20210906 : my Demons

This has taken me the longest time to put it together - had to visit many dark and uncomfortable alleys along the way. It was not easy.

 

It is also my longest note till date. 

If you are in the middle of something or just planning, good idea to deal with it first.

*******

Sometime back I made a reference to my "Demons". I will attempt to describe them here. Some of them are well and truly slain, some dormant, lurking in the dark corners and make their presence felt unexpectedly, when I am least prepared for the fight . Some, I am waging an ongoing battle. And many more yet to be encountered in areas I have not yet ventured into.

I actually feel many of them are not big burley creatures but single celled like the virus. It eats you up from the inside. No known vaccine also here . You simply have to get infected by each variant to gradually build antibodies and hopefully, immunity at some point.

So what I have listed is a kind of unordered list - as I could recall. It's not chronological except the first one. 

So here goes:

***

The earliest that this one presented itself was maybe 6 weeks into my stroke. I don't remember anything of the first 4 weeks anyway and it probably took another 2 weeks to become oriented and understand what had really happened..

It's the "Why Me?" Demon. 

I don't think any stroke survivor can avoid this. it's the constant question that rings in the head? You think of your life trying to find an explanation. In my case, It seemed unreasonably disproportionate to anything I had done. It can drive one mad! 

I can say with some authority there are no answers to be found. I feel if one has a strong faith and a belief in some God, this will be a very painful and a very long drawn battle. 

If you believe a God, its very unlikely you wont question why was I deserving of this punishment? If you subscribe to karma, you still cant fathom, what did you do to be proportional to this price to be paid. It may be another life, but if you subscribe to karma, you have to automatically believe in reincarnation. One may not remember other lives, but you know it was the same you who did something so drastic to deserve this. It is a very horrible feeling to have to live with.

Eventually, it's a lot easier to let go of all beliefs and to find reason in randomness. That it was all unplanned and just bad luck and I pulled the short straw. Any further search will lead to more misery.

Faith and belief may help in the later phases of recovery maybe.

The other thing is, who else?. If not myself, who would I nominate. Ya, there are many who I might think maybe qualify, but I don't really know them personally. Amongst folks I know, who would I nominate to stand in on my behalf? That thought is unable to bear. Not anybody. 

Then you can put your mind at ease.

We wear many cloaks for protection. Many we are not aware. This disrobed the 'ego or self-centred' cloak I guess.

 **

One of the very first things I realised when I could, is that I was wearing a diaper. Everything I held private all my adult life was stripped off.

 

The "shame" demon had presented itself.

Multiple nurses, multiple ward boys, many doctors, all day, everyday.

To be cared for this way, by young girls, less than half my age.

The most embarrassing thing, is my erections. It has nothing to do with what I think or feel. In fact I won't even know till the diaper is opened, as I can't feel much.

My welcome message to my nurses who come home is a profuse apology for this physiological behaviour, explaining my condition and for causing any discomfort to them (most of them don't even know what is wrong with me or what a stroke is).

And off comes the 'shame' cloak.

**

I have lived as much as possible with self help. What I can do myself, I would and not ask others. That was my usual way. I considered myself more a 'doer' than a 'thinker'.

And one day, I realise I can't move as much as a feather.

I can tell you, the "Uselessness" demon is very overwhelming. It comes swiftly and takes away the "Self sufficient" cloak.

**

For a short time, I battled this demon. I will call it "guilty of cause".

All I had heard earlier was that stroke was because of lifestyle. So what did I get wrong? Sure, I could have worked a bit less, relaxed a bit more, etc. It ate me up thinking maybe I could have prevented it by living better. 

The leading theory for my stroke is that I would crack my neck often. (If you have seen me do it, you will know what i mean). So many folks had told me, in jest, that someday my neck would break or the head would come off.

I guess it did eventually.

So a lot of guilt for not having listened, of not acting responsibly.

The witch hunt went on.

It subsided a while ago. I don't remember doing anything particular against it. I guess after a while, my mind just got tired of the self blame and just let go.

**

This demon, I would call just plain "Guilt". Guilt of consequences.

I have found it very hard to not think what all this has led to. I can't begin to list them. There are so many. Most of which wouldn't befall everyone around me if the story ended back with the stroke. The guilt of having survived is very heavy.

This one is not slain completely. Shows itself every now and then. I haven't worked out an effective antidote either.

I haven't had victories in these battles either. So the battles continue ...

