A lifetime companion

"Life is grate'ful"- is that grammatically correct? I don't worry about such petty stuffs anymore..But I should make it clear why I chose such a name for my blog address. A large part of it is due to a friend 'within' me who taught me a lot of discipline through examples that sometimes were painful, but every time made me proud about "going through" it.

Aberration in Chloride Channel gene in the 7th chromosome of a human being, and what will be the outcome?- Myotonia Congenita, a muscular defect characterized by hypertrophy and stiffness of muscles.
It makes all the voluntary muscle by virtue of which you can make movements, from muscles in mouth to muscles at the tip of the toe; STIFF, so that you will not be able to move it at your will. Under some shock conditions you will fall like a dead log unable to move any of your limbs. My mother and two of her sisters has it and that's where, I got it. I have trained myself from my childhood to prepare for any adversity this might cause by warming up my muscles before any physical activity I undertake. But life always brings uncertainties which cannot be anticipated and those times I have fallen like a rag doll and continue to do that even now. Added to the difficulty is that there is no visible symptom and people usually don't understand the difficulty and expect you to act as a normal person. The good part is that body unable to move fast, will be falling in 'slow motion' and this myotonic shock will take some time to recover. So I have to lie down on ground for some time enjoying the rest before I can collect myself and manage to stand firm. As a young kid this was an embarassment that even if comebody comes to help you, you will not be able to accept it. Body remains as light as a feather (at least that's what Venki says) always and seeing all these drama, people might think I am drunk as well, ha ha.

Earliest of my memory of Myo is this question popping in mind that when all my friends can move their hands and legs at their will, why can't I?
I loved to play cricket, can hit six and four, but can’t take singles and doubles since that involves running. I am grateful for my friends who understood this and always let me play with bye-runners;-D
School days went on without much trouble since I could walk without difficulty and except during some of the dreadful physical training classes, I emerged un-harmed.
I remember gasping for breaths when stomach gets empty and then I go so sluggish, and all muscles tend to weaken. I was fortunate to have my school at a walkable distance from my home and could avoid bus travel through out.

Once I didn’t go to eat lunch since I was cramming up portions for an afternoon exam and while I was writing the exam Achchan came by, to inquire. For fear of not able to climb steps again, I stayed in the elevated stage where the exam was being conducted and in front of all others staring at me, I shouted out that I am not hungry and went on to write the exam. I heard criticism from my teachers for this behavior since they thought I was being dis-respectful to my father. Also during exams, every time I had to ask an answer sheet I would have to prepare myself, get up and walk with my abnormal gait. This would always make a scene, and to avoid that, I tried to complete all my answers within the sheet provided initially.

For my pre-degree, going to SS College everyday was an ordeal since I had to get into bus. I remember Amma not allowing me to go to Payyannur college even after they had Sanskrit which I loved to study as my second language since I had difficulty in climbing bus and travel so far. In our parts of state climbing bus would become a difficult task even for a normal person, so not to mention people like me! Since looking at me people cannot make out whether I have some problem, they take it for granted and I have found myself falling from a bus that's moving, many times.
During my UG, how many times I don’t remember, I have fell down climbing steps like that and then my friends will get angry at the bus conductor for his carelessness and later I would explain that it was not his fault.

When I finally got diagnosed after a series of painful shock electrical diagnosis tests, the EMG tests, I was relieved that I would get some medication. Took Dilantin tablets so that muscles get relaxed, for almost a year, as per the neurologist's instruction (Dr.Abdul Majeed at Thrissur, an amazing doctor for whom I have lot of respect). But it got worse and soon I found myself unable to get up from bus seat if I sit for some time. So I avoided sitting in bus even if there were empty seats. I stopped telling this to parents as well so that they don't get sad at my plight. But Amma caught me one early morning while brushing my teeth and falling down near our wash basin and the whole of the basin coming on top of me and then scolded me for not telling her. Then the intensity of medication increased, Eptoin tablets, almost 300mg/day for years after wards so that I could avert such casualties on a daily basis. This tablet was so powerful that when I took it for the first time, I felt giddy and had to lie down immediately. But, afterwards got used to it. What this medications did was not to make muscles fast again, but will avoid it getting further sluggish. So with those, I can work with my muscles taking precautions and warming it up before I make any movement.

Eptoin stayed with me even when I came to US and I had to get many bottles of Eptoin tablets whenever any of my friends went to India since I didn't have prescription to get that in US and I didn't want to change the medicine also.
It stayed with me until I started practicing Sudarshan Kriya! With SK, I could completely avoid taking any tablets and still have a 'normal' life.
About the miracle of SK and AOL Silver Jubilee, 2006, that changed so much within and without, including this disease, will write another post later.