Mind of my Stroked Brain

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

There are many instances from my past that i cant recollect after the stroke. Its as if the stroke cleanly deleted them randomly. Timeline is no matter. Some instances are recent and some long back. I have also doubted myself whether the stroke is just a convenient way for me to explain away simple forgetting of something from the past... If some more details of the instance from others jogs some recollection, i conclude its just forgetfulness. If seems like compltely unaware of, almost like others are screwing with me, i conclude that it might have happened and the stroke erased it. It's a lot easier to convince me that hypothetical instances actually happened with me these days 😀

This is what i think and feel. I could be off a bit, not a lot, based on practical experience... Long term: Based on how things are moving, i feel i will probably get back to about 30% of what i used to be overall... Let me qualify that, Left hand almost fully ok with much lesser strength. Right hand very minimal movement. I will become a leftie... I think i will be able to independently sit up and stand up. However given my balance situation, walking by myself seems like a miracle. Running impossible... Legs will be better, right will be weaker.. Voice and speech will come back, but speech will be very slow and softer.. this could be faster after the vocal chords procedure, i dont know... I will probably get to semi solids, maybe soft solids, like upma, kichidi , etc. Proper solid food life is over. ( But drinks life will still exist, few more years to make up now 😜) Problems with digestion, constipation, etc will persist, albeit a bit better. Lungs state and my bronchitis issues cou

Good day to you all. Today is my 2nd Strokeversary I had a massive bascilar stroke on 6th feb 2019. I was 43yrs then and led a reasonably healthy lifestyle. It was just a freak incident... By the time my family and friends took me to 2 hospitals, did mri scans, got opinions , ambulance confusions etc . I think it was about 7 hours before i landed up with surgery for removing the clot. Given the state of things, i am surprised it was even managed by that time and i am grateful for my family and friends and the doctors who treated me. They say i was consciousness next day, but i was in some other land of hallucinations and imaginations and don't recollect anything for the 3 weeks in ICU and incoherent understanding for another 2 Weeks. After that my mind has been perfectly alright till date  The body however is a whole other story..  After i had the stroke, i had no movement at all. For a few weeks, i could only blink my eyes. I couldn't move the eyeballs either.... 2 years later

Since i don't/can't do anything else these days (except numb my head with tv), i just watch everything (which i can see), and observe. I could be overanalysing things and concluding wrong things also, i don't know. That won't stop me from sharing my thoughts...😜 One of the biggest challenges i face everyday (it's definitely better than anything before), is the absolute lack of articulation, intonation, expressions, body language in what i say on WhatsApp. I can only be selective abt the words used and hope it's understood as intended. No making amends later if not. But then, i notice pretty much everyone crippled by this disability nowadays, thanks to various devises. Yes, people are speaking, but absorbed in devices at the same time. In this, they have a voice no doubt, but can't pay attention to the words being used. I have seen miscommunication and sometimes folks talking about different things thinking they are talking about same time. In the evolutiona