I realized this was a way of my body getting rid of everything I should have let go , sometime back or then and there

Wordly possessions. . That have no value, but monetary. .. we should detach ourselves from such things. . While i was laying there in hospital the only reason I fought, was to see my family and loved one again. .not for any riches or possessions as all they bring into our lives are an unnecessary evil. .

Our looks. . What happened to me proves that beauty is only skin deep. . What matters most lies deep in the depths of our souls. .When I lost my hair,  my skin etc. When I felt those clippers been run through my long hair.  I clung onto it just for but a moment.  And cried out " please!!! No, not my hair"... today I've realized that too was an attachment. .it is sad that we live in a world of beauty pagents and reality tv where we are judged by our looks and rewarded the "better looking" we are. .promote fake beauty and back stabbing attitudes.

Do away with the negativity as my previous blog explained and focussing on positives..hence
...It's encouraging to know that there are non superficial people out there that love us for our inner self. .and are truly genuine as well. .

Each day let go of the past, the worries,  the heartaches and most of all the emotions that do us no good.

Stand firm in one constant, of a God that never fails you. . Attachments are temporary ..
But God's grace and faithfulness is guaranteed each day. .

Suffering through an illness that threatens your life.  Gives you a fresh set of eyes and a new heart.  To let go off all that is temporary and Wordly.

Hold onto love,  compassion, a lasting memory and the ability to dig deep beyond the surface.. do away with the anger and negativity.  Shed the old, make way for the new. .
My body is literally doing that; shedding my old skin, hair and vision and giving me a new..
Gradually my soul is learning that too. Let go of past hurts,  mistakes , losses and forgive and most importantly forgive ourselves for letting toxicity hold us back from living. ..

I am healing very well and fast so far and making the best of what I have got at the moment. . Keep following; on this progress and the next steps am taking towards my journey in inner strength. ..and facing my worst fears
..
thank you to all of you that follow my blog. ..I hope each day you are blessed and this may help you in at least the slightest way.

A thankful heart and a mind full of gratitude... results in a life filled with contentment,,

Gratefulness. . Is something we all fail to acknowledge. .we fail to see how powerful an emotion it is to feel.

With this condition,  I am learning the true meaning of gratefulness. .

Grateful for my life,I have new found faith in the ability to see good in myself and others.

Admittedly, I used to never understand what self worth meant until this impacted my life. ..

When I first came back home, from hospital and started going out to the grocery store or walking the streets I would hang my head down. Out of fear and shame; for having no hair, a scarred face and body, and the fear of getting " stared or laughed at"..

I am slowly learning to look at it through a new lense. .gratefulness for the breath I have each moment,  my ability to love and feel and for the highly privileged life I lead. .and guess what, with it, am slowly learning that my chin up with acceptance of myself as I am, means my head up with gratitude.

Self worth,  am learning is about accepting who you are just as you are, and the inner peace and completeness of embracing that you are good enough,  just as you are. ..It's a great lesson in learning to live and be comfortable in my own skin..

Each day from now I am grateful for this particular moment in my life and for what I have 
been through.  For it has taught me things I would have never learnt otherwise..

My old self used to wake up each morning with a negative attitude. .With something I can't do, something that will not work and that I'd never be good enough.  All negative attitudes. Which meant dragging me myself down,  to rock bottom.

Often notice how we complain about something small: a body ache, headache,  money problems,  a gloomy day. .(all superficial problems that will not be solved by complaining) But if someone asked us how we were and we replied with a great big smile and a thank you for " the moment" there is immense power in the now.  And we focus on all the positivity around us we'd lift people up..

I was lucky enough to be surrounded and be loved and nurtured by positivity. around me when I was critically ill...hence I have learnt the value of it. .in turn I think we should give back positivity and surround ourselves with people that are grateful and Thankful for their lives. .

After just about knocking on death's door,  and waking up to the most beautiful supportive family and friends I am grateful I can see,  hear, feel, smell and talk. So many disasters could happen but if we learn to live in the moment we will never lose a second. .

I am grateful and in such gratitude to the beautiful souls that helped me through this ordeal..

