A Jab of judgement!

3rd December is celebrated as 
International Day for Persons with Disabilities. Last year some where during this time I had been to the Disabilities Commission to attend a legal matter. I remember to have seen a scene which had effected my heart deeply..little did I know..I too would have to go through a similar situation today..just about a year later.
I remember a young couple had entered the parking zone of the government office and was getting their car parked in the space reserved for the disabled. As soon as they parked the car I saw the man get down from the drivers seat and went the other side to open the door for the lady. The lady holding the arms of the man slowly was trying to get up...when suddenly another man appearing to be one from the security started lambasting the couple for parking their car in the space reserved for disabled....why? Apparently because the lady looked well dressed and beautiful, with her limbs, arms, eyes.. everything appearing to be perfectly fine! She no way looked disabled! The security now supported by some more people, continuing his angst against the lady kept muttering..how people misuse the privilege!
The man supporting the woman, who was struggling to stand on her legs, politely informed the security that his wife was suffering from a rare autoimmune disorder which is invisible to our eyes and that she was too weak to walk let alone stand on her own! The lady who thought of attempting to walk without crutches now was forced to take it out from the car..just to convince the security. But the assemblage in no mood of understanding forced them to park the vehicle far off..unendingly babbling 'how dare they?'

I kept wondering why were those people so rude to her?

It’s now after a year when I myself have been diagnosed with an invisible autoimmune disorder called Myasthenia gravis...that I got the answer.  Instant judgements!!! That Iady din’t look like the world thinks a ‘disabled’ person should look. She was not old (enough to be disabled as is the general thought of people), physically deformed, there was nothing glaringly and obviously wrong with her when you look at her.

My condition today is no different from that lady...I can clearly sense people being uncomfortable around me because they are not able to understand as to from which angle am I disabled. So in a flash judgement passed... there is nothing wrong with her, she is probably just lazy wanting.

A similar incident happened to be in AIIMS, when I was sitting in my wheelchair and waiting for my turn in the queue to meet my doctor. By the end of two hours I was so exhausted that my spine had bend making my head reach between my knees..my eyes too had drooped..but with my half eye I could see people staring at me unforgivingly.  I had grown chubby with steroids dressed well and apparently youngest in the whole waiting hall on a wheel chair!

Seeing my condition deteriorating my husband requested the security waiting outside the doctors room to kindly check when is our turn. A brief look at me and he made his judgement and catapulted us back saying there are many more 'deserving' people in the queue!
When finally we met the doctor and I came out of the room...walking wobbly holding the walls and door with my neck now totally drooped and right arm totally paralysed... since my wheelchair was parked outside during my examination... I could sense those eyes that were unpardonably gnawing at me 15 mins back.. had turned aplologetical!
The same security guard forgetting the budging crowd came and held my hands and took me cautiously to my wheels. Putting a lot of efforts I pulled my neck up and Iooked at him to thank him. I noticed
he had became really warm and apologetic. Is this because he could see my disability to walk, my body now crippled with the nerve twitching and pain... my obvious discomfort..now something tangible he could assimilate?

It was interesting to witness the reaction of the rest of the people including the elderlies most of whom even stood up and came to help me get seated on my wheelchair..appearing totally shocked to see my real state! 

In the last six months my fluctuating conditions...sometimes on wheels..sometimes on crutches..sometimes almost blind with both eyelids drooped... sometimes dumb with paralysed tongue.. has made me immune to the judgements and reactions  of others. If I am not in my wheelchair or using crutches no-one would guess I have any health problems.  However it is bewildering and saddening that people can be so judgmental towards those with invisible disabilities. 

I try my best to no longer allow the words or actions of others dictate how my day goes. I have no control on what others think or say but I  hace learnt to choose the way I react and feel.

I very well am aware situations like the one above are sadly all too common, and I always am in a dilemma on is how to react to it. It is a shame that people aren’t always as compassionate and open as we would hope them to be. All I can continue to do is to treat people with the same love and respect I would like to receive...that i truly deserve!

So what do I do when someone intentionally tries to ruin my day with such an insensitive reaction..or judge me for taking rest to get over the fatigue and bring back my paralysed organ back to life..which means lying on bed for a whole day or may be even days..without looking sick?

I choose to rest without shame or guilt as I am not resting..I am healing.. and I choose to forgive them because their choice of being rude, misinformed, judgemental and ignorant will only appulse them for life, than me for a day!

Inner voice!

The lively murmur inside me,
absorbing positive and negative pulses all day long,
making me paranoid of what is right and what is wrong;
it's like soft limp ache
abiding in me without a name,
It whispers but without words
So as I stay silent and my soul hears;
For there is a language that the soul can understand,
which cannot be assimilated by my lame mind;
it notices the silence within me
which is more powerful than a scream,
it taught me my silence was my voice
fight the pain and smile is its advice;
oh my inner voice! never be afraid to tell me who I am,
Because whether you tell me or not
I will find it out eventually;
No.. beautiful voice inside me.. I will not try to silence you,
because if I do soon u will become a roar;
So the quieter I become
the more I hear!
Like the shell that needs to crack and the seeds need to tear for roots to begin,
my beautiful inner voice taught me embrace the fire to make me whole again!

Bird in the cage!

Staring at bright blue sky
Where the flock of birds were flying so high,
The caged bird wished to spread its wings and fly
And dreamt of being among the clouds
With its tiny closed eyes!

Stalking through the thin bars of his cage
Wishing to dip it's wings in the orange colored sky,
its heart and soul filled with rage
It wished to dare to conquer the sky!

Left open was the cage door
It moved out with joy in its mind
In the silence taking a step more
Not once it looked at the cage left behind!

All in just a piece of sky
It realised it had forgotten how to fly,
It decided to risk falling from the high
Just to devour the freedom of flying in sky!

Though it couldn't find a flock to join high or low
It realised the truth that it's broken wings grew stonger
The more it fought the gravity of darkness .. solo!

Cool breeze!!!

Crackling between the tree doffed off dry leaves,
swirling and twisting came the bucolic cool breeze;

I could hear the music that the cool breeze was carrying with it from lands far off,
Enjoying the sensations I felt as if I was gently being lifted and placed on a high isolated cliff;

In the pitch morning silence I could hear the breeze murmuring secrets in my ears,
Striving tenderly and gingerly to erase all my painful memories and tears;

Dancing in and out of my window the cool breeze clasped my soul to teach me to let go,
And when I promised to endeavour to do so, the cool breeze left me searching for other wounded souls!

I closed my eyes in adoration of the cool breeze crinkling away,
It made me wish, to a place where nobody know me or my name, I too want to get away!
 

Silent day!

Loss of ability to speak...makes us realize the value of communication...is it not

Today I greeted my morning completely enthralled, since it is my younger ones birthday. Little did I know this over-excitement would cost me my voice.
The emotional surge of wanting to do many things to make my son's day special...but at the same time the frailty to do anything but sit on the bed and keep mumbling my plans...caused immense frustration in me leading to a severe seizure. Being without any warning, I could not get the time to alert anyone for placing a piece of cloth in my mouth..as such the seizure resulted in deep cuts in my tongue thus leading to bleeding (no no not eewww...say ouch).
Living with chronic illness I am expected to know that the pyramidal voodoo of ongoing physical symptoms, psychological distress and the discomfort of medical procedures can cause me to suffer. Yet I preferred to forget that!

After I regained consciousness I realised my wounded tongue and my speech muscles had got paralysed due to the stress I made them go through... and so they were the chosen one for the day (hope not days)... by my rare disorder, Myasthenia gravis. Therefore today is my day of silence!

While I was busy eating my heart out fir the sudden loss of speech I realised how my fragile speech muscles and tongur really needed a break from my daily nonstop chattering!

So accepting this sudden paralysis positively I thought I can handle the day but a couple of hours of silence made me realise that more than basic communication through action my main challenge was to prevail over my urge for family interaction and inclusion. Within no time I understood that along with my voice it was my personality that had evaporated with my speech.
I wanted to share jokes or say something lovingly to my kids.. but everytime I attempted it, by the time they could guess it either they lose their patience or I lose the moment.
By the end of the day I gave up my efforts to get involved in the conversations and  confined myself to just listening. Though my family tried their best to include me in the conversations but I have to admit..i did feel a sense of isolation and sadness, even though I was never left alone by my family.
But not being able to sing the "Happy Birthday" song for my darling son, when the cake was being cut...let alone stand on my feet and lift him up in my arms to cuddle and kiss him...has created a deep wound inside me. I felt nothing but powerless!

