have been away from this blog for a long time now..........and yes it was mostly intentional........when everything becomes so convoluted in life, i tend to look around for something else......driving my mind away from the current situation..............is it escapism?? it may well be but it is my survival strategy right now..........or does it even qualify to be called a strategy........i actually end up behaving like this rather unconsciously...........and no, i am not at peace with myself...........increasingly now i feel like exhausted and drained........so much so that thinking about the problems makes my heart sink..........that is the reason i am drawn towards my food blogs like never before.....i have drafted so many posts there that the number of drafts has become as much as the posted ones...........keeping myself engaged is giving some relief........though the peace of mind is all gone................

being away from writing here was something like not being able to see eye to eye with my own self.......as if i do not relate with what my frame of mind is right now..........


i wrote these lines two weeks back and dint post as i felt it is a bit depressing ............and i never want to make any body feel like that...........never in my wildest dreams i would like to propagate this sinking feeling of mine .......especially to those who come here n read my blog..............but then i thought that i am writing this blog just to tell everybody to come out n survive the odds, how i am doing it myself.........so i would really want to tell here that hitting the bottom is the end of sinking.........after that you have to come up......as i am trying all the while............it takes a lot of ' maneuvering myself '........yes, and consciously so.........there are moments when i am deep drown into tears , but at the same time i know that it is 'me n myself' only who is going to change this..............whatever way......

yes i was kind of not able to make a dialogue with myself.......not writing here is like that.............now when i write this, there is this feeling that i have the courage to talk to myself........and whatever is coming to me right now , has to go away..........when my little angel is suffering like that .......my head spins off........heart sinking........n i completely loose track..............her recurrent fits, her inability to eat.......n most of all, that expression of her eyes
makes my heart wrench ........my limbs go numb and for a moment i forget where i am n what i am doing...........that frantic comforting act done to her is all done in a haze........almost mechanically.................but at the end of this i find myself diverting my mind to something else......sometimes stepping out into the garden or surfing the net aimlessly.........i find something or the other to make my mind think something else........then i am able to talk to mithi........about the song playing on the radio ........or what she wants to wear or how her nails are so beautiful.........she looks comfortable only when i am able to talk to her in a normal voice........she doesn't smile anymore...........my greatest disappointment, but even when she looks relieved i feel like my 'maneuvering act' is working...........

now i am relieved that i could write here ......it was like unburdening my mind..........more like a painful regurgitation , with a throbbing head..........but in the end it calms you down...............it has connected myself with me.........

ratna banerji is a dear friend of mine who wrote these beautiful words to me after reading my previous post and again i feel lucky that i find a few good people around me who strengthen my belief in my own value system.............i felt like i wanted to preserve these words with me on this very space so i copied n pasted it here as it is..........she has written a few bangla words but i want to keep it as it is.......

surely deserving a separate post.....


Tumi khub sundor likhecho.asole amader negative feeling gulo na chaitei khub sahoje ese jae,
kintu positive feelings gulo ke chesta kore ante hoy.sei chesta ta habit e transfer korte
samoy lage.
Tomake ekta boier naam bolchi, parle poro,
SWAMI SUKHABODHANANDA er lekha"CELEBRATING SUCCESS & FAILURE"..

okhane uni bolchen "action is an expression of thought,thought is an expression of our belief."

thought ase information, experience,belief system & sanskar theke.hence the consequential aftereffects
of thought towards sanskar is as follows:

thought > feelings & emotion > attitude > action > habit > personality > destiny > sanskar.



uni bolchen..." you are your enemy and you are your friend.A mind that encourages you to go
forward wisely is a true friend.A mind that discourages you is truly an enemy.constantly be
alert to who is guiding your life

amader thought process e thik kare amader feelings positive habe na negetive habe.
tomar kache je banana seller ese chilo, tar purono kono experience tar belief system take mould kore dieche,
tai sekhan theke o berie aste parche na.ekta abiswas kaj korche sakoler oporei.

tai ekhane swami sukhabodhanando bolchen," let the center of your life be trust and the periphery be doubt.
but if the center of your life is doubt and periphery trust then you are in a wrong state.
so fine tune your life in deep trust.