My lesson through this journey is exactly that. .gratitude and a thankful heart will never feel sadness even if we do we'd never feel sorry for ourselves.

The precious time I've spent with my family is nearing the end my heart aches but am grateful and Thankful for the moments and memories we've made. And bonds we've strengthened..

I'll say it out aloud I am blessed for falling sick and being affected by this deadly condition.  For I may have lost a few weeks in my life. ... but am much richer, for now I have gained the ability to be grateful the ability to love the inner person and made some amazing connections. .

Keep following my blog for I will soon take the next step into reality and update on my experiences and an update on the recovery and healing I am experiencing. .

CARE : A bunch of people that really lived up to their name. .

When I started working with CARE Australia,  I never quite understood that it's possible to have such caring work mates. .or even enjoy a job to such an extent. .I initially joined CARE as a result of quitting a role I didn't fully enjoy. .

Starting off as a volunteer I applied for a full time job and from the very start I was treated to warmth and care. .

When I suddenly fell ill they were the most supportive bunch. .and supported my every change ;ups and downs

My CARE friends visited me at home with goodies, food, clothes, plants and above all priceless gifts love, thier time and efforts. .and offers to genuinely see me better

I never knew that you can get love from people I didn't know that well... and to my surprise it was given so freely and without any reservations.

Again blessed to be a part of such an amazing organization ..and it also goes to show the amazing people that are a part of it.

I miss work dearly and am so proud and humbled at the same time that I  actually " miss" my job.

Work is not just my work place but a place I find warmth,  genuineness,  guidance,  comfort and great company. .

Those that looked after me and such amazing angels.
This blog post is dedicated to you my work buddies. .you are true gems.

For those of you reading this blog post I pray that you are also blessed with such genuineness in your life. .it is a rare gift.

Genuineness is a quality we should all nurture as much as I thought this world lacked it prior to this happening to me: my faith is restored that we live in a beautiful world. .

A saying that circulates in our office a fair bit is a song from the beatles " in the end the love you take is equal to the love you make".. have a think about it... wise words

To follow more amazing work CARE does www.care.org.au

Read more blog posts on the emotions that follow a person that is starting to feel comfortable in living in thier skin , lessons in patience and more amazing individuals. .

Educate before you medicate. .

Steven Johnson syndrome and laterally Toxic epidermal necrolysis has many a side effects and still is a part of my life. ...

It can affect your eye sight.  The cornea and make you photophobic. Which is, extreme sensitivity to light. .. as a result driving, reading,  watching tv etc can  be a uphill battle. .

Your Skin can be affected by permanent scarring. ..and my doctor informed me that there is a great possibility of this happening. .

as well as being dark skinned I never knew I could blush or turn red. . However with this sensitive layer of skin turning red is the norm.. can't hide my blushing no more :-) being in the sun is very harmful with this condition. .and needs to be avoided at all costs. .

There are also possibilities that your nails can fall off and your hair follicles not regrow which results in a hair transplant. .
Tooth decay and affecting of Internal organs are other side effects. .it affects all the mucus membranes in your body more research will indicate the areas in detail to you. .

Life is so fragile. . Mine took a turn in a matter of a few days. .life, share, love and wake up each day with thankfulness. .

Read instructions before taking medication. .as pharmaceutical companies do not display the dangers and complications that may come with these.

We intend to write to the relevant pharmaceutical giants to inform them to, at least display that these may cause life threatening allergies and SJS. .go to www.sjsupport.org.au. prevention is better than cure they say. .

I could have also been affected with much worse than I am.as mentioned above. .But  I can see. .. my sight slowly restoring. . have hair growing back. . My hair follicles arent damaged, but one scar on my scalp. . My reminder. . My skin is restoring slowly and have faith I will be perfectly healed. . God doesn't heal half way..positive attitude goes along way to overcome an illness,  am learning

I came across a saying a few days back; if the whole world were blind how many people would we impress??... Take a moment to think about it. . It sheds a whole new light on everything. ..

I will update you.. on my progress, with pictures just so you can see how God is working miracles. . Mighty ones. .and for all of you who have been so concerned and loving. .this is to let you know am so thankful for your never ending love

As my mum so rightly says if creating awareness saves one life.  My suffering is not in vain. I second that whole heartedly. .