Today I had to place reliance on all for each and every thing. .coz neither my legs nor my arms (again thank you MG and PNESeizures) or my tongue supported me!
I guess through such sudden communication breakdowns, my God intends to teach me the importance of my supports and the unbreakable link between ability to speak and the autonomy of a human being.

My wandering thoughts reached those people who cannot communicate at all or easily and effectively...for life! I was finding a single speechless day difficult but for some people it is the unending reality of their lives.
These thoughts made me reflect upon my wish to just engage with others, to enjoy life and participate in my relationships...with my personality, my strength and my independence. These are the things that really mattered!

We all need to realise that we will miss out many beautiful things in life if we do not say ...i mean clearly speak what we want, didn’t want, needed or didn’t need.

The itch to speak made me attempt to speak, resulting in exhaustion and pain...so I finally had to let go and accepted that I needed rest to give life to my paralysed speech tools!
This is very much similar to worsening my life without inner healing.

But is this world set only for the healthy and the able? I have noted that many chronic illness sufferers use a language of loss. 
But wait . . .I need not and I wouldn't!
This ailment has definitely given me restricted my life from all sides but it has also upheaved my awareness of a world totally different from that, previous to my diagnosis.
The last six months have boosted the epiphanies about myself...my experiences have influenced my acumen about human disposition.
But i sincerely do wish people change their views on those with chronic illness which are incurable and can only be managed such as Myasthenia gravis..clearly understanding between those who are living with the enfeebling reality of chronic illness which is per-diem in nature and those who at one time in the past may have had an episode of serious illness – and then had recovered...they are different... sufferings. .restrictions are different...chronic is for life !

I have no regrets for my speechless day today...as i spent the day of silence re-evaluating myself. I found that freedom from speaking uprised my cognizance of who I was and who I wished to become not forgetting the constraints imposed upon me by the autoimmune disorder.

I am actually grateful to many people in my life who has encouraged me to take my ailment as a tool of self- discovery and self-development...in rebuilding that sense of self.
Feeling low and bleak is inevitable I guess..but I try..trust me real hard...to view things in an itsy-bitsy gamut to help reduce my suffering and control the crumbling of my self image!

I know very well the emerging new me may not be as good as, the old me. But it doesn't matter...anymore.
As of now every step I take forward, no matter how miniscule it is, it pulls me out slowly from the deep pit of anguish and cynicism where I am stuck... clearly keeping in mind how bootless it is to the nth degree to wish that what happened had never happened!

MY SOUL HAS NOW CALMED DOWN!!!!

Dancing trees!

Dancing to the tune of the wind are the trees
singing in chorus are the ever rustling leaves;
I let the cool breeze overtake the soul of mine,
As the warm sunlight fills the winter sky
The warm rays penetrating my skin
Appreciating the magical mix of nature I let myself sink!

Hot cup of tea!

My early mornings with my hot cup of tea,
When the world is still deep asleep;

I feel I am the only one awake and warm,
to enjoy the surrounding stillness and calm;

I watched the beauty of the steam formed when my tea was exposed to the faint breeze,
Blowing and sipping the tea and feeling my mug's ubiquity;

Enjoying my morning with sound of crows,
I spoke a hundred words with the universe in a silent way;

oh! How beautiful it is to forget the gnawing pain lost in world of numbness,
where the pace of life is softened with enticing chock-full nothingness!

God given wings!

Lost was I felt when life knocked me down
but wrong was I since it was that moment when I was found;
what haunts me are the heights
and not the thought of falling
darkness does not repel me
it's the fear of the lights;
I raise my lifeless arms towards the wide blue sky
earnestly requesting the birds looking down at me to teach me how to fly;
I resist being played as moppet of life with strings
Here I go flying high light as a feather with my god given wings!

Black hole

Like an attractive black hole,
the stars..the whole galaxy is attracting my soul...
but can anyone stop the ever changing sky,
and so the world in me started diminishing in size..
I could feel my soul go so cold,
such that I tried but could no more hold..
As I wept under the penumbra of the dark blue sky,
I could hear the stars calling out my name in the cold breezy night..
I began to breathe and said I would not say goodbye
Since I fell in love for the first time with my life!

PNES SEIZURES

Fighting an Undiagnosed Seizure Disorder

When we were small we were taught to look both ways before crossing the street. As we grew up we find ourselves face-to-face (metaphorically, of course) with oncoming obstacles almost constantly.

Simply speaking a pedestrian is a person walking on a road or a developed area. But I guess there is something very 'pedestrian' about being a pedestrian... watching the world pass by in fast cars while you slog on an uphill battle... moving ever so slowly towards your destination. And that’s exactly what I’m feeling like now...NOW is a few minutes after I had a violent unexplained seizure...which has left my body feeling like a distorted bean bag!

When you have a seizure disorder, especially one that remains uncontrolled and undiagnosed, I believe you’re a true pedestrian. Your life can become a boring script, punctuated by moments of complete loss of memory, overwhelming fear and desperation.

This is what life is like for me. This is what I wish the neurologists who treat me like a number... acknowledged.
This is what I wish the junior doctors understood when they took my messages for my doctor... that weren’t returned because my case was 'not that serious' enough.
This is what the people who think that my seizures are "all in my head" and I could and have the 'power' to control it as per my whims and fancy, could understand, because no reasonable breathing intellectual being would ever fake or even wish to be in such a complete painful humiliation.
When you have a seizure disorder, you could have a seizure anywhere and anytime, so life now for me is like crossing a road, looking both ways and knowing I might still get hit by a car. Your seizures can cause minor harm (like bruises, cuts and body pain) but the environment in which you have the seizure can intensify the injury (mental especially) tenfold.

Recently, I was completely and utterly humiliated after hitting my forehead on the bathroom railing while trying desperately to keep my seizure private once I felt it sneaking up on me. Choosing a concrete bathroom was a very poor choice, but I tried to keep prove that I can conceal the ugly face of my seizure disorder, compromising my personal safety to protect my egoistic reputation.
Today I realise, with my mouth dripping blood due to my biten tongue, my entire body shaking and my head vibrating so violently, there was no way to hide the truth written all over my face.

Yesterday I came across a meme that said the slogan of epilepsy is “carpe diem.” As usual I had to google to find how was that latin aphorism connected to seizures. But by the end of the day I could sense the precise intention- "SIEZE THE DAY"
I don’t know about tomorrow, or the day after that. I hope to eventually have a seizure-free life. But I don’t know about any of that.

What I do know is I have the choice to either fight back or to feel sorry for myself. I can admit I still am not the strongest or the bravest.
But I also know I wear an invisible bomb strapped to my head, and there’s some shadow holding the controller, whom I would.. (hope you are hearing u evil demon!)..definitely get hold of one day. . for sure.
The bright side however is..I have realised every day is a chance to get better and have the seizure-free life. So I will do what my ever-so wise and compassionate hysband advised: I will be my own advocate, allow my confused self to rest, scribble my mind out and refuse to give up, until I have the promise of progress.

Because every life is a story, and every story is worth telling until the very end — and I am not done yet.

Lessons!

Like the sunshine oozing out in the bright blue sky,
the tear drops squeeze out through my eyes!
I know I have to go through pain like this,
To enjoy warmth, peace and bliss!
This pain I know will not last forever,
And as time passes my scars would fade for better!
Unpredictable is my life which changes like seasons,
That what is happening now is for better reasons!
I know you see me as selfish as my pain is all I see,
But can't you see my need for your love unconditionally!
The only reason I am sad is because I was happy before,
But now I don't see the world as an ugly place because I have stopped viewing it only from my door!
I know I have to learn lessons the hard way,
Since even flowers bloom after facing the harsh rain and ray!

Myasthenia gravis facts

Myasthenia gravis facts

Stronger

Friedrich Neitche said, “That which does not kill us, makes us stronger.”

A PIECE OF MY MIND: Being a myasthenic...what it is like?

A PIECE OF MY MIND: Being a myasthenic...what it is like?: Today I would like to share what it is like to live in our shoes...live as a myasthenic.. after taking all due medications and receiving th...