negetive thinking to sakoleri ase, asbei.kintu seta je negetive eta feel korte paratai kichuta positive progress
nahole besirbhag manus bujhtei parena je tar thought process tar activities negative thinking er result.

the banana seller

for many days i have been just thinking n not writing anything..........the mind keeps churning the memories and ongoing experiences, while the physical being is busy in mundane activities..................inner conflicts arise when i put up a question within myself, if i am doing something wrong or is it wrong only for others.............obviously rights and wrongs are highly relative and view points may be different................i was just thinking from where this strong conviction comes in me and how this thinking process becomes so strong that a concrete belief is formed, an unshakable faith is build up.................i am a very strong opinionated person and my opinions are made only after a lot of thoughts going behind it , otherwise i don't have an opinion on so many worldly matters........ i am questioning myself if i am arrogant about my opinions or how my faiths and beliefs are important for me, and do our experiences of our past life influence our opinion making process????

i have been watching a banana seller lately, he is an old man who sells bananas in our colony knocking our doors to ask if we need bananas....... this is a humble person who carries his bananas in a wicker basket on his head, mostly the basket is so heavy that he asks me to help taking the basket off his head and keeping it back to his head after i am done with buying bananas...... i noticed a very awkward thing when i helped him putting the basket back on his head for the first time........when i pulled my hands back he looked at it promptly to check if i have taken any extra banana from his basket, i could not believe it that he was thinking i could steal a banana during that............do i look like a chorrr???
but to my amusement he still does the same and when i thought about it and discussed it with arvind.....reached to this conclusion that he might have experienced it .........imagine this humble banana seller who has seen people from decent homes stealing his bananas on the pretext of helping him......think of his opinion about decent people around him.............he has his own ways to deal with it............. at the same time he is not hurting anybody to save his interest.

many such cumulative experiences mold our personalities............many good and bad experiences get buried into deeper crevices of our brain and actually becomes our subconscious, even when we don't want to be influenced by a bad experience , it is always there at the back of our mind................the truth is , this is how our mind and body works.

being optimistic and positive is what everybody talks and i really believe in being positive, it has worked for me, immensely, i can tell many chapters of how i have been benefited just by being positive, even when every single thing has been against me............but at the same time i want to tell that, if i become weak or pessimistic or even negative for a while...............it is not that bad.............after all these negative moments make me realize what i have to choose.....if i am not able to address my negativity, how will i be able to sort it out.

it is better to address my negative feelings head on, if i have some fears, some insecurities or some worries ........these are all connected to my past experiences........it is a proven fact even in the science of psychology............if i am able to weed out all those thoughts from my mind , i will be a successful positive thinker...........upto my understanding , nobody is an absolute positive thinker and all those who practice positivity, are just moving towards positive faith.........and that is what i intend to........

finding my ways with frederick's ataxia

actually it is about finding my ways with the circumstances of life, all of them put together, but why i name only frederick's ataxia, it is probably because this one is the biggest challenge that life has given me........to my beloved daughter, to the angel who would have been a pretty n chirpy young girl by now..........she is still pretty, but this FA is torturing her to no limits.......her breathing is becoming more n more difficult, her tongue more paralyzed, but she is stronger than me i suppose.....trying to tell me something,which my senses are not able to decipher...........and when i talk to her, anything and everything , she likes it and one very significant development i can see is , that now she knows that she can do something on her own to get over with a coughing bout or even a seizure..........during such discomforts i have been watching her from a distance and telling her ....mithi will push it hard............and i can see the change in her approach, as earlier she would get annoyed and teary eyed, visibly shaken and extremely exhausted after every such bout.........now she fights her way through it and though her face gets red n eyes teary due to the impact, she feels relieved after it and contented at her little victory...........i cheer her up and do what she likes the most......kissing all over her face.