**

Ever since I came out of college and started my job, I have been a provider. I used to love that status/ responsibility. I was de-thrown overnight.

The "you no longer contribute" feeling gets a while to get accustomed to. It doesn't go away, I have just made peace with it. A truce of sorts...

I guess that is one of the reasons i play 'fastest fingers first' on Amazon sometimes.

A cloak with similar name "i am the provider" comes off.

**

When I had the stroke, I was a little okay as everyone around was saying it's no big deal, I'll become ok, etc. etc. After all, I was with a very capable neurosurgeon, an excellent hospital, well known rehab specialists, etc.

 I honestly thought I would walk out of the hospital. Days turned into weeks, weeks into months. Finally they said I would be discharged and sent home. I was given to understand it was a better environment for recovery. 

But all the time I had a voice telling me "they have given up", "nothing more can be done", "you have to live for the rest of your life like this", etc, etc.

 I had given all I could for 5 months. It was a crushing "defeat". It was a truly hopeless feeling. Almost every situation previously seemed to have a chance for a comeback. There seemed to be no 2nd chances with this.

The other thing that made it worse, was everyone all the time saying "A strong mind will heal faster". Many variations of that. I had made no progress. I had a weak mind. A weak will. It was a horrible feeling facing this "Defeat".

I don't know when this feeling subsided. But it did sometime. I think after I could communicate via WhatsApp, this went down. Along with the trachiostomy tube coming off my throat at around the same time.

***

As long as I had lived, I had not considered myself "weak".

 I knew I wasn't the strongest cookie in the jar, but by no measure I had felt weak physically.

And here I was, in rehab, struggling to pick up "buttons" or to move children's "blocks" or just even hold something in my hand.

Off came the "I am strong" cloak!

***

All my life I had been very judicious in most things. More so in how I spent money. Everything had to have a pressing case and pass a very rigorous scrutiny. Enjoy now vs future security always played in my mind.

I got my most expensive pair of shoes in hospital - a pair of supporting slippers to prevent foot drop. And that was very inexpensive compared to everyday spent in hospital, the therapies, rehab, etc.

Same after coming home - the nurses, the therapists, the meds and materials,etc.

There was no sense in it, for what was being tried to be salvaged. I could see my family, come to streets at this rate. I felt miserable. I felt like screaming "just cut and run.."

This "financial insecurity" demon haunts me regularly. The business case has not yet been passed..

It's a good thing I am not able to work on spreadsheets now!

** *

Most of the time, when I am lying in my room, I am able to hear things from outside. Some talk, some argument, some joke or laughter, etc. Nothing big happening out there, but I feel very deprived of participating. Not some big things, I am always included in all of them - birthdays, pujas, etc. Not the big things. Just day to day simple things in daily life. It's a wretched feeling to not be able to participate. To face the "I can't join" demon. 

Everyone does their best to include me. But there is a limit to what I can do or anyone can do.

I have a simple solution for this now. I have the tv playing all the time with high volume. Even when I am not watching. I can't hear anything from outside now.

 It still hurts when I am outside. But better out than in. So the fight goes on...

***

Next one is "Despair". It's a very anxious and uncontrollable feeling and emotion. It almost always results in me breaking down uncontrollably.

it hits you, when you realise you are no longer in the regular turf, medical turf - where a drug or treatment can cure your ailment. It hits you that you are in the territory of hope, belief, faith etc - Miracles territory basically. You tend to lose it. 

I haven't won anytime here. I just have to avoid the thought and of invoking it. It is a sure shot loss every time it shows up. It does still appear every now and then.

***

I would just call this simply "Killjoy".

I have been a sports person all thru. I have never enjoyed watching any sports but in playing them - however bad I would be. I just used to find joy in playing. It was lots of basketball earlier but getting so many other people was not possible always. so I did badminton, squash, cycling, running, etc. I was not very good at any of it. It didn't matter. I just found joy in playing ... 

Playing was very far, I could not even dream of walking anymore..

I loved riding my bike. There were many practical things in it's favour against other modes of commute/ travel, but I just simply loved riding. There have been many occasions when my wife and I have left home together and gone to the same place - she in the car and me on my bike. 

Bike was very far, I couldn't even dream of a cycle or anything that needed a sense of balance...

I loved cooking, baking ,mixing drinks. I wasn't great at any of it. It didn't matter. I just found a lot of joy in it, in trying and experimenting things, in offering to others. 

Cooking was very far, I couldn't even hold a spoon or taste or smell anything...