Lost!

No matter how hard I try the reminiscences of the person I was...appears everywhere I look and every where I go. It seems never ending. 

I see myself each time I see someone walking down the road, like I used to walk. Every time I see someone dancing the way I used to dance. I can see myself everytime I see someone friskily walking by like a "butterfly"… thats what I was called by my office staff coz of fast gait and colorful attires. The reminders are literally everywhere. 

You see, the other me didn’t just disappear… She is still inside me...not LOST..as yet! Sometimes I have wished that my ailments take away all my memories with it. All the memories of the person I was and I only have NOW left. 

I can be reading or rather may be looking through a book and I can be instantly drifted back to a time when I was that person who went to places, representing legal matters in Courts, attending meetings, providing legal opinions or doing just the contrary.. something very silly and very funny. And when these thoughts come back I feel both - intimately warm and sadly cold at the same time. 

I miss that girl. She was funny. She was silly. She was headstrong. She was a dreamer and she could do a lot of things that I can no longer do. Even things as simple as brushing her teeth and washing face without proper support. 

She isn’t really LOST... I know that because I still see bits of her in the mirror, in some of my dreams, in the memories of my ever loving and supportive family… and I am sure when I least expect it she will appear back.

Sometimes I sit and reminisce with her but then our time is up and I must return back to my reality. 

My birthday just passed by and so I am a lil older now and possibly a bit wiser now😇! But definitely a lot more humble now…(kudos to my crutches and wheelchair)... but I will always miss that old Deepthi. 

Sometimes, I can almost feel like she is here, bursting to come out again, but then I am again rudely reminded that she isn’t really here and she isn’t really gone, as I try desperately to fumble my way to the washroom or try to stand up on my own. 

But each day I try and make a new girl with the old one and the new one. Make a new person. Create a new life and make a new history … and I do that as best as I can. EVERYDAY!!!

I can’t stop doing this every day, and always to the best of my ability…but… there is a big part of me that misses that old Deepthi … The lost girl…. And probably always will. Perhaps I am lucky that she was someone I consider worth remembering and not someone I wish was gone and wud be back soon... atleast partially.

Journey

The journey between who you once were, and who you are now becoming, 
is where the dance of life really takes place."

~Barbara De Angelis

Going with the flow

So much of my life is uncertain right now, so much is changing. I have no idea where I’ll be in a month. Life is getting me real comfortable with not knowing, of trusting that everything will work out.

Today the quote, “the only thing constant in the world is change” keep popping up in my mind as plans changed and I adjusted according to shifting priorities. The ground may be moving underneathe my feet, but I don’t have to fall over. I have plenty to keep me stable, all of it emanating from Truths.

Truth: I have awesome, supportive friends. Truth: I am adequately prepared for the job I seek, anything else I can learn on the job. Truth: Life is amazing and always seeking to share its beauty with me. Truth: Just when you least expect it, all the pieces of the puzzle seem to naturally float together, and you wonder why you ever worried. Truth: I am the master of my destiny, I am the creator of my world, I am the captain of my ship, and I can choose whatever route to take… and I choose happiness. Always, I choose happiness. I don’t have to wait for anything to be happy. I can choose right now, right here – who am I? Who do I choose to be? Do I choose to doubt myself? Do I choose to let the waters of life toss me around? Or do I choose to focus on these great Truths? Do I choose to stay focused on my inner strength and my truest heart-desires?

The only thing constant in the world is change… and my ability to choose to be whoever I want to be. I choose hope. I choose divine power. I choose love. I choose peace. I choose…. I choose… I choose me.

Now u see the world...now u see not!

There is no value in life except what you choose to place upon it...

Would you give up your eyesight for a million dollars? How about a billion?

Perhaps, considering the above question and answering it honestly helps to put the value of things in their proper perspective.
We constantly preoccupy ourselves with thoughts of things we don't have and experiences we are missing out on. Realising this I am learning to be appreciative and grateful for everything we have and everything I am going to receive. If we all stopped for a moment and looked around us, we would find endless things we have that others are not as fortunate to have.

One of the main flare of myasthenia gravis that I constantly battle with,  is the intermittent drooping of both my eyes to such an extent that I get to see the world around me wth just HALF AN EYE! Today is one of those days!

The things you take for granted are the things others are praying for and there are some things that no amount of money can buy...is it not?

Think about it!

DEPTH of life

 

Enduring sufferings, facing challenges, infringements and heartaches- all of these have grown me, and continue to grow me by giving me DEPTH....instead of a bland and shallow existence. My wounds have made me beautiful, and my wounds have raised me to a higher plane. They have given me Depth to understand the meaning of life which gives no significance to money, education or the attainment of power.

All of the struggles that I am going thru influenced my perception of life. Meaning of life...that's what i am pondering upon today. Paul Tillich, a German American Philosopher explained “The Depth of Existence,” as “truth is deep and not shallow; suffering is depth and not height” . So money, education, and power are just  superficial subjects and are just shallow.

No...I don't mean to say that they are insignificant to give meaning to life, but just that I believe their contribution is very miniscule...since they are finite in nature. Yes no doubt...we do have to struggle to achieve them but that struggle is not infinite enough to connect with the meaning of our lives.
The experiences that I have had in the last six months as compared to my life just before my diagnosis..before the wheelchair became my camaraderie, has actuated me to analyze the meaning of my life.
I dont know how but making an impact on someone’s life one day...making a difference in someone’s life...would give meaning to my life.
Apart from my family there are many people who helped me in my struggles. So my life would have a meaning if I am able to make an impact on someone’s life just like how they made an impact on mine.
Though I am cogitating about the meaning of my life... it no way means I am going to take my life too seriously..coz I know that would no way depict it meaningless.
As the old saying goes, “life happens while you’re making other plans.”

I feel that if I am able to bring a positive influence in someone’s life in some way, whether it is through my work, or passingbon some words...or just by listening..it would increase depth of my life.

My day-to-day life need not be a shallow one and so I look forward to purposefully engage myself in all the moments of my life with attention and intention. None of us really knows how long we will live, but we do know this day comes but once. As I engage in depth into my daily interactions and activities...bringing in a sense of wonder and attention... I remind myself that these moments will never come come back again and hence they give immense depth to the meaning of my life!

The depth of my being only expands as I free myself from the happenings of society, allowing my self to simply be. To feel, unexpectedly and unapologetically, just as the tides rise and fall, knowing these emotions will pass too as all things do.
Depth..it increases as we explore more.. so will my thirst for working towards increasing the value of my life which I am sure will help me discover more attributes to add meaning to my life. But I know I will never be content reaching it.
I like my depth, and I like it in others as well. I am grateful for all the difficulty I have been through in my life. It has given me roots and branches and has kept me deep rooted...in depth!

Yellow butterfly

Today morning the kaamwali bai had kept the door open..a taboo in our house due to the menace of monkeys. So while my family and the bai were involved in a word-war, an uninvited guest sneaked into the house..visible only to my eyes..as the others were lost in discussing the intents of the yet to come monkeys...A BUTTERFLY!

The yellow butterfly though tiny had an amazing attractive aura! The way it entered into the house oozing through the humans..that too ones loaded with anger...made me applaud the butterfly's strong determination and grit. These qualities are often the necessity of dreaming and fulfilling dreams...is it not?

Since I was on my wheelchair without any movement apart from my breathing...the butterfly gave me the privilege of becoming it's resting space for a while.  That very moment I tried to cup it in my hands but it was swift enuf to fly away. Its swiftness made me realise failure often strikes hard...but we need a strong mindset to regain ourselves to overpower its effects.
I realised I was looking forward to learn from one this small creature – the butterfly..the yellow butterfly which now has fallen in love with my joy and the sparkle in my eyes on seeing it and hence sat on my pinky finger rubbing it's hands. With gleaming eyes I starred into its face and realised it was the most fragile mortal existing, yet I was at its mercy to give me some more time in its company!

Before its entry into my life today morning, I was mindfully browsing through my struggles...but the butterfly bashfully made me think of its long journey of struggles starting from a cocoon till turning out into beautiful life filling the world with colours. Learning from each of its fall on the face of the ground, it rises and tries to shine bright.

