Mind of my Stroked Brain

I have shared sometime back about my current thinking about God. When I was young, maybe till end of school, God was what was told all along by everyone around and there was a faith. Blind maybe, but there was a belief. The usual visits to temples, rituals, ceremonies, etc. There was a sort of unquestioning compliance if you will. I think in college days, it was a very distracted time and distanced/ avoided topic. I think some kind of faith existed but was neither expressed or relied upon. I think early adulthood - maybe a decade and half at least, there was no belief or questioning. Just leading a life seperated from such beliefs. I think this was also the time when a lot of rationality and practicality set in. Maybe 3-4 years before my stroke, a sort of curiosity and questions arose. None of them found an answer but it made me pursue things and stuffs that are usually grouped under the broad definition of "spiritual" pursuits. And then my stroke happened. Many thoughts and

What I have observed/ learnt over the last 3+ years, is that the body is extremely resilient. It has many many safety nets and emergency mechanisms to stop it from perishing unnaturally. It needs way more external interference or significant internal damage to give up. But I have assumed that the mind is pretty finicky. It can make us do voluntary damage to the body and cause it to perish if it wanted to. Or be cheerful and make the body healthy and buoyant. In the past, I have felt both. Felt like ending it - but unable to. Happy and still no difference to the body. I have written in the past about finding meaning. Finding a purpose, etc. However, I have found nothing. A few years ago, I used to be a compulsive planner. I used to have a plan for life and even a spreadsheet to boot. Didn't work that way did it. I don't have anything to look forward to. It's not that I don't feel happy or sad or things like that. I feel all of it - more than necessary sometimes. But I am

I feel I have hit a ceiling with my rehab. I have not yet plateaued on the general overall improvements. That will go on with it's snail's pace for some time more. I feel I have hit the ceiling with general strength in the body. I have been at strengthening the left hand and leg for atleast 1.5 years now. After the initial development of strength, I feel it has stopped sometime back. It is still slowly improving wrt flexibility, etc. But strength has stopped a while back - no matter what and how much I exercise it. When I had the stroke - just prior ie, it was very common for me to attend a function (like a wedding) and have a very big meal - I mean a seriously big meal, polish off everything on the plate (the plantain leaf most often) and then have 2 full glasses of water. A glass is usually 250 ~ 300ml. That is my meal now 200 ~ 300ml! Sure, I have protein shake, oatmilk, rice, vegetables etc. But it is 300ml. The label on the box says it is enough and more protein for me. Ho

I had written some time back about the entertainment every time I had an x-ray in the hospital. Unfortunately, there is a downside to the whole matter. When the x-ray guy leaves, he will just leave. I will be in some vague position, the sheets will have been removed, the pillows moved etc. Basically he will just leave. No thought that he should try to put things back the way they were when he came. It is not just the guy with the xray, pretty much everyone in the hospital is like that. The physiotherapist will come, move everything including the bed position for their job and just leave. The nurses will come - whatever the job - feed, vitals check, etc. They will do their work and leave. It bothers me no end. Definitely because I can't move and put back things nor can I ask anyone to do so. Maybe others don't feel as much for that reason. But I also think it is hardwired. When I was very young (I don't remember the age, but it was quite young), my father used to have a cupb

When I was in the hospital - over 3 years back, I was in a land of hallucinations - when I was in the ICU. One of the experiences I had many times was this: There would be aliens (green people) who would carry me somewhere. They would take me to a big black rock and tie me up tightly. I would not be able to move. It would seem like they were ready for some sort of sacrifice. But suddenly they would go away.  It didn't look like an altar , but they would take me each time to that black rock and tie me up. It would be very painful. Excruciatingly painful!  I remember wishing they finish the sacrifice but they would just go away. After a very long time, a shadow would move to a specific place (reminded me of McKenna's gold each time). After that happened, the green people would come back, untie me and take me away... No recollection of the experience after that till it happened again sometime... Few weeks back, I was back in the ICU. Enjoying the pleasures of familiar turf. After

When I sit on the wheelchair in the evening, I move my right leg a few times. The leg will be lying lifeless. I can't feel it or move it initially. I have to lift it a few times using my left leg and move it a few times. It sometimes responds and sometimes not. If it doesn't work, I have to leave it alone for sometime and try again later. At some point it stiffens when lifted. It still doesn't know how to loosen - so have to rely on gravity to bring it back down slowly. After that, very slowly, I am able to lift it a few times - relying on gravity each time to bring it back down. It's a amusing thing to experience and watch happening. However, that is what I can see. The real action and spectacle is happening in the brain actually. When I am unable to feel the leg, the neurons are not connected. The passive movements and the intention means it is causing the neurons to frantically be trying to find a path - running helter-skelter, through trial and error each time. Some

Many years back, I had read this book called "Man's search for meaning" by "Vicktor Franknel" He was a holocaust survivor and a psychologist if I remember right. It is about why few folks survived the extreme circumstances of the holocaust and most could not. It's a very good book - highlighting the need to find meaning - a sort of a purpose to struggle through everything. I have often tried to think of what is my purpose. How do I find meaning through all this - the hand that life has dealt. The truth is I am yet to find that answer. Sure there is a role I am playing - a husband, a father, a son, a brother, a friend to many, so on, and those roles I am trying to fulfill what I can. But I have found no bigger purpose or meaning. There probably is none, I am not sure. Everyday is the same - wake up, feeds, physio, feeds, exercise, feeds, sit on wheelchair, exercises, feeds, move back, bath, feeds, sleep.  It is peppered with bathroom breaks and cleaning as ne