There are many more. It was just the joy of things. Things to energize you, to fuel you for rest of the day...

It's a very gloomy feeling to think you can never again do the things you love doing.. it comes every now and then to remind me of the loss...

This feeling has contributed most to realise the value of what I once had and took for granted...

***

I encountered this everyday all the time after coming home. The "Suicide" demon.

I'll be very surprised if anyone in my condition can successfully avoid this . I had no reason to battle this.

 

I think for the 1st 18 odd months, this is all I somehow managed to convey to my wife. I used to wake her up everyday to variations of "kill me", "i don't want to live", etc. I don't know how she dealt with it...

In fact, there was no battle. I had whole heartedly embraced this thought.

There was only one technical problem. "How?".

As much as I could think of any method, I would not have been able to execute it. Give me the most potent poison and I can't swallow.

It has to be pathetic to be convinced of the thought, willing to do it but unable to see it thru.

I can guarantee that my life continues still only because I couldn't end it.

Over a while, this demon has just made it's visits infrequent.

If I had a metaphoric plug in my hand today. I am not sure I would have the same conviction/ courage to pull the plug myself. But I still will be very grateful to someone else or a natural cause to pull it.

Nowadays, I feel like it mostly when I have very bad cough due to bad aspiration. Most of the time during my oral trials. It is unbearable, to not have voluntary cough, not much strength to cough up things till the mouth. No muscular control to prevent violent movements,etc.

If I have that plug then. I will definitely yank it.

Strangely enought, I think my life is defined by my dying. It's the line to cross . If I gain enough physical ability to take my own life, that will mean I don't have to. I will also have enough strength and ability to live. I am right now only existing. Not living...

As a general note, my story is my story, but I would presume many survivors go through this. I don't remember a single conversation by any qualified person in the hospital to help deal with such thoughts. 

I think I got some antidepressant tabs and that was it. It didn't help in any case. It is a very sad state to think, what if folks can actually see it through. Especially because most stroke survivors can't even think straight in the first place...

***

I'm not sure what to call this one. Its "anger", "irritation", "impatience", many things in one. It was not caused by anybody around, but they sure were the recipients of the fruits. My wife has been the biggest benefactor.

I'm not sure what it was, I would get very irritated with everything. It just felt not enough. Eg, my wife would visit me everyday in the morning at the hospital. I would get very upset and irritated if she was a little bit late. Even few minutes. Early morning, kids to be readied for school, get ready herself, hopeless traffic across silk board, etc. It didn't matter. I just couldn't think rationally.

That's a small example. There are so many more. All trivial..

I think this phase is over. I don't know.

I think over time, the cloak that has come on is that of "patience".

***

I think my mindset and my work over many years had made me into a planner and controller . Everything had to be planned to perfection and everything was done to stick to plan.

Oh well..., The stroke rendered all planning useless anyway. 

The small things too bothered me a lot if it was not done the way I wanted it to be.

The nurses in the hospital have driven me up the wall. So have they at home later. And these were the days I could not communicate.

I guess it's a demon to "control" everything. I must have driven folks crazy at work!

Anyway, over time, the cloak of "preference" comes off and I think I got an cloak of "acceptance" instead I guess ..

***

Earlier, I used to get very overwhelmed and cry a lot when I saw food. I have been deprived of eating for years. The 'craving' demon was too much to handle. I remember earlier everyone would make sure they don't eat anything in front of me, lest I break down. I used to feel so bad to see my younger daughter having to hide her snacks and eat them.

My own behaviour and knowing I was the cause for so much discomfort was too hard to handle.

Over many months, many MasterChef seasons, innumerable YouTube videos and I think I have successfully tamed it. I have numbed my mind enough to not react to the sight of food.

However, in recent times, it's brother has started bugging me. I can't avoid the craving feeling when I get the smells. It has to be strong as my sense of smell is very diminished. Sometimes when I can smell the garnishing on curries, sometimes when the coffee is brewing, sometimes when popcorn is being made, etc.

I don't know what I can do either. With sight I could find a solution. But smells ...

***

This is probably just frustration. But "frustration on steroids".

Whenever people visited me, I would cry. Simply because there was so much to say, but no way to say it. I was crying out of this frustration. Even when folks were discussing something. I had many things to contribute, but no way to.

The silence was defending.

Over time, I think I have conquered this. I have become very good at smiling back if I am asked something which is not a closed ended question where the answer can be yes/no and I can nod accordingly.