Today my beautiful unexpected uninvited visitor, before disappearing into the macrocosm, taught me a lesson that I will never forget - “that the power to rise above any situation or struggle is very much within me and that I alone have the power to transform into the Brightest, Strongest version of myself EVER!”.

Good day!💓

Being a myasthenic...what it is like?

Today I would like to share what it is like to live in our shoes...live as a myasthenic.. after taking all due medications and receiving the required treatments to stay away from a Myasthenic crisis!

*You have a lot of trouble or need assistance in getting up from a kneeling, squatting, or being seated.
*You (or your arms) get unbelievably tired from just washing and/or drying your hair or touching your face.
*You have trouble lifting your foot up to step onto a step, or even ANY bump or rise, even in the floor.
*You find that you no longer have good balance and wobble all over the place like a air filled toy.
*Even though you are no longer a child, you wake up with drool all over your pillow.
*You want to put a note on your front door saying "My house is a mess because I don't have the energy to clean or pick stuff up".
*You get tired just standing at the wash basin while brushing your teeth, while standing before the puja stand during sandhya deepam, talking to family, etc.
*Holding your arms up to read a book or the newspaper feels like you are trying to lift 100 kg weights.
*You get worn out from the repeated sitting and standing you when you have to take a bath or when you are changing your bedsheets.
*You have trouble rising to a standing position from a regular height chair.
*Your cheeks/jaws get quickly worn out from talking OR chewing.
*You have trouble raising your head from the reclining position when you are simply lying down in bed.
*Even though you are NOT drugged or not have a big LADDU stuffed in your mouth you stagger stammer and speak as if u are an Oprah singer. You slur your words and put in so much efforts to speak that after a couple of minutes of talking, that the other person halts u saying.."ok ok enuf i understood" though you might not have even reached the point you wanted to convey.

*You choke on your own saliva.
Food gets caught in your windpipe and you have to cough vigorously to get it out.

*Washing your face, showing agarbathi to god, holding the AC remote for changing the temperature and other tasks that involve raising your arms in front of you are things that you find impossible, extremely difficult, or totally exhausting.

*Laughing hard gets you so totally out of breath that you must rest to recover.

*You trip over the tiniest things, even the DOORMAT because your feet don't go where you "tell" them to.

*You get out of breath and faint when having a "good" cry.

*You run out of breath before you finish saying a sentence.

*You have trouble getting a firm grip and end up dropping or spilling things.

*You find that writing notes to people is easier (takes less energy) than TALKING.

*Sunlight and bright lights bother you and sometimes increase your other symptoms.

*Singing has become difficult or impossible.

*You find yourself constantly clearing your throat.

*you notice your heart beating rapidly after the slightest effort.

*you find yourself sweating profusely without any apparent cause.
*Water or other liquids (in my case even dahi) come out of your NOSE when you drink.
*Any fitting clothing would make you feel like you are choking.
*Any kind of temperature extremes makes you worse – hot/cold food, hot/cold drinks, hot/cold rooms, hot/cold weather, hot/cold showers/baths, etc
*After reading a page or two in a book or something on the phone, everything becomes blurry and then You see double!  You try to adjust your eyes, one at a time (double vision), and someone nearby may even think that you are WINKING at them!!!!

*Walking up stairs is next to impossible.

*Your mouth or throat will not even let you YAWN when you are tired.
*A change in weather leaves you weak and short of breath.
*You sit down to eat and cannot manage to bite through your food to chew it.
*your neck wobbles around so much that you either use a neck brace or rest your head at the easiest spot available.
*there are times when you have to use your hand on your chin to keep your mouth closed.
*you have totally unexplained dizziness.
*you feel like your teeth have shifted -- changing the way that you chew and making you sometimes BITE THE INSIDE OF YOUR MOUTH.
*you need your food in a bowl placed on a big plate because the food is going to fall out of your mouth anyway.
*Putting on socks or pajamas which require tying knots is a "Kodak" moment and leaves you sweating, frustrated, and totally wiped-out.
*Fatigue so overwhelms you that even raising a spoon of food to your mouth or even turning sides while sleeping requires SEVERAL rest breaks.

So what do u say now?😁

WISHLESSNESS

Last week I came across an article describe several techniques for helping with pain and other physical discomfort. One practice suggested was using imagination to transport yourself to a pleasant place.

I mean SERIOUSLY??? Can such an imagination relaxe your body and ease uncomfortable symptoms.

Well no harm in trying right?
So as per the technique, I use my own special or favourite place as my spot of imagination. That with no doubt is Kasauli. The first hill station I ever visited in my life, where for the very first time I saw clouds meet the earth,  various shades of colors in the sky, a twin rainbow..wooooowwww.
Though I had been there with my family I’d spend hours there alone in the silence among the mountains during the early mornings and late nights, for three days, the best ever moments of my life. I was happy and content just to be there and feel the peace in that world so different from here that was full of chaos.

Because I’ve been chronically ill since May, I’ve not been to Kasauli inspite of wishing every moment to go back and get soaked in that peaceful atmosphere.

So now thats my “go to” place when I want to use imagery to mentally transport myself to a pleasant environment, as per the aforesaid technique.

A few days back, I was lying on my bed in considerable physical discomfort, due to a severe seizure which lead to a total paralysis of both my arms, right leg and neck which I kept falling and i jus couldn't hold it up nor sit up.
So I thought of trying the aforesaid technique. I brought Kasauli to mind. I pictured myself sitting on the hill top balcony with my legs dangling through the railings feeling the chilled air under my feet; I imagined myself lying on my back watching the calm serene blue sky, watching vehicle moving around the mountains like toy cars.
Overall a peaceful feeling of well-being arose.

I’ve recalled those moments in Kasauli a hundreds of times since i been back from there but for some reason, this time, something different happened. I suddenly realized that it didn’t matter where I was physically for me to experience the type of pleasantness I associate with Kasauli.

I was feeling it right at that very moment—lying on my bed!

And this is not just any bed; it’s the bed I often think of as my sick bed. Despite this, I felt a joy that was suffused with a feeling of peace and contentment. I found myself thinking: “Being on the bed is okay with me.” Then to my surprise, I said to myself, “and there’s no place I’d rather be.”

Whoa! No place I’d rather be than on this bed? Then what about Kasauli? What about the beautiful mountains of Himachal that are only a couple of hours from where I live, where I have always craved to go?

At that moment, they didn’t matter. It’s important to note that I knew I was on my bed and not at Kasauli. In fact, that’s what made it such a powerful experience: I was content to be where I was, as I was, meaning that it was okay that I was on my bed and it was okay that I was chronically ill and with such minimum mobility only to make it to the washroom!

The only way I can describe this experience is to say it was a moment of WISHLESSNESS!!!

My humble understanding from this experience is that what matters to my well-being is my state of mind not the conditions around me, including where I am physically.

U might be thinking is it not an obvious lesson? But it’s not easy to feel this way all the time, atleast for me since I feel low most of the time of the day.

I’ve spent hours on this bed (from which I’m scribbling this and such others) wanting to be anywhere but on this bed. This is why what I felt was life-changing...for me.

Books as well as the wiser loved ones in my life have taught time and again that things intellectually, such as “Happiness and contentment aren’t dependent on where I am physically.”
But it’s only when an experience breathes life into an idea that it’s internalized. Then profound change is possible. Such was the experience I had on my bed that day.

Do I always experience the peaceful contentment of “no place I’d rather be” when I’m on my bed now? NO.

But I feel as if I’m on my way toward being able to get back to that place of WISHLESSNESS.

Sometimes all it takes is for me to recall the experience I had that day. Other times it takes a bit more: I have to consciously do the imagery practice—not forcing that “mental switch” to come, but allowing it to arise naturally as I imagine myself at Kasauli n then realize that the sense of well-being and contentment I’m feeling is actually taking place on my bed.

I’m deeply grateful for this experience. I hope it wasn't boring for you to read about this beautiful experience of mine - Wishlessness 😊.

The child in me is still ALIVE!!!

As we grow older, certain behaviors naturally abate such as thumb-sucking
and bed-wetting but at the same time positive traits such limitless imagination and spontaneity also diminish.
Remember how a couple of blankets and pillows could transform the living room sofa into a magical fort? Or how
a humble bathroom towel could turn us into a superhero?

