20210206 : my 2nd Strokeversary...

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, i have some movement of left hand from elbow down, minimal movement of left shoulder and toe and ankle movements of left leg. Right side still no movement. I can't yet speak and can manage to swallow some liquids. Still aspirate and cough a lot. Got rid of the trachiostomy tube only 2 months ago. Feeding via peg tube.

The most liberating thing in the last 2 years, happened about 4 months ago, when I could place the phone on my left thigh and use my finger to message. Till then I was in a cage in my body without being able to communicate and express what i was feeling, thinking or going through... Everyone around me was doing their best to help me with a best guess on what was comforting. Now i can express to them via whatsapp. Its still painful and very slow. Longer ones (like this one) takes many sessions across days to complete my thoughts,

Thank you everyone in this group for sharing many aspects of this battle, which we would be unaware otherwise ...

I am extremely grateful to my very strong wife, 2 young girls, my close friends and family who have been exceptionally patient, their love and care and looked after me to date, haven't given up (even though I have felt so many times) and brought me to this improved state...

So the battle continues.i know it will be several years. But I have hope....

Now, this is a disclaimer to what follows. Its only MY thoughts, feelings and observations and need not be the same for everyone. In that case, please take it with an ample amount of salt and just ignore and discard...

1. Over the 2 years, we have done holy waters, blessed medicines, holy oil and massage also many more accepted things like Accupuncture, magnet therapy, ayurvedic stuff, homeopathic meds, etc. Some or many of the things may be working for many of you . However, my advice to every stroke warrior is, irrespective of the beliefs and stream of medicine you follow; please don't ignore regular Physio/ OT and Speech/Swallow therapy for consistency of progress. Everything else (for me) has only raised expectations to my disappointment..

2. I have seen countless memes everywhere and very well meaning folks encourage me with stuff like "Have strong will power and it will get ok", "be determined", "strong mind will hasten progress", "Make up your mind and everything will be ok", "You have age on your side, someone else older recovered fine", etc. On similar lines...

While all these was sounding encouraging in the moment, over a period of time, because the healing process is slow, it was subconsciously sowing a big doubt whether i wasn't strong willed, whether i was not strong mentally, whether i wasn't try or doing enough. This was very disturbing and discouraging.

In my stints at 2 hospitals over many months, i have seen several stroke warriors affected to various degrees in various stages of recovery. I have not seen anyone not willing or trying their best to climb our of the situation they're in. So my request to all type of carers is: please choose your words very carefully. Also, every stroke is different. It may be called same (for ease of grouping and nomenclature), but the physiological impact of the stroke is unique. Each one is fighting their own battle. Please don't compare...

3. In many sessions in the hospital, i was repeatedly being told to have goals over periods of time. This sounds fine generally. However, its very defeating when it doesn't happen as you desire. I have realised (rather painfully) that this approach hasn't worked. After all we are growing new connections in the brain and it takes whatever time it needs to take for everyone . Yes, therapists should have goals which they are trying to achieve as outcomes. But survivors need to not be very hard on themselves for it. It has worked best for ME, to not have goals, but a consistent effort an outcomes will come .. slowly but surely..

This state of my life, has made me truly appreciate the meaning of "कर्मण्येवाधिकारस्ते मां फलेषु कदाचन'"...

Have a great day folks....