"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...