As time passes time we narrow down our vision..close our minds and stop being attracted to and exploring anything new and
exciting around us.
I, for awhile, have been involved in doing all childish stuff for my boys..such as making car garage, racing tracks for theirs cars, teddies and dolls out of old blankets and socks...jus to bring out the joy in the them! I jus luv to see the sparkle in their eyes...which now for my otherwise mundane life are like the beautiful stars in the dark sky!

So this time for Children’s Day I put in all my efforts to make a canopy bed out of my old sarees and got a small dim light fixed in between as a surprise for my little champs! And as expected they were exhilarated beyond wrds to have a tent house on their bed. They jumped like lil monkeys howling and buoyant with joy and finally slept under the cozy penumbra of their mother-made canopy.
This piece was a childish project and honestly as I was putting all my efforts to make this canopy and pestering my husband to help me wth the fixing and tying  it did make me look quite ridiculous. Yet no one in my family laughed at me as I could see they themselves wanted to experience and feel the coziness under the tent/canopy, which we all loved and had done long long ago when we were children. So when I too got indulged with my kids in such meaningless innocent fun it rejuvenated me totally.

If you think about it, as we move ahead the phase of childhood we soon get lost in a maze of time management, new goals to be achieved, be an active participant of the rat race, etc.,which keeps snowballing with the passage of time... all for reaching the proverbial golden pot at the end of the rainbow.
Soon this pressure rises many-fold with marriage, family relations, social commitments, babysitting., etc.
Finally there is simply no time left for ourselves and we gradually forget to laugh and enjoy the little pleasures in our life as we rush from one obligation or task to another.
We even rarely laugh...not smile I mean laugh out loud..as we used to as a child!

Michael Pritchard has rightly said-
“You don’t stop laughing because you grow old. You grow old because you stop laughing”!

So I have promised myself to untangle myself from the mental ruts and take cues
from my children to jolt me out of complacency and view the world from an entirely new n fresh approach even if it is for few moments at a time. 
I have promised myself to take a step back and learn to view not jus problems but even people and various aspects of my life from a completely different point of view and regain the childishness in me that I have lost with age! I shall embrace my ignorance and not be embarrassed or blanched of the same.
I have promised myself to be oblivious of what other people think of me so that I can be free spirited to say what I mean and mean what I say.
I have promised myself to imbibe myself with the doggedness that a child possess so that I never give up on anything till I reach my goals!
I have promised myself to be open minded as my kids to help me new learn things and and to drop all my opinions of all
of those things and getting back to the
idea of trying to see things not as I see
them, but instead as they really are.

Believe and let go
Be curious and experience everything
Be receptive
Be humble and keep my ego in check
Be consistent and clear to build trust!

I shall fill my days with new experiences
new people, new discoveries and simply...simply be bouncy and effervescent   with childlike joy all day...every day!

Enjoy and keep the child in you alive!

Tears!

Tears rolling down my cheeks! Another flare came out of nowhere today...my legs have gone lifeless like water balloons..this accompanied by a partial seizure and black out!
I do not know how long will I take to get life back into my legs again and how long will I remain exhausted and in pain due to the seizure.
But I was definitely not expecting this... I have been following the doctor's advice n all and didn’t think I was doing or exerting myself more than normal. I thought I am compensating all my activities with rest... I thought…I could handle it. It turns out I was wrong!

So, here I am lying on the couch again... worried... upset... because myasthenia gravis sucks big time!!! I hate seizures too...they are not less upsetting.

Yes..there have been times when I have had  good healthy less painful and energetic days and weeks in the last six months..because of which I would begin to hope.. I will get better. Maybe, this won’t be for the rest of my life. Maybe I will be able to do those things I want to do…in the future.

But every time I get a flare like this, I realize I am probably still holding on to an dream..which may or may not come true.

I know most likely, these ups and downs will persist for the rest of my life and a part of me that has accepted the chronic nature of my condition.
But there is still a part of me that holds on to hope. I think it has a lot to do with my family and all the lovely people in my life, who keep telling me I could potentially get better. They keep repeating that my condition would not have to last forever.

But, what I am experiencing is different... I make progress and then I collapse. The pain and disability levels go down and then I sit or stand a little too long or walk a little too far...then a huge boulder crashes down on top of me bringing me to the ground with it....exactly when its least expected..why? No idea!

It feels upsetting as have to go through it all over again..all the stages! Strange but true..I have to reach for the acceptance over and over again. But I again I will not give up and fight back like a warrior till I overcome this condition of mine! I know I can!

Strength in my weaknesses

Sometimes I feel so fragile and weak – not just physically, but mentally, emotionally and spiritually... and so at times I am saddened by my humanity.
In a gush of emotions I said some things yesterday to my family...who has been ever so loving and doting... that I probably shouldn’t have. It’s not that they were bad or untrue but just poorly timed...spoken out of frustration...(awful part) with tears rolling down my cheeks. The words were the outpouring of the perfect storm that had built up inside me yesterday...due to my ill health..pain after seizures...stretching myself to do something productive than lying on the bed all day..and maybe probably a bit of lady hormones thrown in there. I wondered “Why couldn’t I just keep myself together without these intermittent outbursts in my loved ones?!”

This I guess was my weakness and it was disappointing me.

The truth is there is a lot of pressure in this go go go world to be strong...strong physically, strong in ability, strong in character...strong in every way! We should be able to be everything to all people and do everything everyone else can but quicker and without any complaints!
But this...is jus not possible... is not true either.

I guess it's time I learn this lesson!
"Slow down Deepthi, you don’t have to do it all. I will still love you"...I could God whispering in my ears!

Sometimes my insufficiencies frustrate me!

Thats when Ram, my younger one, after his day at playschool, came running to me and hugged me...yelling out "Main pura kha liya! (Referring to his tiffin box) with great triumph and expecting me to kiss him lovingly and say "Good boy!".
I noticed... my child doesn’t worry about how fast he should be going....he doesn’t worry about being the strongest or the best. He is just Ram and he is perfect.
I got my answer to the tumult inside me... perfection is not defined by the world but by me.

In this period of my life..I am actually on the cusp...the most difficult time I will ever know, none have been like this past years. Not jus for me, but for my husband, kids and family too. My ever smiling and caring husband, really hasn’t had any time to take care of himself or his needs. Instead, he has been bombarded with his own Office deadlines, demands from our kids to play and listen to their never ending stories...for his time and attention, and a wife who...I better not word any thing more.
Feeling weak inside a sudden fear gripped me. Again I could hear the divine whispers  "Deepthi, my grace is sufficient for you, for my power is made perfect in weakness."

I realise.. it is okay. True, I am not able to do what I had planned to get done...even for the day.
But it is okay.... it is only when I slow down and accept my weakness that I can actually see things more clearly...and positively. Sometimes, it takes an infirmity, or uncontrollable, undesirable circumstances in our life to know what is truly important in life...is it not?
And so I am happily waiting for my darkest nights to end with the best sunrises.

Twinkle twinkle little stars!

Observing the world of nature has never failed to amaze me through its innumerable hidden lessons. Lessons that teach me a lot of significant things about myself, my world...provided I pay close attention to it and is open to its messages.

Today when I peeped out to see the early morning sky...I noted that the sun enjoying the arrival of winters had no mood to come out yet...it was 5.30 am...and it was still pitch dark. The stars therefore were enjoying the extra time granted to them...twinkling! They greeted me when they noted me watching them with mouth open in awe...as I hadn't expcted to see them!
Not one or two I was fortunate to see  magnificent huge bodies of twinking mass pouring their light to the universe!

I suddenly felt light and realised that my problems are not so important. Just looking at the twinkling stars, I could see how vast our universe is, and how tiny a part of life mine was.
Yet I am so attached to my own small egos and worried about so many silly, superficial matters... that I get obsessed with them and feel that unless I deal with them the world is going to fall apart!
Now looking at the wider picture of life I have to come to realize that my problems are not so important to exist at all... m sure this change of perception will allow me to be more care-free, relaxed and happy.

The shining stars all of which were shining with same intensity...no less no more!
This made me realise that every individual is unique with a special beauty, even though it might not be instantly apparent to my simple eyes.
During the day time, these same stars appear not to be shining, but if you go deep down in a well where no light can enter, you will be able to observe the stars shining in all their beauty (no I have never had a chance to observe this myself...neither do i wish so..I read it somewhere and I prefer to believe it than experience it😆) .
In the same way, there is goodness in all..in some way or the other...I jus need to develop the right mindset in order to be able to see and appreciate the beauty residing in them.