Keep following my blog for more remarkable changes. . People ... attitudes and lessons learnt. .

To the number 1 lady in my life. .my role model. .

"The legacy I leave with you and your brother are not riches, house, cars or an inheritance. . But my faith in God and my love for you.".. These are mama's words to us up to date.  I admire her for teaching us, value in inner beauty as oppose to the worldly riches some promise thier children. .

My mother and I are more like best friends.
The tribute I pay to this lady today will never do justice. . But I'll try. .

During my difficulties she has stood by me. Never for once turned her back on me.. as a teenager I wasn't the nicest human being to be around.  But all she gave me was love...

one night I recall,  calling out to her in bed as I woke up and couldn't sleep as the "boogie man." scared me...!! poor mum came running to be my side in the process broke her ankle .. upto date I have not heard a complaint or a word of blame come out of her.

Another instance I was going through a very rough patch in my life,  over in Australia.  And spoke to her.  My mum can very easily pick it up.. when something is wrong, just from my voice. . Within the next few days. . She left her life behind,and was on a plane and at my door step.  I broke down she was there to be my shoulder. ..I have made many deeply regrettable decisions but she stood up for me and supported me..

At the age of 28 I am getting to know my life long,best friend, better. . I am blessed for falling sick as I am spending time with her, that is, truly priceless! !.

Each day she massages my hair with oil, massages my skin with moisturizer and looks after my precious eyes.  She showers me with nothing but love. .she prays with me, and strengthens me
.
Her giving attitude is such an example to me. When I fell sick the number of friends that supported her is a true character defining mark of her.  Hundreds of friends that carried her,  and up to date love her so dearly. .because she gives of her time,  love,  cooking,  nurturing,  caring and prayers without expecting anything in retirn..

I could never understand a mother's love because I am not one. But mama's love is definitely something God like.  It is unconditional,  unwavering and always giving. .

I bet you.. mama ...from the time I remember you and set eyes on you our bond became precious. .

After nearly 10 years being able to spend your birthday with you, again I am the blessed one. .

A relationship between a mother and daughter can be so very special. . And with today's tribute to my special mum I urge those of you reading this blog, to go on and tell them you love them ..a kind word and a gesture with no regrets..like my mum says love conquers all...

I thank both the special man she married, my father who is my hero and my mother my angel..

Our parents are extra special people who give without expecting nothing in return. . Appreciating and loving and respecting them back is the biggest reward we can give them.

I love you mama happy birthday! !I will miss you so when you go.  But am more thankful you came. And my heart overflows with happiness and gratitude for the times we've spent

In my despair I yearned for friends, I was blessed a hundred fold. .

The determined 7 we called ourselves in school. .it was an inseparable bunch of closely knit friends I belonged to. .

The numerous sleep overs the late nights the midnight feasts,  cooking together and playing pranks on people these were our childhood days together. .

Your childhood is the best days of your life they say, This statement couldn't be more true for me.. my class mates and I had the best times. .

Getting punished together was a blessing in disguise to us as that meant spending more time together. .the Convent education we received and the upbringing still rings true and instilled in us great discipline. .

The human beings it has made us, however. . Is something I experienced in my darkest hour. .

When all of them found out I was diagnosed with Steven Johnson syndrome and was critical.  The support shown to my family from the very beginning was immense.

From the time my parents boarded the plane, to get to me in Australia, up to this very date and I have no doubt for ever after they will be watching out for me.. They cried with them, prayed with them and upheld us all in prayer. .throughout. .

Some made vows in churches for me some dedicated their time, efforts and research into finding causes and cures for this condition. .some travelled far to get me food I craved and some even made thier own remedies and sent it across to me..

Some school friends I hadn't heard from in ages spoke to me just where we left off from. .it was and is so beautiful. .

The beauty of a  true friendship ... lose touch but be able to pick up where you left off from without any misunderstandings...

One thing I have learnt through this experience and encourage those who follow this blog. .

It's never too late to pick up a friendship no matter how far you are. . No matter the misunderstandings,years gone by. True friends will love you and be there for you, with nothing held back.. just like old times. .  class mates ,school friends all rallied around me and fought for my recovery. .