This evening was very nice. We had a few very good friends come home and spend the evening with us. We spent a few years together overseas almost 1.5 - 2 decades ago. We would meet almost everyday and catch up often. It was good old times. Afterwards, we have been close and very much in touch with each other, but life has happened. Everyone is somewhere doing something. This evening was lovely to catch up as a group and talk about old times and recollecting stories. It was a very strange feeling. Since I can't speak and was not actively participating, it was like I was watching and reliving those days/ times. I was only reminded of the current times when one of the daughters interrupted. I was not wanting it to get over. Unfortunately it was 9pm and time to go into my room. It is the time that reality hits me and I am back to me bedridden self. I could have stayed longer. Nobody asked me to get in. I can physically sit for longer. But every activity (clean, bath, change, feed, nebu

I got my PEG tube replaced few days back.  Although the one that I finally got is the simple replacement tube, they didn't know till I agreed that I would agree. So, as a precaution, they got me ready for the other type which requires administration of anesthesia and they kept me on a empty stomach. Funnily all the nurses kept referring to it as NBO (nothing by oral). That's funny for someone who is on the PEG only because they can't have anything orally. Anyway, my last feed (reduced already because I had an upset stomach earlier) was at ~ 10:30pm. I am usually fed every 2 hours. The body is used to the regular flow of fuel to keep going. I generally feel hungry by that time in the morning. Even with very diminished feelings, I can sense the hunger. I was not fed before the procedure. They finally did the procedure by ~ 11:30am I think. After the procedure they can't feed for ~4-6 hrs. Post that it is only water (50ml) and very gradual ramp up to about 150ml and only c

I have been watching a bunch of videos about "save soil" recently. Sadguru is currently undertaking a 30,000 km bike ride across several countries over 100 days - to raise awareness of the issue and potentially influence the policy makers to act. I must confess, I initially skeptically watched it - there are so many "climate change" and "environmental issues" and protests etc, I am kind of jaded with them. Watching any one of the videos will make the issue abundantly clear. I have seen a bunch of them - uk, Vienna, chek republic, Geneva... There are a bunch more. It is the same message that is reinforced everywhere -but I am watching each of them not for the message but the line of conversation and audience questions reflect what is on top of the mind in that country/ geography. It's very interesting! Anyway, the ask is to spread the message for the 100 days (now 83 I think) so enough voice is available. So, do see one of the videos to familiarise your

Couple of days back, I (we) had been to my daughter's school. It was for a graduation ceremony that the school had organised. She (her class) was graduating from middle school (grade 8) to high school (grade 9). It was a enjoyable evening. There were the class children, the teachers, the parents, some siblings, few grandparents and a bunch of folks who were close to the children. A small group of people who mattered to the children basically. Before the function, the school had requested that a couple of parents speak on the occasion. I wanted to speak and say a few things. But I can't speak. I had the words, but no voice to convey them. I requested a dear friend and co-parent to be the voice for me. He kindly agreed. He not only delivered the words, but did a better job than I would have with the tone, expressions, body language et-al. I am very grateful to him for doing it for me. When I was a boy (maybe 3rd or 4th grade I think), I was enrolled into a debate competition in s

Yesterday, we briefly lost our dog! That must sound very funny - we normally use a dog to find things we have lost! 🙂 Anyway, we stay in an apartment - well above ground.  She is very much a home dog - since it is an apartment and nowhere to go. She is quite cuddly with known folks but very loud and fiesty with strangers. When she gets to go for a walk, it is strictly on a leash. I imagine her wondering where everyone goes everyday for hours. Her world starts at ends around the apartment complex with her walking rounds. She may be concluding we humans are totally mad to go out often for the same rounds for hours. It is understandable she is curious, wondering if there is more to the world. Naturally, whenever we open the front door, she rushes out, sniffs frantically around the lift lobby and runs back inside into the safety of her kingdom. Yesterday late afternoon (probably around 3pm), we had a few folks over and in the commotion had left the front door open. I don't exactly k

Every so often, someone will tell me I am looking sad, or worried or something else to the same effect. I don't know what my face looks like then, I have checked with the selfie camera - can't tell anything. Maybe if I need a shave or so... Then I am told I should not worry, I should be happy and cheerful. I think everytime - to be happy and cheerful all the time; I am sure it is a challenge for anyone even normally, why do folks think I can be Hakuna Matata in my state...

Well, I promised to let you know how it ended... For the past ~2 weeks, I have been doing back and forth on email and WhatsApp with the crowdfunding platform. I have interacted with many folks from many groups - campaign manager to generic support to escalated support to review team and every other nonsense team. The first thing each time is "please send us a selfie video explaining the campaign holding your aadhar card". I wonder if anyone had read the campaign ask! I have to start each time saying this is my condition, blah blah blah.. i can't take a video.. blah blah blah.. That's when they would not know what to do and pass me to someone else. Anyway, the last but 1 interaction was a little encouraging. They said, if I can't speak, get a friend or relative to do the video and explain the campaign with both our aadhar cards. I said what is the use of someone parroting the words which I give. Anyway , I said ok and I needed a few days to coax someone. I was cont