Aahh! What a feeling..my heart was free! My soul was floating in the sky with those twinkling stars who had jus a few more minutes before Uncle Sun engulfs them in his bosom!

Shedding layers of belief!

We can’t solve problems by using the same kind of thinking we used when we created them.”

~ Albert Einstein

As much as I love writing, as therapeutic as it feels, I sometimes run away from it. Reading the quote above  I finally realized today that I have to apply the same thinking, in order to transform my life..in many areas.

The last few weeks I have focused more on healing myself and along the way I became my own best friend.  I stumbled my way through the first few days judging myself way too much.  
I dropped much judgment and began to alter my self-view from “broken” to “healing” to ‘naturally powerful”.  I soon realized the relationship I now deeply desired to have was a soulful connection with myself.

I experienced my first rebirth when I finally, finally listened to my intuition and heart’s calling above my fear and decided to move on in my new life with disabilities.

It was one of the hardest decisions I had ever made.  I was still in love with my old life.  Before me lay a land of nothing but change, which was appears very so scary.  
I didn’t know who I was becoming.

But my gut wouldn’t let it go, and I took the biggest leap of faith ever.  And since then life has been soaring.  Though I was experiencing deep pain inside me to let go off many things, it was coupled with the relief of knowing that I was doing the right thing. Now I am in the process of healing myself and figuring out what I really want.

Since I had become my own best friend,  I learned how to say “no”.  I learned how to let myself experiment with relating with everything that life offers each moment.  I learned how to envision and feel what I really wanted.

I am becoming hopeful.  Now as allow my brain to be filled with real stories of how people have overcome hurdles and lived the life they wanted, my hope is turning into knowing. I knew how happy I would feel… because I was already feeling those things....by shedding beliefs about my self-worth, about what the world could provide, about how my life could and should look like.. I found it.

This is unlike anything I have ever experienced.

Somewhere during all this, I began to question where I wanted to go next in life and why. The “why’ is extremely important for me because I wanted to ensure fear was not the driving force behind the route I wanted to take next in life.  But the truth - It was. Or rather, it was my limiting beliefs.  I had to expand what I thought was possible and what I felt I could have.

Possibility proceeds reality...is it not?

I applied this framework and it in turn is helping me to transform my uncomfortable relationships and pangs of fear of imperfection.  
I believe due to my efforts in the last few weeks I no longer mirror the Deepthi that had returned home after my plasma exchange at AIIMS.  
I have shed many, many layers of limiting and weighty beliefs.  I am feeling lighter, happier, and much, much more powerful and sure of myself.  My life now does have  have a purpose.  
And each day, I wake up so happy to face my life... to befriend it..to conquer it with confidence and optimism.

This mental shift feels more like a situation of deep instability solidified into pure gold.

It’s AWESOME.

All of it, all of it catalyzed by love and a shedding of skins. I aim to free myself of “should’s”.  When I said I plan on living an amazing life… I meant it.  This is how.

I have become my own best friend.  And the world?  It’s holding my hands, too.

THE POWER OF MY FAMILY

"We cannot live only for ourselves. A thousand fibers connect us to our fellow man." 

~ Herman Melville

The quote above makes me realise that if I stand and survive alone as an individual, I can achieve in a limited manner and but with the power of family and friends my achievements are unlimited. I am so much more collectively than I can ever be, alone.

Before I retire for the day I thank god and celebrate my awsome and understanding family, close and extended and my handful of loving friends because their power broadens my perspective and enlarges my life!
Love u all for being here with me ...in my heart always!

Optimism and positivism

Those who can laugh without cause have either found the true meaning of happiness or have gone stark raving mad.” ~Norm Papernick

Yesterday, as usual moving around in my wheelchair I tried standing up holding the door handle, (how foolish of me), which had no business of being stable and supporting me and so there I went flying alongwith the  door, hanging on its handle. Obviously it hurt at many places but honestly I couldn’t help but smile.  As a matter of fact, I was laughing out aloud on my foolish choice of support.

But it was indeed fun taking a fun ride with the door.  I suddenly felt a tremendous surge of love, gratitude, and happiness, coz I was able to laugh even when I fell and I hurt myself...I was feeling proud of myself and I wanted to express it!  Why hold in the love, right?! So I spread it, smiling at the world around me, giving thanks for all the blessings in my world!  The sky, the trees, my family, my friends, my past, present, and future.  All of it.

I’m still riding off of the euphoria I was feeling.😂

How did I get here? Well, *clearing my throat* I’m going to shock you all that only knows the Deepthi of now: I used to be a staunch pessimist. Amazing how life can turn out.

I started shifting towards optimism during my last few months, without much conscious effort.  I just naturally started believing more and more in myself, feeling empowered by the wonderful people around me (not jus those physically but also those who are with me through their thoughts and let it known to me through this phone).

The experiences of pain, exhaustion, humiliation, frustration, helplessness,etc that I had to go though in the last few months and am still undergoing (thanks to myasthenia gravis, acute urticaria, bronchial asthma, migraines and PNES seizures...poooff.. thats about it!!!😂), forced me to confront, head on, my thought patterns and their effect on my world.

I was feeling miserable...I mean all the time.  All I could think about was how I was never going to get back my old active, smart, confident self again.  My family tried to console me and convince me otherwise, but there was no point.  No one could change my mind.

As days passed I reflected back on this entire experience of miserablity..thats when I got smacked up in the head to wake up.  It was eerie.  I literally felt as if I was seeing the world from a different set of eyes.  My conception of the world – my world – had changed, and now even my physical perception of it seemed altered.

Some of the questions that forced this change was…why had I been so miserable?  Why hadn’t I allowed myself to savor the experience of being cared for and loved by all?  Why had I been so…pessimistic, automatically accepting that life would not go how I wanted?

Wow, I remember how debilitating and exhilarating that feeling was at the same time. To stand before my new set of eyes, with my mind and EGO laid bare, asking and answering tough questions about the very core of who I thought I was.

I explored and questioning my once-solid thought patterns, questioning why I believed them and how they related to who I thought I was. I continued and am still in the process... even today asking myself over and over, “what thought patterns are limiting me?”

It’s having a dramatic effect on my life.

When your thoughts revolve around how big a problem is, on why you are not good enough, on why life will not go your way…you lose a lot of confidence and become overwhelmed, stressed, irritable, angry, depressed, etc...like me. With this state of mind, you only perform at a fraction of your true capacity. Trust me..only a fraction.

Then I tried to keep a calm mind, focus on the good in my life, and continue to be positive about a...any situation…and oh boy, let me tell you.  My ability to effectively handle any situation skyrocketed! I still can recollect my Etan's shell shocked (lemme also add pride filled) eyes when I was handling things...even pain after a fall or seizure...in a calm manner with a smile.  

You BELIEVE you can handle it and turn it into a workable situation, so it clears your mind and allows you to give it your all. You suddenly see solutions where your stressed /unconfident mind simply could not.

So now nothing stands in my way because I no longer do.  Everything else becomes manageable.  And I don’t make excuses for why something can’t happen – I keep trying to figure out how it can. Like I have invented various ideas to climb the stairs to reach the second floor..with ofcourse my life less legs!

And then something spectacular happens…

I realize how smart and talented I really am☺(even with my slurred speech and short term memory loss). How beautiful I really am, (even with my steroid induced moonface and arms and shoulders that cud give He-man a scare).  How capable I really am even while on my wheel chair.  How truly amazing I really am (because I AMMMMMM!!!!).( Come on enuf of ur laughing😈)

It changes everything.

I become me without all the junk that had been holding me down. Well, this is me without all the junk holding me down. This moment.  Now.

Go out and kick butt, walking confidently and thinking positively!!  Your mind dictates your world – take charge and have a wonderful day!

PS: Can u try and be aware of “what thoughts are limiting me?”  SHINE YOUR LIGHT!!!  And remember to always, always be patient and loving with yourself...I was never..but now I am.  I was initially overwhelmed by how many thoughts were limiting me.  It takes time to identify them and deal with them..atleast it does for me.  Do it with love – knowing that you are simply clearing the way for your best self to shine through.There’s not anything “wrong” with you!  You’re amazing!  Don’t forget it!  Now I know it, live it, and let myself shine!!!
Why not?😆

A new way listening!