i am not trying to write a literary piece, but there is definitely a purpose, writing all this is helping me find new ways...........the most important being, how i learnt to get doing all this writing blogs which earlier i thought was impossible cuz mithi will be neglected and i will not be able to keep undivided attention towards her...............earlier i used to keep her next to my chair and physically touching her with my elbow or feet so that she knows that mama is close to her..........meanwhile typing on the computer and talking to her in between , fearing she might feel isolated or neglected...........now when i am done with her daily chores, i tell her that it is time to rest for mithi and mama will do her work.......she understands when i tell her that mama will come to you whenever she calls..........sometimes she makes a sound to call me n sometimes it is just a harried breathing pattern that i have to catch, but now she knows that mama will come when she needs her.

i just pray this bloody FA does not give her any more pain and that she becomes stronger to fight with it.............my purpose to write all this is partially directed towards other people who are affected with FA or have a family member who is affected with it.......i find many people who google search for frederick's ataxia, come to this blog and read it......i really would like to exchange ideas and solutions and suggestions with them as we can create a dialogue between us and may get benefited....i request all those people to post a comment on this blog and let me know more.....any suggestions are more than welcome.......i would love to get sugestions where i am wrong or what else can be done to improve the living conditions of a FA patient..............querries are also welcome.
i take a great care of nutrition in her food and intend to share what type of food i give to her............which is keeping her as comfortable as can be.........the problems of a sedentary patient like her are many and i would really like to make a link with others in the same situation.............i would like to know how it can be dealt with in a better way or if i may help others...............please let me know.........

nightmare

there was some uneasy feeling in my sleep and it was a very bad dream that i don't remember now, but it caused me to get up immediately, what i saw, mithi was in the middle of a bad seizure, almost at the verge of choking.............all my muscles got to work immediately..............thank God, she knows that she has to fight, that she has to be strong, and when mama is with her she is relieved ...........her face turns purple-blue.......and when it is over, she looks at me,as if saying , mama i won.............i love her for this.............she answers me in a way, to the things which i keep telling her.........jab mithi ko dard hoga to mithi thodi aur strong ho jayegi...........jab mithi ko koi pareshan karega to mithi usko dhakka de degi.................she tells me , mama i pushed it hard.

it is a constant worry with me that if something happens to mithi , and if i am in sleep at that time.....what will happen.........i have many times told mithi that whenever mama is sleeping and she feels some problem, she should tell mama in a dream.............i think mithi learned to tell me this time, this way..................hope she manages to tell me whenever she needs me............

a friend asked me why you named this blog homealone..........i had no other word on my mind when i was signing up..........i had been confined to home forever it seems.........even when i went out for clubbing or any other seemingly entertaining activity, in those days, i always felt lost..........lost in the most crowded places.......my mind was always at home...................and when i was at home, alone, it was like a mad rush of doing something.........i didn't know what, but it seems, i thought i had to do something............what was that something, i didn't know...........and because i couldn't do anything of that sort...............the most common thing i did was crying or eating something or the other................so much so that when my whole day maid used to leave in the evening, i always wanted to stop her till late ............till arvind comes from office..............it was something like i had put up a brave face in front of others but the moment i was alone......all my strength crumbled down........it seems.
recently i have started going out on weekends, when arvind is at home to take care of mithi............and nobody can understand better than me that the traffic on the roads can be therapeutic.............the marketplace chaos can be refreshing...and the moving, rushing people all around can assure you that life is normal.........everything is going on...............move on........get up and move on.........

however hard i wanted, i could not write anything on this blog of mine throughout the last week, i don't know why but there was a thought somewhere on the back of my mind, that i am being judged.............from the words i write............that somebody may make their own inference of what i am or what i think.................what worried me the most, is that i have never cared what people think about me, i always do what i think is right and nobody dictates my rights and wrongs...................thankfully the good sense prevailed and i came back to my natural self.

sometimes when people misunderstand what i say, i don't even feel the need to explain myself....or to convince them...........but i prefer to give myself time to evaluate myself,............. what was wrong?.......my saying.......or the other person's understanding.............usually i get the answer after pounding my stubborn head...........as i got it now........i don't do anything to please people.

my purpose of writing here is finding happiness i what i do................writing here is like telling everybody how contented i am...........this is a very beautiful feeling that i can do the things the way i want to..............i don't think this is arrogant to think like that, see how the things have come to me in life,................everyday is like struggling against a new challenge..........it is turbulent, very much so, but when in the end i see that i found a way out..............i think being successful in life means a lot like this.

