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.