It was a spectacular day yesterday..and I was thrilled to be able to sit in my balcony... after over weeks ...with the windows wide open to see, feel and witness the nature outside. I was feeling enchanted by all the different birdsongs I heard around me - the rasping of the crows, fussing of the mynas and parrots, sweet chirping of sparrows and lonely cries of the eagles high above in the sky. 
As I tuned in to each sound of the birds, I realized that each type of bird's unique song was resonating with different parts of my body...funny...but seriously thats what I felt!  I could feel a sensation in my belly when the crows were busy conversing with the world. The sparrows directly were touching my heart...and the Eagles searching for their prey high up among the clouds were calling out to my dreams stirring in my dream chakras. 

I confess I have never consciously listened to the birds in this way before, inspite of having this opportunity many times before. Believe me I felt much more "whole" and "complete" since I wasnt listening only with my ears. 
By listening this way, I was experiencing the innate web of life intelligence of listening with my whole body and hence I was being much more present with my surroundings. 

While experiencing this enchanting feel I could instantly connect myself to the quote from Chang-Tzu ( a Taoist philosopher)...
  .."That which fills the universe I regard as my body and that which directs the universe I see as my own nature."

My half an hour of listening to the nature surrendering completely to it, has taught me that at any given moment, my experience of nature is as unlimited as my imagination.
I am so glad to realise that my every attraction to the nature is communicating directly to a part of me to wake it up, bring it into greater consciousness.

I am astounded by the new layers and levels of awareness and connection that can come from engaging in such activities.
And I am fortunate that each time I find a new layer, I find a new way of engaging with the spaces I find myself in...my ability of relating and understanding  expands, which in turn absolutely feeds my spirit! 
By tapping into the intelligence of my web of life connections, I am becoming more whole, more complete. 
I have placed this new way of listening to the world into the part of me...I trust most.

I dont have an answer if u ask me how this nature-connecting activity has helped my life in disorder. But it has helped me to convert my loneliness to solitude which I now enjoy the most!

Mud puddles!

Today morning as I watching Baby Tv with my younger one I saw a programne where they were showing kids playing in mud puddles.
MUD PUDDLES! My thoughts started drifting to my childhood when I too have played in mud puddles wearing those long rayon gumboots...stirring the mud and water..which soon settles down... splashing and getting stained with the settled mud begins again..being all icky and yucky!
Most of us are past the age of playing in the mud. But the truth is, we’re still stuck in the mud puddles of life right now. If u have noticed our lives get stirred up just like the mud puddle, and dirt and silt of fear disappointment, busyness, bitterness and unforgiveness, empty relationships, worry and so on cover us thickly. 
Many a time our life becomes cloudy and whirling and murky, and it feels like things will never be normal again.
But as time passes, jus like how the mud settles in the water in the mud puddle.. stillness and stasis is restored in our life too. Though it may not end up with the pieces settling exactly where they were before.. but thats the beauty of life right?
This gives us the opportunity to start all over again...to re-discover..be delighted and surprised all over again.

I could see God's blessing in the mud puddle.

Ironically as I grew up, initially I was often drawn to these mud puddles. It’s kind of fun to dabble in the dirt, throw off inhibitions, and paint my face like brave warrior princesses I secretly want to be. But then the mud starts to dry and I can’t get out. It’s uncomfortable and I am stained. These same mud puddles became uncomfortable and repulsive. Just like some of the circumstances in my life that I find myself in.  Some of the “mud puddles” in my life feel very threatening...some are like giant sink holes..and some dont seem to make sense at all.  But like I said what if there are blessings in these “mud puddles” of life?
Now I don't find these mud puddles uncomfortable....neither do I want to avoid them coz i don't want to miss out on all that God has in store for me.. all because I am too focused on the stickiness and yuckyness of these“mud puddles”.

I am sure there is joy to be had and thanks to be given when life is clear and much less muddy. My prayer for you and for me is to be encouraged to find the blessings in the midst of the “mud puddles”; when life is a little less…clear.

So if you too are languishing in a mud puddle of life, like me... trust god and believe You are NOT stuck. And you are NOT defined by any mud.

Letting life take over

Scribbling my thoughts daily has been great for a number of reasons. One of them is because of how vulnerable it makes me feel.
I have lived my whole life hiding who I am, running away from one thing or another, or being a chameleon to fit in. Like many others they were all my survival mechanism. But after my life has changed as a result of my ailments and disabilities, they’ve all outlived their use.
I don’t need them anymore. I live in another world now..a world I hated to live in.
But through this scribbling practice I am learning to let go of these mechanisms.

Yesterday I read a post about beimg in 5he ptesent . I’ve since been scrambling to get somewhere and get something out it.

It made me think where I am...Now. I’m transitioning to a life of the powerful “now”, and shedding the skin of the old me.. that girl that feared the future, that raged about the past.

I’m learning to let go.… specifically of the need to struggle and be in control.

A very wise friend of mine (yeah you guessed it right...who else that wise goose could be other than my best friend..my husband) once told me that we can’t control the circumstances of our lives but we can control how we react to them.
I don’t entirely agree that we can’t control the circumstances of our lives because our very demeanor and mentality already filters what comes into our lives, thereby “controlling” the experience to an extent, but the power of choice still stands.

About thirteen years ago, when I was in Trivandrum, i had been to the shangumukam beach with my family and including my cousins and their families. So that was a whole lot of people, so missing out on some one couldn't be called negligence.
I usually never go near the water cause i find it ickky to get stuck with sand all over. So I always stayed at the shore making sand castles (yeah ..I still love it). But incidently on that day coz the whole family was having a blast in the waves I decided to join them too.
My greatest epiphany came remembering that incident which happened thirteen years bavk in my life. Funny, huh?

I was body surfing with my sister, having a blast off the coast of shangumukham beach when I realized that I was very far away from the shore... and more importantly i was the only one who noticed that!!!!
One I’m not swimmer..and two I am dead scared of the water. In a panic, I began to swim frantically back to the shore, but the waves pushed and pushed back. I hadn’t planned on this. I could only see my family enjoying and so indulged in their enjoyment...that none noticed that i was not at the shore building castles anymore and instead was fighting with waves and drinking more and more salt water.

I panicked even further when I realized I didn’t have the strength to push myself back to shore with the waves pushing against me. I didn’t know what to do.

Then the most incredible thing happened to me.

I gave up and stopped struggling and fighting the waves. I was astounded. I stopped and put my feet to the floor – though I was still far away from the shore, the water was shallow enough for me to touch the floor.

As soon as I stopped, the currents parted under me. They just stopped. Nothing pushed against me anymore. I walked back to shore, then, and I felt a gentle push from behind by the waves along the way. It was incredible and it’s stayed with me.

So remembering that episode today I realised I had been struggling for too long. I din’t have to anymore. I can let go and just listen to my heart… and trust that when I do let go, life will take over and gently, warmly, lovingly carry me to whatever next destination awaits me. Life hasn’t let me down, yet. It never will. ❤

An open letter to all my loved ones!

A Letter to all my loved ones who are aware of my Chronic autoimmune disorder and the pain, fatigue and partial paralysis attached to it. 
Chronic disorder such as myasthenia gravis and acute urticaria alongwith psychotic non-epileptic seizures... means many things change, and a lot of them are invisible...as is in my case too. Many who met me after my diagnosis have made comments like.."thank god u don't have cancer or have not been hurt in an accident", and so on, without even understanding even a little about chronic disorder and its effects.

In the pure spirit of informing those who wish to understand: These are the things that I would humbly request you to understand about me before you judging me. 

> Yes I am sick but that no way means I'm not still a human being. I have to spend most of my day in considerable pain, exhaustion and intermittent paralysis... even so I still worry about work, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too. 

>When you get fever or cold, you probably feel miserable with it, but I've been sick for months now. But I can't be miserable all the time. In fact, I put in all efforts at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy...that's it. It no way means that I'm not experiencing pain or fatigue or that it has reduced my state of paralysis, which comes and goes at its own whims and fancy, or that I'm getting better, or any of those things. Many a times when my happy face or sound has been welcomed with comments like "Oh, you're sounding better!" or "But you look so healthy!" I am just coping. I am sounding happy and trying my best to normalise atleast some aspects of my life. 