i am reminded of the day when i was telling about some bad memories of mine to manisha, and in the end she asked me if i feel successful in life now..............i remember i promptly said yes........manisha understood my yes.........the way i feel, but in today's world when being successful is associated with the kind of money you earn n the kind of lifestyle you have............there are many people who will find me eccentric............i am not complaining, i like being called eccentric......it gives me an edge.

arvind often asks me, why do you keep fighting with yourself............cuz i don't want to fight with other people, don't want to waste my energy.......i'll tell him now.

today i clicked mithi

mithi got up late today n it was a foggy morning..................tough for her cuz after her brushing washing sponging routine,when she is out of the blanket for that while, she needs that daily dose of sunshine.............now a days in winters, i sometimes sing for her........mithi ke liye dhoop aayi..........she smiles when she is in mood..........i say .....aa gayi...aa gayi...dhoop aa gayi......she knows what i am saying....today, that was the time i decided to click her pics, just before her breakfast...................after the feeding , she looks so tired n angry sometimes..........eating is painful for her........sometimes food rising up into her nose, coughing n then she starts getting angry n aaawing me to stop.........sometimes after a sip of water i can continue, n sometimes i have to stop feeding her........she may choke if i force her to.................
don't worry...........it is a routine for me n now i do it almost mechanichally ...............since i know human anatomy a bit.....ENT and all.........i know when to stop..........and moreover she knows it too,how to tell me when she doesn't want to eat.........gurgling out the food, or just aaawing me [much like scolding me],...........interestingly,yesterday when she was aaaaawing n gurgling,refusing to eat.........i just wiped her mouth n said now mama will stop putting more food in your mouth n don't cry now.......but she kept aaawing............then i said....mama will put one more spoonful in your mouth[ i said , chup ho ja mithi nahi to mama ek chammach aur khila degi]......she stopped crying at once.............she understands...............this i have learnt through constant observation........this is what i want to tell so many people, it is not that tough to connect with your child.....a small effort gives you big rewards.......hope my own mom could understand this......and another mother whose daughter was suffering in pain, when a honey bee had entered her ear n was rotting inside for over a month.........and the mother was busy with her daily bhagwan ki puja routine.........if only we could see things with more clarity.......

Mithi at the Age of 8 Months

why i need to write about my life with mithi

it's not that i always wanted to tell everybody about our lives together..it's not an extraordinary life at all..it's just that life has given us a challenge and we are doing what we think is right and of course what our resources allow us to....i mean to say, when resources are limited in the material sense, that's visible, but when our intellectual resource is limiting....it lames us, and it blinds us too.
here i am trying to tell, how we are trying to overcome those limitations of life, which become all the more profound when life puts up challenges before you............one after the other........

many times people have told me that i take very good care of mithi,and also that, not many parents can do that.....this makes me wonder,is it so uncommon to take good care of a useless offspring [believe me i am choking right now,she is not useless for me at all, but nobody seems to understand] a vegetable child, as many people call her.................the truth for me is.........she is my daughter and she loves me...what more a mother can ask for.
all the doctors we have seen for her, have tried to counsel me, though sometimes reluctantly, to detach myself from her, some other people too have advised me so............i could not..........mostly because i didn't feel the need to do so.

how could i be away from her when she needed me,how could i ignore when she needed all that nursing and caring.............up to the age of two years, when she was such an adorable and loving child, she had given me so much of joy ,happiness and above all, contentment of being a mother, that detachment was completely out of question...............i had to learn to deal with it..........it was not easy, i was in denial of the situation for a short period of time....asking myself again and again,what wrong had i done to deserve this....and she might have done to suffer like that.

i was strong enough to learn fast, mithi always cooperated in whatever way she could, as i saw that even when she could not talk,she could under stand me, and though her reflexes were not under her control, she could connect with me in a strange manner. but somewhere i think, i could not convince this to the people around me, i never tried though, i am an absolute eccentric for them.....at the same time i feel very lucky to have a husband like arvind [ i am choking again, strange...] who is completely in tune with my eccentricity. what more i need to say about him.
he loves mithi so much that he is a different person now, on an emotional level i know he is not mentally as strong as me.........he cannot see her in pain and sometimes does not want to see her when she is in extreme physical discomfort, but he compensates this weakness in other ways.........and worth telling, he is learning to face all this pain faster than me now....when i get to a low, he takes over.

