20250625 - improvements...

 I have had a couple of folks (friends & family) come home in the past few weeks. Visiting after a few months - after about 6+ months at least.

They have all remarked that I have improved.

Now it could be 2 things:
 
1. They are just being nice and making conversation
2. They are telling the truth and they actually see some improvement

I'll give them the benefit of doubt that they are indeed seeing something that has improved.

When most folks come home and see me, I am not lying on my bed in my room but plonked on the wheelchair and in the living room. I have a pillow on my legs to cover the mess that happens underneath and I will typically be pushed to the dining table so waist down, nothing is visible really and they get to see mostly my face and upper body with only my left hand moving.

So, it leaves me wondering what improvement are they seeing?

When I had my stroke, my face was very very disfigured as most of my facial muscles couldn't move and most of them had spasmed . Over the years, some of those muscles might have released from the spammed state and probably my face is looking slightly better and hence giving the impression that I am generally better.

Isn't it an improvement nonetheless? Most certainly it is! There have been other improvements too - which are not very visible and there have been many other areas getting worse - also not visible. But I do acknowledge the improvements.

Note - the % numbers I have mentioned below are only to convey and illustrate a point and the numbers are not scientific by themselves. Please ignore the actual number and focus on the point I am trying to convey

Thing is - let us say a person who is in ideal health and abilities to lead a ideal life is at 100%

I reckon most normal folks reading this are probably running at 80-85% (given the usual issues with lifestyle, activities, eating habits, etc). But they are generally very healthy and independent with all activities. I guess it may be 80-85%.

Some folks have illnesses.  I am not talking about transient stuff like cold, fever, loose motions, etc etc. which comes and goes for everyone. Some folks have chronic illnesses (like BP, diabetes, liver function issues, migraine, etc). They are limiting no doubt but controllable with regular medication and some conscious changes in lifestyle and diet. It is still limiting though. But with the corrections mentioned, folks can live a dignified and independent life. I take away 10% and say they are probably at 70-75% overall.

Some others have more severe conditions, some chronic or not easily reversible - like cancers, kidney issues needing regular dialysis, etc. it is far more limiting compared to the case above and might need assistance and some dependence on others as well. However, they are still able to have a dignified life and can do most things by themselves and are independent mostly. I will still take away 15-20% more for the condition. So, probably 55-60% overall.

Lastly there are many others with very limiting disabilities - like a blind person, or crippled etc. it is not a guarantee, but a broad brushed generalization that other facilities tend to overcompensate the disability and might still be able to lead a dignified life even though heavily dependent on specific things. Let me take away another 10-15% for it. So about 40-45%. That's the bare minimum I guess.

In all of the above, I am assuming the person is mentally sound and the % ages I have mentioned are for the bodily functions to support the mind only.

When I had my stroke, from a bodily functions point of view, I was taken directly from the 80% I said to ~2% overnight. (I'd say 0% is dead and 1% is coma. hence ~2% as i was as good as come bodily but my mind active)

Over the 6+ years now, that needle has moved from ~2% to about 8~9% in my very honest opinion. There has been a very slow and gradual improvement over the years. I actually would say, it probably has gone to 10% but the past 1 year, it has definitely gone back to the 8~9% mark again .

So, while there is very definite improvement from 0-8%, in absolute terms, it is so far away from the ~ 45% mark which is required for living/carrying on any dignified life for anyone.

As I said, the brain and body have very practically gone backwards in the past year and I am sure it will not get beyond the 10% mark I mentioned ever. No matter what I do and for how long.

I still get physiotherapy 6 days a week and SLP therapy 3 days a week and do my walking, standing & other activities daily. However, my approach to the sessions/ activities have changed drastically for some time now. I don't do any of it anymore hoping to get better but it is just a maintenance activity to keep the engine greased and running for as long as it runs I guess...

But it is extremely difficult & a brutal punishment to the body each passing day trying to survive with all the difficulties.
It is brutal torture to the mind ea​ch day not being able to express effectively, not being able to eat & drink, not being able to do things I want to do, etc.
It is a brutal torture for everyone around sacrificing their life, freedom & possibilities shackled to me. Nobody around will accept it and tell it. but I know what I am causing.
And, it is costing real resources for the maintenance activity. The financial time bomb is ticking away. The wick to the bomb has gotten short, making me seriously question the practical cost/benefit of the regular maintenance activity to keep this body alive.

I know, these things can't go on for long. Somethings gotta give. I am just watching and waiting to see what will give way first.
But, something has to give soon...