>There have been days when I have been able to stand up for ten minutes on my own without any support... that doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up or walk without support yesterday doesn't mean that I can do the same today. With Myasthenia gravis I am either paralyzed, or I can move... making my condition more confusing everyday. I am more like a yo-yo. I wake up with a sense of uncertainty as to how my body is going react on that day. I know it's hard to believe but my body has ditched me even from minute to minute expectation. That is one of the hardest and most frustrating components of my life now..since it has effected all my activities, be it sitting, walking, thinking, concentrating and so on, it applies to everything.

>As I said my condition keeps varying. Most often if I am able to walk till the washroom and back, the next day or maybe even after few hours I might have trouble getting to the next room. There is just no point saying "But you did it before!" or "Oh, come on, I know you can do this!"  I just would like to remind you that you are able, and so you are very lucky, to be physically able to do all of the things that you can do. 

>Often stretching myself to getting moving, excercising or doing things does not make me feel better, and can often make me seriously worse. I wish could explain what I have to go through or how I suffer in my own private time. Hearing that I need to exercise, or do some things to "get my mind off of it", often frustrate me to tears, and worsens my state. If I was capable of doing some things any or all of the time, trust me I would have. But my body fails me each time. Sometimes participating in a single activity for a short or a long period of time causes more damage and physical pain than you could ever imagine. And the  recovery time goes intense and long. Its not always evident on my face or in my body language. All this further leads me to feeling depressed (wouldn't you get depressed and down if you were constantly in pain and exhausted for months togather). 

I totally appreciate the thoughts and efforts of my loved ones and it's not that I don't want to get well. The Almighty knows that isn't true.
If I seem touchy, I sincerely hope I will be not be misunderstood. I have been, and am still, going through a lot. My ailment has wreaked a havoc on my body and my mind. My last six months have been exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability.

In many ways I depend on you, my family...my loved ones. I need you to visit me when I am too sick to go out.
You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able. 

I know I will not succumb to all this and will overcome this phase with your love, support and blessings. And cant thank you enuf for standing beside me now...and all along. It really does mean a lot.

 Lots of love

Learning lessons...the hard way!

Teaching the lessons "the hard way"...thats  God's plan for me...because that's only how I would learn...I guess.
When all is going smooth and easy, I tend to drift easy and enjoy myself. But when I am called upon to engage the best of my ability and skill to manage difficult situations and emotions, most of the times my skill hasn't held up...as expected by myself...even by as God, I feel.
I have felt helpless and unsure and have been in a good amount of pain.
But now I realise that's exactly when I grow. 
 So to feel better, I have learnt to ask for help, and also have changed my perspective towards almost everything...be it life, relationships, peace, joy, desire and so on...and learning to understand the true meaning of inner peace.
I have passed through and am still passing through difficulties and I am grateful and happy to accept that I have passed through most of them.
It has not been a graceful or pretty or pleasant experience, but the mere act of passing though and reaching where I am today is the lesson I gracefully accept today. 

Thank you God for the ever growing strength in me...which is keeping me grounded and so I accept all the challenges You throw at me and promise that I will appreciate each of them as they instill growth in me.

God bless you all!

JEALOUS...yes I was!

When your chronic illness leaves you jealous of the “normal”

How do you deal with jealousy? I’ve been having my moments lately where the little green horned monster has been following me around.

No, no I am not talking about “wow, I’d love to have that car” or not even "oh, I wish I could do that” feeling that creeps in from time to time. I’m talking about the deeper, closer to home jealousy that leaves you grasping on the edge of the cliff to depression. The jealousy that leaves you bitter and withdrawn.

I am talking of the feeling of jealousy when I see people walk around the block or do their own grocery shopping.

But is jealousy something I really need to address in my life? Can it possibly have an affect on my health?

Then I came across a proverb : "A heart at peace gives life to the body, but envy rots the bones."

I realised I already have chronic illness and  I certainly don’t need anything else that will negatively affect my health.

So this is how I am dealing with jealousy:

Trying to figure out why I am jealous. Is it just from feeling self-compassion and a desire to be able to do more? Am I truly jealous over what they have or are? Am I grieving over losing life as I knew it before chronic illness took over?
Once I get my reason I find it easier to deal with it.
I have also started noting how my jealousy could affect those around you. A cloud of negativity can overtake my home when I allow myself to steep in jealousy.
My family may withdraw as they may worry that I might get upset when they tell me about something exciting going on in their life. 
So I remind myself of the positive things in my life. I have a gratitude journal. At moments when I can’t find the silver lining to the cloud I am in, I go through the journal and remember I have so much to be thankful for!
It took time, but I came up with many reasons I’m thankful for my illness.

I constantly put in efforts to be aware of the possibility of resentment creeping in. It tends to follow jealousy very closely and can ruin my relationship with the person I am jealous of.
Actually, it can ruin any of my relationships as I would begin to be a person seen as resentful and bitter person.

Now I take a moment to look at the grass on the other side of the fence. NO NO NOT THE GREEN GRASS, BUT THE BROWN, WITHERED GRASS of someone less fortunate than myself.

It helps me keep things in perspective when I take time to see the needs and hardships of others. Even if it only gives me the knowledge that I am not alone in my burdens.

Trying to deal with situations like these as best as possible reduced stressed and frustrating feelings a lot for me. And relaxed Deepthi often results in happy and above all seizure free Deepthi!!!😁

No! I will not Quit!

I had a very fatigue and pain filled day today unlike last few days when I was feeling a lot better.
I know this is not the end. Instead the resolve that I carry with me today is more than I did at the beginning of my illness...my resolve to pick myself up again. Keeping a track of my yet to be tamed frustration and guilt..I am learning to be kinder to myself..my resolve to not equate my intermittent pain induced, quitting with failure... to list out my blessings and have  gratitude for all that I do have and for the wonderful people I have been given in my life.

My illness has forced me to slow way down. To close not one but many chapters in my life.
I am bent, but thanks to the Almighty and the blessings of my elders not yet broken. I turn the page and start anew daily. I am sure I can craft a future that is uniquely mine — with limitations and all.
Enduring the pain and fatigue I ending my day with a promised to myself and a prayer to god that in every new chapter of my life I will carry with me a new sense of empathy, of gratitude and of patience — with myself and with others.

Good night!❤😪

I want to be Phoenix!

As a child I had read about the mythical powers of a Phoenix to rise from the ashes and be born again. I found it quiet enduring as a symbol of rebirth.
At the same time I view it as an amazing metaphor for living through the trials and tribulations that life brings to us.  Don’t you think so too?
But is this always achievable for  chronically ill / Autoimmunes like me to  reinvent myself or do I have to live in the ashes.
When our bodies continue to decline and every day is a test of our endurance, can we really call this an evolving life? 

Comparing my life now, on a purely physical basis, to the life I had it can feel a lot like I am living with the ashes. But if I compare to my life now to my previous life am I letting this other life truly evolve? 

I do have a lot more physical limitations and hardships in this life, which forces me to put in a lot of effort and work a lot harder to take care of this body. I dont think this can be termed as evolution...its a lot more like  maintenance to me😬!

And… I do see many changes... not evolution 😑 in my social life and circumstances compared to my previous life. This has also meant that I have to choose more wisely about who I spend my time on and my time with. 

BUT there have also been a whole new world of people and personal growth that has been opened up to me through this trial by fire. People I would have never met before.  Things I would have taken for granted before. Wisdom I may have never gained on my previous life course. 

So should I view this life as a rebirth, renewal, an evolution or will I spend my life amongst the ashes of the old life?

… But I truly want to be the Pheonix😆! 

I truly want to reinvent myself and be and do everything possible in this new form. I want to find new opportunities and depth that may never have been available to me in my old stressful, workaholic, success driven, angst ridden, control freak, anxiety riddled, competitive and confident life. 

I want to evolve. 

And maybe that is the way that I need to be in order to get there.  Because I truly want to rise bad enough. 

I also hope for all of us out there, living with life long health challenges, and I hope that there is a little Pheonix in us all. Always waiting to rise again from the fire and the pain and always being able to start again with new hope and new purpose.