It's so funny when I ask someone, with a twist in my left hand to indicate "yen samachara" (what news?)

Mostly the answer is - "yenoo illa" (nothing). "Can't go anywhere, can't do anything, can't meet anyone, etc."

I smile back again 🙂...

***

This is just the "itch" demon.

It feels like just another frustration. But deserves a special mention.

In the initial months, when there was little or no movement, there was no way to scratch. That seemed like just the perfect turf for the itch monster to play unchallenged. There was no ability then to even point and ask someone to scratch. On my face was the biggest culprit. Frustrating is a very mild emotion to describe it.

Just had to ignore and hope it went away soon.

I won't be exaggerating when I say, this has taught me more about patience than anything else in my life.

The coverage area has improved quite a bit. But there are still many unreachable or inaccessible areas even today...

It gets very itchy because I am in the diaper 24x7. At the same time I can't scratch because I am wearing the diaper 24x7. The diaper catch 22..

And we wonder why toddlers cry sometimes for no reason...

This is even more funny. I feel itchy many times on the back or waist or my bum. But I can't scratch as I am lying on it all the time. Even when I am shifted on the wheelchair it's not accessible. The only time it is exposed is when the nurses give me sponge bath or to change. My bed in the room is against the wall on the left. So they have to roll me to the left side so the backside is exposed. It takes about 10 minutes. But unfortunately I can't do anything as I am rolled to the left and my left hand gets pinned down.

They have to roll me to the right, to arrange the sheet, the underpad, diaper. It takes 30 seconds. That's my window of opportunity..

Most of the time, the itch will have long gone. But I scratch with a vengeance. Simply because I can and leave the nurses wondering why I do it everyday, even though they can't see any rash or anything. They don't know it is revenge 😂

***

This is a very strange one. Mostly when I could not communicate. I don't know what to call it.

Earlier, When I was ok, I was very hesitant to accept any help. Even for small things. When someone did something for me, as much as bring a glass of water, I would feel very thankful and would convey so.

Here I was, getting my ass wiped everyday, and no means of saying thanks or conveying it.

I think the feeling maybe came from some amount of arrogance than anything else - that I didn't need help. 

It has been very humbling, to break down that feeling and "accept" service with humble "gratitude".

***

This is something that eats me up often, almost everyday.

Right from my school days, if I could grasp something and others needed help, I would try my best to explain and try to convey things so they could understand it better.

I used to consider myself a teacher of sorts. And I would find a lot of satisfaction in doing so. 

Few days back, my younger daughter was stuck with some concept in mathematics. There was no one else at home that time. She asked me a few things, which I could not reply. She had to take my vague nods, make her own assumptions and go on.

I could feel the knife deep in my heart.

This goes on almost everyday, with both my daughters.

I used to get so much satisfaction in teaching everyone but unable to do so with my own kids when they need help. 

I don't think I will be able to get over this ever ...

***

When my wife or kids or my mother or someone close falls ill, I hate not being able to provide care. I know, someone will do it and it'll be taken care and things will be ok. But it's not the same thing. It's the helplessness of not being able to provide care myself.

This "helplessness" feeling is very difficult to explain or describe. Don't know what to label it as...

***

This sounds like the one above, but it's a very different one and feeling.

It6s maybe the culture, maybe upbringing, or something else I don't know.

Over the years, a sense of "duty" has grown stronger. Duty as son, duty as husband, duty as father, duty as brother, duty towards close friends, duty towards larger family, etc.

Right when I could understand it better, I was rendered unable to. I know, everyone will be fine, somebody will do the needful. But the hollow feeling of not doing my bit, is miserable.

My dad was a posthumous child. As far as I remember, and till he passed, he did the ceremonies for his father who he had never seen. I don't remember him missing it ever.

 It was not a conscious thing, but I had assumed I would do the same when my turn came. And the very first year, here I am, lying in bed, unable to do anything...

***

 That's as much as I can describe. 

There are some which I struggle to make out myself. Maybe they are just a combination of the above. I don't know.

It reminds me of a cute and animated movie called "Wish Dragon". I know that if a wish dragon popped up, I won't be struggling with rich and lofty wishes, but struggling with a choice of very basic ones...

I also mentioned about various cloaks that have come off . Unfortunately, I still wear my cloak of thinking. I may not be the smartest, but I also know I am not the dullest. This brings a sort of smugness, some cokey-ness if you will. A kind of arrogance.

I am waiting for the demon I don't know yet, that will bring me to my knees and take it away...