still i have not made it clear why i want to write all this.........i have really seen many such children being neglected by their parents or other people...i know most of the time it is unintentional..i was talking of intellectual limitations [ i need a better term for this] which can make us lame .....and blind.....insensitive..........................i had to overcome all this too.................it is very easy to fall prey to self pity.......the next step is .....we try to escape from the situation and do something else to distract [this is when most of the females become cleanliness freaks,upto the level of an obsessive compulsive disorder] , i also started keepin myself busy in cleaning , cooking[it got so obsessive that i started cooking huge amounts of food which evetually got wasted] and other mechanical things to keep my mind away from this.....................at that time i was in a small town in jharkhand, dhanbad, where my husband was posted. ..........as no good advice of any kind was available in that place,i had to analise myself, what i am doing..............doing all this after mithi's requirements ,was physically very demanding and i became very irritable too [though i had a very good full time maid then]...........soon i understood where my energies need to be directed.....................that is what i want to tell everybody.........it's all about making peace with the situation............otherwise it goes on into a whirwind of sorts.............i have seen people becoming insane.

i want to write more about it and would do it soon as i get some more time...mithi has got up.......got to go.

i learnt a new thing today

as i sit here to write ...mithi wants to talk to me .....i am telling her that mama wants to write about her.......i pull her wheel chair towards me and kiss her in between writing this...............it works so well...she is immediately satisfied and i see the 'at ease' expression on her face......this is what she needs...i bit of attention when she wants it......and i have to understand it.........continuous observation helps me doing it most of the time ....as i can't be so perfect that i get to understand all the time......i try and keep an eye on her all the time and most importantely in her case.....her breathing also indicates her discomfort.
her breathing is a bit wheezy as her lungs are pushed to one side, this is because her spine is bending slowly , laterally to her right side..........so her breathing is at a comfortable rhythm when she is at ease.but whenever she pees or soiles her sheets,she becomes uncomfortable and her breathing becomes a bit harried and i know she is calling me.........as soon i uncover her to check or to change the sheets..........she takes a 'sigh of relief'...very distinctly.........and then again,that 'at ease' expression comes back to her face......................................it is very very hectic for me throughout the day changing her sheets around 10-12 times daily.........i surely get tired but i never get irritated on her ,and i am telling this from my heart........what keeps me going is her relieved expression and every time i kiss her or talk to her she connects to me in such a way i cannot express in words, i can only feel it and am really happy that she is my daughter...........


whenever somebody asks me to try for another child..........i always tell them that mithi is giving me all the happiness a child can give to her parents..................okay.... there are problems too but that could have been otherwise too....any body can get ill or confined at any stage of life.....somebody has to take care.....so what if it is me...............she gives me so much in return........

there are things which are really painful....the helplessness..........sometimes not being able to understand her needs or ..........waching her when she has the fits or arhythmic breathing or heart arhythmia...and the likes.........but everything is not in our hands...and we have to accept life as it comes.




i wanted to tell what i learnt today.........yesterday night to be precise............some times during her sleep, her breathing becomes disturbed. so much so that she stops breathing for a while..........when it is mild ,just holding her hands and caressing her forehead etc comforts her to sleep...........and when it is violent she stops breathing for a while ,chest massage and mild chest thumping brings her back to a jerky inhalation. we have to be vigilant always ........but it usually happens frequentely during the night.....disturbing both her and mine sleep..........
what happened yesterdayat bed time,that when a mild fit came during her sleep, i just held her hand with one hand of mine and with the other hand caressed her forehead for a while and whispered into her ears that ..........'mithi so rahi hai....mithi ko bahut neend aa rahi hai.........mithi ko neend me bahut maza aa raha hai'...i kept repeating as i saw her getting comfortable.....................and to my surprise she slept peacefully throughout the night..................imagine what precious thing i learnt today.

rochie.... is that color therapy??? i don't know but i have learnt many such things with her.