Age was no barrier and the support given was special.

Never underestimate how much you can lift someone up.  Little acts of kindness, deeds, support, love, may go along way for someone. .it really meant the world to me...

The values we were instilled in school and my school anthem came to mind..and how true we all stuck in it..

"When through life alone we journey
When our college days are oe'er
And for us the deep clear bells call
Rings its summons nevermore
Yet we'll keep the joy the freshness
Of the happy days we've known
And the rule of old we'll honor
Glory be to God alone..."

My blog will pay tribute to another extraordinary group of people. .
And updates on SJS and more of its side effects. .Happy reading and creating awareness. And digging deep for self awareness too. Daily the lessons I learn and gather I will share...

Our blessings are new every morning. .the moment we stop to see the bad and start to see the good in each day.. we notice how our life changes. .

Angel's come in many forms. .

"It's a friday night Dinushka what'd you say you and I hit the town..what are two young girls like us doing here"?..she jokingly told me when I lay in bed in hospital that Friday evening. .

Thim, my nurse for a few days was an angel that helped lift me off my feet when they had difficulty remembering how to fly. .

When asked to step out of bed and start to learn to walk again Thim was by my side. . She held my hand lifted me up and cheered me on to keep walking. ..she was more than a nurse on duty.

She became and is a friend,I made. ..

One day she took the time to sit down next to me and said " mate, dont let this condition make you fear,  living. .." she encouraged me to live life as it were and face challenges as they came. ..

She encouraged my courage from within and made me laugh and smile. ..

The irony of this story is I never could see her face. ..I didn't have eye sight to see what she looked like.  But am told she is beautiful,  and had no doubt. .

But through this journey of learning to live in my own skin and understand another person's battle I am learning now, to see people and see thier inner beauty. ..straight away as a first impression rather than any outward appearances. .

Thim and I got on so very well without me being able to seeing her. And she seeing me at my worst. ..

That saying the best things in life are not seen or heard but felt from the heart. ..I can vouch its true. .

Stories about amazing individuals that helped and continue to help me through this journey are to follow. ..
They've all taught me a lesson or two...

I only now, fully understand your love for me,

Nangi, ( which means little sister in sinhalese) aiya is here. .I heard those words and very faintly an image of my brother holding my hand ..apparently tears rolling down his face.  If I had seen my own flesh and blood dying and if doctor's had said there is not much hope, I, personally would be broken into pieces. But,  my strong brother came to bring solace and comfort to my mum and dad.  That, he certainly did. .

My brother and I are three years apart, him the older.  Sometimes, I wonder with how light heartedly he takes life and he's happy go lucky attitude you'd think he's a teenager... but he has made us all so proud with how he's lead his life. . And what that he's achieve. .he's same light hearted attitude he brought to me throughout my childhood and now to our adult years. .
He used to play in his cardboard box plane where he was always in control and I was ordered around...we used to often fight watch  wrestling shows after which he used to attempt WWF moves on me! ! In our teenage years we grew closer and I left to come to Australia when I was only 17. My fiercely protective brother near or far never failed to stand up for me, listen to me, be there for me, fight for me and of course fight with me it was all in good spirit.

These memories came rushing back to me when I saw my brother and sister in law's faces. . How safe I felt.

One day all I said was that my nails had grown and needed to be cut.  Seeing them both sit by my bed side cut and manicure my nails,  massage my helpless hands and feet,  gave me so much happiness. .

He sat near me and fed me my meals . Ironic, because as kids, growing up, if I saved some food for a later time it would have been snapped up by him before I could say, where is it?

This love and concern shown definitely saw me to a quick recovery. .

Yes family often come to your side when you need them the most no matter how or the circumstance... your loyalty prevails. However it  doesn't mean for one minute or instance that we should expect it or not appreciate it..Each and every time...

Each and every day I saw thier smiling faces it made my body fight harder my strength renewed and my faith in family bonds stronger. .

Getting to Australia from Abu Dhabi, without a visa proved a challenge when it was an emergency.  But with God's grace the immigration officer approved this special circumstance with a letter from the hospital and the visa officer had given him the good news saying "Dinesh you can go and see your sister"...

