Mind of my Stroked Brain

I don't think I have really understood before the stroke what it means or does to your state of mind when you loose you ability to do things which i used to do so comfortably, confidently and took for granted..  Sure when i came across someone with an affected ability, i was compassionate and empathetic, but i truly had never understood as it was only an intellectual understanding and the real feeling is not possible to explain. While i was thinking about this, I realised that it's not only stroke or any other ailments, but very true for the process of getting old and frail as well. Its the same thoughts and feelings and getting dependent on others for things which once you could do..  Memories of younger days must come to haunt everytime.. So, when old aged people are stubborn, difficult, unreasonable or any other adjective, they are not acting crary, i imagine they ARE going crazy dealing with this emotion/ feeling. It's very hard for stroke patients because of the sudden...

Hello all, Apologies in advance as this will kick up some dust or offend others. But its a thought thats been bothering me for a long time now and rather than avoid it, as i was not coming up with any answers, i thought I should put it out and see if i find something... It's a very philosophical question, but very real and not hypothetical .. When i had my stroke, i was depressed, frustrated, desperate, etc. and hoped everyday would somehow be the last .. just couldn't bear the thought of carrying on... It could have been anyone, i just pulled the short straw... Fast forward 26 months and I'm no longer depressed, or desperate, or frustrated , but the thought of "pulling the plug" remains... Now, its a very rational and pracital question... For more than 2 years i have seen everyone around me struggle. The emotional burden i have become and not to mention the financial ruin i have set everyone in... Of course everyone around me will deny its a problem and carry on....

So, this is on a very interesting note.... I have for the past sometime, observed the malayalam accent (at close quarters) 😊 Even if folks know english (or any other language) well, the accent is so prevalent no matter.. So my conclusion is as follows: What we think as accent change is not accent change at all. They replace few syllables with other equivalents , and i think they do it because those sounds or syllables dont exist in the malayalam alphabet ( their equivalent of swaras and vynjanas). It's like the Japanese. Their alphabet doesnt have the sound "LA" (ಲ) so they replace it with "RA" (ರ) . So something like 'low' becomes 'row'. Similarly i feel these are the 4 main transformations that happens (there could be more, but i feel these are main) 1. 'TA' (ತ/ಟ) gets replaced by 'DA' (ಡ) 2. 'NA' (ನ) gets replaced by 'NA' (ಣ) 3 'LA' (ಲ) gets replaced by 'LA' (ಳ) 4. 'O'/ 'OH' (ಒ)...

I ve hesitated to send this note. Worried its not dignified (for the reader, i have none anymore). But it is a big part of my everyday life and struggle, so thought I'd share it anyway. Almost all stroke survivors face some degree of incontinence after. I'm no exception. The degree is different... From the time of the stroke, i have been unable to pass motion. My wife has tried various permutations and combinations of foods, fibers, ghee not to mention strong laxatives, etc. nothing has helped. I have to rely on being administered enema every 3 - 4 days. The chemical in the enema causes involuntary movement and I'm relieved. For more than a year, it was so bad,  the Enema would not even trigger involuntary movements and was no use. Every 2 - 3 days, they had to do, what is referred to as PR in nursing circles. Basically put their fingers in deep, and pull out what they can. It's very painful, but even more uncomfortable otherwise. I am glad enema is working now, so i ca...

The most gut wrenching thing about my state is not the physical pain or discomfort. Its being absent from life and no being able to participate - every waking hour, minute, every moment... Its been 2 years. My kids are growing up fast, my wife is doing everything alone, i moved back to India so i could take care of my parents .. Everyone comes and tells me nothing exciting is happening and I'm missing nothing. I'm not looking for grand events, just simple daily stuff.. i know what im missing... Everyday i turn on the tv and keep it loud deliberately so i don't hear anything from outside the room and to numb my mind. Its intolerable knowing what I'm missing. I genuinely wish i didn't survive the stroke. My biggest horror is not that I'll die, but that I'll have a long life. If you have faith, i guess its easier to blame someone for it or belive its your own karma. Its horrible otherwise. I have been ready for a long time now to end this misery for good. But i...

My nurse from 10 months left yesterday. There is nothing wrong with the two nurses taking care now, but something is not there. We hesitate to even change our barber because they enter a bit of what we consider personal space... What these nurses do daily, even our nearest and dearest ones will hesitate to think of doing.. Its a bond that developes over time. An unnamed an undefined bond...

The reference to the Tobii device a few days back, made me reflect on my communication saga and thought i'll share it with you all. Keen to know any other stroke survivor's story, and and ideas which we all could benefit from... When I had the stroke and got back to clear and coherent understanding of what had hit us, it was about 5 weeks. It was a complétely unnerving feeling and what made it worse was the inability to communicate and express it in any way. Very early on, folks realised i could move my eye balls vertically and blink. Very soon I had two words in my vocabulary. I was asked to look up for Yes and Down for no. It was a good start but the most frustrating as well. -------> I had no way of asking or knowing what I wanted. I could only respond to what everyone wanted to know. Besides, i realised soon its not easy for everyone to frame questions that were closed ended. Most end up having to be Maybe, and other variants, so i chose to keep quiet. Next was a very br...