Work in Progress

 I have an oversimplified daily routine. Yet my day can turn out to be either one of the following. 

Something somewhere goes wrong. I get irritated or disappointed or sad. As a result I cannot eat properly or drink water. I get more frustrated. As a consequence I can't sleep well and wake up cranky the next morning. Leading to a vicious circle of bad days. 

Or it could be the other way around. Most things go well. I can eat well and stay hydrated. I can sleep relatively well and start off a virtuous circle of calm days.

This election season I vote for Peace of Mind and am consciously trying to have more days of the latter kind. After all, what is the use of all the education and corporate exposure if I can't apply the learnings to the most difficult situation of my life? In fact this should be a milestone that we all must strive to achieve as shown here in my drawing from few years ago.



But there are a few challenges. Firstly the base level of frustration is already high in ALS patients. Wouldn't you be frustrated if your whole life was thrown out the window and become dependent for basic human needs like eating? Secondly ALS affects a person's ability to process emotions. I often imagine my brain to be a huge ball of entangled wires that are poorly insulated and often short circuiting. The result is all my emotions get amplified. Even when I mean to just smile it comes out as a laugh. I am anyway holding back a dam of tears all the time. So watching something emotional on TV or a snide remark is enough to make me cry. Loved ones just need to understand that this is not our true personality. It's how in Spider-Man 3 Spider-Man's behavior changes after wearing the black suit. LOL.

So I decided to find out the trigger events that could be the difference between a good day or a bad one. 

Transfers 

I have twelve to fifteen transfers each day. I am always panicking during a transfer because it is risky. However I have had a revelation. Humans tend to mirror emotions. So if I panic, everyone around me does too. That is why I am trying my best to not panic or at least don't show it externally.

Meal time 

I can choke easily on food so I have to swallow with a lot of focus. I avoid chit chatting or laughing while eating. Watching comedy shows are a strict no no. How stupid it would be if my epitaph read Died from choking while watching Stand up Comedy. News or sports channel it is then.

Communication 

Tobii can't be used in every situation. And it causes me great amount of irritation when I can't get my point across. So I have come up with a personal rule of making three attempts of explaining my point, or let go of the point completely. Don't sweat over the insignificant things.

The truth about ALS is that it requires us to be a constant work in progress. We need continuous improvement if we want to achieve peace of mind. Until then I will keep trying to channel my inner Master Oogway.

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