It's amazing how the strength of others became my own.. this instance of my very own family member that poured out his best to see me up again. .

My blog will continue to pay appreciation to the amazing deeds people have done strangers,  friends and friends I hadn't heard from or seen in years who helped pick me up. .

Thank you my brother for " I am strong when I am on your shoulders"... just like old times when we'd fight,  wrestle...only this time you gave me inner strength and the courage to face the next day also you taught me a lesson in being light hearted and taking each day with a smile. . And like that saying never take life too seriously,  no one gets out alive any way. . :-)

HOPE hold on pain ends. ...

Recovery can be a slow process.  Just at breakfast today my mum and I were discussing some of the options they were given for my recovery.  That I would have to come into hospital regularly for dressings of my wounds.  Be given a bath in an uncomfortable method and may have to have a cornea graph etc..

Thank God!  I have no dressings, came home with no bandages, have a bath the normal way and have eye sight that is daily getting better. .My skin is also slowly but steadily healing... From having burns on my skin,  to having skin that has minor pain is a miracle. .

Just this afternoon I received a letter from The Alfred Hospital confirming the diagnosis of my condition; thier prognosis and what my body has been through. 

Boom!! reality hits again. I won't lie there are days I see myself on the hospital bed laying helpless in pain. The pain, how insecure I felt,  and it scares me.

...then I look forward and think am here today living breathing proof of people's faith,  prayers and support. .

The emotional scars are not visible to the naked eye, like the physical scars are.  They take time to heal. . But through this battlefield I am "learning to live in my own skin"..

When I was at my best I never was content with how I looked . I always fought with my self esteem and the lower end of it most often, won!.

Today am at my worst in my eyes. . And am learning to love and live, in my bruised skin, my scarred face and my growing hair.

Am counting my blessings.. thankful I have eye sight grateful my hair follicles are healthy and growing back. My skin is regenerating and my outlook on life is new.

God got rid of the old and made way for the new.

I think, sometimes, all of us feel down and not grateful for what privileged lives we lead. How blessed we are and what fortune circumstances we are born to or inherit .

"Count your blessings, name them one by one. .
Count your blessings see what God has done. .
Count your blessings,  name them one by one
And you'll be surprised at what God has done"..
This was a song my grandfather used to sing to us from a very young age. .and the words are gold...and a fond tune that plays in my mind now....

If only we stop to appreciate our five senses.  Stop to smell nature,  open our eyes only to see beauty in others,  touch the lives of those less fortunate,  hear and speak only good of others we will have something to be thankful for each day. .

My quick progress baffled medical staff but proved we serve a God that doesn't fail.

We learn something new each day the time am spending now recovering from that of what should have killed me, is making me stronger. .

For those of you known and unknown to me I thank you for praying for me.

I still hear of people that I don't know by name, friends of friends, prayer groups that have upheld in me prayer. .

Each time sadness, anger,  frustration gets the better of me, I try to think of all the beautiful hearts that upheld me in thier faith and took me to God.  I am forever indebted to you...

Follow my blog and I will blog about individuals that have impacted my life with such love beyond any measure.
And my progress so you may find hope if your tomorrow doesn't look hopeful, if your fear is greater than your strength,  if your negativity is stronger than your positivity this story is an example that  there is always,  always hope if only we believe.

I trust and know I will be completely healed follow the progress. . I hope you spread awareness about this condition. . .

I was carried by Angels!

"Mama, I don't have hair"...I remember waking up and feeling this reality.  That my long locks of hair were gone.
" Angel (as she always calls me) am going to cut mine off too. My darling mother replied.  She dropped everything and came here in a heartbeat when I needed her. Above that she wants to share my pain..and even though I asked her not to she replied with a smile on her face " I want to do this for you"..

The next I saw of her she had taken off her precious locks too and there she was my mother,  my very best friend sharing my loss and pain..

My sister in laws words rang true to me " Dinu this is all an outward shell" that day the woman my mother demonstrated to be was and would be content if I can be half the woman she is..strive to be like her . Her love is unconditional and the lesson she taught me of her love for me.. the lengths she'd go to. And that all outward experiences are temporary,  skin deep. .

upto date she looks after me like her little baby. .

One of the first voices I recall hearing once gaining back total consciousness was that of my father's. .he's love, he's support and he's advice always rings true in my ears. .He was at my bed side when I needed him the most and my true hero my guiding light when I needed him the more. .he still continues to challenge, my thoughts keeps me thinking and guidea my every decision.  I thank you. .

A brother and sister in law that came to my bedside cried with me, played games with me at the hospital bed,  fed me, cut my nails and massaged my weary feet and strengthened my soul... They were our pillars of strength. .

Cameron who saw me at my worst.  He has seen me at my best and loves and supports me at my worst.  He's patience in this trying time. He's calmness and  love when he was facing a rough patch in his life is a true character defining moment in his life..

My grandmother who has traveled far and wide to churches to plead for my life, and now to praise God for his mercies. 

Friends and Family that were true signs of God's love.  Angels I have no doubt! !

A God that never fails and whose grace was and is sufficient for a lost soul like me. The unending prayers of family and friends are answered! . And I am healed. .

I was told I may not have working tear ducts in my eyes.  My mother was praying with me.. and blessings tears came rolling down my eyes.  Miracles happen each day. .

Please continue to read my blog I will update and upload my progress, my skin,my hair, God's love and the love of beautiful beautiful people that touch my life every day. .

even though this world is full of bad and evil don't ever lose your hope.  There is good. .

We were carried above a storm.

I lay helpless and so did my dear family.  The next faint image was seeing my brother at my bed side. Due to the tubes in my mouth I could not speak and had no vision. But I could still write.  And write I did....on a white board given to my hand. I wrote To ask for my brother , to Thank my parents and to ask questions that I seeked answers to ... like How's the Cat ?:-)

I eventually was able to hear and respond to my sister in law who is now more my sister and listened to her encouraging words, and heared my dear cousin who had visited inter state to be with me...

The hundreds of people that surrounded us with food for my family the many many calls they received from family , friends,  friends of friends,  from most parts of the world warmed and touched our hearts. .The number of people that had heard through my mother's Facebook updates and rushed to be by thier side I cannot Thank enough.

My classmates that shared my pain , cried when my family cried,  prayed united,  called from wherever they were sent their love across oceans. .

And especially my very own family my aunts and uncles cousins, nieces and nephews that prayed day and night that shared every single tear and heartache and went on bended knee to The almighty to plead for my life back.

To Cameron's family that sent well wishing cards visited me and showed me such immense support during the darkest times, Iam grateful. .

To my CARE work buddies who really lived up to our name of caring!  I am amazed. .

To the doctors that said I may not pull through amd to the doctors that had faith.  I thank you both.  For you planted in us a new found faith.  That there is a higher power that saw us through this.

The next two and a half weeks my life took a turn from knocking on death's door to opening a new life in me. From not being able to open my eyes to being able to see the beautiful people that visited me, listen to thier messages and songs

I died a little inside.  My old perceptions of outward beauty,  image and enhancing our outward shell all made no sense anymore. .it was more about developing our inner selves,  FINDING MY INNER STRENGTH AND BEYOND. .

I was a new creation.  From the two critical days of being diagnosed with a life threatening condition The doctors could not believe their eyes.  The progress I made They called it dramatic. .They thought I'd spend months in ICU Instead I spent two weeks. .

There are so many intricate details I could blog about but I think my life's journey will demonstrate the dramatic changes I have gone through. .

It is like I was picked out to be destroyed but then through the power of prayer the support of loved ones family, strangers,  nurses,  doctors. The Grace sent down to me from up above transformed me into a Rose a miracle,so I could live to tell this story. .

Please stay tuned to my blog to find out more about SJS, its side effects and my recovery. and how miraculous it all was and still is daily

To follow:Two beautiful parents that made sacrifices beyond their call of duty,  a brother and a sister in law that looked after me like they would a baby, my mother's journey to share my pain (literally) a partner that is supportive beyond understanding and friends that carry me on thier wings. .

Happy reading. .